1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy
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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Posted by Lori, Volunteer Mentor @loribmt, Feb 14, 2021

The past two years have been a storied journey of facing Acute Myeloid Leukemia and a subsequent bone marrow transplant. Being in a high risk category for relapse for AML, a transplant was necessary. Simply put, it would provide a completely new immune system to fend off any remaining AML cells lurking about in my body, after my original factory installed version had become defective in recognizing them. My husband and I shared a collective sigh of relief with the news that my latest bone marrow biopsy, at 19 months post transplant, showed no AML or the mutation which caused it. My new immune system is working!
While celebrating the results with my husband and a pizza, it occurred to me how far I’ve come and how life has changed in the past two years since the onset of AML and the transplant. There have been some challenging transitions but none insurmountable. Of course, life as a genetically modified organism, with two sets of DNA and a new blood type, can have its turf wars with a few GvHD issues, adaptations to medications and such. But I’m incredibly happy to have a second chance with this generous gift of life from an anonymous donor, and through the medical expertise of my amazing BMT-team at Mayo-Rochester. Hopefully I can meet my donor someday to thank him in person. I did send him a card right after the transplant giving him my “undying” gratitude!
We’ve all been given a gift of life. I’d love to hear your story. Lori

What diagnosis brought you to a BMT?

How has it impacted your life and that of your caregiver?

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

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Lori, Volunteer Mentor | @loribmt | 1 hour ago
In reply to @dawnmarieyoung "I’m facing a bone marrow transplant due to myelofibrosis. I have been taking Jakavi for high..." + (show)
Profile picture for dawnmarieyoung @dawnmarieyoung

I’m facing a bone marrow transplant due to myelofibrosis. I have been taking Jakavi for high counts and splenomegaly for 8 years but now I have extremely low white count. ( neutrophils are 0.2)
I can’t stop the Jakavi and there is no treatment to increase my white count. The only option offered is a BMT.
I do not have leukemia.
My brother is an identical stem cell match!
I have had a liver transplant due to complications of myelofibrosis 10 years ago.
I have no other conditions that would complicate the procedure but of course I’m concerned. Has anyone else had a bone marrow transplant for myelofibrosis and what has your experience been. Has anyone achieved a cure with BMT?!

Jump to this post

Hi @dawnmarieyoung I just wanted to follow-up with you to see if you caught my reply to your question about BMT for Myelofibrosis. Here’s the link in case you missed it: https://connect.mayoclinic.org/comment/1356747/

Have there been any more discussions with your doctor regarding the transplant? Any target date planned?

REPLY
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drawlings0803 | @drawlings0803 | 20 hours ago
In reply to @katgob "Deb has said it. The absolute skill in the transplant unit is amazing. Right now, I..." + (show)
Profile picture for katgob @katgob

Deb has said it. The absolute skill in the transplant unit is amazing. Right now, I am getting the chills. I cannot believe I am day 490 after transplant.
Never for a moment was i left and even in the middle of the night when my vital machine buzzed a nurse was there. The DR team who was there every day for updates from me and to give their updates on my progress. I would ask my nurses how long they have worked in this department, and they would say years. I asked the best of the PA's how he loves his job. He has been in transplants for years. At COH it is Floor 6, the transplant floor.
My brother was my family who visited. He meant the world to me to take the time to come visit and do my laundry.
All that Deb and Lori will say is so right. I have a tight band of ladies i shared with and Lori and others here on Mayo gave me the low down on my journey with a BMT.
A day at a time all things are possible. Acceptance to go on this BMT journey is yours.

Jump to this post

Thank you again. I’ll be in touch with everyone in the weeks to come.

REPLY
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drawlings0803 | @drawlings0803 | 20 hours ago
In reply to @deb913 "Hi Diane - I am 61 and 9 months post allogeneic stem cell transplant for eosinophilic..." + (show)
Profile picture for deb913 @deb913

Hi Diane -
I am 61 and 9 months post allogeneic stem cell transplant for eosinophilic leukemia. I am also a nurse so I know how we can overanalyze all options and it can feel overwhelming. Making the decision to move forward with the sct was very difficult for me because I felt really good and my cancer was staying under control with a chemo pill called Jakifi.

