My first appointment went I feel well. My oncologist said my blood counts are good my WBC was a little low.. He said if still low in a month he may want to lower my dosage! He said he won’t don’t a PCR/abl test for 3 months. I have no idea what this all means but he said looks good....
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First Oncologist appointment today
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Hi Lisa,
That sounds all good. PCR tests at the beginning of treatment are not extremely helpful or meaningful, until your results go around 1%. Until then, the doctors will monitor your other blood counts, or they will do a fish test, depending on the doctor's strategy. My doctor skipped the fish test, and she ordered a PCR after three months.
Regarding the low WBC, it is very common at the beginning of treatment (and it means that the tki has started doing its job). It is ok, as long as it does not get too low. Your doctor will be checking your counts in order to make sure that it's ok. Some people appear to have low WBC, until their body adjusts and the counts come back to normal. Other people might need lower dosage. It depends on the individual.
Indeed, it all looks good.
Regards,
Koralia
Excellent stuff it takes a while for bloods to stabilise when I first started treatment on TKI my wbc was about 4 and after stabilising it was 8. Give these things time it will all be fine. Yes your 1st BCR-ABL PCR test will be 3 months and they’d hope that you measure <10% (less than). BCR-ABL is the thing that is blocked by TKI the thing that gives us our disease. Once that’s less than 1% you’ve really beaten CML this is called a complete cytogenic response (CCYR) meaning your bone marrow is functioning correctly again. Then the final milestone they like you to hit is <0.1% which is MMR and this is a Major Molecular Response of you can attain that and reach a deeper response one day you might be able to give up meds.
An important wider note is not everyone including me hits all the milestones when they’d like you to. For instance MMR is ideally attained in 12 months and it took me 30.
Hope that clarifies things for you.
Alex
Thank you Alex,
I think my WBC was 3.6. My Oncologist said he would watch it. Other than that I feel ok. I hope I get <10 that would be awesome. He seemed pleased with how the drug was working, and said not to worry when asked about WBC.... Thank you for your support! I may become a pest for awhile.
Lisa
That’s about normal then slightly below I think the norm is 4-11 or there abouts I am sure it’ll level off just fine. You’re responding blood wise and that’s almost a given for TKI. I am sure you’ll make the <10%. At baseline most have a PCR of 100% do you know what yours was? Sometimes this baseline PCR can be anywhere from 10 - 300+% normally around 100. The most important thing is the trend so let’s say your baseline was 100 and you fell to 15-20% by month 3 and not 10% this is still a good significant drop you’ll learn on here it’s the trend that matters so don’t get too hung up on the number but the aim is <10% or their abouts.
Its never a pain to help people. Pester me as much as you want.
No Alex I don’t know my baseline. All Dr told me was my bone marrow looked good just lukemic cells.