I had my first Bone marrow biopsy for diagnosis for CML back in July and my score was 15%. I started Bosulif in August, and now most of blood work is back to normal( hemogrit, hemoglobin, and Platelet to slightly below range, but was very low before). I just had my second biopsy and my bcr-abl increased to 25.2250%. I'm waiting on my cytogenic tests, which my hematologist believes is more important. I would think that if I was resistant, my blood work would be all over the place, but that is a big jump. Has anyone experienced anything like this before?
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10% increase in BCR-ABL iS%
Hey there I am not 100% sure but I think you have certain numbers confused. The cytogenetic tests are via the bone marrow biopsy (normally you only have x1 at diagnosis where they insert a needle normally in the hip bone) which you say you are waiting on and the bcr-abl IS percentage is normally given via a PCR blood test. If you have 15 or 20% BCR via blood test after 3 months (the goal is 10% by 3 months).
Can you confirm what your PCR result is in IS percentage to be able to help you, maybe I am being dumb but this looks off to me. And that’s potentially a good thing. Normally a biopsy looks for PH+ cells via a FISH test as a percentage off the top of my head which doesn’t relate to PCR at all, but I do believe BCR can be calculated from the biopsy but I only see results on BCR via PCR. And you should also have a blast percentage mine was 1% at diagnosis. This determines what phase of disease CML is chronic, accelerated or blast. The latter 2 we all avoid like the plague.
Do you mean your presenting BCR-ABL PCR blood test was 15%? What country are you treated in as the norm is a PCR blood test which measure the BCR-ABL transcript (copies) of oncogene.
So your presenting (1st PCR test near diagnosis was 15%) and you have risen to 25% over the course of 3 months. That’s clearer.
So the goal of treatment via PCR at 3 months is a complete haematological response which you’ve had (normal blood panels) and <10%. Since your BCR has risen it suggest that the current treatment you’re on doesn’t seem to be working. Could be for a number of reasons, absorption of TKI, a mutation (sounds scary but some drugs treat certain types better) theres a guide around somewhere that shows what TKI works with known mutations, and or resistance not related to mutation.
What is interesting is that your presenting PCR was low like mine at 15% mine was 13%. A lot of folks are diagnosed around 100% but I am told this has no clinical significance. Was just I’ve only seen 3 people with very low presentation of BCR transcripts on here to date.
Yeah they typically give the blast count at diagnosis but can be measured in the blood test. Your doc is right you’ll need cytogenetic testing on the marrow again to see what is/isn’t going on.
What was your wbc and platelets at diagnosis and your spleen size? And did your doc give you a reason why they started you on Bosulif which is quite rare? On the forum I typically see imatinib, nilotinib or dastinib as the front line TKI. That doesn't mean anything specifically but I wondered what the reason was. Sorry for all the questions is just much easier to help when we have the info.
My WBC was around 400 and my spleen was enlarged, don't know the exact size but it extended toward my hip into my abdomen, but the size had reduced a lot and it might be close to normal size. My doc didn't give an exact reason for the Bosulif, but stated that since I'm young(32), she didn't want me on Tasigna since that may give me issues with my heart later in life.
This can explain much (FISH = 100%).
In the mean time, be sure to know your vitamin D level and supplement so it is around 70 ng/ml. Vitamin D strongly signals blast cell differentiation including leukemic blast cells. It is blast crisis which kills in CML.
As long as your blast cells are low or zero, you have time to get this under control. Keep us posted.
22 is very low. When I tested that low, I took 10,000 IU's every day for 3 weeks. That barely put me above 50 ng/ml. I now alternate 5,000 one day, 10,000 the next (in winter) and hover around 60-70 ng/ml. It will still drop as winter progresses.
Multivitamins may not contain vitamin D3 (active form). Vitamin D needs to be taken with food that has fat to insure absorption. Take vitamin K2 (not k1) with D as they work together.
My Vit D was very low but don't know exactly how low. My GP prescribed 1000Iu Vit D3 daily which I have been taking for more than one year. I also managed to sit in the sun this summer for the first time in 11 yrs with CML without burning. My Vit D level is still only 49. I also take Folic Acid as that, too was very low.
Chrissie from Devon