The reasons why I decided to go through with it instead of watching and waiting:
1. You actually get the best possible outcome when you have the lowest disease burden and are in otherwise good health. For myself I have also had Lupus (SLE) and HLH (rare and serious immune condition that acts up with no warning).
2. I considered that if I had a serious Lupus flare or HLH flare then I would be really sick and in recovery for months and if my cancer also decided to act up and I then "needed" the sct, I might not be able to do it or certainly it would be riskier.
3. It was a matter of when not if I needed to have a transplant - so like you it is just a timing question - from what you said, it sounds like you will need it as some point. So the question we asked ourselves was what do we gain if we wait - the answer for us was months or maybe a year of feeling pretty good and living our life versus doing the transplant soon when I had a very low disease burden (only 1% cancer cells vs 37% when I started jakifi) and my lupus and HLH were quiet.

Before my transplant I also wrote into this group because I was so scared to move forward, so I absolutely know the feeling of being so scared to move forward. It's a risky procedure and it's scary the more you research it (so stop researching it lol). But for me at the time, I decided to move forward because I had to hope that I would do best with my low disease burden and was relatively healthy otherwise.

My recovery (except for persistent fatigue) has been better than average and I'm very glad I did not wait. In hospital I only had nausea and fatigue not all the other things you hear about, and I have had no GVHD. I mention all this because I am usually the one who gets the rare and bad outcomes, so if I can have a good outcome I feel like it's possible for anyone.

Also want to add, here are some things I did in the days and months before transplant that helped with anxiety and made me feel better about proceeding:
1. Get a good online therapist. Also consider natural supplements, teas or prescription stress relievers.
2. Baths and walks were a great stress relievers. Also for immediate stress relief - a)name 4 things. you see - like red sign, green grass, black car, whatever b)3 things you hear c) 2 things you smell. This short circuits the stress response and helped me to not burst into tears - lol usually I only had to do the "things I see" part and I felt better.
3. Have a couple of friends you can call to vent about your fears.
4. Have a get together with friends and family so you get to see all the people who are important to you.
5. Take a wonderful trip if you have time.
6. I also found a book called Radical Hope very uplifting because it emphasizes that people with tough cancer diagnoses are recovering all the time and gives tips to try, without being overwhelming.
7. I will also tell you that on the day I was admitted when the central line was put in a calm feeling came over me and my anxiety (which was very high) vanished upon admission. I wish this for you and there is a good chance you will feel this way because the sct staff are so knowledgeable and watch you so closely that you will feel very well taken care of.

I hope this helps. You've got this Diane!

My very best to you,
Deb

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Deb,
Thank you so much for sharing your rationale for getting a SCT now & not waiting. Yes, just because I’m doing/feeling good today, doesn’t mean things couldn’t take a turn for the worse, & then the disease burden becomes a barrier to better outcomes.
I’m not going to Google anything else before going into the hospital, I promise. I think we research things that only end up scaring us. I’d rather read about all of you who had good experiences during & after the SCT.
And I do believe, as you & Lori said, that once you’re admitted to the hospital, you kinda breathe a sigh of relief. It’s just all this anticipation that’s killing me. I actually had a therapist years ago who suggested naming things you see, hear & smell, I had forgotten all about that! Thanks for suggesting that.
So - moving forward, you all have helped me so much today. I was putting off starting to pack some things for the hospital stay, bc that would make it all too real. But now I’m ready to do those things & feel much much less anxious.
Thank you! 💜

REPLY
Profile picture for katgob
katgob | @katgob | 22 hours ago
In reply to @deb913 "Hi Diane - I am 61 and 9 months post allogeneic stem cell transplant for eosinophilic..." + (show)
Profile picture for deb913 @deb913

Hi Diane -
I am 61 and 9 months post allogeneic stem cell transplant for eosinophilic leukemia. I am also a nurse so I know how we can overanalyze all options and it can feel overwhelming. Making the decision to move forward with the sct was very difficult for me because I felt really good and my cancer was staying under control with a chemo pill called Jakifi.

The reasons why I decided to go through with it instead of watching and waiting:
1. You actually get the best possible outcome when you have the lowest disease burden and are in otherwise good health. For myself I have also had Lupus (SLE) and HLH (rare and serious immune condition that acts up with no warning).
2. I considered that if I had a serious Lupus flare or HLH flare then I would be really sick and in recovery for months and if my cancer also decided to act up and I then "needed" the sct, I might not be able to do it or certainly it would be riskier.
3. It was a matter of when not if I needed to have a transplant - so like you it is just a timing question - from what you said, it sounds like you will need it as some point. So the question we asked ourselves was what do we gain if we wait - the answer for us was months or maybe a year of feeling pretty good and living our life versus doing the transplant soon when I had a very low disease burden (only 1% cancer cells vs 37% when I started jakifi) and my lupus and HLH were quiet.

Before my transplant I also wrote into this group because I was so scared to move forward, so I absolutely know the feeling of being so scared to move forward. It's a risky procedure and it's scary the more you research it (so stop researching it lol). But for me at the time, I decided to move forward because I had to hope that I would do best with my low disease burden and was relatively healthy otherwise.

