Info on SCT

[flowerlady]

Hi Everyone,

THis past week after 16 months with fantastic results on Revlimid we found out that it was no longer the medication best for me. My counts dropped and blasts doubled. Now it is time for either Dacogen or Vidaza until we can hopefully reach some form of a remission and then a Stem Cell transplant this summer. My brother is a complete match but the answer is ...where to go for the procedure. I would appreciate the view of you wise folks and have already begun investigating Dan Faber and Seattle Cancer Alliance/Fred Hutchinson. I have an appointment sat Moffitt this week as it is closest to my families. Concerns being what I can do to make my brother and his family most comfortable about what he will be going through and his recuperation and if there are any long term side effects of being a donor. I have an incredible family for which I am very thankful but what I can do to give my husband,children and parents some comfort and ease their minds as well. I suspect, I will be pretty well taken care of during this time but, I am very concerned for my loved ones. Also any pointers on insurance, and mostly just some advice from anyone who has experienced this....Thank you all for your support...

[Neil Cuadra]

flowerlady,

Be sure to see Ruth's post about choosing among transplant centers.

As a caregiver, I'd like to mention that in choosing a transplant center there's a definite advantage to staying fairly close to home and close to family members who will help care for you after a transplant. Being near home can reduce stress and help recovery, and your family will be your primary support team. It also makes it easier to get to followup appointments with less travel. It's just something to keep in mind and something to weigh against the confidence you have in a particular treatment center or a particular medical team.

When we considered transplant centers, our most important factors were the transplant facility, its staff, and their experience. We found that we had two excellent choices, and being near home became a tie-breaker.

Where a donor (your brother in your case) lives is less important. The stem cell donation doesn't even have to be at the same facility as the transplant, although it typically is for related donors. In any case, it's a one-time trip and a one-time event for the donor. See Steps of Bone Marrow & PBSC Donation (http://www.marrow.org/DONOR/When_You_re_Asked_to_Donate_fo/Steps_of_Donation/index.html) (Steps 4, 5, and 6) for a brief description of the procedure from the donor's point of view. Recovery is usually quick and followup care minimal.

Unfortunately, insurance can sometimes be a factor in choosing a transplant center. You need to ask about your coverage, especially when considering out-of-state centers. But if any part of your coverage is denied, don't take that as a final answer. By following the insurance company's review and appeal procedures, and enlisting doctors to supply medical information about the seriousness of your illness, you can often get coverage on appeal that was denied at first. Maybe that won't be an issue for you, but the sooner you inquire the better.

You and your brother should check what coverage there is for him as donor and for the donation procedure.