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Myelofibrosis: age: and BMT

Posted by hughp @hughp, 4 days ago

I was diagnosed with Myelofibrosis in January 2026 after a blood test related to Gout symptoms and itchy skin revealed high platelet counts. My Hematologist put me on Hydroxyurea in mid Jan and now 6 months later my platelets have steadily come down to current normal of 261 (last month was much the same). All my organs were checked via Ultrasound and deemed to be normal. I walk for 4-5 kilometers each day and try to stay in shape as best as I can. I am 75 years old. Right at the outset of my diagnosis my hematologist said that the only actual cure for PMF was BMT but that was not for me due to my age. To that end, does anyone in this group have any experiences to share on this subject of BMT and age as a deterrent? Also, does anyone have any experiences or actual insight on Reduced Intensity Conditioning (Mini Transplant) for Aged individuals who are in otherwise good health?

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Mentor
Lori, Volunteer Mentor | @loribmt | 4 days ago

Hi Hugh. Age can be a deterrent for a BMT. However, I have personally mentored 2 men ( patients at my local cancer center) who were 75 at the time of transplant. One had AML, the other MDS. But myelofibrosis is another blood cancer for which the BMT has a good success rate. I haven't spoken with them personally for a couple of years but per mutual acquaintances the men are well into their 80s and doing great!

Some clinics have a cut-off age. Others, usually larger teaching/research hospitals, will allow patients to make the decision as to their age, after having a long discussion with risk vs rewards. Health, mental attitude and co-morbidities weigh heavily in the decision making process. If you're willing to take the chance so is the transplant team.

Just to clarify, there is no 'mini transplant'. Even the reduced intensity chemo is aggressive. But the reduction in intensity is often better tolerated in older patients...though it's a bit rough. As we age our bodies can't metabolize or process the chemicals as well as they did when younger.
I had an allogeneic transplant with the reduced chemo 7 years ago at 65. It wasn't a walk in the park but it gave me a 2nd chance at life. I'm now 72 and feel as though nothing ever happened.

Even though your hematologist didn't feel it was an option for you, you really won't know unless you explore the option directly with a transplant doctor/team. Do you have the ability to get a 2nd opinion?

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2 replies
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hughp | @hughp | 3 days ago
In reply to @loribmt "Hi Hugh. Age can be a deterrent for a BMT. However, I have personally mentored 2..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

Hi Hugh. Age can be a deterrent for a BMT. However, I have personally mentored 2 men ( patients at my local cancer center) who were 75 at the time of transplant. One had AML, the other MDS. But myelofibrosis is another blood cancer for which the BMT has a good success rate. I haven't spoken with them personally for a couple of years but per mutual acquaintances the men are well into their 80s and doing great!

Some clinics have a cut-off age. Others, usually larger teaching/research hospitals, will allow patients to make the decision as to their age, after having a long discussion with risk vs rewards. Health, mental attitude and co-morbidities weigh heavily in the decision making process. If you're willing to take the chance so is the transplant team.

Just to clarify, there is no 'mini transplant'. Even the reduced intensity chemo is aggressive. But the reduction in intensity is often better tolerated in older patients...though it's a bit rough. As we age our bodies can't metabolize or process the chemicals as well as they did when younger.
I had an allogeneic transplant with the reduced chemo 7 years ago at 65. It wasn't a walk in the park but it gave me a 2nd chance at life. I'm now 72 and feel as though nothing ever happened.

Even though your hematologist didn't feel it was an option for you, you really won't know unless you explore the option directly with a transplant doctor/team. Do you have the ability to get a 2nd opinion?

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@loribmt thank you Lori for your kind and informative words, I most sincerely appreciate them.
I have a follow-up appointment with my Hematologist on August 5 for a full review of where things are after 6 months on HU: I do intend to explore a next step second opinion on my options.