My recovery (except for persistent fatigue) has been better than average and I'm very glad I did not wait. In hospital I only had nausea and fatigue not all the other things you hear about, and I have had no GVHD. I mention all this because I am usually the one who gets the rare and bad outcomes, so if I can have a good outcome I feel like it's possible for anyone.

Also want to add, here are some things I did in the days and months before transplant that helped with anxiety and made me feel better about proceeding:
1. Get a good online therapist. Also consider natural supplements, teas or prescription stress relievers.
2. Baths and walks were a great stress relievers. Also for immediate stress relief - a)name 4 things. you see - like red sign, green grass, black car, whatever b)3 things you hear c) 2 things you smell. This short circuits the stress response and helped me to not burst into tears - lol usually I only had to do the "things I see" part and I felt better.
3. Have a couple of friends you can call to vent about your fears.
4. Have a get together with friends and family so you get to see all the people who are important to you.
5. Take a wonderful trip if you have time.
6. I also found a book called Radical Hope very uplifting because it emphasizes that people with tough cancer diagnoses are recovering all the time and gives tips to try, without being overwhelming.
7. I will also tell you that on the day I was admitted when the central line was put in a calm feeling came over me and my anxiety (which was very high) vanished upon admission. I wish this for you and there is a good chance you will feel this way because the sct staff are so knowledgeable and watch you so closely that you will feel very well taken care of.

I hope this helps. You've got this Diane!

My very best to you,
Deb

Jump to this post

Deb has said it. The absolute skill in the transplant unit is amazing. Right now, I am getting the chills. I cannot believe I am day 490 after transplant.
Never for a moment was i left and even in the middle of the night when my vital machine buzzed a nurse was there. The DR team who was there every day for updates from me and to give their updates on my progress. I would ask my nurses how long they have worked in this department, and they would say years. I asked the best of the PA's how he loves his job. He has been in transplants for years. At COH it is Floor 6, the transplant floor.
My brother was my family who visited. He meant the world to me to take the time to come visit and do my laundry.
All that Deb and Lori will say is so right. I have a tight band of ladies i shared with and Lori and others here on Mayo gave me the low down on my journey with a BMT.
A day at a time all things are possible. Acceptance to go on this BMT journey is yours.

REPLY
1 reply
Profile picture for deb913
deb913 | @deb913 | 23 hours ago
In reply to @drawlings0803 "Excellent advice - I needed to hear this today! I have officially told my nurse self..." + (show)
Profile picture for drawlings0803 @drawlings0803

Excellent advice - I needed to hear this today! I have officially told my nurse self to sit down & be quiet. And you know, I had never looked at all those health issues I’d been having as signs I needed the SCT! I mean, it’s so obvious looking back on it!
I had breast cancer, too, 17 years ago. Dr said my MDS is ‘secondary’, meaning the chemo & radiation I had for BC most likely caused the MDS. But who really knows & at this point, what difference does it make? It is what it is.
Like you, I had very few side effects from the BC chemo & radiation. And I tolerated the Dacogen this year well. So I’m hoping, with a positive attitude, the side effects from this procedure will be well tolerated.
I feel better today thanks to you & everyone on this blog. So good to know y’all are here.

Jump to this post

Hi Diane -
I am 61 and 9 months post allogeneic stem cell transplant for eosinophilic leukemia. I am also a nurse so I know how we can overanalyze all options and it can feel overwhelming. Making the decision to move forward with the sct was very difficult for me because I felt really good and my cancer was staying under control with a chemo pill called Jakifi.

The reasons why I decided to go through with it instead of watching and waiting:
1. You actually get the best possible outcome when you have the lowest disease burden and are in otherwise good health. For myself I have also had Lupus (SLE) and HLH (rare and serious immune condition that acts up with no warning).
2. I considered that if I had a serious Lupus flare or HLH flare then I would be really sick and in recovery for months and if my cancer also decided to act up and I then "needed" the sct, I might not be able to do it or certainly it would be riskier.
3. It was a matter of when not if I needed to have a transplant - so like you it is just a timing question - from what you said, it sounds like you will need it as some point. So the question we asked ourselves was what do we gain if we wait - the answer for us was months or maybe a year of feeling pretty good and living our life versus doing the transplant soon when I had a very low disease burden (only 1% cancer cells vs 37% when I started jakifi) and my lupus and HLH were quiet.

