My husband has posted and told me to take vitamin d3 as it has been suggested on this site multiple times.
ive been taking it. Still not on any tkis trying to get my blood count numbers back up.
My numbers keep dropping with no tki in my system. Can this be caused by the d3?
I do not believe this is possible as D3 is a vitamin that we would normally get from sunlight. Praying for you and I hope your numbers head the other direction soon. Also have you identified what TKI you will be attacking this with once your numbers head the other way?
I have failed gleevec and then started sprycel and it also made my numbers drop way to low. So now we are waiting for my numbers to climb and in limbo with meds. I have a mutation testing bone marrow biopsy coming up on May 15th. Hoping to have more answers after that appointment.
Mixing a lot of biology here.
Vitamin D3 is important for calcium transport and immune activation ( ... T-cells).
Sprycel is a TKI which can (and will) cause myelosuppresson ... low blood counts).
The fact that your blood counts dropped and you had to stop sprycel has nothing to do with vitamin D3. It is a consequence of sprycel. It's actually expected.
Stopping sprycel to allow for counts to rise and then re-starting sprycel (at lower dose) is the proper way forward. You may have to do this repeatedly. It took me 4 times. Start Sprycel, stop, start, stop, start .... and each time on lower dose. I now take 20 mg sprycel and I am "undetected". My blood counts are STILL below normal, but mildly so.
Vitamin D .... is what buys you time.
Vitamin D helps blast cells differentiate - even leukemic ones. In this way, you can stop sprycel so your counts recover and not have a blast crisis (theory).
Over time, vitamin D will strengthen your immune system so that you don't need as much sprycel to keep your CML in check.
That is what I do.
Hi Sarah, I'm sorry to hear your platelets are still too low. Hopefully they'll be up on your next test. I think you said that they have to get above 50. How long have they been below 50?
