PCR went from 32.2843 to .0542 in two months of Sprycel. The first month of 100mg caused severe myelosupression (Jan 2018) so off everything for Feb. Then 80 mg Sprycel through March. April PCR shows this reduction.
Is this a 3-log reduction? Is it MMR?
Hi Sarah,
We always count the number of logs reduction from a starting point of 100%.
A log is a factor of 10, so:
So your result of 0.0542% (assuming it's on the International Scale) is half-way between MMR and MR4. We'd usually round up, but you are easily into MMR. Congratulations.
That's a quick response. You could consider talking to your doctor about reducing to 50mg of dasatinib. It might work just as well, but not cause you the myelosuppression problems.
David.
Sarah,
You are exquisitely sensitive to sprycel! That is excellent. To drop from 32% to 0.05% in three months is fantastic.
You are taking too high a dose of sprycel. I had your issue of severe myelosuppression (dangerously low neutrophils) and my doctor reduced my sprycel dose (after a drug break to allow recovery) to 20 mg. I achieved 'undetected' PCRU status on that dose. You could too. Research is showing (sprycel) that lower dose can actually work better than higher dose because it allows the immune system to also attack CML. It's a balance between sufficient dose to effect a trend downward, but not so high that it inhibits your natural immune system fighting CML as well. 50 mg is suggested as a new starting dose (because of myelosuppression issues as well as pleural effusions). You should certainly drop your dose to 40 at most 50 mg. And if your PCR drops again, seriously consider 20 mg. You can always increase dose.
As David pointed out you have had a remarkable log reduction. You are already MMR - and likely on your way to achieving undetected status.
CML is behind you and no longer a threat. Celebrate.
David and Scuba
Thanks for this info and the support. In fact my doc reduced me to 50 mg before we even got the last PCR result (.0542 IS). I had asked him to take me down to 20 but he declined. I think he may change his mind now. I hope.
He will be shocked to see (my appt is next week) the new PCR because seven (7) years on Gleevec, I never got under 11% IS. This was my fault, I would forget doses, never wanted to try another TKI, bla bla bla.
I only took Sprycel 2 months actually: 100mg in Jan and 80mg starting in Mar with a complete break (0) for Feb. Started 50 in April.
We had found a Phe311Leu mutation in December 2018, which lit a 🔥 under my you know what. Feeling desperate I researched every possibility.
Since February I have added substances known to obliterate leukemia stem cells in mice. Wish me luck. I’m going for another log or two by mid Summer. If this last info is not permitted, please advise and feel free to delete. I understand the implications. I just SO feel the need to talk with someone for a reality check. Am I dreaming?
Sarah63
Fab! My doctor has been willing, but not as aggressive as I have wanted to reduce my dose. I’m down to 20 now and to be honest my pushing, and her resisting sort of met in the middle at the right place. If you do well at 50 I am sure your doctor will be similar and got to 20 at the right time.
I’ll go back to clinic in about 10 days and review 2 PCR results on 20mg and hope that they show decent results. Had the first been terrible, I’d have got a phone call already I reckon so I am quietly, hopefully confident.
Scuba,
They include 1) Misoprostol; 2) EPA (only) fish oil; 3) Sodium Selenite. All have cured CML in mice by killing stem cells. The theory is that CML people have dysfunction in the bone marrow and fail to produce ProstaglandinE1 needed to trigger aptosis. Drugs like misoprostol provide PGE1 directly while sodium selenite, and possibly the fish oil, trigger endogenous production.
I am "pulsing" on and off taking the selenium and EPA together, then switch to misoprostol. I'm back to EPA/selenium phase currently.
I am trying to send you links to the studies and the patents that resulted, but I am not able to post links here.
How can I do that? Or... you can just google "misoprostol and CML" for example. Let me know what you think.
oh wait... i think i got a link to work:
https://agsci.psu.edu/magazine/articles/2012/summer-fall/a-cure-for-leuk...
