We saw Dr. Rifkin today and went through the results from the bone marrow biopsy and the bone scan. The transplant is categorized as causing a minimal response. In fact, the degree of cancer/plasma cells in my bone marrow is around 30%, which is what it was in early October, in late August, and early August. We started in late March at 65% so there has been some progress, albeit all prior to August. In essence, the transplant didn't work. So, I will be starting with a new drug: velcade. This chemo regime is part of a clinical trial for which Dr. Rifkin is the principal investigator. I will start in mid January. I receive it through a shot given IV every 1st, 4th, 7th and 11th day--which consitutues one cycle. then a week off. I will go through 4 cycles, which will take about 3 months. The potential side effects include neuropathy (tingling and shooting pains in feet, hands, legs), nausea (which can be dealt with with medication) and low platelets and/or white cells, which they can also deal with. They will monitor my response every 2 weeks. I will also continue with the zometa, and received an IV of that today. As a result of going on the velcade, however, I will have to postpone the prostate surgery as the velcade would intefere with the healing from that surgery. So, I got another shot of the lupron today (hormone). So far, that has been effective in holding back the spread or growth of the prostate cancer.
Dr. Rifkin also said that if my response to velcade is good, then we are probably looking at another transplant in 6 months or so. This time he would like to use stem cells from one of my siblings. So, Mike, Tom and Kathy, you can expect to receive in the next month or so a testing kit or directions or something like that, to ask you to get your blood tested to see if any of you are a match for me. This is called a mini allogeneic transplant and although not as risky as a transplant from a stranger it is still much harder on me than the autologous. But, so be it, if that is what is necessary. I'll just have to work out a little more at the health club before the transplant to get in better shape.
There is a small bit of good news in all this. First, the skeletal survey (bone scan) does not show any further lesions or invasion of the bone by the myeloma as compared to the survey done in August. That survey showed two small lesions in each humerus, which were of no concern to Rifkin. I also learned today that, although I have a genetic abnormality that is at least partially the cause of this myeloma, it is not an abnormality of chromosome 13. An abnormality in that chromosome results in a very poor prognosis. I have known about this for some time, but quite frankly have not wanted to ask my doctor, for fear of the news. But today I asked and got the right answer.
So, I have some work left to do. Susan is quite understandably upset, but doing OK. The girls are also upset but their positivity will return shortly I am sure. (they are both curled up napping on the sofa next to me--wanting to stay close I suspect--this is so hard on them; they are quite understandbly scared, but want so desparately to be strong and supportive for me. As I have said before, this is one of the most painful parts of this--seeing their Dad struggle with this disease) We all know that this is a long road, and sometimes our hopes blur that fact. It has been difficult and I think we would all like a break from the underlying stress of it all, but that does not seem to be in the offing at this point. But, I am still feeling fairly well and hope that I can continue with my health club regime and just being able to go about my life as best I can. Stick with us and someday we will look back, shake our heads at the ordeal we've been through, and tip a glass of wine to our endurance, stamina, perseverance, friendship, love and support. I love you all, and I have confidence that this new year will bring unexpected blessings to us all. Dan
Wednesday, December 28, 2005
Tuesday, December 20, 2005
A Christmas Letter
We have traditionally (at least once every two years) sent a "Christmas Letter" to many of our friends and family at this time of year to bring them up to date on the happenings of our family during the past year. (We still will call this the Christmas letter, even though it may no longer be politically correct) We know that all bloggers have a sense of what this past year has been for us, so we will skip the details of my ordeal and provide the brief summary: 5 hospitalizations, 2 back surgeries, 4 rounds of chemo, 6 to 8 blood transfusions, and, oh yeh, a stem cell transplant. But I am doing better than I have in many many months. I am driving, going to the health club, going out to lunch, going to physical therapy and generally have more independence than I have enjoyed since June. I still struggle with lack of energy and returning to real work remains an insurmountable task. Most recently I just had a skeletal survey (xrays of every bone) and bone marrow biopsy to determine the stage of my disease. Results will be reported next week. That has been my world this year--my health. But as a part of this journey my heart has opened wide and I have received and learned love and compassion as never previously experienced. Read the previous blogs for details. I am very thankful for this holiday season, for feeling better, for my two daughters being home, and for the time our family will spend together.
Julia, our 18 year old, started at Colorado College in Colorado Springs this fall. It is a small liberal arts school nestled in a very conservative community. Classes are on the block system, i.e., taking only one class for 3 1/2 weeks, a 4 day break and then start the next class. She is made for college (and getting away from her parents). In addition to doing well academically, she also is participating in 6 intramural sports, as well as skiing on weekends. She is a quick witted, no nonsense, straight shooting young lady. Look out world!
Catherine, our 22 year old, is in her last year at the University of Colorado at Boulder. She is majoring in Finance and International Business and will graduate in May. She already has a job as a research analyist with a pension consulting firm in Denver, which she will start part time in January and full time in June. She is attending college on a full scholarship and has achieved much success in the past 4 years, not the least of which included working as a research analyst for the famed business author, Jim Collins, ("Built to Last" and "Good to Great".) This work has opened many doors for her. As a result she was being courted by firms in Charlotte, NC, Atlanta, GA, and Los Angeles, but she decided to stay in Denver, primarily because of my health issues. This is one of the most difficult parts of this illness--seeing how it affects my girls. I wish they could go about their lives without having to worry about their Dad. Catherine is also learning how to cook under her mother's tutelage. She has spent the last 3 days making Christmas cookies. Julia and I are encouraging her in this pursuit! Catherine has her mother's heart and brings light to our home every time she visits.
Susan is quite simply an angel and the nicest person I have ever met. Why she married me remains a mystery, but I will gladly be the beneficiary of her lack of judgment. I could not have gotten through these past 7 months without her. She helped me out of bed, washed me, drove me to the doctors, and maintained vigil over me during the many months when I was either too sick to care for myself or too disabled from back problems to walk or even get out of bed. She has been a source of strength and support like no other. Her many friends (she makes friends just walking down the street) have also been tremendous support for her and me. She still has her outrageous laugh and is in good spirits these days. She has had to take on the responsiblity of bill paying, supervising workmen, and many other matters that I used to attend to. Now that I am "coming to" after these long months, she finds my involvement to be "meddling" and sometimes, jokingly says, she preferred me when I was sedated. Not really.
So having to face one of life's most difficult challenges this year, we remain strong. We have become a closer and more loving family. We are so deeply appreciative for all we have received from all of you. My health issues have forced us to confront what our lives are about and how we should be living them. It is no longer an academic pursuit. We have learned that a life lived with love and compassion is our most important purpose. You, our friends and family have taught us this. I wish I had the vocabulary, as well as the time and space, to adequately express how deeply I feel about the important role all of you have played in my recovery this year. We give thanks for you, and all you have done for us, and wish you the very best this holiday season.
Love, Dan, Susan, Catherine & Julia
Julia, our 18 year old, started at Colorado College in Colorado Springs this fall. It is a small liberal arts school nestled in a very conservative community. Classes are on the block system, i.e., taking only one class for 3 1/2 weeks, a 4 day break and then start the next class. She is made for college (and getting away from her parents). In addition to doing well academically, she also is participating in 6 intramural sports, as well as skiing on weekends. She is a quick witted, no nonsense, straight shooting young lady. Look out world!
Catherine, our 22 year old, is in her last year at the University of Colorado at Boulder. She is majoring in Finance and International Business and will graduate in May. She already has a job as a research analyist with a pension consulting firm in Denver, which she will start part time in January and full time in June. She is attending college on a full scholarship and has achieved much success in the past 4 years, not the least of which included working as a research analyst for the famed business author, Jim Collins, ("Built to Last" and "Good to Great".) This work has opened many doors for her. As a result she was being courted by firms in Charlotte, NC, Atlanta, GA, and Los Angeles, but she decided to stay in Denver, primarily because of my health issues. This is one of the most difficult parts of this illness--seeing how it affects my girls. I wish they could go about their lives without having to worry about their Dad. Catherine is also learning how to cook under her mother's tutelage. She has spent the last 3 days making Christmas cookies. Julia and I are encouraging her in this pursuit! Catherine has her mother's heart and brings light to our home every time she visits.
Susan is quite simply an angel and the nicest person I have ever met. Why she married me remains a mystery, but I will gladly be the beneficiary of her lack of judgment. I could not have gotten through these past 7 months without her. She helped me out of bed, washed me, drove me to the doctors, and maintained vigil over me during the many months when I was either too sick to care for myself or too disabled from back problems to walk or even get out of bed. She has been a source of strength and support like no other. Her many friends (she makes friends just walking down the street) have also been tremendous support for her and me. She still has her outrageous laugh and is in good spirits these days. She has had to take on the responsiblity of bill paying, supervising workmen, and many other matters that I used to attend to. Now that I am "coming to" after these long months, she finds my involvement to be "meddling" and sometimes, jokingly says, she preferred me when I was sedated. Not really.
So having to face one of life's most difficult challenges this year, we remain strong. We have become a closer and more loving family. We are so deeply appreciative for all we have received from all of you. My health issues have forced us to confront what our lives are about and how we should be living them. It is no longer an academic pursuit. We have learned that a life lived with love and compassion is our most important purpose. You, our friends and family have taught us this. I wish I had the vocabulary, as well as the time and space, to adequately express how deeply I feel about the important role all of you have played in my recovery this year. We give thanks for you, and all you have done for us, and wish you the very best this holiday season.
Love, Dan, Susan, Catherine & Julia
Wednesday, December 14, 2005
Laughter Continues to Be the Best Medicine
Last night I couldn't sleep, so I toss and turn and toss and turn. Susan does the old Jackie Gleason attack on Norton (me), "will you knock it off". Soon, we are chatting,laughing, giggling and wondering how we can laugh so hard in the midst of such chaos. No answer to that question, but our spirits have definitely picked up since a few months ago. Our friend, Gail, had lunch with us the other day and called me soon after to say it is obvious Susan and I are more in love now than we ever were. As Susan says, all my hard edges are gone and I'm back to being the nice guy she married (I want to know who she thinks I was all those years in between, as I am sure I was not as bad as she is trying to create). Our spirits are good as we go into the holiday season.
Saw Dr. Rifkin today and all the blood counts are good: white cells, neutrophils, red cells and platelets are all strong. Bone marrow biopsy is scheduled for 12/20--this will be my 4th. I think I also will have a full body bone scan. We asked that the appointment to review all the "numbers" be delayed until after Susan's birthday (12/23) and Christmas--so we will see Dr. Rifkin on December 28 to see where we are after the transplant. Until then, and even after then, regardless of the news, we will be in good cheer and we wish same for you. Happy Holidays, Dan
Saw Dr. Rifkin today and all the blood counts are good: white cells, neutrophils, red cells and platelets are all strong. Bone marrow biopsy is scheduled for 12/20--this will be my 4th. I think I also will have a full body bone scan. We asked that the appointment to review all the "numbers" be delayed until after Susan's birthday (12/23) and Christmas--so we will see Dr. Rifkin on December 28 to see where we are after the transplant. Until then, and even after then, regardless of the news, we will be in good cheer and we wish same for you. Happy Holidays, Dan
Friday, December 09, 2005
The Next Surgery
Well, we now have a date scheduled for my radical prostatectomy--February 7th. My urologist will be doing the surgery laproscopically so that he expects I will only be in the hospital over night. Recovery is anticipated to be 4 to 5 weeks. I won't go into the details here for those of you who are less curious, but there are, of course, potential complications. But my prostate cancer was diagnosed relatively early --it is Stage II B and is located on only one side of the gland and is not in the margins--all good signs. In addition, while my multiple myeloma was being treated I received 2 hormone shots to contain and prevent any spread of the prostate cancer. In fact, the hormone shots shrunk the tumor, which is also a good result. In light of all that I have gone through over the last 9 months, this next procedure feels manageable. I am glad the surgery won't occur until February as that will allow us to enjoy the holidays.
