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.
What is happening?
Are there possibilities other than stem cell transplant in Canada for CLL with 11Q deletion?
recent immunotherapy trial results 
