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Blood Cancers & Disorders | Last Active: Jan 29 6:43am | Replies (111)

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My buddy was diagnosed with Myelofibrosis at Mayo a few weeks ago. He will start on Jakafi on Tuesday. He is at a medium/high level (2). Just got the bone marrow test back and the Dr wants to start working immediately on starting the stem cell transplant process. We went to the Rochester MN Mayo and live in Michigan, so are looking for the BEST Dr at the University of MI for this process. Would love to get a recommendation for a Dr in Michigan and also Any info on what to expect from the stem cell transplant would be appreciated! Thank you!

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Replies to "My buddy was diagnosed with Myelofibrosis at Mayo a few weeks ago. He will start on..."

Good morning, @miguy Your friend has a bit of a blood cancer journey ahead of him but there is hope on the horizon. I’ve put a link in my reply from our Mayo Clinic website which gives a better understanding of the disease itself.


Your friend’s bone marrow is no longer producing healthy blood cells from a mutation that happened at some point in the DNA of few of his blood cells. His current immune system is not recognizing these cells as cancerous and they are allowed to replicate and replace healthy cells. That is where a bone marrow transplant from an unrelated donor comes into the picture. Your friend will need a donation of stem cells from an unrelated donor (allogenic transplant) so that he has an entirely new immune system which will then recognize cancerous cells in the blood and snuff them out.
I had a stem cell/bone marrow transplant coming up on 3 years. It’s not a walk on the beach but it was an absolutely life saving procedure and well worth the effort.
I had my transplant at Mayo-Rochester and had to live there for 4 months. We live 4.5 hours from there so for follow up appointments we do have to make the drive 4 times a year. So I can understand your wanting to find a location closer to home.
Your friend’s best bet is to look for an accredited teaching hospital with a large university, or other large hospitals who have a reputation for doing a substantial amount of allogenic transplants. Maybe another Connect member will pop in with an answer for you. The key factors to look for would be the reputation of successful transplants, the continued follow up of transplant patients as this doesn’t just end after your friend is discharged.
Your friend will need to be near that hospital for 100 days after transplant as that is the risk period for side effects to appear and need to be dealt with quickly.
He’ll also need a dedicated caregiver, as that first hundred days will require someone to be nearby for assistance and to accompany to appointments. This is my experience at Mayo and I have other cohorts who have had transplants at other facilities and this is the norm. That makes finding lodging nearby a critical factor in the transplant.
I’m happy to answer any questions you or your friend might have regarding the transplantation process, what to expect, recovery, graft vs host disease, meds, etc.

Since he must have a hematologist/oncologist locally, perhaps his doctor would have knowledge of a reputable transplantation center. Your friend will also be returning to his home clinic for routine bloodwork to be sent to the transplant hospital if he does not live near that hospital. Has he conferred with his doctor?