Still on Track

Good visit with Rifkin today. Everything is a go for Houston. He is very pleased with my recovery, and probably a bit surprised, as I was quite compromised when I first arrived back from Little Rock. The bone marrow still doesn't work quite right, but I'll leave that problem to Mike's cells. IGGs are at 1875 (normal being 600 to 1600). M spike is stable at 1.4. White count is a bit low at 2.2 but he is unconcerned about that. One more visit with him next Monday, then we're off to M.D. Anderson.

The past 2 weeks have presented yet a couple of more challenges. A cough/cold/wheeze lead to an early discontinuation of revlimid. Rifkin cancelled my last week of revlimid to allow my lungs to recover. The CT scan brought some relief, as it showed no pneumonia. But my immune system is ill equipped to deal with cold symptoms, etc. It just takes about twice as long to rid myself of the crud. During this fight with the crud (I get it every February), I got hit with the worst of the steroid withdrawal, including the shakes (DT's?). This has not been fun, but today it feels like I'm come through the worst. I've got one week left of low level steroids (10 mg. every other day). So, enough of my complaints. Everything is a go at M.D. Anderson. My brother has been through a couple of days of testing and they'll harvest his stem cells within a week to 10 days. Susan and Julia will depart in Susan's little Subaru on Feb. 26th and I'll follow by air the next day. Testing starts March 1.



Catherine will start training for the NYC triathalon in about a week. She is doing this to raise money for the Leukemia Society. Check out her web page: http://pages.teamintraining.org/nyc/nyctri10/catherine.

I'll try to provide one more post before we start our sojourn to the south.

Love to all,

Dan

We Have a Date

I've begun the 2nd week of my last cycle of revlimid. I had a 2 week break due to low white count, which brought concern about whether the IGGs would start an upward trend. Fortunately, the steroids apparently held them in check. IGGs at 2021. M spike went up from 1.4 to 1.5. Rifkin says its time to go to Houston. We are tailing off on the steroids (decreasing the dosage by 10 mg. each week). Brother Mike will be in Houston this week for his first round of tests. Mainly blood work I think. Then back in 2 weeks for a fully week of shots and stem cell harvesting.

My testing begins March 1; admitted to the hospital March 10 and the three drug chemo is administered over the next couple of days. Mike's cells will be transplanted on March 15 and the metamorphosis begins. YIKES!!!! I thought human cloning was illegal. Or maybe this will qualify as identity theft. And the idea of two Mike Patterson's wandering around this earth is likely to cause some people to run for the hills. I told Mike I would appreciate receiving some of his hair cells, as I seem to have lost most of my hair. So there you have it.

Susan and Julia will once again be hitting the road in the days before March 1. I will once again be taking the easy road and catching a flight to Houston, all to meet at Susan's brother, Gary's house. And they complain that I never take them anywhere!

I sit in disbelief at our experience over the last 5 years (On March 23rd it will be 5 years since diagnosis) and have even greater difficulty believing this will be my 3rd stem cell transplant.
While I feel more tired going into this than ever before, I know I have a month to pull myself together, brace for the inevitable, and walk through the fire once again. Susan is in the same place as I am. Not a day has gone by, however, without our being deeply grateful for all the extraordinary people in our lives. We continue to feel your love and support and we know we will endure.
Onward and upward,
Dan

Bound for Houston

Last week's white count, even after three neupogyn shots, only rose to 3.7, so resumption of the revlimid was delayed until my lab work today. Blood count today was good. White count holding at 3.8, platelets at 94, hemoglobin 10, and hematocrit 30. Good enough to go through another cycle of revlimid (3 weeks). After that, I'll have 3 weeks to wean off the prednisone. Sometime during that 3 weeks we'll be moving to Houston to get tested and prepared for the transplant from brother Mike.

I'll be in the hospital at M.D. Anderson for a month for the transplant and recovery. They'll give me immunosuppressants so I don't get in too big of a fight with my brother's stem cells, then they start the monitoring to see how I'm handling the change from my immune system to his. (I'll even end up with his blood type, rather than mine). Then I'll be "confined" to Houston for 3 months in case I pick up any bugs. We'll be staying with Susan's brother during that time. If I get sick, even so much as a mild cold, I'll have to go to the hospital immediately, as I understand it. I've committed to go to my 40th high school reunion back in Dickinson, over the 4th of July, so I'm planning on departing Houston in late June.

