Hello; I've been fighting MF for a very long time, about 15 yrs. I'm 75 yrs old. I've had just about every treatment available. Some seemed to help for a while, but didn't last for the long term. I take Reblozyl injections every 3 weeks, Aranesp injections every 2 weeks, Dacogen infusions every 4 weeks. Vonjo oral twice every day. Blood transfusions are needed every 2-4 weeks to keep HGB above 8. I've been anxiously awaiting the release of momelotinib. I ask the FDA about it today, 7/10/23, and they said a decision on it will be made by Sept 16, 2023. No doubt that I have been slowly loosing ground over the entire time and my ability to continue my active life style as usual has been greatly decreased. I do continue to take a long walk daily, but I take care not to push myself too hard. Without the available Oxygen it's easy to overdo things. The one thing I suggest is to not just sit on your butt and cry.... get up every morning, clean yourself up, look your best and find something every day to be greatful for.
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
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
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?
@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!
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/
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Hello; I've been fighting MF for a very long time, about 15 yrs. I'm 75 yrs old. I've had just about every treatment available. Some seemed to help for a while, but didn't last for the long term. I take Reblozyl injections every 3 weeks, Aranesp injections every 2 weeks, Dacogen infusions every 4 weeks. Vonjo oral twice every day. Blood transfusions are needed every 2-4 weeks to keep HGB above 8. I've been anxiously awaiting the release of momelotinib. I ask the FDA about it today, 7/10/23, and they said a decision on it will be made by Sept 16, 2023. No doubt that I have been slowly loosing ground over the entire time and my ability to continue my active life style as usual has been greatly decreased. I do continue to take a long walk daily, but I take care not to push myself too hard. Without the available Oxygen it's easy to overdo things. The one thing I suggest is to not just sit on your butt and cry.... get up every morning, clean yourself up, look your best and find something every day to be greatful for.
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7 ReactionsI 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?
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
@teriberi123, her Dr. did not approve it with Jakafi or with pacritinib.
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
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1 ReactionI was diagnosed with PV three years ago. Started Jakafi 8 months ago.
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1 ReactionHi @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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Like -
Helpful -
Hug
2 ReactionsCan Jakafi cause irregular heartbeat?
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!
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Hug
2 Reactions@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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