Been off sprycel 8 weeks now .. it lowerd my platelets from word go so had a reduction after 2 years to 70mg.. then 50 ..then 20 .. 20 was good also lowerd my pcr .. but had to come off because platelets was at 7.. had sm transfusions ..but still down .. had a bmb today .. so im just praying its the sprycel thats suprest my bone marrow .. it just seem a long time to not have platelets to rise again😑 thank you for listening to me ...
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Low counts on sprycel ..platelets not coming up
Do you have any physical signs of low platelets such as easy bruising or petechia?
https://mavcure.com/petechiae-on-legs/
If not, even though your platelets are low, the amount may be sufficient for you to continue as it is.
Your doctor should be able to guide on this.
That does seem like a long enough time for the platelets to start rising. It looks like either you just can't take Sprycel and must move to a different TKI, or there's something else going on with your platelets - hopefully, something correctable! Don't lose heart. The CML is under control, so that's a very great thing. It does seem unfair to go along, minding your business, taking your pill, and then something out of the blue goes whack and you have to deal. I'm sorry. Hoping for the best.
It took about a year for my platelets to drop, stabilize then rise again.
I am now at 200k.
I drank a lot of Papaya Leaf Extract. I don’t if this helped, but I drank a lot of it.
My other blood counts hover in the low range but not concerning.
Many times the body will correct deficiencies on it’s own with a little
more time. If it doesn’t there maybe be some other reasons and
more investigation will be needed. Or platelet Karma is in play(?)
I would give it more time. CML is a slow motion experience.
You got plenty of time before the worry devils are needed.
Romo
Hi Romo,
How did your platelets behaved during this one year ? Did it frequently drop to very low level? And did you have to pause medicine for a few times to let the counts go up ?
Regards
Sid
They steadily went down. Started out at 350K
Went down to 100K after about 9 months.
Now back to 200K my last test.
I was worried about this and that’s when I did the Papaya drink.
My other blood counts were also low then nudged up during the same time.
My last WBC was 10K. and my PCRU is undetectable.
Go figure?
I lowered my dose myself.
My doctor would not
I am my own doctor.
Romo