As expected, I will return to a revlimid regime. That is the consensus of the docs at M.D. Anderson and Mayo. One pill (15 mg) per day, along with my every other day prednisone. Initially Rifkin was going to couple it with dexamethasone, rather than prednisone (both steroids, but they act a bit differently with the revlimid). But after much discussion with Susan, who reported (she is always the Greek chorus in our doctor visit) that I was handling the prednisone quite well, in fact, maybe too well, as I always seemed to be happy and laughing--particularly at my own jokes, Rifkin said, in that case we'd stay with prednisone and keep me happy. He did say we might change over to dex if the data suggests dex to be a more effective boost for the revlimid.
Given that I don't qualify for any pomalidomide trials at this time, this is about the only option available. The results of all the testing show that my disease is progressing. While the bone marrow biopsy showed only 22.5% plasma cells, Rifkin was quick to discount that since myeloma grows in a swiss cheese like pattern. So the biopsy can hit a pocket with high concentration of myeloma, or a very low degree of myeloma. Remember the "if it's too good to be true, then it's likely not true" posting while in Arkansas when my plasma cells went from 90% to 5%? Right. There were some good numbers tucked in the biopsy results and as he said, "the prednisone did its job," which is to hold my myeloma in check while my blood counts stabilized. There is still concern about what the revlimid might do to the blood counts since my bone marrow doesn't work as well anymore.
And then there were all the bone studies, which is really what showed the progression of the myeloma. I have multiple new compression fractures in my back. This was a surprise to me since I thought that all my vertebra were already fractured from T1 all the way down to L5. Well, if they weren't before, they are now. A couple of troubling spots that made Rifkin plead with me to go see my orthopedic surgeon. I avoid those exams as they are so painful as he pushes on each individual vertebra to determine its stability and my degree of pain at each level. I used to come home from those exams and take a percocet or dilaud. So, here we go again. The MRI and PET scan also showed more lesions in the humerus (upper arm), femur (thigh), sternum, and ribs. These are areas where the myeloma has attacked the bone. Nothing so serious that I am at risk for fractures, but enough that I have to get on some drug to stop the progression.
I prepared for this exam as if it were a real exam: I picked up copies of all tests yesterday, read them, highlighted them, wrote in the margins, went back and looked at most of my test results over the last 4 years, and wrote down 2 pages of questions. Maybe Rifkin should have been preparing for my questions! Oh, he must enjoy my examinations (pun intended).
I will only feature a few questions that might be of interest to you:
1. Are the bone lesions reversible? Yes, the revlimid can stop the progression of the disease and in time the bone can heal.
2. Are my kidney and liver funtion OK? Yes, they are within normal limits. (Kidney function is often adversely affected by myeloma).
3. When do I start and how long will the revlimid regime last? It will take about 10 days to get the order in, get me approved and have the first prescription delivered. We will probably go through 6 cycles (21 days each cycle), then we'll reevaluate.
4. Are there side effects to the revlimid? Yes, primarily causing a drop in the white and red cell counts and/or platelets. This is of concern due to my poor bone marrow, so we are starting on a lower dose than they might otherwise. Neuropathies are generally less than with thalidomide or velcade.
5. What next? If the revlimid works, then off to M.D. Anderson for the mini allo transplant from one of my brothers. I would be hospitalized for a month, then required to be in Houston for 3 months in case of complications. We would stay with Susan's brother Gary, which would be much nicer than having to rent an apartment and move a carload of furnishings.
And that, my friends, is the medical report. What a life! But I'm still laughing. It may be drug induced laughter, but that matters not--I'm still laughing, and every day continues to be a treat. Thanks again to all of you for keeping us going. We love you.
Dan
Friday, November 13, 2009
Friday, November 06, 2009
A List of Ditties
Household woes: Remember our flood this spring, just after we returned from Little Rock, where Julia's room flooded from a leak in the foundation, for the third year in a row? Well, it happened again. Fortunately to a lesser degree and given the inability of any contractor to fix this problem, we've decided to do nothing at this time. I've advised Julia to wear her swimsuit while in her room as a precaution.
