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?
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.
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/
@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/
Thanks for the info Colleen. His wife signed him up for the U of MI center on Monday. Said it may take 7-10 days?!? So, we are In a bit of a holding pattern. He did get his Jakafi today and started on that! Praying that eases the pain! Thank you!
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?
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?
I was diagnosed by Mayo with myelofibrosis several years ago. Since then, various clinics have repeatedly said I have myelofibrosis, along with a bunch of other familial stuff. I am still in the process of sorting it out, as the whole thing is systemic, plus other crap such as multiple types of muscular dystrophies, cancers, etc. With any luck I should be able to get a whole genome analysis some time this year. The whole thing depends on finding docs and labs to be brave enough to sign the order. I think I may have found one, so we will wait and see what happens next. The current USA system seems to be working on the basis of "If we can just wait long enough, this guy will be dead before we have to tell him anything, but we can still collect the money." oldkarl
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
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
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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.
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1 Reaction@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?
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1 ReactionThanks for the info Colleen. His wife signed him up for the U of MI center on Monday. Said it may take 7-10 days?!? So, we are In a bit of a holding pattern. He did get his Jakafi today and started on that! Praying that eases the pain! Thank you!
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Helpful -
Hug
2 ReactionsCan 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?
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Helpful -
Hug
2 ReactionsI was diagnosed with PV three years ago. Started Jakafi 8 months ago.
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1 ReactionI was diagnosed by Mayo with myelofibrosis several years ago. Since then, various clinics have repeatedly said I have myelofibrosis, along with a bunch of other familial stuff. I am still in the process of sorting it out, as the whole thing is systemic, plus other crap such as multiple types of muscular dystrophies, cancers, etc. With any luck I should be able to get a whole genome analysis some time this year. The whole thing depends on finding docs and labs to be brave enough to sign the order. I think I may have found one, so we will wait and see what happens next. The current USA system seems to be working on the basis of "If we can just wait long enough, this guy will be dead before we have to tell him anything, but we can still collect the money." oldkarl
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1 Reaction@teriberi123, her Dr. did not approve it with Jakafi or with pacritinib.
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
I have smoldering mutiple myeloma which could develop further. We have great doctors here but it is a major problem when figuerng our where to move.
The rural areas are poorly served. Have to been to a large city to request treatment that could be handled remotely?