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.
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2 comments:
I can attest to the fact that you sure look a h____ of a lot better than when you returned from LR. When I read that you are riding your bike 10 miles a day, I have to go through a moment where I am really down on myself because I can't bike 10 miles. I know that I had great hopes that Dr. B would bring some kind of magic to your treatment and by this time we would hear that you and Susan were making plans to travel to the Greek Isles. I like what I hear from Rifkin and what he wants to do with your course of treatment. I feel a kind of calm that tells me "sure and steady" will knock-out those d____ cancer cells. So here is to Rifkin, here is to 10 mile bike rides, and here is to your returning good looks (now that would be a real miracle). Love you my friend. Again, thanks for the great support you and Susan showed my family and me today.
Dear Dan,
Good news all in all, especially the PS! And congratulations for that long bike ride.
We are in NYC for a few days and wish you and Suz were with us. Bises, Sigun.
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