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@cupofsunshine

Do you know if there are other places to procure donors...other databases they can search, even overseas? Right now, my whites are holding out. my hemoglobin is beginning to lower (9's), but bounces in the 9 and 10s, my platelets are the lowest ive ever seen now in my entire life, @ 140 range. the other things in my blood look like a complete disaster, but then i tell myself, that must be the blueprint of PMF. My spleen is at 9 cm, like last month. Its not really shrinking anymore. They have me on half the regular dose of Pacritinib (for a reason). And my transplant doctor up at The Mayo said that they have the new medicine called Momelotinib. That will help reduce the anemia portion driven by the PMF.
My family is slowly coming around (my mom and brother), but not my sister. They reacted so irrationally out of fear. And I cant blame them. really. They want to see a cure, as do I. They rather i wait for a cure and not do the transplant.
Talking about finding cures...we all know these scientists and researchers are working hard at it every single day. And, actually, I think they are close to finding one. If my disease would only hold out until they found the cure, wouldn't that be fantastic!!! Heres to extremely positive and hopeful thinking.... we can dare to dream too. 🌌🌟🌠

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Replies to "Do you know if there are other places to procure donors...other databases they can search, even..."

I’m going to answer both of your last 2 comments together since they’re related to stem cell donation.

First, the risk to any donor is extremely low!
https://www.mayoclinic.org/tests-procedures/bone-marrow-donation/about/pac-20393078.

Your brother would most likely be donating stem cells by peripheral blood. Not with a core from his bone marrow. However, if he did, that would be similar to a bone marrow biopsy done under general anesthesia.

The Neupogen is often what cancer patients are given after a round of chemo to force regeneration of white blood cells. I had it 4 different times. It isn’t painful but the results of the injection can be a few days later. It’s advised to take Claritin to minimize any side effect. (That’s not a typo. Claritin allergy medication). He doesn’t have to worry about getting leukemia from this one time situation. If it was that dangerous I can guarantee you donors would be really difficult to find!
There are millions of donors on the world wide registry willing to donate to perfect strangers. Having siblings not willing to step up to the plate is pretty disheartening for you when millions of strangers are waiting to be called if they are a match. 😢
My gosh, your sister cut ties with you because you want to proceed with a transplant? Yet, it’s no big deal if the disease itself takes you out?? She’s missing years of opportunity to HAVE a sister or to spend time with you while you’re here! I lost my brother years ago and I’d give anything to have him back with me! Donating stem cells is nothing compared to saving a life! Yikes.

So, in lieu of a no-go from your family, an unrelated donor is a great option! Be the Match IS global with millions of people on the registry.

Making the decision to have the bone marrow transplant is a deeply personal choice. But in your situation where your condition has morphed into a very aggressive form, you do not have many options. There is no cure for MF and your bone marrow now lacks the ability to give you healthy blood products…red/white cells and platelets.
An allogenic transplant is the only opportunity right now for a chance with long term survival. It completely replaces your current bone marrow with a healthy, new system! Mayo is cautious with making sure the match is as close as possible. Of course there are risks, but you also have risks by not having the transplant when it’s been recommended for you. Doctor’s don’t make that decision lightly.

If you wait for a cure through medication…that’s a long ways out. Delaying until that happens may not be the outcome your siblings are wanting. My odds were even lower than yours. I’d asked my doctor point blank if I’d be here in 2 years without transplant. He hesitated and made a little shake of his head. Then I asked if I’d be here in 5 years. He didn’t even hesitate when he said, “No, you won’t be alive in 5 years,”. I wasn’t ready to kick the bucket yet so risks or not, it was damn the torpedos, full speed ahead. And I never looked back. It’s 4 years later and I have a normal life expectancy now!
You have a really great attitude in spite of not having family backing. And that positivity will have you coming through this and proving them wrong. I’ve mentored several patients undergoing SCT, not just in this forum but through my local cancer center. I have patients from 20 years to 75 and haven’t lost one! ☺️

Good morning, @cupofsunshine . It’s been a while since we’ve chatted. I hope things are progressing for your possible transplant. Any new developments for you?

Hi @cupofsunshine! It’s been quite some time since we’ve chatted. How are you feeling these days? Where are you in your transplant schedule? Will that be happening soon for you?