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1pearl | @1pearl | 3 days ago
In reply to @loribmt "Hi Hugh. Age can be a deterrent for a BMT. However, I have personally mentored 2..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

Hi Hugh. Age can be a deterrent for a BMT. However, I have personally mentored 2 men ( patients at my local cancer center) who were 75 at the time of transplant. One had AML, the other MDS. But myelofibrosis is another blood cancer for which the BMT has a good success rate. I haven't spoken with them personally for a couple of years but per mutual acquaintances the men are well into their 80s and doing great!

Some clinics have a cut-off age. Others, usually larger teaching/research hospitals, will allow patients to make the decision as to their age, after having a long discussion with risk vs rewards. Health, mental attitude and co-morbidities weigh heavily in the decision making process. If you're willing to take the chance so is the transplant team.

Just to clarify, there is no 'mini transplant'. Even the reduced intensity chemo is aggressive. But the reduction in intensity is often better tolerated in older patients...though it's a bit rough. As we age our bodies can't metabolize or process the chemicals as well as they did when younger.
I had an allogeneic transplant with the reduced chemo 7 years ago at 65. It wasn't a walk in the park but it gave me a 2nd chance at life. I'm now 72 and feel as though nothing ever happened.

Even though your hematologist didn't feel it was an option for you, you really won't know unless you explore the option directly with a transplant doctor/team. Do you have the ability to get a 2nd opinion?

Jump to this post

Hi @hughp,
I know it is not fun being told we have myelofibrosis. I went for a routine physical in December 2024 and my lab work showed high platelets so I was sent to oncologist/hematologist. I had and still have no symptoms. She diagnosed me with ET in January 2025 which she changed to PMF in February 2025. I had a pelvis and abdomen CT scan in May 2025 and my spleen was found to be of normal size. She sent me to a bone marrow transplant specialist who I saw in August 2025 and specifically asked if age was an issue if I ever needed a bone marrow transplant in the future. He told me age does not matter but person’s health and fitness does. I was 65 at the time and he said I was in no need of a bone marrow transplant then and may never need one. He works for City of Hope in Duarte, CA , so I consider him reputable. I thought seeing a MPN specialist might be a good idea so I changed insurance in January 2026 so I could see one as my previous insurance had none and was the reason I was sent to bone marrow transplant specialist. Unfortunately, I was extremely disappointed with my visit with MPN specialist. I will leave it at that.
Have you done NGS testing and know what mutations you have? Have you had risk analysis for myelofibrosis, something like DIPS and MIPS?
It is great you are advocating for yourself. Keep on searching for the options that are best for you. It might even take more than two opinions to find a doctor I am comfortable with is what I have found.
Stay positive, do what makes you happy, pray, and keep on walking!

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artistsurvivor | @artistsurvivor | 2 days ago

Hi all
I have myelofibrosis which was pretty aggressive. At 65 after diagnosis in Jan I had to have BMT by November. Yes it’s hard but this November will be two years and my life is 85% back to normal. I still have very little immune system and a cold can escalate to pneumonia very quickly. ( this Feb ) but I have energy , I’m eating well and exercising. And most importantly spending time with my family ☺️best of luck to all of u. Ps it was allogenic bmt from my daughter. Treated at Hopkins in Baltimore absolutely the best team there !
Gail

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artistsurvivor | @artistsurvivor | 2 days ago
In reply to @artistsurvivor "Hi all I have myelofibrosis which was pretty aggressive. At 65 after diagnosis in Jan I..." + (show)
Profile picture for artistsurvivor @artistsurvivor

Hi all
I have myelofibrosis which was pretty aggressive. At 65 after diagnosis in Jan I had to have BMT by November. Yes it’s hard but this November will be two years and my life is 85% back to normal. I still have very little immune system and a cold can escalate to pneumonia very quickly. ( this Feb ) but I have energy , I’m eating well and exercising. And most importantly spending time with my family ☺️best of luck to all of u. Ps it was allogenic bmt from my daughter. Treated at Hopkins in Baltimore absolutely the best team there !
Gail

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Thank you.

Sent from Yahoo Mail for iPhone

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