I had to have one final discussion with Rifkin about other options. In his view there aren't any other options. He and Dr. Giralt see this as the opportune time to do the transplant. More cycles of revlimid are not an option due to the risk of increased toxicity and lack of eligibility for the transplant. But, we have accomplished more than what was expected by either Rifkin or Giralt with the revlimid and prednisone. As Rifkin described it, "you'll be buffed and polished and ready for transplant after this next cycle." So here we go. Just call me Mr. Florsheim.

My brother Tom visited over this past weekend. We had a great time, including working through his list of home repair jobs. The topper was the scrabble game on Saturday night, which I pulled out on the last play of the game. A come from behind victory, not unlike the one the Indianapolis Colts pulled out on Sunday.

Thank you everyone for hanging in there with us.
Love,
Dan

Struggling White Count Leads to Hiding in Basement

First, let me correct a typo in my previous post. My white count as of that date was 1.8, not .8. It remains there. "So what", is the likely response from most of you. But the MM patients who read this will be tuned in to those numbers. My neutrophils were .8 and are now .6. (normal is 1.5 to 7) Neutrophils are the best of the white cells. So, rather than start cycle 3 of revlimid I got a neupogyn shot today to stimulate white cell production. I'm lined up for shots for the next 2 days, then we'll see if I'm ready to start the revlimid. In the meantime I've holed up in the basement to watch sports, westerns and comedies on TV in order to avoid exposure to any nasty bugs.

Given my response to the revlimid and the dipping white count, this could be my last cycle. Then, we'll be on to M.D. Anderson. It is possible I'll go through 2 more cycles, but I'm thinking that's unlikely. IGGs are now at 2000 (down from 4600 at the start) (normal is 700 to 1600) and M protein is now 1.4 (down from 3.2 before we started the steroids this summer). Before the transplant I'll have to go through another week of testing to restage my disease. I also have to be off the revlimid and steroids for 3 weeks or so, so the actual transplant may not commence until March. We're also starting the scheduling for Mike to go through testing and then harvesting of his cells.

Mentally I know Susan and I aren't ready for another 4 months of "treatment" away from home. But then, we weren't ready for any of this, so I guess we'll just pack it up and move on down to Houston for awhile. Her brother Gary is being so nice in his preparations for our "visit", including purchasing a recliner for my comfort. I call him regularly to remind him that he still has time to get out of town before we arrive. What would we do without our families?

Speaking of which, Catherine is threatening to sign up for the Yahoo triathalon team to raise funds for the Leukemia Society. Talk about inspiration! I'll plan on being in NYC in July just to see her finish. Don't let this post put any pressure on you, Catherine. But we're all waiting for your final answer. And since I'm not on facebook you'll have to post that response here.

Both Rifkin and Giralt continue to be very pleased with my response to the revlimid, as are Susan and I. As an aside, I just picked up my refill of 21 days of revlimid. A mere $8,000, which my insurance company and I split. Nothing like meeting my high deductible with one prescription. That's all for now.

Dan

Donor Selection

M.D. Anderson has preliminarily selected brother Mike as the donor. The criteria seemed a bit ambiguous to me so I don't think there was one overwhelming factor that dictated the decision. Tom thinks its favoritism towards a fellow Texan. He still has to pass the tests to make sure he is fit to be a donor. I've told Tom to stay in the wings in case we need a last minute replacement. Timing is still uncertain but we could be gearing up within a couple of months.

Revlimid continues to do its job. IGGs have dipped to 2000. The revlimid also hammers my white count (.8 on Monday) so I am still hiding from crowds, avoiding shaking hands, etc. Could this treatment turn me into an anti-social introvert? Unlikely.