No further news on the myeloma front; next appointment is 12/14 and I'm not sure whether I will get any new info at that time. We'll probably schedule the bone marrow biopsy for later in the year or first part of next year. I continue to gain strength and am trying not to push myself too hard in the recovery effort. I do try to get the health club daily to walk, ride the bike and occasionally lift weights. I am dragging Susan with me--I think she wants me to go back to work! It feels so slow and some days I get slammed with a lack of energy, which always surprises me. I've also started physical therapy and am getting some help in relieving the soreness and stiffness in the back.
We are so looking forward to having the 2 girls (young ladies) home for the holidays. Susan already has the Christmas tree up and her brother, "Uncle Gary," has sent more boxes of presents than we have room for. His generosity always overwhelms us and this year he appears to have outdone himself.
I'll let you know what happens at next week's visit with Dr. Rifkin. In the meantime, enjoy the holiday spirit. Love, Dan
No further news on the myeloma front; next appointment is 12/14 and I'm not sure whether I will get any new info at that time. We'll probably schedule the bone marrow biopsy for later in the year or first part of next year. I continue to gain strength and am trying not to push myself too hard in the recovery effort. I do try to get the health club daily to walk, ride the bike and occasionally lift weights. I am dragging Susan with me--I think she wants me to go back to work! It feels so slow and some days I get slammed with a lack of energy, which always surprises me. I've also started physical therapy and am getting some help in relieving the soreness and stiffness in the back.
We are so looking forward to having the 2 girls (young ladies) home for the holidays. Susan already has the Christmas tree up and her brother, "Uncle Gary," has sent more boxes of presents than we have room for. His generosity always overwhelms us and this year he appears to have outdone himself.
I'll let you know what happens at next week's visit with Dr. Rifkin. In the meantime, enjoy the holiday spirit. Love, Dan
Thursday, December 01, 2005
Zometa, IGG's, and Physical Therapy, but Feeling Well
Ah, the long awaited doctor's visit. The white cells, although down a bit, are fine, red cells are up and platelets are way up. I received an IV of zometa today, which is a bone strengthening drug. Much more info on zometa is set forth below. The infamous IGG's are unfortunately trending UP, not Down. Went from 2440 to 3200. But my doctor was adamant that I should not concern myself with this, as there are way too many factors that could account for this...including the fact that my body is producing good immunoglobulins which could be counted in this number. He plans to do a much more definite and comprehensive blood test next visit (but not a bone marrow biopsy). Notwithstanding his dismissal of these numbers, I was disappointed as I know he would liked to have seen a downward, not upward trend. I did pull one of the nurses aside after I received the IV of zometa and grilled her a bit more on the numbers. She, who is a straight shooter, also told me they have many patients whose numbers don't move downward after transplant but they are able to control their myeloma with maintenance drugs. It would not surprise me to be put back on the steroid, dexamethasone, which was very effective in my early treatment in bringing the IGG's way down. I don't particularly like my body's response to the dex (shakes, and irritability), but it was quite effective. There is apparently a study by the French that shows this to be an effective measure following transplant. Ah, it is the acceptance of the fact that this is a long voyage that is so difficult at times. I am also going to start physical therapy for my back to relieve some of the stiffness and can return to the health club to try to get back into shape (staying out of the hot tub and pool). I also am likely to have my prostate surgery within the next month or so. Dr. Rifkin asked that I get back in touch with my urologist and get that going. He suggested we might try to do that around the same time as the restaging (bone marrow biopsy, etc.) So, it looks like the holidays may be busy. But I feel better every day and now that I can start working out and going to physical therapy I will probably start feeling even better. Today feels like one of those difficult days. But Susan refuses to be lead down the negative path--"I know you'll be fine and you can't pay attention to those numbers", she tells me. So, I will accept that approach--after a good night's sleep. Next visit is December 14th.
Zometa (zoledronic acid)
What It Is
Zometa® (zoledronic acid) is an intravenous, nitrogen-containing bisphosphonate marketed by Novartis Pharmaceuticals. It was initially approved in the US in 2001 for the treatment of hypercalcemia of malignancy (HCM), also known as tumor-induced hypercalcemia (TIH). It was approved in 2002 for the treatment of bone lesions in myeloma and patients with documented bone metastases from solid tumors, in conjunction with standard cancer therapy.
Zoledronic acid is 100-fold more potent than pamidronate. Because of this fact, the dose of zoledronic acid required is substantially lower and can be administered in a shorter period of time than pamidronate (15 minutes versus 2-4 hours).
What It Does
Zoledronic acid inhibits bone resorption, which is the breakdown of bone by osteoclasts. Although the exact mechanism of action is not completely understood, several things are thought to occur. In the laboratory, zoledronic acid inhibits osteoclast activity and induces apoptosis (programmed cell death) of osteoclasts. It also binds to bone and may block resorption. In addition, zoledronic acid inhibits the increased osteoclast activity and skeletal calcium release induced by various stimulatory factors released by tumors.
How It Is Administered
Zoledronic acid is administered as an intravenous infusion. The recommended dosage in patients with myeloma is 4 mg administered as a 15-minute infusion, given every 3 to 4 weeks. The optimal duration of therapy is not yet known. However, in clinical studies in myeloma, patients were treated for up to 12 months, and patients have received the drug for longer periods of time. Data from long-term administration (24 months of therapy) have been submitted to the regulatory authorities.
Patients receiving zoledronic acid should also take an oral calcium supplement of 500 mg and a multiple vitamin containing 400 IU of vitamin D daily.
Benefits in Myeloma
Zoledronic acid has been shown to be more effective than pamidronate in normalizing serum calcium levels in patients with hypercalcemia of malignancy. In 2 studies that were analyzed together, zoledronic acid (4 mg) normalized calcium by day 10 in 88% of patients compared to 70% with pamidronate. In addition, the median duration of response was significantly longer with zoledronic acid (32 days compared to 18 days). (Major et al. J Clin Oncol. 2001;19:558-567.)
In patients with myeloma, various studies have shown that zoledronic acid is as effective as pamidronate in treating bone lesions. For example
Zoledronic acid and pamidronate each reduced the number of skeletal events and the need for radiation therapy to bone in a study of patients with myeloma. (Berenson et al. Cancer. 2001;91:1191-2000.)
Results of a Phase III trial comparing zoledronic acid and pamidronate showed equal efficacy and tolerability of the drugs in the treatment of bone lesions in myeloma and breast cancer over the period of 1 year. (Rosen et al. Cancer J. 2001;7(5):377-387). Long-term (25 month) data from the study showed that both agents reduced the overall proportion of patients with a skeletal event. However, compared with pamidronate, zoledronic acid reduced the risk of developing skeletal complications (including hypercalcemia) as determined by multiple event analysis by an additional 16%. In patients with breast cancer, zoledronic acid was significantly more effective than pamidronate, reducing the risk of skeletal events by an additional 20% compared with pamidronate and by an additional 30% in patients receiving hormonal therapy. (Rosen et al. Cancer. 2003;98(8):1735-1744.)
Results of a small Phase II study in elderly patients with symptomatic refractory myeloma showed that the combination of zoledronic acid and targeted radiotherapy (Quadramet® [Samarium Sm-153 lexidronam], Cytogen) was an effective palliative option. For the eight patients in the study, one to three courses of therapy with these two agents was sufficient to produce long-term improvement in symptoms, particularly bone pain. (Iuliano et al. J Clin Oncol. 2004;22(14S). Abstract 6737.) Patients received a standard dose of 4 mg of zoledronic acid every 4 weeks and slightly more than half of the standard dose of Quadramet. No severe adverse effects were noted; two patients experienced transient grade 2 hematologic toxicity. Interestingly, M-protein levels decreased more than 25% in 4 out of the 8 patients and were still stable at 19 months follow up.
• Get more information on bone disease in myeloma
Guidelines for Use of Zometa in Myeloma
In September 2002, the American Society of Clinical Oncology (ASCO) published clinical practice guidelines for the use of bisphosphonates in the prevention and treatment of bone disease in myeloma. (Berenson et al. J Clin Oncol. 2002;20:3719-3736.) Upon review of published literature, the expert panel agreed that bisphosphonates reduce skeletal complications and provide a meaningful support benefit to myeloma patients with bone disease.
For patients who have bone lesions or bone loss, the guidelines recommend the use of intravenous zoledronic acid (Zometa) 4 mg infused over 15 minutes or pamidronate (Aredia®) 90 mg infused over 2 hours every 3 to 4 weeks. These bisphosphonates may also be used as part of a pain management strategy. The guidelines recommend that therapy, once started, be continued until the likely benefit is believed to be less than the inconvenience of receiving the treatment or until significant side effects are experienced.
• Get the complete summary of the guidelines for bisphosphonates
Potential Antitumor Effects
Zoledronic acid also appears to have several potential antitumor effects. For example,
It reduces the secretion of the growth factor interleukin 6 (IL-6) by myeloma cells grown in the laboratory. IL-6 is known to play an important role in the growth and survival of myeloma cells
In laboratory studies, zoledronic acid inhibited growth and induced apoptosis (programmed cell death) in human myeloma cell lines
Zoledronic acid exerted antimyeloma effects in mice that had implants of human myeloma cells growing in human bone fragments. (Yaccoby et al. Br J Haematol. 2002;116(2):278-290.)
When combined with dexamethasone in the laboratory, the effect of zoledronic acid on inhibiting growth and inducing apoptosis of myeloma cells was enhanced. (Tassone et al. Leukemia. 2000;14:841-844.)
The drug inhibited angiogenesis (the growth of new blood vessels) in an animal model. (Wood et al. Proc 36th ASCO Annual Meeting, New Orleans. 2000;19:664a.)
It is able to prevent the development of bone disease in a mouse model of myeloma. In this model, treatment with zoledronic acid was associated with a decrease in tumor burden and a significant increase in disease-free survival. (Croucher et al. J Bone Miner Res. 2003;18(3):482-492.)
Zoledronic acid appears to affect bone marrow stromal cells taken from patients with active myeloma, which could contribute to its antitumor effects. In the lab, the agent reduced bone marrow stromal cell proliferation, increased apoptosis, and modified the expression of adhesion molecules on their surface. (Corso et al. Blood. 2003;102(11). Abstract 1619.)
In blood cells taken from patients with myeloma, zoledronic acid induced anti-myeloma activity by activating a particular type of T cell. Zoledronic acid also enhanced the sensitivity of myeloma cells to killing by these T cells. (Mariani S et al. Leukemia. 2005 Mar 3. [Epub ahead of print])
However, it is not known whether zoledronic acid has the same effects in patients with myeloma.
Potential Side Effects
Zoledronic acid is generally well tolerated and the side effects are similar to those seen with pamidronate. Some patients may experience mild and transient side effects, such as fever, flu-like symptoms, fatigue, gastrointestinal effects, or anemia, which may be related to their underlying disease. Although rare, long-term use of the drug at higher doses or zoledronic acid infused in less than
15 minutes can affect the kidneys. For this reason, patients who receive zoledronic acid should have serum creatinine assessed prior to each treatment. In addition, serum calcium, electrolytes, phosphate, magnesium, and hematocrit/hemoglobin should also be monitored regularly.
