Learning About Stem Cell Transplants

Ray & I spent most of today at the Moffitt Cancer Center consulting with several doctors, mostly about what we may be facing when we begin the transplant procedure. We still do not know yet if we need to pursue it sooner than later but the transplant specialists feel it’s wise to begin the search for a donor match NOW, even if we don’t do the transplant for another 2 or 3 years. Basically, if the last bone marrow results show that he has that nasty 17p chromosome, then they want to do the transplant as soon as possible because its presence will cause the MDS to progress much faster. If it’s no longer present, they may just continue to treat Ray with medication to try & hold his condition in check for as long as possible.  And of course, we must find a donor match.

One of the biggest decisions we must make is where to have the transplant. There are pros & cons either way we go. We realize that family support may be extremely important & we can best receive that back home in Indiana. However, we really feel that the Moffitt Center & their doctors are by far the better choice with their extensive knowledge in the transplant department. We learned that they average over 400 transplants per year. Another important factor is that we are only 15 minutes from their facility. In Indiana we are an hour away from the hospital that we’d need to use & from the sounds of it, there is going to be considerable travel involved, not to mention a lot of time spent in the hospital. He was told he should not mow grass anymore, nor work out in the yard because of his inability to fend off bacteria spores outside that could make him sick. If we remain here in Florida, that temptation wouldn’t be facing him. And I could probably keep him more in the isolation from people & things that they tell us will be needed. In Indiana the temptation to socialize, etc. would be very hard for him. If you know Ray at all, you know he’s the social butterfly in this family!

Either way we go, we know that we will no longer be able to be the caregivers for Dad (Ray Sr.) or Randy. At this point we cannot worry or concern ourselves with that because Ray must take top billing. Ray’s other siblings will be forced to take over that responsibility & I’m sure they will.

The doctor’s today did not sugar coat anything & what we learned about the transplant process did not paint a pretty picture. In fact, truthfully I found it very frightening. But it is what it is & we’ll face it head on & deal with it. Ray remains positive & is ready to getter-done! Me? Not so much. If they would tell us that we need to do it next month, I tend to want to put it off until the 1^st of April, thus allowing us at least a couple of months of enjoying some quality time together here in sunny Florida before we begin the process. Then Dad & Randy could remain here with us too, and just return home to Indiana in April as usual.  But who knows, we may or may not find a suitable match quickly anyhow. We just don’t know.

And so, here are some of the things we learned today;

Ø  A sibling donor is the absolute best option because by sharing the same parents, the chance of your body rejecting their stem cells is decreased. Each sibling has a 25% chance of being a match.

Ø  If there is no sibling match, the donor registry is an option, there is a 75% chance of a match but the chances of your body rejecting their cells is somewhat higher than if a sibling.

Ø  As I questioned the statistics I was told that the MDS re-occurs in 25% of transplant patients within the 1^st year. And that 55% get the MDS back between 1 & 5 years, but that means that 45% will remain cured!  Also that there is a 10% chance of death from surgery complications. 

Ø  The transplant process will require that Ray be hospitalized for a week of chemo just prior to the transplant followed by 3 weeks at a minimum afterwards, at which time he’d be in isolation. For 3 months following that, he would be required to visit the hospital twice a week.

Ø  He would be monitored very closely thereafter & would probably be on anti-rejection drugs for at least 2 years & would continue to have periodic bone marrow biopsies for the rest of his life.

Ø  Instead of a transplant, they can attempt to delay the need for a transplant by treating his MDS with medications for awhile, but even those only work for so long. If we’re lucky they’d work for 3 years, probably followed by another 3 years of chemo to try & control the leukemia that he would probably progress to. Another reason to possibly delay the transplant is to avoid the risk of death from the surgery itself! Yes, these are the words the doctor spoke. Like I said, they don’t sugar-coat it.

Ø  We were told that I would be the caregiver & to fully expect it to be a 24/7 responsibility. I can handle that & willing so. But I also can NOT get sick because if I do, they would insist I not be around Ray until I was over any illness I might have. We were told to expect many many days of Ray feeling pretty bad throughout the transplant procedures but that there would be a lot of hospital support for us, both physically & emotionally.

So what’s next? We meet next week (Dec. 20) to hopefully find out if that 17p chromosome showed up in the last biopsy & that will determine what we steps we take next. We have a LOT of decisions to make. If only we could see into the future so we’d know the best route to take. On a positive side, we’ve recently heard of many success stories of folks that have went through these transplants & are living proof that it can be worth the risk. Sometimes you just gotta take the risk…