[Darice]

Hi, Carrie . . . thanks for responding. Sounds like we have a lot in common. My hubby is 73, and that is probably the biggest thing ruling out trying an allo SCT. He also has a bunch of other issues . . . the bladder cancer I talked about, a possible/probable thyroid cancer, A-Fib, diabetes . . . he's amazingly strong and tough, but just has a LOT going on.

One of the problems with being on Hospice is that they basically take over your entire health care. We don't see any of our previous doctors . . . that's just part of the agreement with hospice. We stop treatment for the admitting dx and go with their medical team for everything. We could drop out of hospice (temporarily or permanently) and see our other doctors, but otherwise, medicare won't cover anything. We are with hospice because of the tMDS . . . he was so near to death with that just a couple of months ago that no one thought he would survive . . . but you are, in effect, going into hospice with everything else, too. And hospice just doesn't do scans or labs or chemos or surgeries or other treatments . . . for the admitting dx or any other condition. So I can call the "old" docs and hope they will return my call even though my hubby is technically no longer their patient. Could only do an office visit or any tests or treatments if we leave hospice care.

He is in a hospital bed (at home, provided by hospice) with a bedside commode he can get up to use. He will occasionally walk to an easy chair (maybe 10-12 feet from the bed) and smoke a pipe or just sit for a while, but otherwise is pretty much in bed 24/7. Hasn't left the house since starting hospice 4 months ago. Doctor's visits, treatments, transfusions prior to hospice (from the nursing facility) were managed by medical transport/ambulance. Nothing since except for the hospice nurse and CNAs (and occasional nurse practitioner) who come to the house. However, I think he could possibly get strong enough so that we could go somewhere by our own means . . . just takes a little more work and effort. He is still very weak, but he is stronger than he was four months ago. It would take some doing to get back to "normal" rather than "hospice" medical stuff. And maybe/maybe not worth that effort.

The UTUC (upper urinary tract urothelial carcinoma) bladder cancer) does recur frequently. He had been getting checked every three months since diagnosis almost 4 years ago (just prior to the tMDS dx), and it's just been ongoing surgeries and chemo . . . at least one recurrence each year, probably more. We have always tried to treat it pretty aggressively because the tMDS limits the type of treatment we can use . . . for example, in a "normal" patient they would have removed his kidney (where the cancer first appeared) immediately but that wasn't as good an option for him because of the tMDS. So we go in surgically and cut out any tumors and then treat frequently with the inter-vesical chemo (instilled into the bladder/kidney rather than systemically through the blood) to try to prevent recurrences. The fact that it metastasized to the bladder this last go-round indicates a progression . . . and we did not follow up with chemo and re-checks BECAUSE the tMDS had gone into overdrive and the expectation was that that (tMDS) would kill him before the UTUC could become a problem. But without the chemo, I'm worried that it's progressing and may start causing more problems. However, treatment would be difficult. There just aren't good/easy answers here that I can see.

How wonderful that your husband has such a great match for his SCT in his brother! Sounds like you're moving rapidly in that direction. You know the basic routine, having gone through the auto SCT in 2008, but I'm certain things have changed since then. We'll keep in touch for sure!

Thanks for your thoughts

Darice