Sunday, July 10, 2011

Liver numbers have gone down on CAL-101

The good news is that my liver numbers, while still abnormal, are down considerably after I've reduced the dose of my CAL-101 from 3oo mg per day to 200.

The bad news is that my blood numbers are starting to deteriorate. My platelets have fallen drastically from 140,000 to 77,000. Dr. Kipps is worried and wants a new bone marrow biopsy. I told him I had one in the hospital last month. I told him I'd send him a copy (or rather, I'd ask UC Davis to send him the results). When I called Davis and asked them to fax a copy to Dr. Kipps, they offered to mail a copy to me. I said OK.

I read through the report and it's troubling. I have converted from about 11% 11q del to about 70%. Curiously, the rest of the CLL cells are positive for 13q14, which I've never seen in my reports before.

The worst part is that my cells are showing signs of 'clonal evolution' towards MDS.

The biggest mistake in my life (doing FCR based on glowing recommendation of Dr. Weirda) is perhaps coming back to haunt me. MDS is a killer, and should prevent most people from taking FCR, unless there are no other options. There were options for me, and I wish I had taken them.

In the era of CAL-101 and other kinase inhibitors, CLL may be a much more manageable disease. The CLL patient may be treated more like the chronic disease patient he is, rather than hitting him with the big guns.

Taking FCR may force mutations in the CLL cells that lead to terrible consequences. I know that Dr. Hamblin snarkily said that I 'just got the gummy side of the lollipop stick', but that flippant remark belies the terrible outcome for many FCR patients, who will die much earlier than they would if they eschewed that dangerous drug combination.


Mae said...

I'm intrigued by your comment that FCR was the biggest mistake of your life. For someone like me, who is on the cusp of treatment with FCR, what would you have done differently? Any insight is helpful. Mae in Maine

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steve w said...

hi barry ,
hope your ok really helped me reading ur blog, recently dia with cll age 43 from england .it has really helped thank you . please let me know if you are still ok .steve

Barry B. said...

As far as FCR goes, this is heavy-duty chemotherapy that often causes further mutations in the CLL cells that make it less responsive to other treatments. And it increases the risk of Richter's Transformation (average lifespan, 2-6 months) and myelodysplastic syndrome, which will kill, frequently in less than two years.

As more and more treatments become available (at least in trials), I wish I had reserved FCR to prepare for a stem cell transplant.

Please, seriously explore other options. The CLL expert doctors have all moved away from FCR, except the docs at MD Anderson, which is shameful, in my opinion. (They invented it, they was to use it on everyone.)