Upon treatment initiation, dosage adjustments are recommended in myeloma patients with mild or moderate kidney impairment. (See How It Is Administered.) Treatment with zoledronic acid is not recommended in patients with severe kidney impairment because studies in this patient population have not been conducted. In myeloma, the risk of kidney dysfunction may be increased when it is used in combination with thalidomide or drugs known to affect kidney function (ie, nonsteroidal antiinflammatory drugs). There are animal data to suggest there can be a problem when bisphosphonates are administered during pregnancy. Therefore, zoledronic acid should not be used during pregnancy unless a physician feels the benefits outweigh the risks.
Long-term therapy with zoledronic acid appears to be safe. Results of a recent study of 22 patients who received intravenous zoledronic acid or pamidronate for up to 6 years found that prolonged therapy was well tolerated. No significant calcium, phosphorus, electrolyte, or WBC count abnormalities were seen. A clinically insignificant decrease in hemoglobin and platelet count and an increase in creatinine were observed. There were no stress fractures of long bones with prolonged therapy and the fracture rate beyond 2 years was no greater than during the first 2 years of treatment. (Ali et al. J Clin Oncol. 2001;19:3434-3437.)
A number of cases of painful exposed bone in the jaw (a condition called osteonecrosis of the jaw) have been reported in patients receiving intravenous bisphosphonates (pamidronate or zoledronic acid) for hypercalcemia of malignancy related to myeloma or breast cancer. (Marx RE. J Oral Maxillofax Surg. 2003;61:1115-1118.) However, cancer patients in general are at increased risk for this condition due to other therapies they may receive, such as radiation, chemotherapy, and medications such as steroids. (Tarassoff P. J Oral Maxillofax Surg. 2003;61:1238-1239.) Although no cause and effect relationship between bisphosphonates and osteonecrosis has been established, it is recommended that cancer patients take adequate steps to maintain their oral health. This includes practicing good oral hygiene and scheduling regular dental visits. Patients may want to complete major dental procedures before they begin treatment with bisphosphonates. If a dental problem does occur, the least invasive conservative management strategy is preferred.
Ongoing Clinical Trials
Trials are evaluating the use of zoledronic acid as an integral part of a treatment regimen for patients with early-stage or newly diagnosed myeloma to see if it can help prevent or delay the development of bone lesions. An additional trial is being conducted to determine the effect of zoledronic acid on the bone density of patients with bone loss with monoclonal gammopathy of undetermined significance (MGUS).
A study is also being conducted to investigate if lengthening the duration of infusion, in conjunction with increased volume of liquid the zoledronic acid is administered in, will provide renal protective effects.
The combination of zoledronic acid and the targeted radiotherapeutic Quadramet® (Samarium Sm-153 lexidronam, Cytogen) is being evaluated for the treatment of pain associated with metastatic bone disease in patients with recurrent or refractory myeloma.
Ongoing zoledronic acid clinical trials in myeloma are listed in the table below.
Ongoing Zometa Clinical Trials in Myeloma as of May 2005
Phase IV
A Multicenter, Open-Label, Randomized trial evaluating the duration of infusion of Zometa (zoledronic acid) 4 mg IV in Multiple Myeloma Patients with Bone Metastases
• View trial information
UARK 2004-43, A Multicenter, Open-Label, Randomized trial evaluating the duration of infusion of Zometa 4 mg IV in Multiple Myeloma Patients with Bone Metastases
• View trial information
Phase III
A Phase III Randomized Trial of Thalidomide plus Zoledronic Acid versus Zoledronic Acid Alone in Patients with Early Stage Multiple Myeloma
• View trial information
Phase II
First-line Treatment of Newly Diagnosed Multiple Myeloma with Combination of Low Dose Thalidomide, Zometa, and Dexamethasone
• View trial information
Phase I/II
A Phase I/II Trial of Zometa in Patients with Monoclonal Gammopathy of Undetermined Significance (ZOMGUS-001)
• View trial information
Zometa (zoledronic acid)
What It Is
Zometa® (zoledronic acid) is an intravenous, nitrogen-containing bisphosphonate marketed by Novartis Pharmaceuticals. It was initially approved in the US in 2001 for the treatment of hypercalcemia of malignancy (HCM), also known as tumor-induced hypercalcemia (TIH). It was approved in 2002 for the treatment of bone lesions in myeloma and patients with documented bone metastases from solid tumors, in conjunction with standard cancer therapy.
Zoledronic acid is 100-fold more potent than pamidronate. Because of this fact, the dose of zoledronic acid required is substantially lower and can be administered in a shorter period of time than pamidronate (15 minutes versus 2-4 hours).
What It Does
Zoledronic acid inhibits bone resorption, which is the breakdown of bone by osteoclasts. Although the exact mechanism of action is not completely understood, several things are thought to occur. In the laboratory, zoledronic acid inhibits osteoclast activity and induces apoptosis (programmed cell death) of osteoclasts. It also binds to bone and may block resorption. In addition, zoledronic acid inhibits the increased osteoclast activity and skeletal calcium release induced by various stimulatory factors released by tumors.
How It Is Administered
Zoledronic acid is administered as an intravenous infusion. The recommended dosage in patients with myeloma is 4 mg administered as a 15-minute infusion, given every 3 to 4 weeks. The optimal duration of therapy is not yet known. However, in clinical studies in myeloma, patients were treated for up to 12 months, and patients have received the drug for longer periods of time. Data from long-term administration (24 months of therapy) have been submitted to the regulatory authorities.
Patients receiving zoledronic acid should also take an oral calcium supplement of 500 mg and a multiple vitamin containing 400 IU of vitamin D daily.
Benefits in Myeloma
Zoledronic acid has been shown to be more effective than pamidronate in normalizing serum calcium levels in patients with hypercalcemia of malignancy. In 2 studies that were analyzed together, zoledronic acid (4 mg) normalized calcium by day 10 in 88% of patients compared to 70% with pamidronate. In addition, the median duration of response was significantly longer with zoledronic acid (32 days compared to 18 days). (Major et al. J Clin Oncol. 2001;19:558-567.)
In patients with myeloma, various studies have shown that zoledronic acid is as effective as pamidronate in treating bone lesions. For example
Zoledronic acid and pamidronate each reduced the number of skeletal events and the need for radiation therapy to bone in a study of patients with myeloma. (Berenson et al. Cancer. 2001;91:1191-2000.)
Results of a Phase III trial comparing zoledronic acid and pamidronate showed equal efficacy and tolerability of the drugs in the treatment of bone lesions in myeloma and breast cancer over the period of 1 year. (Rosen et al. Cancer J. 2001;7(5):377-387). Long-term (25 month) data from the study showed that both agents reduced the overall proportion of patients with a skeletal event. However, compared with pamidronate, zoledronic acid reduced the risk of developing skeletal complications (including hypercalcemia) as determined by multiple event analysis by an additional 16%. In patients with breast cancer, zoledronic acid was significantly more effective than pamidronate, reducing the risk of skeletal events by an additional 20% compared with pamidronate and by an additional 30% in patients receiving hormonal therapy. (Rosen et al. Cancer. 2003;98(8):1735-1744.)
Results of a small Phase II study in elderly patients with symptomatic refractory myeloma showed that the combination of zoledronic acid and targeted radiotherapy (Quadramet® [Samarium Sm-153 lexidronam], Cytogen) was an effective palliative option. For the eight patients in the study, one to three courses of therapy with these two agents was sufficient to produce long-term improvement in symptoms, particularly bone pain. (Iuliano et al. J Clin Oncol. 2004;22(14S). Abstract 6737.) Patients received a standard dose of 4 mg of zoledronic acid every 4 weeks and slightly more than half of the standard dose of Quadramet. No severe adverse effects were noted; two patients experienced transient grade 2 hematologic toxicity. Interestingly, M-protein levels decreased more than 25% in 4 out of the 8 patients and were still stable at 19 months follow up.
• Get more information on bone disease in myeloma
Guidelines for Use of Zometa in Myeloma
In September 2002, the American Society of Clinical Oncology (ASCO) published clinical practice guidelines for the use of bisphosphonates in the prevention and treatment of bone disease in myeloma. (Berenson et al. J Clin Oncol. 2002;20:3719-3736.) Upon review of published literature, the expert panel agreed that bisphosphonates reduce skeletal complications and provide a meaningful support benefit to myeloma patients with bone disease.
For patients who have bone lesions or bone loss, the guidelines recommend the use of intravenous zoledronic acid (Zometa) 4 mg infused over 15 minutes or pamidronate (Aredia®) 90 mg infused over 2 hours every 3 to 4 weeks. These bisphosphonates may also be used as part of a pain management strategy. The guidelines recommend that therapy, once started, be continued until the likely benefit is believed to be less than the inconvenience of receiving the treatment or until significant side effects are experienced.
• Get the complete summary of the guidelines for bisphosphonates
Potential Antitumor Effects
Zoledronic acid also appears to have several potential antitumor effects. For example,
It reduces the secretion of the growth factor interleukin 6 (IL-6) by myeloma cells grown in the laboratory. IL-6 is known to play an important role in the growth and survival of myeloma cells
In laboratory studies, zoledronic acid inhibited growth and induced apoptosis (programmed cell death) in human myeloma cell lines
Zoledronic acid exerted antimyeloma effects in mice that had implants of human myeloma cells growing in human bone fragments. (Yaccoby et al. Br J Haematol. 2002;116(2):278-290.)
When combined with dexamethasone in the laboratory, the effect of zoledronic acid on inhibiting growth and inducing apoptosis of myeloma cells was enhanced. (Tassone et al. Leukemia. 2000;14:841-844.)
The drug inhibited angiogenesis (the growth of new blood vessels) in an animal model. (Wood et al. Proc 36th ASCO Annual Meeting, New Orleans. 2000;19:664a.)
It is able to prevent the development of bone disease in a mouse model of myeloma. In this model, treatment with zoledronic acid was associated with a decrease in tumor burden and a significant increase in disease-free survival. (Croucher et al. J Bone Miner Res. 2003;18(3):482-492.)
Zoledronic acid appears to affect bone marrow stromal cells taken from patients with active myeloma, which could contribute to its antitumor effects. In the lab, the agent reduced bone marrow stromal cell proliferation, increased apoptosis, and modified the expression of adhesion molecules on their surface. (Corso et al. Blood. 2003;102(11). Abstract 1619.)
In blood cells taken from patients with myeloma, zoledronic acid induced anti-myeloma activity by activating a particular type of T cell. Zoledronic acid also enhanced the sensitivity of myeloma cells to killing by these T cells. (Mariani S et al. Leukemia. 2005 Mar 3. [Epub ahead of print])
However, it is not known whether zoledronic acid has the same effects in patients with myeloma.
Potential Side Effects
Zoledronic acid is generally well tolerated and the side effects are similar to those seen with pamidronate. Some patients may experience mild and transient side effects, such as fever, flu-like symptoms, fatigue, gastrointestinal effects, or anemia, which may be related to their underlying disease. Although rare, long-term use of the drug at higher doses or zoledronic acid infused in less than
15 minutes can affect the kidneys. For this reason, patients who receive zoledronic acid should have serum creatinine assessed prior to each treatment. In addition, serum calcium, electrolytes, phosphate, magnesium, and hematocrit/hemoglobin should also be monitored regularly.
