Could someone help me understand my wife’s situation. We had a bone marrow biopsy 2 weeks ago and they gave us the results today. For starters we where 3 months late on the biopsy due to scheduling issues so this is the first biopsy in 6 months. The bone marrow results were 23% in the beginning and now are at 67%. So my question is. How concerned should we be? Is this a common thing? I know the tki’s have been working on the blood work as far as keeping her numbers where they should be.
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Help understanding?
Hi there. More information is needed but if you are referring to BCR/ABL at 67% from 23% then it is very possible that a new TKI should be tried very soon. Not everybody responds the same to all TKI's. I would schedule mutation testing so that you can determine what TKI would be beneficial for your wife. Some are effective against mutations that others do nothing for. It is strange that your blood counts (I assume you meant WBC) were in check...Like I said more info needed but I would not accept "scheduling conflicts" this go around while you find the reason if you have any other options as far as docs/hospitals go. My thoughts are mutation testing and identify a good TKI for your wife. Please keep us posted and praying for you to find a good response soon.
What were the results precisely? What were they measuring. 23% or 67% of what? (I presume this is a FISH test?)
Also - what blood work are you referring? complete blood counts? (i.e. rbc,wbc, neutrophils, etc.)
Keep in mind normal blood counts can be maintained by the body for a long period while CML grows and grows. It's only when the body can no longer handle the extra cells that blood counts start to get out of whack. This is why TKI treatment can very quickly bring blood counts back to normal and symtoms of the disease fade - even thought CML "counts" as a percentage of the blood are still relatively high. Most people, when diagnosed have levels of 100% CML. Once blood counts return to normal, their CML "count" can still be quite high (80+ percent), although hopefully trending downward.
Without additional information, it's hard to even guess at what your results mean.
Genetic testing - also referred to as mutation testing.
They want to understand why your wife stopped responding. Mutation testing can help identify which CML clone is active and what the best medication to try next.
https://www.targetedonc.com/case-based-peer-perspectives/chronic-myeloid...
Hi Jason,
They need to find out if she has a mutated form of BCR-ABL1. If she does have a mutation, then the correct TKI should be chosen that will work best for that particular mutation.
The chart in the article below may help you guys understand the genetic testing that is needed to determine which TKI will work best.
It's Figure 3 on page 5. The chart is titled - Activities of imatinib, bosutinib, dasatinib, nilotinib, and ponatinib against mutated forms of BCR-ABL1.
The article is titled - Individualizing kinase-targeted cancer therapy: the paradigm of chronic myeloid leukemia, by Anna M Eiring and Michael W Deininger. Here's a link: https://sci-hub.tw/10.1186/s13059-014-0461-8
Hope this helps,
Kirk
Hi Kirk ,Imatinib has stopped working for me ,I was told I am going on Dasatinib even before I had my bone marrow test done ,I still haven't had my results but starting it this week ,so what you are saying this could be the wrong one for me depending on what those results are .This doesn't give me much faith in my doctors .
Hi Felix,
I switched from imatinib to dasatinib too, and also without a cytogenetic test to check for mutations. The line of reasoning my doctor and I took was that dasatinib covers the vast majority of mutations of CML, so it will probably do the trick. We'd know if it did the trick pretty damn quick and would order a PCR test to check. Nothing terrible was about to happen, so why do another bone marrow biopsy in the meantime?
For the record, dastinib worked. Very well, too.
David.
Hello Denise,
Dasatinib usually works if imatinib hasn't. Are they going to do a mutation analysis for you?
There are a lot of variables when it comes to response to a particular TKI.
Usually mutation testing isn't done unless there's a lack of response to therapy. I wonder how difficult and costly the mutation testing is?
Good luck with the Sprycel!
Kirk
Jason, I'm listing your previous posts so that those unfamiliar with your journey can look back at what has transpired so far.
https://www.cmlsupport.org.uk/thread/12527/my-wife-was-recently-diagnose...
https://www.cmlsupport.org.uk/thread/12563/bone-marrow-transplant