Has anyone had a succesful bone marrow transplant for myelofibrosis?

Posted by reynaandriana @reynaandriana, May 12 12:56pm

My uncle is on a high risk level and they are still trying to see if the bone marrow transplant is still an option. He's 50 years old he has a brother who is a 98% match but the dillema is that he is in Mexico and there are very few options for this procedure. We feel a bit defeated and I was just curious to see if that would be an issue here in the states or if anyone knew about someone with an experience with this diagnosis.

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

Hello @reynaandriana

Many have had success with a BMT with Myelofibrosis. There is also new research on a drug that reduces the fibrosis and symptoms. https://m.youtube.com/shorts/QI7Mgh2XARI

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Profile picture for davi0937 @davi0937

Hello @reynaandriana

Many have had success with a BMT with Myelofibrosis. There is also new research on a drug that reduces the fibrosis and symptoms. https://m.youtube.com/shorts/QI7Mgh2XARI

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@davi0937 Thank you so much for your feedback. I'm hopefull that any information we can share with doctors over seas can help my uncles case. It's hard to find an MD that is willing to do this type of procedure we are also hoping we can find an altrenative route here in the states in case we are not succesful in Mexico.

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Profile picture for reynaandriana @reynaandriana

@davi0937 Thank you so much for your feedback. I'm hopefull that any information we can share with doctors over seas can help my uncles case. It's hard to find an MD that is willing to do this type of procedure we are also hoping we can find an altrenative route here in the states in case we are not succesful in Mexico.

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Hi @reynaandriana, Welcome to Mayo Connect. As @davi0937 shared with you, many people with Myelofibrosis have had success stories with treating their disease with a bone marrow transplant, using cells from a donor.

If your uncle is a candidate for a BMT, it's not just about finding an MD to do the procedure. It's also crucial that this is done is a hospital where they routinely do bone marrow transplants so that there is a deep level of understanding for this process. It's quite complex, patients often stay in or near the transplant center for at least 100 days. Often a teaching or research hospital associated with a university in a larger city will be the best choices.

Mayo Clinic partners with certain clinics who meet their high standard of care. I’m posting a link for you with information and a map for these care facilities. I noticed there is one on Mexico but not sure if this is nearby for you. https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

Here’s the link to the hospital in Mexico https://healthtravelmexico.com/eng_index.php

Reading through your message again, are your uncle and his brother, who is a potential donor, both in Mexico?

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi @reynaandriana, Welcome to Mayo Connect. As @davi0937 shared with you, many people with Myelofibrosis have had success stories with treating their disease with a bone marrow transplant, using cells from a donor.

If your uncle is a candidate for a BMT, it's not just about finding an MD to do the procedure. It's also crucial that this is done is a hospital where they routinely do bone marrow transplants so that there is a deep level of understanding for this process. It's quite complex, patients often stay in or near the transplant center for at least 100 days. Often a teaching or research hospital associated with a university in a larger city will be the best choices.

Mayo Clinic partners with certain clinics who meet their high standard of care. I’m posting a link for you with information and a map for these care facilities. I noticed there is one on Mexico but not sure if this is nearby for you. https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

Here’s the link to the hospital in Mexico https://healthtravelmexico.com/eng_index.php

Reading through your message again, are your uncle and his brother, who is a potential donor, both in Mexico?

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@loribmt Thanks so much for the information. Yes, both uncles are in Mexico, and they are finishing up some exams to make sure they are both healthy enough for the transplant. There are a few logisitics that we are still trying to figure out with the insurance and decide between either doing the procedure close by or farther away to obtain better results. If, for some reason he is not cleared to do the transplant, he was given a prognosis of 6months. He is currenly doing blood transfusions every 7 days as his condition has worsened. We were told that its crucial that we start the process sooner rather than later.

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Profile picture for reynaandriana @reynaandriana

@loribmt Thanks so much for the information. Yes, both uncles are in Mexico, and they are finishing up some exams to make sure they are both healthy enough for the transplant. There are a few logisitics that we are still trying to figure out with the insurance and decide between either doing the procedure close by or farther away to obtain better results. If, for some reason he is not cleared to do the transplant, he was given a prognosis of 6months. He is currenly doing blood transfusions every 7 days as his condition has worsened. We were told that its crucial that we start the process sooner rather than later.

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@reynaandriana I wish I had more information to give you. But it is crucial for your uncle’s case not to be delayed. The logistics are always the ‘fly in the ointment’ it seems. ☺️

You mentioned “doing the procedure close by or farther away to obtain better results”. Having had a bone marrow transplant myself, my husband and I relocated to Mayo for four months, which is 4 hours from our home.

There are huge advantages having this procedure performed in a larger, more capable facility. Like I mentioned previously, a BMT is a complex procedure and the first 100 days of post transplant care are critical. There can be complications following the transplant because of infection risk, the side effects of the pre-conditioning chemo, and the newly implanted cells themselves causing a reaction. So it’s key to have a depth of knowledge by the staff for how to handle each situation. Patients undergo frequent observation, monitoring and testing to make sure they remain healthy.

Smaller clinics, where not many transplants are performed, often just ‘go by the book’ for post BMT treatments. But each patient’s history is different and one size does not fit all.
So, while it may be more complicated to relocate a bit further to a better facility, it may pay off hugely in the success of the BMT.
I hope your uncle is able to get the transplant soon and that has been made a little easier already by the fact he has a perfect donor! ☺️ Since his brother was tested already for a match, would the doctor that ordered that testing be able to refer your uncle to a suitable transplant site?
Please keep me updated about your uncle.

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Profile picture for Lori, Volunteer Mentor @loribmt

@reynaandriana I wish I had more information to give you. But it is crucial for your uncle’s case not to be delayed. The logistics are always the ‘fly in the ointment’ it seems. ☺️

You mentioned “doing the procedure close by or farther away to obtain better results”. Having had a bone marrow transplant myself, my husband and I relocated to Mayo for four months, which is 4 hours from our home.

There are huge advantages having this procedure performed in a larger, more capable facility. Like I mentioned previously, a BMT is a complex procedure and the first 100 days of post transplant care are critical. There can be complications following the transplant because of infection risk, the side effects of the pre-conditioning chemo, and the newly implanted cells themselves causing a reaction. So it’s key to have a depth of knowledge by the staff for how to handle each situation. Patients undergo frequent observation, monitoring and testing to make sure they remain healthy.

Smaller clinics, where not many transplants are performed, often just ‘go by the book’ for post BMT treatments. But each patient’s history is different and one size does not fit all.
So, while it may be more complicated to relocate a bit further to a better facility, it may pay off hugely in the success of the BMT.
I hope your uncle is able to get the transplant soon and that has been made a little easier already by the fact he has a perfect donor! ☺️ Since his brother was tested already for a match, would the doctor that ordered that testing be able to refer your uncle to a suitable transplant site?
Please keep me updated about your uncle.

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@loribmt Your experience itself is very helpful, thank you so much. I'm forwarding the info to my family members in Mexico. This information will help us choose the best option. The doctor had given two different options, one requiring travel and the other one without travel, but it seems that the one with travel is the better option since it would be in the city with better care like you had mentioned. My uncle can't stay sitting for too long but he may have to suffer a bit to get better care. Thankfully, we have a big family here in the U.S. and in Mexico so he has a good support system behind him. We are all doing as much research as we can to help him with this situation. Again, thank you for taking the time of your day to respond. We appreciate it so much! I will keep you updated on how it goes.

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