|That's me and Zack on the left, Jake and Jesse on the right. Jake was a 3/6 match, and Jesse was a 5/6 match. I guess Zack is the best brother! :)|
The good news about the consultation: I have a sibling match, which means I will be participating in a sibling clinical trial/study (extremely detailed explanation here) with the main objective being trying to reduce problems with Graft Versus Host Disease (GVHD, where the recipient's body doesn't recognize the donor cells and starts attacking them) by giving me not only Zack's bone marrow cells, but also an infusion of his lymphocyte cells two weeks after transplant. Currently they have about 40 people doing the trial with good-ish results. So far, only 5 or 6 have relapsed, and 1 has died, but I was told the death happened to a person who was already in ICU and not doing very well at all. They want to do a "mini-transplant" which just means they use a reduced dose of chemo to kill off all of my cells so that I hopefully have fewer long-lasting side effects.
All things considered, this trial is very promising and one I desperately wanted to get excited about, but at the time we were told about it I didn't know if I even HAD a match, so I didn't dwell too long on the idea! But now we are REALLY excited, and happy to be here at Hackensack doing the transplant at such an amazing location! Adam and I tossed around the idea of going to Utah for a transplant, if in the end I didn't have a brother who was a match, mostly because survival rates go down so much without a perfect match. Here's one of those numbers I didn't like knowing until I found out about Zack: Odds of finding an unrelated perfect donor match: 42 in 1 billion! Crazy huh? And 2 years post transplant 85% of sibling recipients were still living, opposed to 45% of non-sibling donor recipients... I like 85% 100% better! :)
More numbers: The chance of a standard long-term (5 years) remission after a bone marrow transplant is 30%. Not even a coin toss on this one. Of course, that number depends on a lot of factors like my relative health at transplant time (considered good), level of cancer (will it be in remission when the transplant goes down?), and my relative youth is helpful too. There is a 7-10% chance of dying from transplant related complications, that number goes up considerably with a non-related donor. SO, I need to be in the small 30%, but not the smaller 10%, and hopefully not the largest 60%!! The 60% that relapse after transplant continue with different types of drugs and treatment to try to beat the cancer but obviously there isn't as much hope for an actual cure.
I've been very open with the doctors about considering treatment in Utah. They've been understanding but have pushed for staying here. I liked how my transplant doc, Dr. Donato, said I had everything going for me here (and she listed a few things for me, including being in some of the world's best treatment programs) with the only drawback being not having family close by to help me through the rough patches. So she asked if I had a strong support group here that I've made since living in NJ for two years... And that made up my mind. I am surrounded by some of the best friends and support group I could hope for. And she was right, I have the best treatment available to me, just 30 minutes away. Hackensack does over 300 transplants a year, about 1/2 of which are Allogeneic bone marrow transplants. They are one of the largest around- by comparison, LDS hospital in Utah has done only 600 transplants since their program started in 1978. Makes me happy to be here in such a prestigious area for health care with some of the world's best doctors and programs. I can't help but be grateful for the move across the country, even though it means I'm not close to family when I'd like nothing better as we go through all of this.
I am so happy Zack will be donating his immune system to me! It also means he will be able to come out here to NJ for around 3 weeks in May! If my scans in April come back clear and the new chemo has done it's job so that I hear that now infamous word, "remission," then we'll get going on the transplant in May. I may have to get one week of chemo before the BIG chemo of the transplant, not sure why it was they told me about the extra one we weren't expecting... I'll ask Adam, he will probably remember! But that's the plan. Now let's see how much of this follows accordingly!
|Zack and his girlfriend Katie|