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