@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/
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.
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!
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?
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!
There is a lot of amazing info in this group. Kudos to many of you have researched experimented and brought forward alternatives to expensive and many times harmful drugs that may or may not help in our fight against MF. My father passed in June from MF, he was in later stages of MF when diagnosed though numerous symptoms existed for years prior. His experience with Jakifi was horrendous, coming off Jakifi nearly killed him and he never fully gained his previous level of health.
Seeing and knowing the symptoms of MF I pushed my oncologist for further testing of my enlarged spleen that was discovered during a follow up ultrasound post melanoma treatment. It took pushing the oncologist to complete a simple JAK2 test, which I have. My new oncologist ordered a bone marrow biopsy and further genetic testing. Confirmed PMF, though early, it is present. At 47 I am young for the disease and am still wrapping my head around the diagnosis. Prognosis from Dr. this week and will discuss options then, but will certainly be discussing some of your experiences and alternatives to the "approved" methods.
Thank you all for sharing your stories and being on the forefront of alternatives.
There is a lot of amazing info in this group. Kudos to many of you have researched experimented and brought forward alternatives to expensive and many times harmful drugs that may or may not help in our fight against MF. My father passed in June from MF, he was in later stages of MF when diagnosed though numerous symptoms existed for years prior. His experience with Jakifi was horrendous, coming off Jakifi nearly killed him and he never fully gained his previous level of health.
Seeing and knowing the symptoms of MF I pushed my oncologist for further testing of my enlarged spleen that was discovered during a follow up ultrasound post melanoma treatment. It took pushing the oncologist to complete a simple JAK2 test, which I have. My new oncologist ordered a bone marrow biopsy and further genetic testing. Confirmed PMF, though early, it is present. At 47 I am young for the disease and am still wrapping my head around the diagnosis. Prognosis from Dr. this week and will discuss options then, but will certainly be discussing some of your experiences and alternatives to the "approved" methods.
Thank you all for sharing your stories and being on the forefront of alternatives.
Congradulations on your tenth anniversary.That is amazing!! Yes, quercetin is becoming a Swiss Army knife. I came across this article regarding eye health benefits with quercetin. As I posted earlier, my wife went on Jakafi and off most of the supplements. Today I asked the doctor if he would approve quercetin. No, I'm not familiar with it was his reply. I try again at the next appointment. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5685256/
OK, link 1) Some of the key high-antioxidant foods to focus on include:
green leafy vegetables
cruciferous veggies (broccoli, cabbage, cauliflower, etc.)
berries
omega-3 foods like salmon and wild seafood
nuts and seeds (chia, flax, hemp, pumpkin, etc.)
unrefined oils like extra virgin olive oil and coconut oil
herbs and spices (ginger, turmeric, garlic, for example)
We have salmon every Sunday and white and tinned fish regularly. We always use coconut oil and olive oil (no others). Nuts and seeds are eaten every day including chia and flax, pumpkin and sunflower, hemp occasionally and always have a full drawer of organic veg.; berries I love!
I have no problem researching and understanding diet. I researched, over many years, a history of diet back to the Prosimion, 60 million years ago. I have given talks with music on the history of food and it would surprise me if any really thoroughly good diet has no historical background! There are variables for groups, of course, one is the different diets tolerated over ages in different peoples - ref William Wolcott and the Metabolic Typing Diet, essentially the basic difference between the hunter-gatherer diet of Africa (30-40& lean meat and 60-70% vegetarian), and the eastern European big game hunter (mostly meat with a little seasonal veg). There will naturally be a 'mixed type' too. Even the Innuit eat 24 different kinds of moss, apparently! This is why the 'single-minded' lobbies always battle over which is best. They have not heard of the history of variety (the only newcomer in the field being the Agrarian diet - not yet fully assimilated, it is said). Then, each individual is different too. It is both hugely complex and quite simple - the brain has no taste buds but, there again, we have three different kinds of these A) natural - (lost in the mists of our childhood, probably), B) Learned at table, C) corrupted by fancy! Overcoming the last two would be the simplicity of diet, but who said the simple is easy? The Weston Price Foundation determined that the maritime diet is the healthiest, the hunter-gatherer second and agrarian last!