I am so impressed by Rifkin's care of me since returning from Arkansas. He has literally brought me back from the edge. Although my bone marrow isn't working like it should, at least it's working to some degree. And he and his friends at M.D. Anderson and Mayo have found a regime to bring the cancer levels down and open the door for the transplant. We had our doubts this summer but, once again, we have a path forward. What a life!
Much love to all,
Dan

The Blue Moon

Perhaps you had the good fortune to see the beautiful full moon two nights ago. This was the second full moon in a month and thereby earned the title of "blue moon". This occurs about every 2 to 3 years. The next time the blue moon will fall on New Year's Eve, however, is December 31, 2028. The moon reminded me of one of my favorite songs by Van Morrison. Part of the lyrics are set forth below:

Once every once in a while
Something comes along that feels just right
Once every once in a while
Just like switching on an electric light
And sometimes you try till you're blue in the face
But when you get that feeling
Nothing's going to take its place

Once in a blue moon
There's a thing called happiness
It happens when you're in
A state of natural grace

When the wind is blowing
All around the fence
I get that happy feeling
Things start making sense
All just feels so lucky
That you just can't go wrong
Once in a blue moon
Someone like you comes along

Once in a blue moon
There's a thing called happiness
It happens when you're in
A state of natural grace.

It's a great tune. And I wish for all of my friends that you find happiness more frequently than every blue moon. It's there for the taking, this I know. Much love to all of you for the new year.
Dan

The "Official" Cycle 1 Numbers

Although blood is drawn weekly, the blood work deemed most important is that which is drawn the first day of the first week of each cycle. So, for the first cycle of revlimid here are the numbers: IGGs 2300 (down from 4600); M protein 1.7 (down from 3.0). We are all quite encouraged by this response. Other data is also good. White count is back up to 2.6 from last week's 1.9. Platelets 88 (OK for me). Creatinine is down to 1.1--in normal range again, down from 1.6.

I continue to have trouble with the revlimid, such as nausea, vomiting, headache, and fever. These seem to occur during the first week of the cycle and then decrease. It all feels manageable in light of the Arkansas experience as well as the progress being made.

I asked Rifkin today how I could have such a good response to one drug, when 15 high dose drugs were basically ineffective. His response: "That just shows you how much we don't understand about myeloma." I also asked if my response was such that I might have other options, rather than another transplant. The answer: "No." He explained that he hopes to have my myeloma low and stable enough such that I will be a perfect candidate for the transplant. Trying some other treatment which might not work could put me in a position where I would no longer be a candidate for transplant and then I would be out of options. I was close to that upon returning from Arkansas when my red cells, white cells, and platelets were all so low. If they hadn't recovered to the degree they have, I couldn't have a transplant.

I'll probably go through one or two more cycles, then we'll be off to M.D. Anderson. Still no word on which brother gets the privilege of being my donor. Happy New Year everyone. 2010 is just around the corner.
Dan

Stepping Back From The Brink

I've often said that facing the ups, downs, and uncertainties of this disease is like being faced with trying a losing case. When forced to try a case in court that Iwould prefer to have settled, the number one rule I followed was "never let 'em see you sweat," and you never know what might happen. Since coming home from Arkansas with my dysfunctional bone marrow, transfusions and growth shots (neupogyn) every 2 to 3 days, my blood counts in the toilet, and my cancer levels on the rise, I've had to remind myself of that rule numerous times. So today was, in some ways, as sweet as a favorable jury verdict:

After one cycle of revlimid (3 weeks), the IGGs have dropped from 4600 to 2700. This is tremendous. I also find this response most curious. The super BEAM plus chemo I received prior to transplant in Arkansas consisted of 9 drugs: Carmustine (BCNU), etoposide, Cytarabine, melphalan, thalidomide, velcade, dexamethasone, rapamycin (immunosuppressant) and one more drug, which escapes me; all given at maximum dosage over a 5 day period. The result was a drop in IGGs to 2500, which lasted a week or two at most and then they started climbing again, and a drop in white count to 00, which took me months to bring back. The Super BEAM plus was administered after I had already been given 5 days of 7 drugs, also in high dose, followed by 14 days of low dose chemo with only 3 drugs. So I invite all you more biologically/pharmacologically inclined readers to explain to me how a relatively low dose of revlimid, coupled with a moderate to heavy dose of prednisone can achieve results comparable to those 15 toxins I received in Arkansas.

