Anyone want to talk about Myelofibrosis?

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.
https://www.mayoclinic.org/diseases-conditions/myelofibrosis/symptoms-causes/syc-20355057
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?

Thank you for the response and information! Truly appreciated! We are 8 hrs away from Mayo. The dr’s there said the U of M hospital in Mi is a great place too. Just don’t know if any Dr’s. But doing research! Appreciate your response.

@miguy, I don’t have any doctor recommendations, but want to let you know that you can get loads of support, your questions answered and more about BMT from others like @loribmt who have been there. You and your buddy may be interested in joining this discussion where the time is right:
- My Bone Marrow Transplant (BMT/SCT) story: Will you share yours? https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/

Any luck with your doctor search?

Can Jakafi cause irregular heartbeat?

Hi @pamdg, You’re wondering if Jakafi can cause irregular heartbeat.
I’m looking at the Drugs.com website for the side effects of Jakafi. There is no listing for irregular heartbeat. But it can cause fast or slow heartbeat as a “more common” side effect.
In the “less common” column of side effects are anxiety and gas. Anxiety/stress has been known to cause irregular heartbeats. But if this is frequent you should discuss this with your medical team.
I know gas sounds like an odd thing to bring up, but I had a medication that created gas which actually felt like my heart skipping a beat as it moved through an area of my gut. My chemo nurse with a stethoscope had me listen. 😆 Anyway, that’s just a thought.
I’ve not taken Jakafi personally so hopefully someone in this group who is using it will have some information for you.
Were you recently diagnosed with myelofibrosis? Is Jakafi a new prescription for you?

Did your Dr. approve taking quercetin with Jakafi? Thanks

Myelofibrosis (Diagnosed by Mayo 7 years ago) is one of those conditions which many doctors know of but few doctors are willing to treat. It can take a lot of time and care over a few decades. Finding a doctor to diagnose and treat is a pain in the behind in rural areas. oldkarl