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Profile picture for barbeeh51 @barbeeh51

Hello
My spouse was recently diagnosed with MDS. When I looked at his after office visit summary, it said MDS/CLLM. So now I am researching CLL I saw on the CLl society website that 3 tests are given --FISH, TP53 and IgVH. Should my husband ask to have these tests done?
The doctor is taking a wait and see approach. My husband is 80.

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Replies to "Hello My spouse was recently diagnosed with MDS. When I looked at his after office visit..."

Hi @barbeeh51 I just wanted to make sure that you say my reply from several days ago. You’d mentioned your
…”husband of 80 was just diagnosed with MDA. He would not know that he had it if it were not for the low WBC and RBC numbers and low iron”. And that the doctors at this time are in a wait and see approach. Here was my reply. I think you’ll find it helpful:
https://connect.mayoclinic.org/comment/1592202/
Much can be learned from just the current labs your husband had run. He can certainly request the more detailed informative tests and even add a bone marrow biopsy. But his doctor, at this time, may not feel they are necessary. As Colleen mentioned there are different subtypes of MDS and CLL. Because some of these blood conditions may take years to progress, often there is just an active surveillance approach. (Wait and see). Treating preemptively, hasn’t been shown to be any more effective than waiting until necessary for some conditions. And treatments may come with their own set of side effects so doctors tend to wait until the risk vs reward balances.

Does that make sense?

@barbeeh51 CLLM is an odd acronym and I have not seen it used before. Are you sure that's what his record showed? Could it have been CMML (a different leukemia)? If it is CLLM then I'm wondering if it is CLL-M which may mean CLL mutated-IGHV (usually abbreviated mCLL) which would at least indicate they did IGHV status testing. IGHV testing is the most prognostic of the 3 tests you mentioned. FiSH is interesting, especially if it shows deletion of 17p and TP53 testing is important for making treatment decisions.