So what does this all mean vis-a-vis future treatment? Assuming some continued response, which Rifkin seems to expect, my cancer levels are expected to go down to a level that will increase the likelihood of some success with the transplant from one of my brothers. I told Rifkin today I wanted to drive this myeloma into the basement with this revlimid therapy, before the transplant, in order to reduce the amount of disease the new cells would have to eradicate. The complicating factor is my white count. It dropped to 1900 (1.9) and my neutrophils (the really good white cells) are at 1000. I'm officially neutropenic (abnormally low white cell count). Rifkin wants to continue the revlimid therapy at the current dosage (15mg) in light of the good response, but warned me to stay away from crowds, wash hands, stay away from sick people, etc. etc. I think that's why I get sent to the hospital whenever something like pneumonia shows up. Counts will be checked in a week.

Other blood work looks good and the creatinine (indicates kidney function) is back to 1.3 (high end of normal).

Still no word on which brother's stem cells will be used, but momentum seems to be building for that cage fight. Trash talking between the bros has already started.

Best to all of you.

Dan

Stem Cell Cagefighting for Christmas

Not surprisingly, my two brothers continue to be complete HLA matches, i.e., they match the 10 identifiable antigens (HLA=human leukocyte antigen). These antigens regulate how the body recognizes and rejects foreign tissue. The doctors have not yet decided which brother's stem cells to use. Once again I suggested Mike and Tom "take it out back" and I'll take the stem cells from the winner. Rifkin's assistant was initially appalled, then realized I was joking. Or was I? Perhaps a stem cell cagefight for the holidays. We could make it a fundraiser and send the money to stem cell research. Once again it seems I'm getting my brothers into a fight, just like I used to do growing up in ND.

Blood work this week was good for me. White count 2.7, which is good for me when I'm on chemo; hemoglobin 10.2, hematocrit 32 (quite good for me on therapy) and platelets 71--stable. No word on IGGs. They'll be measured this Monday when I start cycle 2, results probably after Christmas.

This week I'm off revlimid, which is nice. That little pill really tires me out and makes me lightheaded. I function on it, but when I get off it, I realize the work involved in day to day activities. My skin is once again peeling off and I haven't been sunning myself. I feel like a snake--molting. What's up with that? My neuropathies are also worsening. The left foot continues to lose feeling. I think that as the years go on and therapies get piled on top of one another, my tolerance lessens. That being said, I always tell my doctor I'm doing fine. I have few options left and do not want to provide any basis for either discontinuing the treatment or reducing the dosage. Numb feet presents all kinds of opportunities. Walking on hot coals; walking barefoot on the ice; wearing shoes 2 sizes too small, kicking the walls, etc. The circus beckons. On the other hand the numbness will likely interfere with my workouts on the balance beam and pogo stick.

The pneumonia is gone, I think. Chest x ray today will tell the tale.

That's it friends. Have a great holiday, Christmas, Hannukah or whatever you celebrate. We wish for you much love, peace, and prosperity for the coming year and are filled with gratitude we have such a wide circle of fine family and friends.
Dan

Pneumonia Comes Early This Year

I have had pneumonia for each of the past 5 years, usually in February. This year it hit me in December and I was ordered to the hospital last Friday. Nothing like checking into the hospital for the weekend. But I broke out, am home and feel much better. A few IV antibiotics seem to do the trick. This stuff shows up in the exact same place in my left lung every year. The CT scan did not show any obstruction or scar tissue so I'm saved from having a scope shoved down my throat. I do know that you can develop a susceptibility to this stuff and it seems I've got that.

I also had a relatively good meeting with my orthopedic surgeon this week. He continues not to want to do anything surgically, which is OK with me. He also showed me on the PET scan and MRI films that the new lesions on the arms and legs aren't really very bad. In fact, you can see the evidence of myeloma in the marrow portion of the bones, but it has not worked its way into any destruction of the bone. So, if the revlimid works, perhaps the bone marrow will heal and no bone will be eroded. I do have one vertebra pushing very close to the spinal cord, but no symptoms of cord involvement. So that's a good thing, too. We ended on a positive note with him exclaiming that for a patient with myeloma I am doing great.

Kidney function is improving. Creatinine is down to 1.4, almost within normal limits. If I drink any more water I'm going to float away!