Then, when we returned from M.D. Anderson, we had our furnace inspected and were told we need a new furnace. We're waiting for a 2nd opinion before we lay out that cash.
Health Insurance scare: A few weeks ago I received a letter from Dr. Rifkin's clinic advising that negotiations between Rocky Mt. Cancer Centers and Blue Cross had broken down and RMCC physicians would no longer be a part of the Blue Cross network. The financial impact of that would be disasterous for us. Summoning my rusty lawyer skills I immediately called 3 people at Blue Cross as well as a couple of people at RMCC and gave them a piece of my mind. I then called Rifkin at night on his cell phone and offered my mediator skills to help resolve the impasse. (I love the fact that Rifkin will always take a call from me). Not that I am due any credit, but I received a letter today indicating the parties had resolved their differences and RMCC will remain in network. Had they not reached agreement, RMCC would be out of network for me and subject to a $6000 deductible, plus paying only 70%, while other centers, such as M.D. Anderson would be in network and therefore subject to a much lower deductible, after which they would pay 100%.
Who said we need health care reform? After 15 years of doing insurance litigation and after more than 4 years as a patient drawing upon health insurance, I continue to be an advocate for a single payor system. When you become seriously ill (especially when its through no fault of your own) and can't work at your previous profession, you should not have to deal with whether you will be able to get the care you need or whether you will face financial ruin trying to stay alive. Dealing with an illness is stressful enough without compounding the problem by injecting such financial uncertainties into one's life. While the polling shows that most people are satisfied with their current health insurance, I am quite confident that a vast majority of those people have not had many claims made on their insurance. Once you are forced into constant use of your health insurance you see how broken the system is. OK, I'll get off my soapbox now.
The new MRI/Sauna: I had another 1 1/2 hour MRI at M.D. Anderson. This time in a new machine. First, I've been fighting a cough for about 3 weeks and told the technician I hoped I could get through without much coughing, but I had cough drops to help. I was told to spit out the cough drops and no coughing would be allowed. Hmmm. OK, so I think, I'll keep my throat moist by swallowing. In I go. The hammering noise starts. I want to cough. I swallow. The technician yells through the microphone, "No Swallowing. Don't move." Right. Don't cough, don't swallow, don't move. I did the best I could, but was reprimanded repeatedly for swallowing. And then there was the sauna. I was warned that this machine heated up much more so than the old model. About 20 minutes into this scan a sweat breaks out on my forehead, dripping into my eyes, ears, nose, etc. I dare not move. When I come out an hour later my scrubs are soaked with sweat. I look like I've been in a sauna or just finished a rigorous workout. I walk out into the dressing area where other patients are waiting to be scanned. They look at me quizically as if to say, "what is going on in there?" Of course, most of them are not scheduled for the full body, 1 1/2 hour scan so they won't have quite the workout I did. A nurse walks by and says, "you're overcooked."
Bone Marrow Surprise: This past Wednesday I'm scheduled to see Rifkin to discuss the M.D. Anderson recommendations. When I check in they tell me I'm early for my bone marrow biopsy.
"What biopsy?"
"Oh, no one contacted you? Well, have you eaten this morning?"
"Yes, I just had breakfast."
"Well, you can reschedule or you can have the biopsy done without anesthesia."
"Let's get it over with," I say and I have yet another biopsy without pain medication. I did get some ativan to help me forget the procedure. Either the ativan is working, or Rifkin is really good, as I don't remember it being too painful.
Sleeping Pills: I've finally begun weaning myself off the sleeping pills. My sleep cycle was messed up after Little Rock and then I started with the every other day steroids which led to my taking sleeping pills nightly since I returned to Denver. It was either that, or not sleeping and feeling doubly exhausted. The last few nights I've been able to sleep without the aid of Lunesta and I'm elated. Clear headedness returns!
Return of the World Traveler: Julia returned to Denver this Friday after spending the last 2 weeks in Dubaii and Pakistan, with one of her best friends. She has regaled us with stories, including a confrontation at the Lahore airport where she stood her ground while a Pakistani tried to shake her down for more money for a phone call. She also underwent quite an interrogation by customs, questioning just what she was doing in Pakistan. But what an experience she had. I told her that with these travels she is likely to be on some government list of people to watch.