Upon treatment initiation, dosage adjustments are recommended in myeloma patients with mild or moderate kidney impairment. (See How It Is Administered.) Treatment with zoledronic acid is not recommended in patients with severe kidney impairment because studies in this patient population have not been conducted. In myeloma, the risk of kidney dysfunction may be increased when it is used in combination with thalidomide or drugs known to affect kidney function (ie, nonsteroidal antiinflammatory drugs). There are animal data to suggest there can be a problem when bisphosphonates are administered during pregnancy. Therefore, zoledronic acid should not be used during pregnancy unless a physician feels the benefits outweigh the risks.
Long-term therapy with zoledronic acid appears to be safe. Results of a recent study of 22 patients who received intravenous zoledronic acid or pamidronate for up to 6 years found that prolonged therapy was well tolerated. No significant calcium, phosphorus, electrolyte, or WBC count abnormalities were seen. A clinically insignificant decrease in hemoglobin and platelet count and an increase in creatinine were observed. There were no stress fractures of long bones with prolonged therapy and the fracture rate beyond 2 years was no greater than during the first 2 years of treatment. (Ali et al. J Clin Oncol. 2001;19:3434-3437.)
A number of cases of painful exposed bone in the jaw (a condition called osteonecrosis of the jaw) have been reported in patients receiving intravenous bisphosphonates (pamidronate or zoledronic acid) for hypercalcemia of malignancy related to myeloma or breast cancer. (Marx RE. J Oral Maxillofax Surg. 2003;61:1115-1118.) However, cancer patients in general are at increased risk for this condition due to other therapies they may receive, such as radiation, chemotherapy, and medications such as steroids. (Tarassoff P. J Oral Maxillofax Surg. 2003;61:1238-1239.) Although no cause and effect relationship between bisphosphonates and osteonecrosis has been established, it is recommended that cancer patients take adequate steps to maintain their oral health. This includes practicing good oral hygiene and scheduling regular dental visits. Patients may want to complete major dental procedures before they begin treatment with bisphosphonates. If a dental problem does occur, the least invasive conservative management strategy is preferred.
Ongoing Clinical Trials
Trials are evaluating the use of zoledronic acid as an integral part of a treatment regimen for patients with early-stage or newly diagnosed myeloma to see if it can help prevent or delay the development of bone lesions. An additional trial is being conducted to determine the effect of zoledronic acid on the bone density of patients with bone loss with monoclonal gammopathy of undetermined significance (MGUS).
A study is also being conducted to investigate if lengthening the duration of infusion, in conjunction with increased volume of liquid the zoledronic acid is administered in, will provide renal protective effects.
The combination of zoledronic acid and the targeted radiotherapeutic Quadramet® (Samarium Sm-153 lexidronam, Cytogen) is being evaluated for the treatment of pain associated with metastatic bone disease in patients with recurrent or refractory myeloma.
Ongoing zoledronic acid clinical trials in myeloma are listed in the table below.
Ongoing Zometa Clinical Trials in Myeloma as of May 2005
Phase IV
A Multicenter, Open-Label, Randomized trial evaluating the duration of infusion of Zometa (zoledronic acid) 4 mg IV in Multiple Myeloma Patients with Bone Metastases
• View trial information
UARK 2004-43, A Multicenter, Open-Label, Randomized trial evaluating the duration of infusion of Zometa 4 mg IV in Multiple Myeloma Patients with Bone Metastases
• View trial information
Phase III
A Phase III Randomized Trial of Thalidomide plus Zoledronic Acid versus Zoledronic Acid Alone in Patients with Early Stage Multiple Myeloma
• View trial information
Phase II
First-line Treatment of Newly Diagnosed Multiple Myeloma with Combination of Low Dose Thalidomide, Zometa, and Dexamethasone
• View trial information
Phase I/II
A Phase I/II Trial of Zometa in Patients with Monoclonal Gammopathy of Undetermined Significance (ZOMGUS-001)
• View trial information
Tuesday, November 22, 2005
Happy Thanksgiving
Yesterday's visit to the clinic was uneventful--which is a good thing. My white counts, neutrophils, platelets, potassium, magnesium, hematocrit (red cells) are all where they should be. I'm doing so well that I don't have to return for 10 days, although Dr. Rifkin did give me the option of coming to the clinic this Thursday, Friday, Saturday and Sunday if I wanted. I graciously declined. So we wait for retesting, or as they call it restaging, i.e., testing everything under the sun once again such as bone marrow biopsy, bone scan, much blood work, and a few other niceties. No time scheduled yet for that exercise (last time it took 9 hours but I think it will be shorter this time). I hope it doesn't happen until after the holidays as the process will only bring to the surface the question of how well the transplant worked. Ignorance is bliss right now. I also asked Dr. Rifkin whether I could return to the health club to do light exercise. Request denied on the basis that I am only 38 days old and not yet ready to fend off all the nasties lurking about in the locker room. In addition to my walks (1 mile a day now) I am now lifting weights, but I feel I must clarify as it will give you all some sense of how much this transplant has knocked me back: the month before I was diagnosed last March I was curling 25 pounds per arm. When discharged from the hospital I was able to curl using 2 pounds per arm. I have now graduated to 3 pound weights--a 50% increase but a long long way from 25 pounds. Slow and steady, I know. I will report after my appointment on Dec. 1. Until then I wish you a Happy Thanksgiving.
We are going to our friends, the Richardsons, for Thanksgiving dinner. Chris Richardson and I lived together during law school and he has been an unbelievable friend during this difficult time--another friend who has become a brother over the years. He saw me at my absolute lowest this July and gave Susan and me great help and support during that time, something we will never forget.
Thanksgiving has always been my favorite holiday and this year is no different. I am excited that our 2 girls will be home, we will be sharing the day with good friends, enjoying good food and giving thanks for all those blessings we have received this year. Despite all the difficulties we have faced, we still see ourselves as blessed and will give thanks this Thursday for all the gifts we have in our lives, including all of you. Happy Thankgiving to all. Love, Dan
We are going to our friends, the Richardsons, for Thanksgiving dinner. Chris Richardson and I lived together during law school and he has been an unbelievable friend during this difficult time--another friend who has become a brother over the years. He saw me at my absolute lowest this July and gave Susan and me great help and support during that time, something we will never forget.
Thanksgiving has always been my favorite holiday and this year is no different. I am excited that our 2 girls will be home, we will be sharing the day with good friends, enjoying good food and giving thanks for all those blessings we have received this year. Despite all the difficulties we have faced, we still see ourselves as blessed and will give thanks this Thursday for all the gifts we have in our lives, including all of you. Happy Thankgiving to all. Love, Dan
Friday, November 18, 2005
Portless in Denver
I had my port (Hickman catheter) removed this morning at the hospital (7 a.m. appointment, arrgghhh). It was done under a local anesthetic by the same interventional radiologist who put it in 4 months ago. Quite uneventful and should be healed within a few days. I no longer look like a Christmas tree! These days feel like I am, oh so slowly, returning to some normalcy and it sure feels good. (Howie, I have always considered myself ,"Mr. Common Sense, a Man of the People", so I don't know what you mean by I don't know what is normal.) I commented to Susan over breakfast this morning (3rd time we've eaten out since Wednesday night--making up for the last 6 months) that I thought we were getting along even better than we did before I was diagnosed. Her response: "well, that's because you're nicer Dan." We laughed as I responded, "oh, you haven't changed at all as a result of the last 6 months." Having been forced to confront what is really important in life, it seems we have no ability to argue or even disagree about the smaller things. Or, maybe I'm just nicer, as Suz suggests. Have a great weekend everyone. Love, Dan
P.S. to Jaike: what are you smokin?
P.S. to Jaike: what are you smokin?
Wednesday, November 16, 2005
Doctor's Visit Leads to First Dinner Out in Months
White counts are steady, potassium is stable, and things are looking good. The Hickman catheter will be removed on Friday morning (under local anesthesia) and only one visit to the clinic next week is scheduled. Dr. Rifkin's parting words to me tonight: go be normal. YES! so, we immediately called for reservations at Elways and were joined by our friend Ted for "dinner out", a concept I had all but forgotten. Steak, baked potato, and salad.--the food real people eat. It was wonderful and so great that Ted, who, like so many of you who have been with us from the beginning, was able to join us. We talked of the ups and downs of the last 7 1/2 months and marveled at so many blessings, like my improving health, like the wide wide circle of friends who have stood by us, and like this blog. Tonight we are very thankful for all that we have been given and know that as long as we focus on the present, the future will take care of itself. Our love to all of you. Dan and Susan
Monday, November 14, 2005
Monday's Visitors and the Doctor's Visit
My cousin, and third brother, Rich Boulger, came through town today and we (my brother Mike and I) had the chance to spend a few hours with him. We, of course, went through some of our favorite childhood memories and caught up on our what our kids are doing. Rich delivered notes for me from each of his 3 kids, introducing themselves and wishing me well. They were very sweet. We promised we would have that wiffle ball game in Chicago as soon as I am feeling better. It was so nice to see Rich as I haven't seen him in at least 5 years, if not longer.
Mike took me to the clinic today; my 4th consecutive day at the clinic. It was a good visit. My doctor thinks I am doing really well, despite my feeling so tired. The 2 days of neupogen shots kicked my white cells way up as hoped. He said I am doing so much better than most people do 30 days after transplant. He also said that it will take at least a couple of months (maybe by Christmas) for me to notice a significant upturn in my energy and probably 6 months to feel like I have recovered most of my energy. I also had many questions for him about my myeloma numbers. (I don't think very quickly these days, so it takes me a few days to come up with questions) His response: don't pay attention to the numbers, it is way too early and you'll just drive yourself crazy trying to make something of them now. He also said that everyone agrees you can't know anything for 60 to 90 days following transplant. So we are readjusting our sights for mid January and plan to spend the next few months just enjoying my slow recovery.
My brother Tom is in Berlin on business and called me to let me know that the latest issue of Newsweek features advances in health care with focus on a man who has multiple myeloma and is now in remission. We can't find the issue so if any of you find it, please let me know the date of the issue, or buy an extra one for us. Thanks.
Mike leaves tomorrow. As with past family visits we put him to work, although less than the last visit. It has been nice to spend time with him, other than in a hospital room as with his last visit. We removed the hospital bed from our bedroom today, after 4 months. Mike helped with the purging and it is so nice to be out of that bed as it feels things are starting to return to normal. As with the other family visits, it seems that Susan just laughs and laughs when they are here. It's good to hear that laugh as things can get (and have gotten) awfully serious around here at times.
This blog continues to amaze me. We now have communications from Paris from our very good friends Sigun and Joe Coyle, as well as the Dakota Kid (is that you Bob T.? Thank you for the nice comments) and Stacey, your note in response to Susan was so nice and reminded us not to lose hope. And I continue to learn of friends who follow the blog closely but don't post comments. We received the nicest gift from a high school friend the other day, who had read of the visit of the statue of the Virgin Mary. She sent us 2 rosaries from Medjagorie, (sp?) which had been blessed there. She or her husband had purchased them in Medj. on their last visit there. Thank you Edna. Susan and I are overwhelmed by the gift. Next visit to the clinic is Wednesday. My doctor is talking about possibly removing my Hickman catheter this week. wouldn't that be nice. Love, Dan
Mike took me to the clinic today; my 4th consecutive day at the clinic. It was a good visit. My doctor thinks I am doing really well, despite my feeling so tired. The 2 days of neupogen shots kicked my white cells way up as hoped. He said I am doing so much better than most people do 30 days after transplant. He also said that it will take at least a couple of months (maybe by Christmas) for me to notice a significant upturn in my energy and probably 6 months to feel like I have recovered most of my energy. I also had many questions for him about my myeloma numbers. (I don't think very quickly these days, so it takes me a few days to come up with questions) His response: don't pay attention to the numbers, it is way too early and you'll just drive yourself crazy trying to make something of them now. He also said that everyone agrees you can't know anything for 60 to 90 days following transplant. So we are readjusting our sights for mid January and plan to spend the next few months just enjoying my slow recovery.
