Haven't been on for a while, so I have some updating to do. My signature reflects the state of the tMDS at diagnosis, 3.5 years ago. I just updated the age of my hubby to 73, but not the rest of it. I need to hunt up the results from the most recent (Jan/Feb 2014) bone marrow biopsy, but those results showed a progression of the disease, a little more chromosome damage, and something like 75% involvement rather than the 51% showing here.
The BMSCT 6+ years ago was to get rid of the NHL and, of course, contributed to the tMDS dx 3.5 years ago. We had tried Vidaza early on--no good--and had just been riding along with Neulasta every 2-3 weeks to keep the whites/ANC up. Early this year, we had a recurrence of the bladder cancer (UTUC . . . it is a nasty one, and recurs often; this time having metastasized to the bladder as well as recurring in its original location, renal pelvis) at about the same time that the blood counts started really dropping again. All three blood lines are affected, but he had been getting along with only the occasional packed red &/or platelet transfusion (as well as the Neulasta every 2-3 weeks). Hospitalization, transfusions, and the decision to start Revlimid.
He was getting weaker and weaker, and we wound up in a skilled nursing/rehab facility starting in March. Pneumonia, Noro virus, staph infection, etc., etc. He was in reverse isolation there, and needing transfusions (both packed red and platelets) twice a week. Quit the Revlimid after just one month . . . started amino caproic acid (to support the platelets) and just hung in there as best we could. After two months there, we came home to hospice.
EVERYONE (hospice personnel, skilled nursing personnel, heme/onc, other involved doctors, etc.) expected that he would not last more than a couple of weeks in hospice at best. At this point, he was still getting and needing the Neulasta and twice weekly transfusions. With hospice, you agree to quit all that . . . no labs, no Neulasta, no transfusions.
Four months later we're still here. They don't usually do labs, but I talked them into running CBCs a month or two ago, and the counts were way higher than anyone expected. I don't think his platelets had been above 15 since the beginning of the year (even right after a transfusion) and were mostly at <3 -- they were at 36. The whites and ANC had been mostly under 1 and were 3.8 and 1.6. HBG had been running in the 5-6 range (with a memorable low of 3.4) and HCT in the low teens (low 9.8) and were 9.3 and 29.0. No explanation for the counts . . . I think we all checked to be certain they hadn't run someone else's blood.
He's weak. No question about that. The tMDS is still with us. No question about that. But where do we go from here? We don't have any real options for treating the tMDS, but I'm wondering whether we should/could come out of hospice to at least check on the bladder cancer? Are we letting it get ahead of us? If he is indeed holding his own against the tMDS, should we get back to fighting the other issues? I'm almost afraid that if we take a step against the UTUC (bladder cancer) the tMDS will come back with a vengeance and put us right back where we were 4-5 months ago. The only sensible thing to do with the UTUC is to go in surgically and take a look . . . might try scans first, but I'm almost 99% certain that surgery will be the recommendation. Does it make sense to put him through that?
Any thoughts are welcome. Blasts are not an issue . . . or at least they haven't been. I'm sure the iron is higher now after all the transfusions the first four months of the year. I need to talk to all the docs, but I really want to hear from some of you who have been there.
Thanks!