NYC Fits Like a Glove: Catherine loves the Big Apple. Susan's genes are alive and well in our eldest daughter. Cate thinks there's no place better than NYC. She sounds so happy, loves the city and her job at Yahoo. Once she gets some furniture in her apartment I'm sure Susan will be paying her a visit. The question is, will Susan ever return?
The Short Term Treatment Plan: While we are waiting for all the test results the path forward seems to be pointing toward adding revlimid to the prednisone. That will be tolerable. We hope it does some damage to the myeloma cells so the mini allo transplant can go forward. If so, we're likely to have that done at M.D. Anderson in Houston. As always, we don't plan very far ahead. One step at a time, one day at a time.
Reflections: I think the best description of our state of mind would be, we're tired. The last year has been difficult to say the least. The trip to M.D. Anderson was too reminiscent of Little Rock. We feel like we have to gear up for another long siege and there are days we aren't sure we have the energy for that. Tracking the test results, the numbers, the cancer levels feels at times like a diversion from the heavier issue of dealing with an incurable cancer. In our own private thoughts I know we are probing and searching for some meaning in all this. Sometimes we talk about it but most of the time we prefer not to think about it. The "we" I speak of isn't just Susan, me, Cate and Julia, or even my brothers, sister and mom. It is all of us--yes, you included. I can sense the compassion, concern and yes, even the fear. Fear of loss. It touches me deeply. But none of us should be afraid. This experience has caused many of us to look at our lives differently, and in many cases to live with greater depth, compassion and understanding. I continue to trust and to know that things are as they are supposed to be. As many of you know I have been blessed to have a spiritual teacher whose teachings and practices have provided a vehicle for me to work toward transcending this disease. Oh, I have my days. But most of the time, with the help of my meditation practices and the support of so many people, I am filled with gratitude for being given a life filled with so much love and compassion. Thank you.
Dan
Then, when we returned from M.D. Anderson, we had our furnace inspected and were told we need a new furnace. We're waiting for a 2nd opinion before we lay out that cash.
Health Insurance scare: A few weeks ago I received a letter from Dr. Rifkin's clinic advising that negotiations between Rocky Mt. Cancer Centers and Blue Cross had broken down and RMCC physicians would no longer be a part of the Blue Cross network. The financial impact of that would be disasterous for us. Summoning my rusty lawyer skills I immediately called 3 people at Blue Cross as well as a couple of people at RMCC and gave them a piece of my mind. I then called Rifkin at night on his cell phone and offered my mediator skills to help resolve the impasse. (I love the fact that Rifkin will always take a call from me). Not that I am due any credit, but I received a letter today indicating the parties had resolved their differences and RMCC will remain in network. Had they not reached agreement, RMCC would be out of network for me and subject to a $6000 deductible, plus paying only 70%, while other centers, such as M.D. Anderson would be in network and therefore subject to a much lower deductible, after which they would pay 100%.
Who said we need health care reform? After 15 years of doing insurance litigation and after more than 4 years as a patient drawing upon health insurance, I continue to be an advocate for a single payor system. When you become seriously ill (especially when its through no fault of your own) and can't work at your previous profession, you should not have to deal with whether you will be able to get the care you need or whether you will face financial ruin trying to stay alive. Dealing with an illness is stressful enough without compounding the problem by injecting such financial uncertainties into one's life. While the polling shows that most people are satisfied with their current health insurance, I am quite confident that a vast majority of those people have not had many claims made on their insurance. Once you are forced into constant use of your health insurance you see how broken the system is. OK, I'll get off my soapbox now.