My brother Tom is in Berlin on business and called me to let me know that the latest issue of Newsweek features advances in health care with focus on a man who has multiple myeloma and is now in remission. We can't find the issue so if any of you find it, please let me know the date of the issue, or buy an extra one for us. Thanks.
Mike leaves tomorrow. As with past family visits we put him to work, although less than the last visit. It has been nice to spend time with him, other than in a hospital room as with his last visit. We removed the hospital bed from our bedroom today, after 4 months. Mike helped with the purging and it is so nice to be out of that bed as it feels things are starting to return to normal. As with the other family visits, it seems that Susan just laughs and laughs when they are here. It's good to hear that laugh as things can get (and have gotten) awfully serious around here at times.
This blog continues to amaze me. We now have communications from Paris from our very good friends Sigun and Joe Coyle, as well as the Dakota Kid (is that you Bob T.? Thank you for the nice comments) and Stacey, your note in response to Susan was so nice and reminded us not to lose hope. And I continue to learn of friends who follow the blog closely but don't post comments. We received the nicest gift from a high school friend the other day, who had read of the visit of the statue of the Virgin Mary. She sent us 2 rosaries from Medjagorie, (sp?) which had been blessed there. She or her husband had purchased them in Medj. on their last visit there. Thank you Edna. Susan and I are overwhelmed by the gift. Next visit to the clinic is Wednesday. My doctor is talking about possibly removing my Hickman catheter this week. wouldn't that be nice. Love, Dan
Saturday, November 12, 2005
An Ordinary Saturday Morning
It is a beautiful day here, like most Colorado days, and we have just returned from the cancer center where Dan was let out of jail early. We went to breakfast. This is the first time we have gone out in months and it almost felt normal. Then the drive home and I see all sorts of couples taking their walks, sitting with their lattes, or window shopping in Cherry Creek and the realization hitsthat we are not "normal" and I try desperately to hold back the tide.
I always ask Dan if he has told people on the blog how he really is, not the numbers, or the Doc's comments but the real thing. He always say yes and when I read his posting I realize we are often in different spaces. I feel like the voiceover on Desperate Housewives, telling what is going on beneath the surface, the real truth if your will, or the story according to the spouse, caregiver, best friend. Perhaps the real truth is that there are two stories.
I have taken to calling the hospital/cancer center the airport. It just comes out and as I correct myself I have tried to figure out why I continuously say this. Today I was struck by the thought that it is, in fact, like being at the airport. The ennui, the inability to find a comfortable place to sit, the long hours, the terrible food, and the waiting for something to happen,( or the explanation of why we are still grounded). Unfortunately Paris or some equally lovely place is not at the end of this ride.
And so the news this week of the still high myeloma number sent me into a bit of a tailspin. There is so much hope and then the reality hits and you are reeling and using every bit of strength you have to push through it and move on. Dan says little but comments like they can probably get me a few more years make me realize his strength of purpose is often tried and tired; certainly more so than mine. I am merely the watcher, the gatekeeper, the poorly prepared nurse
So back to the beautiful day. There is always hope and ofen a laugh, and more often cherished words from my dear Dan. They keep me going but make no mistake, this is the most difficult thing I've ever done. I sincerely thank all of you for you love and constancy. Happy Saturday, Love, Susan
And from Dan: As for me, I still have tremendous hope and strength of spirit and will continue to refuse to give in to the negative. Yes, this is difficult, the most difficult challenge I have faced in my life. But hope is always there. Just yesterday we were told that my doctor and this cancer center have one of the greatest reputations for survivors of myeloma. There are many many options and treatments still available. You, my friends, have shown me that the world is full of blessings and the glass is always half full. All you have to do is look at it that way. Fortunately for me, I have always seen life that way so this is not too difficult for me. Love, Dan
I always ask Dan if he has told people on the blog how he really is, not the numbers, or the Doc's comments but the real thing. He always say yes and when I read his posting I realize we are often in different spaces. I feel like the voiceover on Desperate Housewives, telling what is going on beneath the surface, the real truth if your will, or the story according to the spouse, caregiver, best friend. Perhaps the real truth is that there are two stories.
I have taken to calling the hospital/cancer center the airport. It just comes out and as I correct myself I have tried to figure out why I continuously say this. Today I was struck by the thought that it is, in fact, like being at the airport. The ennui, the inability to find a comfortable place to sit, the long hours, the terrible food, and the waiting for something to happen,( or the explanation of why we are still grounded). Unfortunately Paris or some equally lovely place is not at the end of this ride.
And so the news this week of the still high myeloma number sent me into a bit of a tailspin. There is so much hope and then the reality hits and you are reeling and using every bit of strength you have to push through it and move on. Dan says little but comments like they can probably get me a few more years make me realize his strength of purpose is often tried and tired; certainly more so than mine. I am merely the watcher, the gatekeeper, the poorly prepared nurse
So back to the beautiful day. There is always hope and ofen a laugh, and more often cherished words from my dear Dan. They keep me going but make no mistake, this is the most difficult thing I've ever done. I sincerely thank all of you for you love and constancy. Happy Saturday, Love, Susan
And from Dan: As for me, I still have tremendous hope and strength of spirit and will continue to refuse to give in to the negative. Yes, this is difficult, the most difficult challenge I have faced in my life. But hope is always there. Just yesterday we were told that my doctor and this cancer center have one of the greatest reputations for survivors of myeloma. There are many many options and treatments still available. You, my friends, have shown me that the world is full of blessings and the glass is always half full. All you have to do is look at it that way. Fortunately for me, I have always seen life that way so this is not too difficult for me. Love, Dan
Friday, November 11, 2005
Neupogen Revisited
Ah, just spent another 2 hours (not 3) at the clinic. Potassium creeping up very slowly. Still have to have IV's although they are giving me less than last week. Also have been given a new drug to help my kidneys retain the potassium. That will resolve in time I'm sure. Platelets continue to rise and are nearly normal. White cell count, on the other hand, fell today from 2.5 on Wed. to 2.1 today. So, I got another neupogen shot and will get another one tomorrow in hopes those shots will kick start my white cell production. So, we're off to the clinic tomorrow morning, Sunday morning and Monday. (Is it time for my sister Kathy to return?--No, my brother Mike will arrive tomorrow so he can accompany me on Sunday and Monday as I still have my driving privileges revoked) I've finally realized there is no normal course of recovery, only individual courses. But, I still continue to feel OK, energy still low but very gradually creeping upwards as well, and no major complications. I was to go off all antibiotics today, but because of the drop in the white count, those prescriptions have been extended a week. Take care everyone, have a nice weekend and I will update you on Monday. Love, Dan
Wednesday, November 09, 2005
More Numbers
Just returned from the 3 hour visit to the clinic. My platelets are recovering nicely and it looks very much like I will not need a platelet transfusion, which is unusual (not to have one). On the other hand, the white counts still linger at a low level, but not neutropenic. Dr. Rifkin believes the white counts will soon follow the platelets on the upward trend. Potassium continues to be low so I continue to receive the IVs and am eating potassium rich foods. We received the first report of the myeloma numbers post transplant, although very preliminary. They were trending upward before the transplant (around 3000). Today's report is they are at 2440. (these are the Igg numbers that we were tracking throughout my chemo in April, May). Rifkin feels good about the number, we are not so enthused, but we know it is early and the trend is in the right direction. (at some point in late June we had the Iggs at 1100, but that got derailed with all the nonsense I went through at that time with my back and other problems) An increase in my white count might help kill any myeloma remaining, as well. We'll only really know when the bone marrow biopsy is done in a month or two. Next appointment is Friday--more blood work, more potassium.
My brother Mike is arriving this weekend for his 3rd visit since my diagnosis. We always seem to find something for him to do around the house so he isn't bored. It will be nice to see him again and I must say again, my family has been tremendous through this journey. Love to all, Dan
My brother Mike is arriving this weekend for his 3rd visit since my diagnosis. We always seem to find something for him to do around the house so he isn't bored. It will be nice to see him again and I must say again, my family has been tremendous through this journey. Love to all, Dan
Monday, November 07, 2005
Numbers, Potassium, and Going to the Office
It is four weeks to the day since I was admitted to the hospital and given high dose chemo. Today's clinic visit revealed that my numbers remain about the same. White cells at 2.7, anc (neutrophils) 1.1, but platelets are up to 70. Once I finish with the potassium I should be able to get my catheter out of my chest. I have 2 more visits this week (Wed and Fri) to get IV potassium and blood work. In the meantime I have taken to eating potassium rich foods such as bananas, dried apricots, baked potatoes, etc. All in all my doctor continues to be very pleased with my progress.
Having not "crashed" for 4 or 5 days, I thought another visit to the office might pick up my mental spirits. So Susan packed me a lunch and off I went late this morning for a 1 1/2 visit. Let's see, I looked through some mail, emailed some friends, talked on the phone with some friends, talked with some of my friends in the office, and of course, ate my lunch. I don't have the stamina or concentration to do any real legal work, but at least I went through some familiar motions today and it felt good. We'll see how I feel tomorrow before I decide whether I have another visit in me this week. Next blog posting will be sometime Wednesday. Love, Dan
Having not "crashed" for 4 or 5 days, I thought another visit to the office might pick up my mental spirits. So Susan packed me a lunch and off I went late this morning for a 1 1/2 visit. Let's see, I looked through some mail, emailed some friends, talked on the phone with some friends, talked with some of my friends in the office, and of course, ate my lunch. I don't have the stamina or concentration to do any real legal work, but at least I went through some familiar motions today and it felt good. We'll see how I feel tomorrow before I decide whether I have another visit in me this week. Next blog posting will be sometime Wednesday. Love, Dan
Friday, November 04, 2005
Friday's VIsit
Another 2 1/2 hours at the clinic today. Can't seem to keep the potassium in me so IV's on a daily basis for awhile. If it continues, we think we'll have Susan learn to do this at home so we don't have to drive to the clinic everyday. Susan always wanted to be a nurse (NOT!), but she is willing to learn. What a sweetheart she is. Speaking of sweethearts, so also is my sister. She left last night. I called her this morning and told her I was back on the daily visits to the clinic and we needed her back. Much to my amazement she said, "well, if you need me, I'll be there." I guess she's forgotten I have a cruel sense of humor. Anyway, I told her to stay home for awhile. My numbers are still doing what they are supposed to, although the white count and neutrophils are still quite low as we wait for the immune system to rebuild. The internal rebuilding effort apparently is the explanation for the exhaustion. It's weird to be so tired from doing nothing (at least on the outside), but I guess the work is invisible to the eye. All in all I continue to do well. Next report will be Monday, probably afternoon. Have a nice weekend everyone. The last few weeks here in Colorado have been fantastic fall weather. Love, Dan
Wednesday, November 02, 2005
Wednesday's Report and Misc. Musings
In order that my fellow bloggers don't get too disturbed if I don't post a daily note, we have decided that, for the time being, I will post a note on the days that I see the doctor to give you the latest report. I saw Dr. Rifkin today and will be at the clinic again on Friday. Next week I will see him Monday and Thursday (yes!, only 2 visits). His goal is to wean me off the frequent visits and get to once a month. As they say, from his lips to God's ears.