Before my transplant I also wrote into this group because I was so scared to move forward, so I absolutely know the feeling of being so scared to move forward. It's a risky procedure and it's scary the more you research it (so stop researching it lol). But for me at the time, I decided to move forward because I had to hope that I would do best with my low disease burden and was relatively healthy otherwise.

My recovery (except for persistent fatigue) has been better than average and I'm very glad I did not wait. In hospital I only had nausea and fatigue not all the other things you hear about, and I have had no GVHD. I mention all this because I am usually the one who gets the rare and bad outcomes, so if I can have a good outcome I feel like it's possible for anyone.

Also want to add, here are some things I did in the days and months before transplant that helped with anxiety and made me feel better about proceeding:
1. Get a good online therapist. Also consider natural supplements, teas or prescription stress relievers.
2. Baths and walks were a great stress relievers. Also for immediate stress relief - a)name 4 things. you see - like red sign, green grass, black car, whatever b)3 things you hear c) 2 things you smell. This short circuits the stress response and helped me to not burst into tears - lol usually I only had to do the "things I see" part and I felt better.
3. Have a couple of friends you can call to vent about your fears.
4. Have a get together with friends and family so you get to see all the people who are important to you.
5. Take a wonderful trip if you have time.
6. I also found a book called Radical Hope very uplifting because it emphasizes that people with tough cancer diagnoses are recovering all the time and gives tips to try, without being overwhelming.
7. I will also tell you that on the day I was admitted when the central line was put in a calm feeling came over me and my anxiety (which was very high) vanished upon admission. I wish this for you and there is a good chance you will feel this way because the sct staff are so knowledgeable and watch you so closely that you will feel very well taken care of.

I hope this helps. You've got this Diane!

My very best to you,
Deb

REPLY
2 replies
Profile picture for drawlings0803
drawlings0803 | @drawlings0803 | 1 day ago
In reply to @katgob "Diane, Oh my....go through with it. Our minds can play games with us. I m a..." + (show)
Profile picture for katgob @katgob

Diane,
Oh my....go through with it. Our minds can play games with us. I m a nurse, i will know when it is time!! I say tell that little lady to take a nap. You wrote all the reasons it is a good reason to go.

For me, a BMB is my body telling me what the blood looks like coursing through my veins. How else would we know about blasts!! A blood infection. Not getting through a Nordstroms shopping spree. Those are all the bodies clues.
I was diagnosed low to medium. My hematologists gave me a way to look at it. Six Kathys have MDS, with no treatment 3 could be dead in less that 5 years. the other three have varying spans of time left. Noone knows. Yikes!! Did i want to watch and wait!!! I already knew i had Brca2 and a TP53 mutation. Would i be one who gets to glide along with some issues here and there?
Why do they think a BMT is right for you? I have learned that when i have a test it is summed up in a report to me in my portal. The Dr gets more in his report in medical details. April 9, 2024, was my transplant. The side effects i have are mostly the same ones from the chemo from my breast cancer.
I had a 10/10donor. You have a supportive husband and family. Ask the nurse in you to take a seat, because the patient Diane needs to do what she feels is right. Your body and your choice.

Jump to this post

Excellent advice - I needed to hear this today! I have officially told my nurse self to sit down & be quiet. And you know, I had never looked at all those health issues I’d been having as signs I needed the SCT! I mean, it’s so obvious looking back on it!
I had breast cancer, too, 17 years ago. Dr said my MDS is ‘secondary’, meaning the chemo & radiation I had for BC most likely caused the MDS. But who really knows & at this point, what difference does it make? It is what it is.
Like you, I had very few side effects from the BC chemo & radiation. And I tolerated the Dacogen this year well. So I’m hoping, with a positive attitude, the side effects from this procedure will be well tolerated.
I feel better today thanks to you & everyone on this blog. So good to know y’all are here.

REPLY
1 reply
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Mentor
Lori, Volunteer Mentor | @loribmt | 1 day ago
In reply to @anitasharma "Hello Guys @loribmt and @katgob I hope you all are enjoying your daily routine as usual..." + (show)
Profile picture for anitasharma @anitasharma

Hello Guys
@loribmt and @katgob
I hope you all are enjoying your daily routine as usual .
Well I am here after such a busy schedule as a Caregiver for my husband who has recently done with BMT on Dated April 29,2025.
He was discharged on May 25,2025 and shifted to nearby BMT Apartment .Everything looks like dream as we come a long way .Its Day +57 and he is doing quite well ,eating and drinking almost getting better day by day .no more Vomiting ,nausea and Pain now. Doctors called him 2 days a week for follow-up and further medications change. He is too excited for his parents coming this weekends from India to meet him after 3 years .Another good news is that we have received our Permanent Residency here yesterday only , I thot to share with you all.
He is taking all his medicines very positively as per Doctors Prescriptions . My kids will be moving soon there to see him after their Summer Holidays starting from Tomorrow.
I would like to thanks each one of you for your knowledge encouragements and answers for all my queries so patiently . Have a faith in God and Believing yourself and off course good treatment ,Doctors and family like friends we all will achieve it one day. So never disappoint just Fight for it and you will win .
Thanks so so much !
This is a good platform to express to ask to learn and to share .
I am amazed to have you all over here for each other.
Take care Be Happy and Healthy.

