Monday, June 15, 2009

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

3 comments:

Ingrid said...

Hi Dan,
well, I would say: it sounds pretty good. I wish you slowly, slowly, but surely to move on.
Little bike rides, little walks, little by little, recognizing, the smaller the things to do become, the more we appreciate them.

I too do have faith, that you make this battle, and the next one, until you'll win this long war.

Love you,
Ingrid

g said...

Dan,
My friend, I have all the confidence in you and your care givers. BTW, I was also doing experimental treatments with similar side effects. IT SUCKS!!! Be stubborn, be strong, and kick ass.

Hang in there buddy,
gary a

johiker2 said...

You continue to amaze us with your courage, strength and trust. We believe in you and love you all.
Pam and John Stafford