My white cells and neutrophils have dropped, but that is expected (wbc=1.9, anc (absolute neutrophil count)= 1300) MOnday they were 2.9 and 2700. But since I am no longer receiving the neupogen shots, the production of cells is now entirely up to my new immune system--no more stimulants. They are expected to rise within the next week. Platelets went from 16 to 27 and hematocrit (red cells) went from 28 to 30. Both good signs, although the platelets are expected to bounce around a bit. When the platelets hit 50 I can have my "port" or "line" or "hickman catheter" removed. That is a catheter that was placed in my chest in July and has a line that goes directly into a main artery in the heart. It has been used for the drawing of blood, delivery of IV's, chemo, blood, etc, and has allowed me not to be stuck in the arm repeatedly. This port has 3 lines coming out of it, sort of like tassles, each about 4 inches long. Although I have gotten used to it, there are times,I do feel like a Christmas tree with an ornament hanging off me. Sleeping with this hanging out of my chest has been interesting to say the least. I'm looking forward to its removal, as is Susan, as she has had to clean each of the 3 lines daily since July.
Dr. Rifkin will be in Boston this Friday presenting a paper on a clinical trial involving the use of a new drug, Velcade, in patients with MM, who do not obtain complete remission. He told me I might well be a candidate for that clinical trial if we don't obtain remission. My response: Does this mean I can't obtain complete remission? he said no, so I am holding on to that thought. I'm asking you all to stay with me on this one. But, it is nice to know I have a doctor who is on the leading edge of the medicine with this disease. He is also a very nice guy. I am so lucky to have him as my doctor.
My sister's visit has been great. She is such a hard worker, has helped Susan organize her laundry room, has polished all the silver in the house, has "assisted" with meals, has made me lunch daily (I am banned from the kitchen because of bacteria that hangs out there) and has driven me to clinic and waited for hours as I have been infused. This family of mine has been there for me in spades throughout this ordeal.
And finally, I even went down to my office today to see everyone, to sit in my chair in my office, and to show the office to my sister. On one level, I am so ready to be back at it, but I understand it will be months before I can get there. I came home after our visit and had a 2 hour nap. Dan's big day at the office!
I continue to marvel at the staying power of all of you, my friends. We are now 7 months from diagnosis, and if anything, our family of friends has grown. The parade of visitors through the house is constant, the phone calls are never ending, the cards continue to find their way through the mail, and the blog just grows and grows. I see it as a reflection of what wonderful, loving, and caring people you all are and of how lucky I am to have met you and for you to have stayed in my life. Everyone at the clinic is aware of the tremendous support I have and they tell me, in their view, support from family and friends, plus a positive attitude make a huge difference in people's recovery. For that I thank you. Love, Dan
My white cells and neutrophils have dropped, but that is expected (wbc=1.9, anc (absolute neutrophil count)= 1300) MOnday they were 2.9 and 2700. But since I am no longer receiving the neupogen shots, the production of cells is now entirely up to my new immune system--no more stimulants. They are expected to rise within the next week. Platelets went from 16 to 27 and hematocrit (red cells) went from 28 to 30. Both good signs, although the platelets are expected to bounce around a bit. When the platelets hit 50 I can have my "port" or "line" or "hickman catheter" removed. That is a catheter that was placed in my chest in July and has a line that goes directly into a main artery in the heart. It has been used for the drawing of blood, delivery of IV's, chemo, blood, etc, and has allowed me not to be stuck in the arm repeatedly. This port has 3 lines coming out of it, sort of like tassles, each about 4 inches long. Although I have gotten used to it, there are times,I do feel like a Christmas tree with an ornament hanging off me. Sleeping with this hanging out of my chest has been interesting to say the least. I'm looking forward to its removal, as is Susan, as she has had to clean each of the 3 lines daily since July.
Dr. Rifkin will be in Boston this Friday presenting a paper on a clinical trial involving the use of a new drug, Velcade, in patients with MM, who do not obtain complete remission. He told me I might well be a candidate for that clinical trial if we don't obtain remission. My response: Does this mean I can't obtain complete remission? he said no, so I am holding on to that thought. I'm asking you all to stay with me on this one. But, it is nice to know I have a doctor who is on the leading edge of the medicine with this disease. He is also a very nice guy. I am so lucky to have him as my doctor.
My sister's visit has been great. She is such a hard worker, has helped Susan organize her laundry room, has polished all the silver in the house, has "assisted" with meals, has made me lunch daily (I am banned from the kitchen because of bacteria that hangs out there) and has driven me to clinic and waited for hours as I have been infused. This family of mine has been there for me in spades throughout this ordeal.
And finally, I even went down to my office today to see everyone, to sit in my chair in my office, and to show the office to my sister. On one level, I am so ready to be back at it, but I understand it will be months before I can get there. I came home after our visit and had a 2 hour nap. Dan's big day at the office!
I continue to marvel at the staying power of all of you, my friends. We are now 7 months from diagnosis, and if anything, our family of friends has grown. The parade of visitors through the house is constant, the phone calls are never ending, the cards continue to find their way through the mail, and the blog just grows and grows. I see it as a reflection of what wonderful, loving, and caring people you all are and of how lucky I am to have met you and for you to have stayed in my life. Everyone at the clinic is aware of the tremendous support I have and they tell me, in their view, support from family and friends, plus a positive attitude make a huge difference in people's recovery. For that I thank you. Love, Dan
Tuesday, November 01, 2005
Tuesday Morning
Visited the clinic yesterday and received another IV, had blood drawn and saw my doctor (3 hours). Everything is going well. No more shots. I asked my doctor why I was so exhausted. His response: "Because I hit you with a bus!" hmmm. It feels like that some days. It will take a few months for the energy to return to some semblance of normality, but it is still great to be home. I have now instituted daily short walks to get out of the house, to get fresh air, and to try to help with the fatigue. These next months will undoubtedly teach me some patience. Love, Dan
Monday, October 31, 2005
Susan's Monday Morning Report
Yesterday Dan's sister Kate drove him to the cancer center for his daily blood workup and neupogen shot so that I could have a little break and remind myself that Sunday mornings were meant for a good cup of coffee and a voluminous newspaper. Unfortunately for Kate, Dan needed an IV of potassium and magnesium and the short visit turned into a 3 hour stay at the clinic. I, of course, worried to no end as I waited for them to return. She will be driving Dan to the clinic this morning to give me another break. Dan's numbers continue to move slowly upward, although he constantly exclaims how totally exhausted he is. Patience I tell myself, patience.
Sunday was not to remain just numbers, doctors and worry however. Our friends, the Neenans arranged a most precious visit. A statue of the Blessed Virgin Mary from Medjugorje, Yugoslavia is now in our family room and she will be with us for several days. This is one of 10 replicas of the statue that permanently resides in Medjugorje, although this is the only one that travels. There is so much to be said but words cannot do justice to the experience. She is 8 feet tall, has the most wonderous face and seems so filled with devotion, intention and prayer that to be in the same space with her is extraordinary.
Carl, who is responsible for the Vactican making and delivering her to Colorado, sees transporting her to wherever she is needed as his ministry. He asks only that a rosary be said daily. Catherine, Julia, Kate, Nancy and Jim Neenan, Dan and I said the rosary yesterday and felt overwhelmed by the peace and grace of the moment.
To me this is such a gift. Since Dan became ill 7 months ago, the only solace I have found has been in the rosary and the hundreds of Hail Marys I've said to calm myself down when things felt so bleak. I look at her now in my family room and believe in the power of prayer. She will leave on Tuesday or Wednesday morning, if you would like to see her, please call, as we would love to share her. Love, Susan
Sunday was not to remain just numbers, doctors and worry however. Our friends, the Neenans arranged a most precious visit. A statue of the Blessed Virgin Mary from Medjugorje, Yugoslavia is now in our family room and she will be with us for several days. This is one of 10 replicas of the statue that permanently resides in Medjugorje, although this is the only one that travels. There is so much to be said but words cannot do justice to the experience. She is 8 feet tall, has the most wonderous face and seems so filled with devotion, intention and prayer that to be in the same space with her is extraordinary.
Carl, who is responsible for the Vactican making and delivering her to Colorado, sees transporting her to wherever she is needed as his ministry. He asks only that a rosary be said daily. Catherine, Julia, Kate, Nancy and Jim Neenan, Dan and I said the rosary yesterday and felt overwhelmed by the peace and grace of the moment.
To me this is such a gift. Since Dan became ill 7 months ago, the only solace I have found has been in the rosary and the hundreds of Hail Marys I've said to calm myself down when things felt so bleak. I look at her now in my family room and believe in the power of prayer. She will leave on Tuesday or Wednesday morning, if you would like to see her, please call, as we would love to share her. Love, Susan
Saturday, October 29, 2005
Counts Continue to Rise
8 a.m. visit to the clinic. white cells and platelets continue to rise slowly; neupogen shot to keep boosting the white cell production. Energy waxes and wanes. My sister, Kathy, arrived this morning. How nice to have her here. She will help spell Susan from the 24 hour monitoring (although I think I may be interesting it must be so boring to have to watch me all day). I feel we are on the road to recovery. My cousin Rich understates our summers and time together. Every summer he visited us for a week and I got to spend a week with his family on the other side of the state. I felt like he was another brother of mine, and still feel that way. We played baseball, whiffle ball, went to the swimming pool and hung out together. I have fond memories of great summers spent with Rich and am glad he has figured out this blogging thing. My love to all, Dan
Friday, October 28, 2005
Friday Update
I know how upset you bloggers get when there is no report from me, so here is today's report. I saw my doctor this morning (as an outpatient in the clinic--how nice) and had blood drawn and received another neupogen shot. My counts continue to rise. My white count is now at 1.5 (normal being about 3.9 to 8), and my neutrophils are now at 1000 (not sure what normal is but I am considered no longer neutropenic when I have 2 consecutive days of 1500. I should get there in a few days.) We have daily visits to the clinic for the next few days for blood draws and shots, but that should lessen over the next few weeks. I asked the BIG QUESTION today, which is, do we know how effective the melphalan was in getting at my myeloma. The answer is no, and we won't know for another 60 to 90 days when they will do more bone marrow biopsies to see the degree, if any, of myeloma cells I still have. Those test results will, of course, dictate the future course of treatment or nontreatment. Surprisingly, the 60 to 90 day wait period feels good to me. I look at it as a time to get my energy back, get off all the drugs I've been taking, and to start feeling better. This disease has forced me to learn to let the future take care of itself and to live for the day. So that is what I hope to do for the next 2 to 3 months, one day at a time. And finally, don't you just love those SOX! Thanks again for all the good cheer. (oh, and Mike P.--I have yet to see elk steaks as a recommended food for cancer survivors, but then what do those nutritionists know anyway)
Love, Dan
Love, Dan
Thursday, October 27, 2005
Discharged
Just saw my doctor and he gave the choice to go home today or tomorrow. Hmmmm. Not a difficult choice. I will be discharged this afternoon. Counts continue to move upward. For the biologists among you bloggers, my neutrophils are at around 530, white cells .7, platelets 28 and hematocrit (red cells) 25. The hematocrit number is the threshhold for transfusion so I am currently receiving 1 pint of blood and will receive another later this morning. This is entirely expected. My energy levels continue to be very low, but being home will be great. We will continue to keep you advised over the next weeks/months through the blog. I can't say it enough: thank you everyone for all your prayers, support and love.
My sister Kate (Kathy) will be arriving on Sunday to help around the house as I will need close to 24 hour care for the first few weeks until my counts get back up to better levels. THat will be nice since I haven't seen her in a few years.
And aren't those White Sox something else? What a team. Houston just couldn't hit those White Sox pitchers. and those 2 last outs by Juan Uribe were something. Many of you may not know that he was once a Colorado Rockie. In typical Rockie's fashion, since he was such a fine player, we traded him.
