it's been a while since I've posted any news regarding my husband as everything has been going well until recently. He just got his results back from the Igvh test he has mutated. I am so confused as to what this actually means for him. His wbc's have been steady in climbing upward lymphocytes have stayed at around 86% all other labs have been stable. His CT scan shows lymph node involvement in his neck axillary stomach and groin. He was dx 12/2016 he has been w&w until this last lab result , his DRis now ready to treat. We are completely overwhelmed now. Should we be worried?
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school45
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It's actually good news that your husband has a positive IGHV (hyper)mutation test result. It means that his CLL occurred later in the B-cell lifecycle and he has an increased likelihood of a longer time to treatment and a longer remission. He is also more likely to do well on chemoimmunotherapy treatment like FCR or BR than someone who is unhypermutated. (It's unfortunate that doctors use mutated instead of hypermutated, because confusingly DNA mutation is what causes cancer if the cell survives. B-cells need to go through a hypermutation, or controlled mutation phase to change their B-cell receptor (controlled by the deliberately modified/mutated IGHV coding in the B-cell DNA), so it will fight different bugs, by making antibodies unique to each bug. If our B-cells couldn't go through hypermutation, they'd all be identical and we couldn’t form long lasting immunity to measles, mumps, chicken pox and so on. Vaccinations wouldn't work either.
It sounds like your husband's enlarged nodes are driving his need for treatment. Has he had a FISH test so his doctors can best determine which treatment will suit him best?
So I had to have another conversation with my husbands doctor, it’s very difficult to understand her (due to a heavy accent) especially over the phone. His results were actually classified as UNmutated. She informed me that it’s not all that good. She wants to draw blood and have CT in January then start treatment at that point. Can you please explain this to me. Why if she thinks he should start treatments now she doesn’t just start them right now.?? This is all so confusing and scary.
Also Neil, He did have a test in the very beginning of diagnosis that included about 12 different tests, she called it markers, they were all good at that time. Would that be considered a fish test??
I would expect that your husband probably had more than FISH testing done with that number of tests. You are welcome to share them for feedback in a post viewable only by our community (locked).
Unmutated fits in better with your husband's expected short time to treatment, unfortunately. It means he will probably do better on a non chemo treatment.
CLL is a chronic illness in which (so far), treatment hasn't been found to extend life expectancy to normal. That seems to be changing with the newer non chemo treatments and for mutated CLL - FCR, but we have to patiently wait out the normal life expectancy period to confirm that.
There's a risk with all CLL treatments. All of them put us at greater risk of potentially fatal infections, so it is best to delay treatment until necessary. With CLL, we generally have plenty of time to investigate what treatments are available via clinical trials (giving access to newer, better treatments that may be found to be curative) and perhaps seek second opinions on treatment options.
Lucky you (and your husband...). My guess is that if you were to take a poll of HU-CLL members, then 100% of those who are unmutated would, if they were able, opt to be magically mutated.
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