My platelet count has increased 11 fold since starting the rituxumab (R) and cyclosporin (CSP). I must saying it is working better than I or any of my doctors predicted for my unorthodox therapy. Now if only my pension plan would do the same.
337,000 is more than double what it was last week, and last week it was already normal. This is the highest level since they crashed when my ITP came back last July.
This unusual but not too toxic med mix is unknown territory, so the length of my first course of R or the dosing and timing of R maintenance is stuff that needs to made up as we move forward.
Moreover CSP has a mixed rap sheet. It helped my CLL and there are a few case reports of its anti-leukemic effects, but it is immune suppressive and could and has taken the brakes off cancer growth for others.
Maybe the true hero of my present story is the sesame oil one tablespoon twice a day that the herbalist recommended for low platelets even though the medical literature, while not silent on this, is also not screaming out the proof of its efficacy.
Maybe it's the Beatles watch that I have taken to wearing to bed with me. Everyone knows how good the Beatles are for platelets.
Yes, I am expecting a long and easy course, and a healthy happy pause before I must change course again.
If the family can work it out, maybe I will finally go hang gliding this weekend.
3 Comments:
Brian
Go hangliding. I did at Torrey Pines a few years ago and
although I got a bit of airsickness, it was glorious
and a wonderful way to celebrate. Careful of the
nude guys on Black's Beach below
I have always been keen on Cyclosporin for immune cytopenias. Takes a while to work, often, but it was old reliable in many of my patients.
Thank you for being a CLL explorer. As you know, experimentation is the only way we learn about disease (and pretty much everything else).
I've been through four clinical trials (so far). Thanks to God and modern medicine, I am alive well past original estimates. I have most of the negative prognostic factors and would have died years ago without the sacrifices made by others.
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