Finally, my "brother Ted" and his son, "the other Ted" have begun work on the hardcopy book. They have asked once again that each of you bloggers send him your picture, either digitally via email, or hard copy via regular post. Ted's address is Ted Bettridge, 4296 Grove St., Denver, CO 80211. Photos that come through email should be in a JPG or JPEG format.
Love, Dan
My sister Kate (Kathy) will be arriving on Sunday to help around the house as I will need close to 24 hour care for the first few weeks until my counts get back up to better levels. THat will be nice since I haven't seen her in a few years.
And aren't those White Sox something else? What a team. Houston just couldn't hit those White Sox pitchers. and those 2 last outs by Juan Uribe were something. Many of you may not know that he was once a Colorado Rockie. In typical Rockie's fashion, since he was such a fine player, we traded him.
Finally, my "brother Ted" and his son, "the other Ted" have begun work on the hardcopy book. They have asked once again that each of you bloggers send him your picture, either digitally via email, or hard copy via regular post. Ted's address is Ted Bettridge, 4296 Grove St., Denver, CO 80211. Photos that come through email should be in a JPG or JPEG format.
Love, Dan
Wednesday, October 26, 2005
Gratitude and Going Home
Almost 7 weeks ago Susan and I met with my Dr. and reviewed with him, in detail, the informed consent for the two regimes of chemotherapy I was about to receive in the next month, as well as the stem cell infusion. The documents exceeded 10 pages, and my doctor reviewed each side effect in detail. Leaving the doctor's office that day, both Susan and I agree, was one of the low points of these past 7 months. And, while the option of "not having the procedure" was written on the document, Dr. Rifkin was quick to point out that was not really an option in my case. So many potential side effects, many of which can be fatal, and the absolute guarantee that I would get some of them but most likely I wouldn't get them all. I was scared. Susan was scared. When they delivered the first bag of chemo on Oct. 10th, I braced for the worst. We are 2 1/2 weeks from that last high dose chemo and stem cell infusion and my course, although not free of side effects, has been smoother than we ever could have hoped. Thoughts are very powerful, directed prayer is even more so, and love is the most powerful of all. You have all given of yourselves to bring healing and health to me and my family and we are so grateful for all you have done. I humbly acknowledge that my good course these past weeks is beyond anything I could have done by myself. Thank you.
My counts continue to rise (neutrophils are at 290, white count at .4)and my doctor says I will likely be discharged tomorrow or Friday. I am so excited to be going home. We are not out of the woods since I will continue to be immunosuppressed for some time, and I will have to continue on the strict diet, and limit contact with anyone or anything that might have bugs. I will have daily visits to the clinic for awhile, for blood work and a quick exam to assure I haven't picked up anything. But we are now on the road to recovery.
And finally, don't you love those Sox! It is their year. Susan's cousin Arlene, who lives in New York, managed to find Katie Kirby, White Sox PR Director, through the internet and email and apparently told my story to Ms. Kirby, who then posted on the blog. Arlene you're terrific.
Love, Dan
My counts continue to rise (neutrophils are at 290, white count at .4)and my doctor says I will likely be discharged tomorrow or Friday. I am so excited to be going home. We are not out of the woods since I will continue to be immunosuppressed for some time, and I will have to continue on the strict diet, and limit contact with anyone or anything that might have bugs. I will have daily visits to the clinic for awhile, for blood work and a quick exam to assure I haven't picked up anything. But we are now on the road to recovery.
And finally, don't you love those Sox! It is their year. Susan's cousin Arlene, who lives in New York, managed to find Katie Kirby, White Sox PR Director, through the internet and email and apparently told my story to Ms. Kirby, who then posted on the blog. Arlene you're terrific.
Love, Dan
Tuesday, October 25, 2005
Counts Are Rising
Neutrophils have gone from 15 to 128, white count from .1 to .2, and platelets from 18 (thousand) to 26 (thousand). Red cells continue to go down. Hematocrit (a measure of red cells) is now 25.5. they will transfuse if I get to 25. Unless the reds turn around today transfusion will happen tomorrow---but is no surprise. I was told I would need red cells as well as platelets. It actually looks like I may not need platelets as they transfuse those when they get to 10 (thousand) and I am trending up rather than down. The low red cells also provide some explanation for the fatigue I've felt in the last few days. But I've no complaints. The process is working and I am hoping to be home this weekend. Finally will the person who contacted the Rocket Man please come forward? I'm dying to know who has such influence. Love, Dan
Monday, October 24, 2005
The White Sox Visit the Blog!
WOW. I just discovered a posting on the blog from Katie Kirby, director of public relations for the White Sox. Check comment by Rocket Man after my GO SOX posting. I know some Kirbys from growing up in Dickinson, North Dakota, but don't remember a Katie. Anyway, Rocket Man, however you learned of this blog, welcome and thank you for the kind words. Like so many others, I've been waiting 46 years for my team to win the Series. THe entire bone marrow unit here at the hospital knows of my allegiance to the White Sox, and I must admit your winning has been very therapeutic for me. I will focus on getting better, but I can still send good karma to my team. so....GO SOX! I'm with you all the way. Dan
Slowly Turning the Corner
My doctor has already been in to see me this morning and reports that I now have 15 neutrophils (yesterday was 0) and my platelets went from 16 (thousand) to 18 (thousand). can't remember what the while cell count was, but no matter. We are now turning the corner as my body is now starting to produce its own cells. Now we wait for the numbers to rise and when they get to a certain level, I get to go home(I think I need 50 neutrophils and not sure about white count or platelets). Yesterday was a rougher day as I was so totally and completely exhausted and then got nauseous. (sp?) But I'm feeling better today and am greatly encouraged by the begining of the production of cells. As Dr. Rifkin said this morning: "you're doing awesomely." Looking forward to counts rising and going home, maybe in a week or so. Dan
Sunday, October 23, 2005
GO SOX
Ah, what a great game, not the least reason being that the Sox won. But I understand it's a 7 game series. In typical Bettridge fashion, after calling for ChiSox paraphenalia, Ted and his brother Dennis, appeared in my room yesterday with a ChiSox hat, pennant, 1959 baseball cards, and a 1959 baseball program. They now adorn my room and declare to the world I am a ChiSox fan. What fun! THe Bettridge hearts are huge! thank you Ted and Dennis.
My counts are still at essential 0 (neutrophils--0, white cells--.2, platelets--16). So we wait for engraftment and cell growth. Dr. Rifkin thinks this will be soon as my platelets drop is slowing and there are now some monocytes in my blood, which mean something to him and nothing to me. Still feeling about the same with a little more fatigue. Julia spent yesterday with me working on a term paper. How nice just to spend the day with her.
Dan
My counts are still at essential 0 (neutrophils--0, white cells--.2, platelets--16). So we wait for engraftment and cell growth. Dr. Rifkin thinks this will be soon as my platelets drop is slowing and there are now some monocytes in my blood, which mean something to him and nothing to me. Still feeling about the same with a little more fatigue. Julia spent yesterday with me working on a term paper. How nice just to spend the day with her.
Dan
Saturday, October 22, 2005
Saturday Morning
Good Morning everyone. It's best that you are all up early and get your errands completed so you can settle in for this evening's White Sox v. Astros game. I picked the White Sox as my team when I was 7 years old and they had just won the American League pennant. They lost the series to the Dodgers and have not been back to the World Series since. It's about time!
My counts are still at the bottom (0) so not much news. We're hoping that maybe tomorrow we see an uptick. In the meantime, I continue to do well. Julia is home for the weekend, which is nice. She absolutely loves Colorado College. although if I didn't know better I might be questioning whether she is doing any academic work: she has joined 6 intramural sports teams. I don't know how she finds time to study, but she does and is doing fabulously on the academic front as well. Catherine will probably also be home this weekend to see her sister, but not me, as she is fighting a very bad cold.
Big Mike--you really fooled me. We often refer to my oldest brother as "Big Mike" and so when I saw the post a week or so ago from "Big Mike", I thought it was him. Yesterday's post about the interviews confused me as my oldest brother is closer to receiving Social Security than looking for a job with Citigroup. It took me awhile, but now I know you're true identity. (My big brother is stuck with his joke name "Mrs. Joshwick") How nice of you to join the blog. I wish you the best of luck in your interviews and have no doubt that you will receive many many job offers. Have some fun whle in NYC also and let me know how things went in the interviews. Dan
My counts are still at the bottom (0) so not much news. We're hoping that maybe tomorrow we see an uptick. In the meantime, I continue to do well. Julia is home for the weekend, which is nice. She absolutely loves Colorado College. although if I didn't know better I might be questioning whether she is doing any academic work: she has joined 6 intramural sports teams. I don't know how she finds time to study, but she does and is doing fabulously on the academic front as well. Catherine will probably also be home this weekend to see her sister, but not me, as she is fighting a very bad cold.
Big Mike--you really fooled me. We often refer to my oldest brother as "Big Mike" and so when I saw the post a week or so ago from "Big Mike", I thought it was him. Yesterday's post about the interviews confused me as my oldest brother is closer to receiving Social Security than looking for a job with Citigroup. It took me awhile, but now I know you're true identity. (My big brother is stuck with his joke name "Mrs. Joshwick") How nice of you to join the blog. I wish you the best of luck in your interviews and have no doubt that you will receive many many job offers. Have some fun whle in NYC also and let me know how things went in the interviews. Dan
Friday, October 21, 2005
A Project
Hello everyone. My sons and I have in mind a project that will capture the notes and the healing energy that all of you have put into this blog. We would like to create a book using your comments. We would like that book to contain a photo of each person who has contributed a comment to the blog. If you have not posted a comment and would like to submit a comment and your photo we would welcome those submissons too. Whichever catagorey you fall into please submit a photo and/or comments to tw8b@yahoo.com or send via land mail to Ted Bettridge, 4296 Grove St., Denver, CO 80211. Photos that come through email should be in a JPG or JPEG format.
As Dan has told you, your daily postings are a tremendous part of his healing process. Thanks to all of you and I look forward to receiving your photos and/or comments. By the way I have solid information from an inside source that Dan's favorite baseball team, since he was a kid, is the Chicago White Sox. His room could use a little decorating for the upcoming series. A jersey, a cap, you get the idea.
As Dan has told you, your daily postings are a tremendous part of his healing process. Thanks to all of you and I look forward to receiving your photos and/or comments. By the way I have solid information from an inside source that Dan's favorite baseball team, since he was a kid, is the Chicago White Sox. His room could use a little decorating for the upcoming series. A jersey, a cap, you get the idea.