This pneumonia did have one positive aspect which is it caused my white count to go up. All the way to 6.2. Now that is right in the middle of normal, but for me, as my doctor said, its akin to a normal person being at 25. The good part is that my marrow was able to muster a response to the infection. Something is working in the marrow, which is more than could be said 5 months ago.

I finish up the first cycle of revlimid this week. We'll check the IGGs when I start my second cycle, although no progress doesn't mean it's not working. Sometimes it takes 6 weeks or so to see movement.

That's the status for now. Best wishes to everyone, happy holidays, and I sure wish it would warm up. I am reminded, with this 0 degree weather, why I left North Dakota. Apparently I didn't go far enough south.
Dan

And A Few More Things

Remember all those baby diseases, like measles, mumps, etc.? Well, it seems whatever immunities I had have been wiped out by the high dose chemo and transplant. I have no immunities to mumps, measles, polio, rubella, hepatitus A, B, or C, tetanus, and probably a few others. The debate among my doctors is whether to vaccinate me now or wait until I've finished with my chemo and/or next transplant. I guess I'll stay away from infants and unvaccinated small children.

I've found some relief from the dizziness and headache--sleep. I've been tryng to get through the days without my afternoon naps but have realized that depriving myself of the 2 hour nap in the afternoon was leading to the headaches. So I've resumed my napping and my head has settled down.

The revlimid is also causing more neuropathies. But, I've found a temporary solution for that as well. A heating pad beneath my feet at night seems to help with the pain, keep my feet warm and reduce the muscle cramping in my lower legs. I can't believe I've wrestled with cold feet for the past 3 years when such a simple solution lay at my feet, so to speak.

In addition to the blood counts, we're also watching the measures of my kidney and liver function, creatinine being the main one. My creatinine was slightly elevated when I returned from Little Rock. 1.0 being perfect and I was at 1.2. It has now risen to 1.6, which is too high. So far no remedy other than being told to drink more water. We have to be vigilant as the chemo and the myeloma are known to adversely affect kidney function. I've also got much more iron in me than I need. This is due to the multiple transfusions and is also a trait of the myeloma--it holds onto iron apparently. So that requires another drug in the morning before I eat. That drug has some awful side effects, but we're muddling our way through.

As the years go by with this nastiness it does feel that the complications and side effects become more complex. I still bounce back but it does seem the bounce isn't as high as in the early years. I'm sure my age is a contributing factor. We're not getting any younger, as they say. Which reminds me; I watched the Rock & Roll Hall of Fame concert the other night on HBO. OMG, does Mick Jagger look tired!! That Rolling Stone has rolled a little too long. And with that, I'll close for now. ROCK & ROLL.
Dan

Revlimid Revisited

One week of revlimid down, 11 (or 17) to go. Having been on revlimid before, I expected to tolerate it fairly well and but for the dizziness it's going OK. I suspect the dizziness is due to the combining every other day prednisone with it. Last time I only took steroids once a week with it. Anyway, not surprisingly it's had an effect on my blood counts. White count dropped a bit from 3.4 to 2.8. Hemoglobin is down to 9.9 from 10.1. Platelets are taking the major beating, having dropped 46 points, from 117 to 71. That explains the bruising on my arms and legs. The slightest bump and I've got a big black and blue mark. Adds to the image of being a warrior, I guess.

It's too early to know if the drug is having any effect on the cancer. That will take 6 weeks or longer. Rifkin continues to look for other options and told me he is meeting with some Japanese pharmaceutical reps to see if he can get HSP 90 (a drug that has gone through clinical trials and had some success, but for reasons I don't understand, is not being produced anymore). This is supposed to be a nontoxic chemo, ie., no side effects. Wouldn't that be nice?

We had a great Thanksgiving. As usual Susan prepared a feast fit for an army and we all indulged ourselves for days on her great cooking. My mom and her husband came down from North Dakota and we were also joined by my nephew, Rob Scheeler (who is in grad school at CU) and his girlfriend, as well as a few other friends. This was the first visit with my mother since we headed off to Little Rock, so it was long overdue and we had much ground to cover. We did our best, spending long hours around the table. Julia especially likes to hear of the exploits of my brothers, sister and me when we were young. It was mostly stories about Tom and Mike misbehaving, however, as I was usually at church, doing my duties as an altar boy.