The new MRI/Sauna: I had another 1 1/2 hour MRI at M.D. Anderson. This time in a new machine. First, I've been fighting a cough for about 3 weeks and told the technician I hoped I could get through without much coughing, but I had cough drops to help. I was told to spit out the cough drops and no coughing would be allowed. Hmmm. OK, so I think, I'll keep my throat moist by swallowing. In I go. The hammering noise starts. I want to cough. I swallow. The technician yells through the microphone, "No Swallowing. Don't move." Right. Don't cough, don't swallow, don't move. I did the best I could, but was reprimanded repeatedly for swallowing. And then there was the sauna. I was warned that this machine heated up much more so than the old model. About 20 minutes into this scan a sweat breaks out on my forehead, dripping into my eyes, ears, nose, etc. I dare not move. When I come out an hour later my scrubs are soaked with sweat. I look like I've been in a sauna or just finished a rigorous workout. I walk out into the dressing area where other patients are waiting to be scanned. They look at me quizically as if to say, "what is going on in there?" Of course, most of them are not scheduled for the full body, 1 1/2 hour scan so they won't have quite the workout I did. A nurse walks by and says, "you're overcooked."
Bone Marrow Surprise: This past Wednesday I'm scheduled to see Rifkin to discuss the M.D. Anderson recommendations. When I check in they tell me I'm early for my bone marrow biopsy.
"What biopsy?"
"Oh, no one contacted you? Well, have you eaten this morning?"
"Yes, I just had breakfast."
"Well, you can reschedule or you can have the biopsy done without anesthesia."
"Let's get it over with," I say and I have yet another biopsy without pain medication. I did get some ativan to help me forget the procedure. Either the ativan is working, or Rifkin is really good, as I don't remember it being too painful.
Sleeping Pills: I've finally begun weaning myself off the sleeping pills. My sleep cycle was messed up after Little Rock and then I started with the every other day steroids which led to my taking sleeping pills nightly since I returned to Denver. It was either that, or not sleeping and feeling doubly exhausted. The last few nights I've been able to sleep without the aid of Lunesta and I'm elated. Clear headedness returns!
Return of the World Traveler: Julia returned to Denver this Friday after spending the last 2 weeks in Dubaii and Pakistan, with one of her best friends. She has regaled us with stories, including a confrontation at the Lahore airport where she stood her ground while a Pakistani tried to shake her down for more money for a phone call. She also underwent quite an interrogation by customs, questioning just what she was doing in Pakistan. But what an experience she had. I told her that with these travels she is likely to be on some government list of people to watch.
NYC Fits Like a Glove: Catherine loves the Big Apple. Susan's genes are alive and well in our eldest daughter. Cate thinks there's no place better than NYC. She sounds so happy, loves the city and her job at Yahoo. Once she gets some furniture in her apartment I'm sure Susan will be paying her a visit. The question is, will Susan ever return?
The Short Term Treatment Plan: While we are waiting for all the test results the path forward seems to be pointing toward adding revlimid to the prednisone. That will be tolerable. We hope it does some damage to the myeloma cells so the mini allo transplant can go forward. If so, we're likely to have that done at M.D. Anderson in Houston. As always, we don't plan very far ahead. One step at a time, one day at a time.
Reflections: I think the best description of our state of mind would be, we're tired. The last year has been difficult to say the least. The trip to M.D. Anderson was too reminiscent of Little Rock. We feel like we have to gear up for another long siege and there are days we aren't sure we have the energy for that. Tracking the test results, the numbers, the cancer levels feels at times like a diversion from the heavier issue of dealing with an incurable cancer. In our own private thoughts I know we are probing and searching for some meaning in all this. Sometimes we talk about it but most of the time we prefer not to think about it. The "we" I speak of isn't just Susan, me, Cate and Julia, or even my brothers, sister and mom. It is all of us--yes, you included. I can sense the compassion, concern and yes, even the fear. Fear of loss. It touches me deeply. But none of us should be afraid. This experience has caused many of us to look at our lives differently, and in many cases to live with greater depth, compassion and understanding. I continue to trust and to know that things are as they are supposed to be. As many of you know I have been blessed to have a spiritual teacher whose teachings and practices have provided a vehicle for me to work toward transcending this disease. Oh, I have my days. But most of the time, with the help of my meditation practices and the support of so many people, I am filled with gratitude for being given a life filled with so much love and compassion. Thank you.
Dan
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