Bouncing Around (With Addendum)

My numbers continue to move around. First, the bone marrow results: 10 days ago the IGGs dropped from 3860 to 3580, and the M spike went from 3.4 to 3.0, giving me some false hope that maybe the cancer was on a downswing. Then the IGGs jumped last week to 4370, M spike 3.4. We're hoping the numbers continue to bounce. The good news is that for the first time since I returned home, I managed to go a week and keep my white count above 2.0 (it's 2.2). Below 2.0 is the standard benchmark for getting a growth factor shot (neupogyn). So, the bone marrow is doing some work and Rifkin has optimism it will continue to improve. Similarly, platelets are holding and actually going up--now up to 67, still a far cry from the normal of 150, but also a good improvement over the below 20 readings I was getting a month ago. Red cells are holding also; haven't had a transfusion in 10 days, which is good, since my iron is highly elevated due to all the transfusions I've had (apparently the body often holds onto iron as a result of many transfusions). Thus, I get a new drug to offset that!



So where do we go from here? Rifkin said that data just came in showing a combination of thalidomide, at low dose (50 mg every other day) and predisone (also 50 mg every other day) works very well for maintenace therapy. We will be starting this in the new future. Thalidomide is a good drug for now because it doesn't affect the blood counts. Thalidomide and dexamethasone (steroid) were my first line of therapy more than 4 years ago and I responded very well, although the dosage was 200 mg, not 50. But Rifkin says 200 mg isn't used any more because of the side effects. Anyway, more treatment is around the corner. Let's all cross our fingers in a collective prayer/wish for this regime to rein in these IGGs and bring these cancer levels down.



For those of you who don't care to follow these numbers, here is my narrative: I feel a lot better than when I first returned home, although my energy still fluctuates quite a bit, and most evenings I'm pretty wiped out. I rode my bike about 8 to 10 miles on Saturday and I think I'm still recovering! In February John Sadwith called me in Little Rock and asked if I would be home by June 21, as he wanted to get us tickets to see Eric Clapton and Steve Windwood. Well, Susan, the girls and I joined John and other friends of his in a suite at the Pepsi Center for some rockin and rollin on June 21. It certainly reminded me of some good times in my wasted youth!

I'm trying acupuncture for my neuropathies but so far no response (only 2 treatments), and I still have thrush so I'm going to turn to the Chinese herbalist recommended by a friend. I've been on gentian violet for the thrush (made from the blossom of the gentian plant)--a home remedy recommended by someone. It took care of most of the thrush but can't seem to eradicate it.

Despite it all Susan and the girls remain in good spirits and won't let me engage in any self pity. I can't say things are back to normal, but life does go on. Our best to all. Have a Happy 4th of July.
Dan

Addendum: Since this posting, new IGGs are at 3720, down 650 from 5 days ago. All this bouncing around only means, at best, my cancer levels are relatively stable.

Coaxing the Bone Marrow

The progress is slow, but at least it's progress. My white count seems to hold for about a week, then it drops below 2.0 (normal being 3.0 to 10.0), and I need another growth factor shot (neupogyn). When I first arrived in Denver I was getting 2 to 3 shots a week. Similarly, the red cells seem to hold for about 2 weeks following a transfusion, then drop. Platelets haven't moved downward in awhile, although they are still a long way from normal ( 58, when normal is 150 to 300). The myeloma markers are bouncing a bit. Last week they dropped to 3660, then up to 3990 and today's report shows them at 3760. Rifkin is hoping they continue to bounce, thereby signalling some sort of plateau and giving my bone marrow more time to heal. Another bone marrow biopsy is around the corner, which will give us a better sense of what levels of cancer we're dealing with and may dictate what course of action we take.

This is tricky stuff. I tried to get some answers today from Rifkin about what the next course might be, but he was noncommital--depends on too many variables. But I did learn this much: He is hoping that a new drug HSP-90 gets approved soon as he thinks its clinical trials showed very good responses. The trials are closed but he doesn't know where this drug in the approval process. He also said he cannot hit me with too harsh a chemo as he fears my bone marrow would never recover. Another transplant is likely in the works (mini allo, i.e., from one of my brothers), but it's too soon to know when that might occur. I need more time to recover and as long as my cancer levels aren't too worrisome, he will continue to keep me off the chemo drugs and steroids.