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Can 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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Helpful -
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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1 ReactionThank 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.
-
Like -
Helpful -
Hug
1 ReactionGood 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?
-
Like -
Helpful -
Hug
1 ReactionMy 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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Helpful -
Hug
2 ReactionsGlad you popped over to this discussion group, Scott. I'm tagging fellow myelofibrosis members like @teriberi123 @stimme @wellness3070 @stevehurlburt @onamission
Given that you are only 47, you might be interested in this discussion started by @rspriggle who was diagnosed in their 40's.
- Primary Myelofibrosis diagnosis in 40’s https://connect.mayoclinic.org/discussion/primary-myelofibrosis-diagnosis-in-40s/
What questions will you have for your doctor's appointment coming up to discuss treatment options?
There is a lot of amazing info in this group. Kudos to many of you have researched experimented and brought forward alternatives to expensive and many times harmful drugs that may or may not help in our fight against MF. My father passed in June from MF, he was in later stages of MF when diagnosed though numerous symptoms existed for years prior. His experience with Jakifi was horrendous, coming off Jakifi nearly killed him and he never fully gained his previous level of health.
Seeing and knowing the symptoms of MF I pushed my oncologist for further testing of my enlarged spleen that was discovered during a follow up ultrasound post melanoma treatment. It took pushing the oncologist to complete a simple JAK2 test, which I have. My new oncologist ordered a bone marrow biopsy and further genetic testing. Confirmed PMF, though early, it is present. At 47 I am young for the disease and am still wrapping my head around the diagnosis. Prognosis from Dr. this week and will discuss options then, but will certainly be discussing some of your experiences and alternatives to the "approved" methods.
Thank you all for sharing your stories and being on the forefront of alternatives.
-
Like -
Helpful -
Hug
1 ReactionDid your Dr. approve taking quercetin with Jakafi? Thanks
OK, link 1) Some of the key high-antioxidant foods to focus on include:
green leafy vegetables
cruciferous veggies (broccoli, cabbage, cauliflower, etc.)
berries
omega-3 foods like salmon and wild seafood
nuts and seeds (chia, flax, hemp, pumpkin, etc.)
unrefined oils like extra virgin olive oil and coconut oil
herbs and spices (ginger, turmeric, garlic, for example)
We have salmon every Sunday and white and tinned fish regularly. We always use coconut oil and olive oil (no others). Nuts and seeds are eaten every day including chia and flax, pumpkin and sunflower, hemp occasionally and always have a full drawer of organic veg.; berries I love!
I have no problem researching and understanding diet. I researched, over many years, a history of diet back to the Prosimion, 60 million years ago. I have given talks with music on the history of food and it would surprise me if any really thoroughly good diet has no historical background! There are variables for groups, of course, one is the different diets tolerated over ages in different peoples - ref William Wolcott and the Metabolic Typing Diet, essentially the basic difference between the hunter-gatherer diet of Africa (30-40& lean meat and 60-70% vegetarian), and the eastern European big game hunter (mostly meat with a little seasonal veg). There will naturally be a 'mixed type' too. Even the Innuit eat 24 different kinds of moss, apparently! This is why the 'single-minded' lobbies always battle over which is best. They have not heard of the history of variety (the only newcomer in the field being the Agrarian diet - not yet fully assimilated, it is said). Then, each individual is different too. It is both hugely complex and quite simple - the brain has no taste buds but, there again, we have three different kinds of these A) natural - (lost in the mists of our childhood, probably), B) Learned at table, C) corrupted by fancy! Overcoming the last two would be the simplicity of diet, but who said the simple is easy? The Weston Price Foundation determined that the maritime diet is the healthiest, the hunter-gatherer second and agrarian last!