And that's the status this Thanksgiving. Continuing on our journey, one day at a time.
Best wishes to all for a peaceful holiday season.
Dan

Getting Reved Up

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

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

M.D. Anderson Consults

We've finished our consults with the doctors here at M.D. Anderson and now I just having testing to complete over the next 2 days. We also have a few tests that will be done in Denver (bone marrow biopsy and skeletal survey.) We met with the head of the transplant team (Dr. Giralt) and the head of their myeloma treatment team(Dr. Orlowski). Dr. Orlowski and his father developed velcade. These docs are going to communicate with Dr. Fonseca at Mayo in Scottsdale regarding my case and get his input as well. So, at a minimum I feel I am getting the best advice possible from the best myeloma treatment centers in the country. (Dr. Barlogie, Dr. Rifkin, Dr. Giralt, Dr. Orlowski, and Dr. Fonseca). Unfortunately no one has a silver bullet for this disease. The short term strategy is to add a chemo drug to the prednisone to try to get the cancer levels down. Orlowski recommended revlimid. Giralt talked about pomalidomide and bundamistine (sp?). We'll be discussing this with Giralt by phone on Monday and we see Rifkin on Wednesday. Mid term strategy is to be ready for a mini allo transplant (from one of my brothers) if we get my cancer levels down. It seems that it is very unlikely, given the resistant nature of my myeloma, that any chemo drug would give me remission or even long term nonprogression of my disease. So, we have to consider the mini allo transplant with all its attendant risks.

One of the interesting things Giralt is working on is use of a vaccine as part of the mini allo transplant. They would take some of my myeloma cells, kill them, then inject them into my donor to provoke an immune response before transplanting the donor cells into me. Because the myeloma cells are dead cells, this process presents no additional risk to the donor.

We'll make some decisions next week, I suspect, at least with respect to the short term strategy. That's it from Houston for now.

Dan

Halloween in Houston

A sit down, of sorts, with Rifkin today to discuss the "plan." I had my list of questions that Suz and I put together yesterday. We're booked for 3 days of testing MD Anderson starting Oct. 28th. We'll follow that up with a conference call from Denver the following week to receive their recommendations re treatment. To say we're not looking forward to it would be an understatement. Visions of MRI's, Pet Scans, bone marrow biopsies, etc. in Little Rock haunt me. We're assured MDA is not Little Rock, although we're also told to expect the full workup. Rifkin has already discussed my case with Dr. Giralt at MDA. I say that my conversations and the paperwork from MDA look like they are planning another transplant for me. Rifkin says they will probably recommend a mini allo transplant (from one of my brothers) if we can get my cancer levels down with chemo first. Nothing set with Mayo yet except we're told I don't qualify for the current pomalidomide trial because I did not fail to respond to revlimid. As noted in the previous post, Mayo will be starting another pomalidomide trial, maybe as soon as November, that will not require a revlimid failure to be eligible. So, following the MDA workup, we'll take a trip to Mayo in Scottsdale and at least get on the list for the next trial. Rifkin instructed us that our job at MDA is to learn as much as we can, ask many questions and bring the info back to discuss with him. As he said, these are the people that are running the clinical trials with these new drugs and have the most knowledge about how people respond, side effects, etc. So, I guess I'll put on my best lawyer interrogation hat and try to get that Ph.D. in hematology/oncology.

The idea of a mini allo transplant is disconcerting. Over the years, and with the various doctors and nurses who have treated me, we have heard all points of view. We've heard from both Rifkin and Barlogie that it is very risky and also that it can be a true cure. I guess both statements are true. It seems that Rifkin's goal is to find a treatment for me that will bring my cancer levels down and then deal with the question of whether to take the risk of a mini allo transplant. Since there is no way to prepare for making such decisions, we try to put that issue on the shelf and deal with it if and when we have to. I will say this much: Rifkin has managed to stabilize my disease so that we at least have a chance to participate in a clinical trial and bring down the disease levels. In May and June when I was getting regular transfusions and neupogyn shots I was not very optimistic. An every other day dose of prednisone has done what massive amounts of chemo could not---keep an angry disease at bay. Go figure. Rifkin was clear, however, that this won't hold forever and so now is the time to start treatment.

