Monday, September 6, 2010

Holding my own, but problems may be ahead

I saw Dr. Kipps in mid-August. He was harried as usual; I had to wait an hour and a half. I don't know why he gets so backed up; I suppose it's partly because they fit people in as the need arises.

He started out by telling me my May bone marrow biopsy was good. I had a nodular partial remission, which is better than a partial remission. I still have CLL cells in me, but they are not so widespread. So the flavopiridol worked quite well. He was happy with my performance and over-all activity level.

However, he became concerned when he saw my blood numbers. They still haven't recovered from the FCR two years ago. He seemed disturbed by the numbers. He wants me to come back in September for yet ANOTHER bone marrow biopsy. My pelvis is more holes than bone, now, I think. This will make number 16 I believe. I'm a pin cushion.

He also mentioned that he wants to start a search for a stem cell donor.

As you can imagine, this was extremely disturbing news. I was certainly prepared to re-do flavopiridol if the drug company would allow retreatment (another 13-14 months of decent quality of life sounds EXCELLENT to me!!!). I suspect he thinks that things have gotten past that now.

It's all due to the FCR in my mind. My counts are still way low, and have never come back up.

The transplant, of course, it a sure death sentence. Few people my age make it more than a couple of years. No one I know, even through the internet, has survived more than five years. It's a terrible procedure that over-all, doesn't work. Up to 40% of patients don't even get out of the hospital. It takes a full-time commitment by a caregiver, and my 'caregiver' has a chronic disease herself.

Since I live in Northern California, I'm going to get a second opinion at Stanford. They have a decent CLL practice there, and they also do transplants.

A transplant is a last-ditch effort to keep you alive for a few more years. It just depends on how much agony (graft-v-host disease) you want to endure, and how your cancer responds to the graft. It also depends upon getting your disease down to a low point, at least a complete remission.

Getting to that point would present a problem; I've never had a complete remission in this disease.

Bad news all-around. This may be my last Christmas (if I make it that far).

OTOH, no one is guaranteed anything on this planet. It's just bad timing. Treatments for CLL are really getting a lot better, and promise to get better all the time. Just not soon enough for those of us with intractable cancer.

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