re: If you're 55 or younger step up to the plate...

Major upvote. I’m at MD Anderson with my wife right now for a stem cell transplant. She has MDS, a blood cancer that was caused by her treatment for breast cancer a few years ago…happens in less than 1% of people that had her regiment.

She’s currently on Day 9 since the stem cell infusion. It’s complete hell. They basically destroy your current marrow (that’s a very simple and incomplete way to describe it but gets the point across) and you wait for your marrow to start producing again. Takes two to three weeks on average. During that time you can’t fight any infection or heal your injuries…and there are a lot that come with it. She has throat sores from the chemo and can no longer swallow without extreme pain. Nothing to do except wait for engraftment and take heavy pain meds that do nothing but help you sleep.

Hardest thing by far I’ve ever seen and we’re probably not at rock bottom yet. And 50% of MDS transplant patients relapse and die within two years (we’re hopeful her odds are a little better since she’s only 49 and this is more commonly an elderly issue).

So my heart goes out to this girl. The best case scenario is an incredibly difficult path and she’ll need support and prayers. Being a donor is typically an easy process. A week before you donate, they give you shots to boost your production of stem cells. It does cause some bone and joint pain as the marrow ramps up. The cells are extracted through IV in I believe 90%+ of the time. Overall a small cost to save a life.

quote:

---

I’ve had cancer, and my CBC levels have never returned to pre chemo levels, even after 20 years. She doesn’t want my marrow.

---

that's a very marrow way of looking at it

quote:

---

am registered as a bone marrow donor.

---

If selected ever, play hardball. “I’m gonna need some OxyContin.” Unless it’s changed they are boring holes in your pelvis to get it out. You can feel good about helping and be high at the same time.

quote:

---

The scariest part is before you take the shot they point blank tell you once you start the shot the person you are donating to is doing the stuff that kills their marrow, if you back out last minute the person will die.

---

That was our fear. Her donor is from S America and her previous two had to back out for medical reasons. The last one was a week before we were supposed to move and get started. There are generally options in that situation but it’s not good.

Day 0 is the day the infuse the cells. For us that was a Tuesday. She was admitted to the hospital the Tuesday before and went through a week of chemo to kill off her marrow. That’s the same time the donor went through his process. They pulled from him on Monday and flew it straight here and infused her Tuesday morning. That’s a tight timeline and was a little scary but it went fine. They told us they do this during hurricanes and get the coast guard involved if needed.

Thank you for what you did. Be proud you saved a life. I know from experience how hard it can be to find a donor and you’re probably seen as an angel to that whole family.

Bumping to encourage all you real men to step up and register. It's an opportunity to possibly save a life. I lost my dad to leukemia when I was in college, and it is a very difficult way to go. He had a good match (my uncle) but did not recover sufficient health to undergo the procedure.

It was difficult to walk past the children who were there with leukemia without crying. I registered and have also donated blood for kids, one of which was my cousin's 6 year old son, who had chemo and has done fine for years since. Please also consider the Leukemia and Lymphoma Society for your charitable donations.

quote:

---

There’s always a risk with any type of procedure but it’s very difficult to find a perfect match

---

This was our issue. MD Anderson rates a match based on 8 proteins/genes (very simplified way to describe it and again not accurate but gets the point across). She has twin brothers that are a 5/8 match…not good enough. A sibling has a 25% chance to match, a stranger I believe is 1 in 3000.

My wife’s issue is her dad was born in Spain and mother in Bolivia. That’s a very difficult makeup to find. Her current donor (and the ones that backed out) are a 7/8 match. Perfect is better but not an option. Without a transplant she would have likely died within two years due to a specific mutation in the cancer she has that less than 1% of MDS patients have (her cancer is a less than 1 in 100 chance of developing from her first chemo, and this mutation is less than 1 in 100 of the already rare cancer!). That’s big because Ochner wanted to wait two years for the transplant because they didn’t know about the mutation. That’s why you always get a second opinion and go to the Best if you can.

The transplant brings a lot of changes. Your blood type will change to the donor’s…my wife is already the same so no change there. That happens gradually over 12 months after. All of your immunizations you ever had are wiped out and need to be redone. She will also show some sort of male DNA in blood work after this…I’ve been assured I’m not considered gay when have sex again

Finding a match comes down to a lot of luck and genetics. White people have the best chance because there are more white donors. Black is the hardest because there are less black donors. I don’t think it’s necessarily a white person needs a white donor, but it’s definitely more likely to find a good match within the race. I think a lot of donors come from Germany because they actively encourage their military to sign up, but I may be off on that.

quote:

---

Everyone should sign up through DKMS to be a donor, I got the call 10 years after I registered. If you are a match for someone they handle everything & the procedure is mostly painless.

The lady I donated to is doing great now 8 years later & has become a wonderful friend.

---

Awesome man. You should be proud of yourself