Thursday, October 20, 2005
Thursday's Update (finally)
How sweet of all of you to be concerned about no update. The delay is due to my internet being out for the last 24 hours. As much as you love to check the blog daily, I must confess I check it more regularly than that and have felt so isolated without my internet. In fact, my doctor saw me this morning and asked at the end of his examination, as he asks every day, "so what's bothering you most today?" Well, this morning I told him my biggest problem is "I have no internet". Unlike with all of my other complaints, he said he wasn't sure he could help me with this one. But, we're back on line. I am still doing OK, although I'm quite exhausted. I do still manage to do some exercises daily. This morning I did 20 minutes on the exercise bike in my room and also some upper body strengthening with a flexband. I then promptly went back to bed and slept for an hour. My white count and neutrophils are now very low (neutrophils are 2). So, we are now waiting for regeneration of my cells. My love to all. Dan
Wednesday, October 19, 2005
Wednesday 10/19/05
Everything is about the same as yesterday, except the counts are closer to 0. Still feeling about the same--I'm doing OK. We are at Day +6, which is 6 days after transplant. Being bored,I have been told,is a good thing under these circumstances. I think I'll try some books on tape today. Dan
Tuesday, October 18, 2005
A Primer in Neutropenia
A primer in what, you ask? neutropenia, a condition in which the body's neutrophils are too low. Neutrophils are the main type of white blood cell that fights infection. The high dose chemo that I received will kill all my bone marrow, which is what generates the blood cells. The stem cells I received last week will regenerate the bone marrow and the blood cells. The neupogen shots I started receiving today help stimulate new cell growth. So, until the new stem cells generate new bone marrow and cells I currently have no immune system. My neutrophils are below 200 (normal I think is above 1500) and my white cell count is .2, normal being somewhere around 3 to 7, I think. As a result until my white cell count and neutrophils increase I am at significantly increased risk for infection. Hence, my roaming privileges around the hospital have been severely curtailed and I must where a mask whenever I leave the room. But, I still feel pretty good, a bit more tired, but all in all, still OK. So that's the status this Tuesday morning. Dan
Monday, October 17, 2005
Monday morning
still doing OK. White counts and platelets are dropping as they should. Expect they will hit bottom in a few days. Start neupogen shots tomorrow to stimulate cell growth from the new stem cells, which should occur some 7 to 10 days later, and which will then bring up the white counts. Side effects more likely to hit as counts drop. Thank you Ingrid for the wonderful connection to Tuscany. We have certainly missed what we hoped would be an annual September trip to Italy, but your post gave us focus that we will be there again next year. Love, Dan & Susan
Sunday, October 16, 2005
Sunday Morning
Good Morning everyone. We are now at day 7 and I'm still doing OK. My counts started to fall yesterday (I don't know what they are today yet), but as they fall I suppose my energy will drop. But so far,so good. Brother Mike left early this morning after visiting for 6 days and helping around the house. My mother will be leaving later today. My family has been tremendous during this difficult time. I have so enjoyed the new faces that continually pop up on the blog. I have realized that even if no posts are made, many of you are checking on my progress on a regular basis. You are the greatest. My wish for you today is that you receive a taste of what you have given me and have a wonderful Sunday. Love, Dan
Friday, October 14, 2005
Morning Update 10/14/05
I misdated my last update. sorry. Today is Friday. right? I continue to do well. Transplant went without a hitch and now we wait for the ruckus to begin (white cells and platelets to go down and my stem cells to start regenerating good cells, and the side effects from the high dose chemo should start any day now). Susan took photos of the whole experience. I'm a bit tired but feel pretty good otherwise. You all continue to overwhelm me with your kind words, thoughts, and prayers. I am so humbled by this entire experience and wonder what I could possibly have done in my life to deserve such a wide network of family and friends with so much generosity, compassion, and love. thank you thank you thank you. Love, Dan
Thursday, October 13, 2005
Morning Update 10/14/05
Things are proceeding as expected. My red cells dropped last night and so we started the red blood transfusions. I am currently receiving my second pint (no not of guiness, alas). after that they give me the preliminary drugs to help with the stem cell infusion, which will occur sometime around later morning. they are giving me back 10 million of my 22 millions cells harvested. no magic about the number other than its about half of what they collected and they want to hold on to the other half for a potential second transplant (we won't go into that now). The stem cells are stored frozen in a wood preservative which has a distinctively unpleasant odor--mainly to visitors, as my body is so saturated with it, I supposedly can't notice it. I am expecting the side effects of all of this to start creeping up on me and the next few weeks to be pretty crappy. But for now I'm still doing OK. Having this blog site is so great! It is such a pleasure to be hearing from my long lost North Dakota friends. What a group. after years and years of limited contact they are coming out in droves of support. As Susan has said many times, "you can take the boy out of North Dakota, but you can't take North Dakota out of the boy." These friends reach back into grade school days and span into some college roommates. This class of mine connected long ago and we have never lost the connection, no matter how long the separation. THanks for everything,every one of you, from my friends from first grade, to our new neighbors we just met last year. My brother Mike, who now lives in Texas, and my mother, who still hails from North Dakota are here visiting and that is nice. We have put Mike to work cleaning our garage, a job he willing took on. Tom was here a few weeks ago and painted and cleaned windows. What great brothers I have. My love to all of you. Dan
Wednesday, October 12, 2005
Morning Update
Feeling a bit better today. Just an initial reaction to the second high dose chemo, I suspect. I would still appreciate a call before visitors come today and tomorrow to make sure I'm still doing OK. My cell is 303-907-3546. Today is looking kind of busy so far, so tomorrow may be a better day, provided tomorrow's activities don't hit me too hard. Tomorrow I get my stem cells back and begin with the neupogen shots again to stimulate bone marrow replacement and cell growth. Other than the red cells, my counts are still in the normal range so we have some dropping to do on those fronts before regrowth will occur. I suspect, however, given the red cell counts that those transfusions will start either today or tomorrow. Thanks again for everthing. I can't say it enough how important it is to me during this time to be receiving your love and support. It truly does keep me going ... and going.... and going.... LOve, Dan
Tuesday, October 11, 2005
Evening update
Dan is running a slight fever and he is feeling tired. PLEASE NO VISTORS UNTIL FURTHER NOTICE.
UPDATE
Dan doesn't reccomend SLP for your next vacation. There is no view of the ocean and the rooms are a little cramped for the amount of money you are paying. Service is not too bad. He received his first injection of melphalan yesterday. It was preceeded by anti nausea medications. He will receive his second shot this afternoon. He is receiving visitors but please call ahead.
Sunday, October 09, 2005
THANK YOU ALL
Transplant day is just around the corner. I am ready. We are naturally a bit nervous but understand that this next step is necessary and are thankful it is finally here and that I have not found any more detours to delay the day. We have been deluged these past few days with calls, visits, cards and phone messages and are so thankful for all of you. Long ago, on our wedding day, Susan and I told each other that we wanted to share the love we have for each other with the friends we made along our way. While we hope we have been able to do that, these past weeks and months, all of you,our friends and family, have turned the tables on us and have given us so much love and support that we are filled with deep gratitude for the blessings in our life. You have given me strength and resolve. thank you so much and please stay in touch. I love you all. Dan
Thursday, October 06, 2005
A NOTE FROM SUSAN
Yesterday the cancer institute called with news of Dan's bone marrow biopsy. I was so sure the cytoxin had caused the myeloma to evaporate that when we heard the numbers were higher, I had to catch my breath. Such a disease, it never seems to give you a break especially when you're sure one is in the offing. I tried to keep it in perspective but that lasted about 15 minutes. I was comforted by the patient who always seems to call up some huge resevoir of strentgh no matter the news.
And then the day was filled with phone calls, visits, food, books, mail, music, email, hugs,lots of I love you's and a huge recognition that it has been 6 months and you are all still there with us. You haven't tired of the journey and your constancy encourages and supports us. Bless you for you are angels disguised as human beings. I will be forever grateful and I will find that place again that believes all is possible. Love, Susan
And then the day was filled with phone calls, visits, food, books, mail, music, email, hugs,lots of I love you's and a huge recognition that it has been 6 months and you are all still there with us. You haven't tired of the journey and your constancy encourages and supports us. Bless you for you are angels disguised as human beings. I will be forever grateful and I will find that place again that believes all is possible. Love, Susan
Wednesday, October 05, 2005
THE NEXT PHASE
First of all let me say that all of you are wonderful. The outpouring of love for Dan and the positive energy that you are sending his way is doing so much to get him back to the life he had before cancer sent him down this detour. If you have looked at the schedule that was first posted you are aware that Dan will enter the hospital on or around the 10th of October. This phase of his treatment will involve the infusion of healthy stem cells into a vein, they will find their way to his bone marrow, where they will produce new blood and immune cells and replace the cells destroyed by the treatment. Before the transplant is done, Dan will receive high-dose chemotherapy to destroy his diseased cells.
Although Dan is allowed visitors while he is hospitalized, given the uncertainty of how sick he may be and what side effects he may be dealing with, we will be posting regular (daily if necessary) messages regarding his health and whether he would like visitors. Please check the blog site the day you are planning to visit to assure he is in a condition to receive visitors. Thanks
Although Dan is allowed visitors while he is hospitalized, given the uncertainty of how sick he may be and what side effects he may be dealing with, we will be posting regular (daily if necessary) messages regarding his health and whether he would like visitors. Please check the blog site the day you are planning to visit to assure he is in a condition to receive visitors. Thanks
Monday, October 03, 2005
October 3, 2005 bone marrow biopsy
Today I get a bone marrow biopsy to determine the effectivenss of the cytoxin in attacking the cancer cells. I also will be getting my second hormone shot of Lupron to continue to contain (and hopefully shrink) the prostate cancer. The shot lasts 4 months. No other activity scheduled this week.
Thursday, September 15, 2005
The Scoop on Dan
Welcome to "The Scoop On Dan" blog. I hope this blog will give all of you who love and care for Dan a way to keep up with his progress as he moves down the path to a healthy and rich life. I thought that this would also give some relief to Susan and Dan who either have to answer the phone or listen to the messages. Not that they aren't welcome, but you can imagine what it takes to repeat the latest news many times a day. I hope that Dan's community of friends and loved ones will have a chance to exchange information, questions or comments. I will try to update information every couple of days and also to provide you with links to web sites that you might find interesting.
Today, September 14, 2005, is the start of Dan's journey towards total recovery. Dan is a SURVIVOR and he and his family are learning to live with cancer. I am attaching his schedule for the coming weeks. If you can't find what you want or need in the way of information just let me know.
Dan’s Transplant Schedule:
8/31 Tests conducted to restage degree of myeloma present (heart, lung, blood, bone marrow tests)
9/7 Meet With psychologist, then with Dr. to review test results and to see if any changes in schedule
9/13 Caregiver class
9/14 installation of additional port for extraction of blood and infusion of chemo drugs
9/14 Infusion of cytoxin---Dan spends night in hospital
9/15 Dan gets shot of neupogen (to help build white cells) and is discharged
9/16—28 Dan to hospital daily to get neupogen shot
9/24--28 Begin apheresis (collection of stem cells from Dan which are then frozen)—4 to 5 hours daily at hospital
10/10 Dan hospitalized and given high dose chemotherapy—melphalan
10/11 second dose of melphalan given
10/10--- Dan hospitalized for 3 to 4 weeks (can receive visitors ---hospitalization will not be in isolation
Today, September 14, 2005, is the start of Dan's journey towards total recovery. Dan is a SURVIVOR and he and his family are learning to live with cancer. I am attaching his schedule for the coming weeks. If you can't find what you want or need in the way of information just let me know.
Dan’s Transplant Schedule:
8/31 Tests conducted to restage degree of myeloma present (heart, lung, blood, bone marrow tests)
9/7 Meet With psychologist, then with Dr. to review test results and to see if any changes in schedule
9/13 Caregiver class
9/14 installation of additional port for extraction of blood and infusion of chemo drugs
9/14 Infusion of cytoxin---Dan spends night in hospital
9/15 Dan gets shot of neupogen (to help build white cells) and is discharged
9/16—28 Dan to hospital daily to get neupogen shot
9/24--28 Begin apheresis (collection of stem cells from Dan which are then frozen)—4 to 5 hours daily at hospital
10/10 Dan hospitalized and given high dose chemotherapy—melphalan
10/11 second dose of melphalan given
10/10--- Dan hospitalized for 3 to 4 weeks (can receive visitors ---hospitalization will not be in isolation
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