Jump to this post

Hi @anitasharma I’ve been thinking about you lately and curious to see how your husband’s recovery is coming along. I’m hoping all is well and that you’ve all been able to enjoy the reunion with your children and his parents after the long absence!
Recovery from his bone marrow transplant, at this point, should just be a matter of slow, steady gains in stamina and re-entry into a more normal life again. You’ve all certainly had a tumulus year and I’m sure you’re ready to get back to feeling more in control without all the medical drama. ☺️
When you get a chance, I’d love to see an update!

REPLY
Profile picture for katgob
katgob | @katgob | 1 day ago

Diane,
Oh my....go through with it. Our minds can play games with us. I m a nurse, i will know when it is time!! I say tell that little lady to take a nap. You wrote all the reasons it is a good reason to go.

For me, a BMB is my body telling me what the blood looks like coursing through my veins. How else would we know about blasts!! A blood infection. Not getting through a Nordstroms shopping spree. Those are all the bodies clues.
I was diagnosed low to medium. My hematologists gave me a way to look at it. Six Kathys have MDS, with no treatment 3 could be dead in less that 5 years. the other three have varying spans of time left. Noone knows. Yikes!! Did i want to watch and wait!!! I already knew i had Brca2 and a TP53 mutation. Would i be one who gets to glide along with some issues here and there?
Why do they think a BMT is right for you? I have learned that when i have a test it is summed up in a report to me in my portal. The Dr gets more in his report in medical details. April 9, 2024, was my transplant. The side effects i have are mostly the same ones from the chemo from my breast cancer.
I had a 10/10donor. You have a supportive husband and family. Ask the nurse in you to take a seat, because the patient Diane needs to do what she feels is right. Your body and your choice.

REPLY
1 reply
Profile picture for drawlings0803
drawlings0803 | @drawlings0803 | 1 day ago

Hi friends. I have MDS B2 & plans are for me to be admitted to the hospital (Houston Methodist) this coming Friday. I have done 4 rounds of Dacogen. My third BMB on July 23 showed no mutations, < 1% blasts and overall good, regenerative bone marrow.
I have not been well since the first of the year, maybe longer. I’m 71, have always been active, worked out, etc. But even though I’m an RN, I was in denial anything was wrong with me. 😂. I mean, at one point early on I couldn’t walk through Nordstrom’s without getting short of breath & having to sit down!
Anyway, after I declined one oncologist’s suggestion to get a BMB, an adrenal issue put me in the hospital. A different, very sweet hematologist there talked me into getting the BMB. And that’s when the MDS was diagnosed.
On March 31 I started the Dacogen after meeting a new hematologist at Methodist. Mid April I acquired a blood infection & was hospitalized for 13 days.
So now, after a 10 out of 10 donor was found, I’m ready to get on the implant roller coaster.
I wonder how many of you found yourselves with mixed emotions about it. I’m having many mood swings, days when I’m okay & days when I’m weepy. I’m very blessed that I have options AND a wonderful donor, wonderful husband & family support. I guess I’m just scared, wondering if I should go through with it, should I just go with chemo, etc. Have been praying a lot, & that helps. Looking back on the past 8 months, I feel God has led me this far, so….
Thanks for listening!
Diane

REPLY
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katgob | @katgob | 4 days ago

I finally easily found the trial i was in to prevent Graft vs Host disease.

*****Adding Itacitinib to Cyclophosphamide and Tacrolimus for the Prevention of Graft Versus Host Disease in Patients Undergoing Hematopoietic Stem Cell Transplants****

Sometimes i want to say i only had MDS and not AML, but i know all have their own challenges. Today I wanted to say i did that for GVHD i did not stress about. Being asked to participate in the study above might be just why i have not had any GVHD at 484 days past transplant. Why for today it is not on my mind.
Once i hit 1 year, that is where active surveillance ends. Survivorship tests have all been done. Some follow ups through the year and in 1year another set of survivorship tests.

I hope we get some follow ups above. This journey is so much better when you have the support of all of us who have had BMT's.

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