Final note: counts remain stable and continue to slowly go up. White count: 4.4, hematocrit 28, hemoglobin 9.6, platelets 122. No IGGs to report. The cancer center hasn't yet received its doses of H1N1 vaccine (swine flu) but because Julia is a health worker she will get her vaccination next week and can also get the vaccine for any family member in a high risk group (like me being immunosuppressed). I will be taking advantage of my connections in the health sector!

I'll check in once we return from MDA. Until then, Happy Halloween.
Dan

The Trials of Trials

First, thank you once again to all who donated to Light the Night. Dan's Team will likely exceed $15,000 once all monies are collected. We had a great time at Darin and Liz Schankers before the walk as well as during the walk. My friends from the Leukemia and Lymphoma Society once again put together a great event. Thank you Joni, Amanda, Tamara, Rebecca and everyone at LLS.

Second, we are trying to keep our chins up as we absorb the Rockies loss to the Phillies in the National League Division Series. Leading 4-2 in the top of the ninth inning, the Rockies couldn't protect their league and lost 5-4. Season over. Ah, what is it those Cubs fans have said for years? Wait 'til next year.

I see Rifkin on Thursday, but don't expect there will be any news. I've spent the last week on the phone with the researchers in charge of clinical trials at MD Anderson and The Mayo Clinic. I'm currently scheduled for a workup at MDA in Houston the end of this month.

We're still working with Mayo. They are not sure I qualify for the current pomalidomide trial as they are unsure whether I ultimately failed to maintain a response to revlimid. Revlimid is a derivative of thalidomide. Pomalidomide is also a derivative of thalidomide, but with fewer side effects than revlimid or thalidomide. Anyway, 2 years ago I responded well to velcade/revlimid/dex, but Rifkin took me off it because of his concern about toxicity. The current pomalidomide trial requires participants to be refractory after treatment with revlimid, i.e., the disease starts to progress while under treatment with revlimid. Rifkin is taking a closer look at my records to see if I still might qualify. If not, there is another pomalidomide/dex trial that Mayo will be starting, perhaps in late November, that does not have this eligibility requirement. However, Rifkin seems a bit uncomfortable with my waiting that long to get treatment. Mayo suggested I could consider going on Revlimid/velcade/dex again and if I failed to respond in 30 days I would probably qualify for the current trial. If I responded, well, that would be good, too. The current trial has 20 slots open. The new trial will have 12 slots for Mayo at its 2 sites--Scottsdale and Rochester. Limited slots available, act now?

So, options appear to be 1) go back on revlimid as discussed above; 2) stay on prednisone and wait for the new trial to open; 3) follow the recommendations at MD Anderson (not yet known). By the first part of November we'll have better info. That being said, I'm sure of a couple of things. First, Rifkin wants me to get the newest treatment available and wants me to get evaluations at both MD Anderson and Mayo. He is therefore, not likely to strongly recommend trying revlimid again. That being said, however, ultimately he will tell me it is my decision. I've been here before. He'll say, here are your options, no one knows what will work, all choices are reasonable. There are many variables here. Revlimid hits the white cell, red cell and platelets hard and my counts have taken a beating. No one could guarantee they will recover. If I go straight to pomalidomide and don't respond, there aren't many choices left (I like to have a drug or 2 "on the shelf" if current treatment fails, if at all possible). If I have to be in residence for some period of time for the trial, MD Anderson would be better because Susan's brother lives in Houston. If I could qualify for the current pomalidomide trial at Mayo they would let me take the drugs here in Denver and be followed by Rifkin, with perhaps once a month visits to Scottsdale. And then there is the question of insurance. I'm not sure what my health insurance will cover. One of the uses of funds raised by Light the Night is to assist patients with funds to pay for the ancillary services necessary to participate in clinical trials. The drug manufacturer usually doesn't charge for the drugs, but there are numerous other costs, such as lab work, imaging studies, drugs to counter side effects. Health insurers often don't cover anything associated with a clinical trial because they deem it "experimental." These are but a few of the issues we are wrestling with.

So we'll just let this percolate for awhile, get more information, and trust that things will work out, as they always do.

