Does anyone here have experience with 5q deletion?
A little background:
My age 77 husband was Dx'd with 5q deletion (a chromosome that's damaged – part of it is missing) one year ago after two bone marrow biopsies and DNA sequencing. His September 2018 biopsy revealed 5q deletion in 67% of nuclei; associated with either de novo or therapy-related MDS or AML (with AML ruled out); myeloblasts under 5%; erythropoiesis megaloblastoid and slightly dysplastic; no myelofibrosis; lymphocytes and plasma cells normal. His bone marrow makes too few red blood cells, they're too large, and they die off too soon; resulting in low hemoglobin counts and excessive fatigue.
Since June 2018 he has had 60 weekly CBC draws, and 60 Procrit injections at 40,000 units. Hemoglobin at Dx in September of 2018 was 8.5 and has risen briefly as high as 10.4; usually hovering in the low 9s. His oncologist normal range is 11.5 to 17.1 and his Mayo hematologist normal range is 13.2 to 16.5. Today he is at 8.1, having fallen from 9.4 in mid-August. His oncologist feels he is nearing the end of ability for Procrit to stimulate red blood cell production. But both the local oncologist and Jax Mayo are unable to predict what "usually" would be the next step, maybe Revlimid.
So… here's what we are interested in:
We see the Vidaza, Procrit, and transfusion discussions. and we're interested in the progression of therapies. We haven't seen posts here discussing Revlimid or Luspatercept. Anyone have experience with Revlimid? We understand that Dr. Rani Komrojki at Tampa's Moffitt has done studies with Luspatercept it's waiting for FDA approvals, and that Luspatercept may be useful for red-cell cancers in addition to the conditions in the studies.
Does anyone have experience with discussions with doctors about Luspatercept possibilities for stimulating red blood cell production or longevity?
Does anyone have a fix on the possible progression from one drug to another as red-cell diseases progress and as therapies fail? Wondering if Vidaza would be the logical next step, or Revlimid, or something else to postpone the need for transfusions.
Reading here, it seems the once per week Procrit injections are a very heavy dose – when some people are able to stay at a decent heme level getting injections every four or five months. We're anticipating a Procrit fail in the next couple months; doctors will of course recommend what to do next, but also wondering how others have dealt with the transition and possibilities for success.
We would never have known the specific Dx had Mayo not done DNA sequencing. We had no idea this should have / could have been done on the first bone marrow aspiration biopsy.