I originally went on CAL-101 in late January, 2011. I did fine for quite some time, until April 2011. My liver enzyme numbers went up, and I was taken off the drug. I had major problems when I went off the drug. Something was going on, perhaps a sudden expansion of the lymph nodes that began pressing against internal organs, or perhaps my small or large colon. I was in a lot of pain. Luckily that went away, but I felt poorly for the next six weeks. My liver numbers were stubbornly high.
Then I went into the hospital with zero neutrophils. I was there for five days.
I was able to go back on CAL-101, but at a reduced dose. I've been on the reduced dose for about three weeks.
Unfortunately, my liver is acting up again, and my white count has fallen again, as have my neutrophils. It may be that I'll have to go off CAL-101 because of side effects of the drug, and because my blood numbers are going in the wrong direction.
The saga never ends, apparently.
Scotland
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I know, I know, we’ve practically been all over Scotland by now. So why are
we going there AGAIN? Simple: we just LOVE Scotland!!! Can’t wait to leave.
It ...
3 months ago
1 comment:
Hang in there... hopefully things got better.
I have CLL and been on the Cal101 trial at Stanford since April of 2011. I had severe adenopathy (very large lymph nodes in my abdomen, the size of a basketball), white blood level around 100,000 and over 80% of my bone marrow filled with leukocytes. I have had very good success with this trial, and my adenopathy is almost gone, my blood levels are around 6,000 and bone marrow is reversing. After being admitted to the hospital three times in 2011, I have higher, almost normal levels of platelets, hemoglobin, neutrophyls and leukocytes. I have had some GI issues for a year due to chemo, but other than that, I have been in good health since Dec '11. If you have CLL and can get on the trial, I would recommend it.
- Matt
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