Love to all,
Dan

Our Amazing Friends/ With Addendum

As of this moment you, my friends, have donated $9970.00 to the 2009 Light the Night. Thank you for your generosity. I think the total for Dan's Team over the past 3 years is now close to $60,000. The walk is this evening and although the weather here in Denver is expected to be cool and rainy (please no snow), I hope we'll get close to the goal of 100 people walking for Dan's Team. Thank you, everyone, for supporting the fight against blood cancers.

The meeting today with Rifkin was promising in terms of the number of new drugs that are in various stages of development. Although pomalidomide and carfilzomib are furthest along, there are many others that we should see in the next 5 years or so. The research and development of these new drugs is greatly aided by the Leukemia and Lymphoma Society's financial support from its Light the Night walks around the country.

No news on the eligibility for the clinical trials yet. So Rifkin invited me to email Mayo and M.D. Anderson and see if I could get their attention. Yeh, I know how to be a pest when I want to, so I suspect within the next few weeks we'll know something definitive. In the meantime, my numbers continue to hold. In fact, the white count, hematocrit and hemoglobin, and platelets moved up a notch since last visit (still below normal, but holding). There appears to be some discrepancy between the IGGs measured here and in Little Rock (ones here are higher--hovering around 4700), but holding there. Rifkin said he has a few patients whose IGGs have held around 5000 for 15 years. I'll take that.

I still have issues with my back and my feet and will be going back to the orthopedic surgeon as it feels like something is amiss again in the lower back. In addition to being numb my feet also spontaneously cramp up, with the toes curling under and locking up. Rifkin attributes this to the prednisone and said, not much more I can do about it (I already take a vitamin B complex, vit. E, L Glutamine and magnesium for the cramping, but they don't help much). Perhaps, after all these toxins I am morphing into a hobbit. That would seem to fit with the loss of height, the expanding wasteline, etc. But all in all I'm certainly doing better than mid May when we returned to Denver. Quite honestly, I don't feel like I'm on the verge of death anymore. Rifkin has done a wonderful job of bringing me back from the abyss through his very patient, less toxic approach to my disease.

The management of the anxiety that both Susan and I felt upon our return to Denver has been quite a challenge. We continue to learn to let go of those fears. I am at a place today, thanks in large part to my meditation practices, that I would describe as almost being incapable of worry. We have been forced to face and accept the uncertainty of our future and as a result, have learned to find great joy in most days. Whatever time we have left we will live to the fullest. A good prescription even without a cancer diagnosis. We treasure our family and friendships and trust that things are as they are supposed to be. It does seem that things work out when we stop trying to control the outcomes. The worry over whether my bone marrow will recover, will I be able to get more treatment or qualify for a clinical trial, will my angry disease calm down, is enough to consume you if you allow it. Fortunately, we quickly pulled ourselves out of that muck, and Susan always gently puts on the brakes when my mind wanders there.
So, today will undoubtedly be a good day as we Light the Night. Thank you again for everything.

With much love and gratitude,

Dan

Addendum: Spoke with M.D. Anderson today and they are interested in interviewing me and considering me for one of their clinical trials. I will likely have to travel to Houston soon for the intake. Dan's Team has exceeded its fundraising goal, thanks to you. We are now over $11,000 in donations. Thank you so much.

Light the Night Update

A big thank you to everyone who has donated to Light the Night once again this year. We have raised more than $5,000 and the last week is always when the donations really start flowing. Are all my friends procrastinators just like me? So, if you are planning on donating now is the time. The Walk is one week away: Thursday, October 1. See my website for details: http://pages.lightthenight.org/rm/DenverL09/dpatterson_LTN

A few logistics: The party at Darin and Liz Schanker's, sponsored by Bachus & Schanker, LLC, (www.coloradolaw.net) is a great event, with drinks, barbecue and lots of good cheer. You won't want to miss it. And they want to be sure to have enough for everyone, so if you are planning on attending the party, please RSVP now to Linda Snyder at marketing@coloradolaw.net. We'll walk to the park from there for the Light the Night. The party starts at 4:30 p.m.; see website above for their address.

If you can't make the party, we will meet you at the tent with the banner: Dan's Team.

This Walk is a lot of fun, especially with a good crowd, so make time for yourself and to support this cause. See you there.
As always, we are grateful for all your love and support,
Dan