Hey I haven't been on in a long time. We've been pretty fortunate on the CLL front (knock wood). My husband is coming up on nine years since enduring six months of FCR treatment with little to no disease progression since.
We figured that was a good thing although he has never been officially declared "in remission." He has had chronically low blood counts across the board. We have continued to see the hemo/onco doctor, sometimes every six months, sometimes three or four months, depending on the counts (as I said, all low and sometimes platelet or neutrophil numbers very concerning). He has not had other symptoms, no night sweats, no frequent infections, no enlarged lymph nodes, and no treatment since discontinuing IVIG in 2018.
Recently his hemo/onco doc has said he thinks my husband has ANOTHER blood cancer which went undiagnosed when the CLL was diagnosed and treated. he says this is "lgl" but doesn't give much information about it. With very low neutro numbers before a surgery this month, he said if the counts don't improve in six weeks he's going to order a bone marrow biopsy and a full body CT. I am shocked. I guess I always assumed the low counts were from the battering his bone marrow received from FCR, and since his quality of life is good and we are careful about infections, I have been hoping we could avoid interventions.
So I'm going to do a deep dive about this large granular lymphocyte leukemia, but would like to hear from folks about their experience with post FCR-cytopenia or any resources that othrs can recommend.
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dwolden
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So sorry this is a possible new diagnosis for your husband. The following site seems to be the latest (2020) in how LGL is diagnosed and treated. Please know that, the prognosis of any disease is not a personal prognosis, as we are all different.
The avoidance of infections is a primary care need as it is in CLL. You and your husband have done well in that area over the years of tending to CLL as a diagnosis. I wish for your husband a further treatment for LGL if/when needed and may the due diligence you have both been giving to his care continue and your well being as well as his be a benefactor to that most careful care you have taken for so long.
Large granular lymphocyte leukaemia only gets these few mentions in our community, so it's extremely rare with or after a CLL diagnosis. See: healthunlocked.com/cllsuppo...
It should be diagnosable via a flow cytometry blood test, but a bone marrow biopsy is an appropriate way of verifying an LGL diagnosis or, possibly more likely, finding out what else is happening by your husband's specialist, who, to his credit, is being thorough.
Here are two reputable sources of information on LGL:
It's good to hear from you and your husband, though obviously we wish the circumstances for your post update were better.
cllady01 has provided you with an excellent, recent document describing the diagnosis and management of LGL, should that be confirmed. Please let us know what testing turns up.
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Would appreciate your input!
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