The body rash is gone and the thrush has diminished but it is a bear to get rid of. The most effective treatment (after more than $100 for 3 different medications) is papaya lozenges, which were suggested by my dermatologist. I'm still looking for the treatment to drive this stuff out of my mouth so I can taste food again.

So I try to go on with a life. I have more energy than a month ago, am going to physical therapy and riding my bike quite regularly; not far but it at least gets the parts moving. (that's my "parts", not the bike's!), and I try not to think about what lies ahead. A mental challenge to say the least. I continue to be very glad to be home. Seeing friends and just getting out to some familiar haunts occasionally is good for my soul. I continue to believe we will navigate these waters as well, especially with all of your help.

I continue to be very grateful for everything we have received these past 4 1/2 years. The blessings have been bountiful.
Love to all,
Dan

Status After A Month Back in Denver

First, picking up where the last posting left off--the bike ride. Prior to embarking on the Little Rock aggressive chemo regime, I was able to ski for 4 hours, or ride my bike 15 or more miles, or swim a mile. The bike ride last week, a mere 2 miles, just about did me in. Not enough, however, to stop me from doing it again the next day, which further leveled me. Today, however, the 2 miles were easier. Strength is gradually returning thanks to physical therapy twice a week. I've also gained 6 pounds in the last 10 days or so--although I lost 5 pounds in the first week back, so I'm a net + 1 pound since returning home. The appetite is improving, although the taste buds are still impaired from the thrush I have had for the past 6 weeks. That also is improving but quite resistant--I'm on my 3rd medication. And then there's the rash, which appears to be history. At first it was thought to be graft host disease, but given the rapid improvement once I started administering a steroid ointment, the thought now is that it was my body's reaction to the thrush, an "oh my god, what is happening to me now" kind of reaction, as explained by my dermatologist. Never heard of that before.



And now the "numbers" report. Myeloma markers (IGGs) jumped from 3800 to 4200 early last week, which caused me much concern, given that my white and red cell counts, as well as my platelets have not yet returned to normal or stabilized. Dr. Rifkin was about to start me on some steroids to try to contain the upward movement of the myeloma, but decided to wait to give me a few more days to continue to "heal", as he put it. Then I get new myeloma numbers: IGGs drop to 3660. Go figure. No treatment and numbers are going down--contrary to the trend over the past month? I didn't believe it, and emailed Arkansas and requested that they ask the lab to verify that number. Six hours later I'm told the lab says the IGG number is correct. I don't know whether we are on a downward trend or just bouncing around, as can happen. The next week or so will tell the tale I guess.



I should note that 2 days before the blood was drawn which resulted in the lower IGG number I started drinking a concentrated vegetable potion that a close friend sent to me. She has been trying to get me to take this for a couple of years, but I have resisted primarily because I didn't know whether it would interfere with the chemo I was taking. Now that I'm chemo free I thought I would give it a try. I would be surprised if some change in IGGs could result from just 2 days of ingesting this new potion. I will, nevertheless, continue to take it as long as I am not on any chemo.



The adjustment to being back home has not been as easy as I expected, but is getting better. The first couple of weeks we were so wiped out we could hardly do much. Then we got the news that my blood counts were not recovering. Then we got hit with a major flood in Julia's room (in the basement) from a heavy spring rain--the third year in a row, despite having hired people each to fix the problem. New contractor has now deposited big piles of dirt on our front lawn as he digs around the foundation to locate the problem. Meanwhile Julia is displaced from her room once again. But, after a month we are returning to some semblance of a life. Susan is pulling out the depression that we both suffered as a result of the lengthy stay in Little Rock with little progress in terms of eradicating this myeloma. I've got more energy and hope that my blood counts stabilize in the next couple of weeks so we can develop strategy for getting back at this myeloma. In the meantime I have tried to get more involved in the trial lawyer's work as I am still the president, even though I've not done much for the association in the past 6 months. In addition, I continue to do what I can to regain my strength. I desperately would love to return to my swimming but I'm sure I won't be allowed in the pool until the white cells have been normal for a few weeks or more.



So that's the scoop for now. Hope you are all enjoying the beginning of summer as much as I am.

Dan