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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katgob | @katgob | 4 days ago
In reply to @g4c "@katgob So very sorry for you and your family. Hugs" + (show)
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@katgob
So very sorry for you and your family. Hugs

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@g4c
Thank you. It is a tough time for her 38-year-old autistic son. My sister took care of him and never told us he likely has autism. She had secrets. This family one too. Three of my sisters 4 siblings spent time since Monday. My nephew needed time with his dad. Sadly, is Dad had spoken with his son about moving to Indiana. Too soon. He just lost his mom and this house has so much of his mom in every nook and cranny.
Prayers for my nephew I have said as his comfort must know come from his dad. His Dad not like his mom hardly at all.

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Lori, Volunteer Mentor | @loribmt | 4 days ago
In reply to @golfer0744 "I was treated at MD Anderson for my Mantle Cell Lymohoma and they saved my life...." + (show)
Profile picture for golfer0744 @golfer0744

I was treated at MD Anderson for my Mantle Cell Lymohoma and they saved my life. I was misdiagnoses at my home in Mandeville, La. and went to see the doctor that was treating my brother. He retested me and we began a treatment plan that has kept me alive and well for years. I'll be 82 this July.

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Hi @golfer0744 Welcome to Connect! Getting the right diagnosis is critical for receiving the proper treatment. You’re living proof of that! Sometimes we have to be our own advocates and I’m relieved you kept seeking answers by going to your brother’s doctor.

What was your treatment plan for Mantle Cell Lymphoma? If you don’t mind sharing, what was your brother being treated for? Did he also have lymphoma?

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golfer0744 | @golfer0744 | 4 days ago

I was treated at MD Anderson for my Mantle Cell Lymohoma and they saved my life. I was misdiagnoses at my home in Mandeville, La. and went to see the doctor that was treating my brother. He retested me and we began a treatment plan that has kept me alive and well for years. I'll be 82 this July.

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1 reply
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g4c | @g4c | 5 days ago
In reply to @katgob "To all my fellows here, I know i need to share. Many of you may know..." + (show)
Profile picture for katgob @katgob

To all my fellows here, I know i need to share. Many of you may know my story of my sister. She is my older sister by 2 years. When i got my diagnosis of breast cancer, she covered her ears when i said i was getting a double mastectomy. I took a genetic test at the City of Hope and was found to have BRCA2 and another mutation with unknown significance. Later it would turn out to be a TP53 mutation and a 5Q deletion taking me to my bone marrow transplant in April of 2024.
I received a family letter in August of 2021. All 4 of my siblings got it. Yesterday i found out that my brother who had worked at the COH never got tested. My older sister chose not to either. My other 2 siblings tested, and both had the mutations i did. By brother told me yesterday he is going to be tested.
My sister called me two years ago crying, she was diagnosed with ovarian cancer. By this time both her sisters had their ovaries and fallopian tubes removed. I asked her to please go to COH and see Dr. Lee. She did and at the start she was grateful. But she turned a corner. She did not like her assigned oncologist. Did not trust he listened to her. She had a complete hysterectomy with Dr. Lee, but sad to say she sought out functional medicine plans and other treatments she researched. With her husband's urging in 2024 she returned to conventional treatments. Sadly, she had GI issues, intestinal blockages and more in the last year. Never, ever did she give her siblings the whole truth. I have spent much of the last few months visiting her in hospitals. Sitting with her to support her but knowing it was not good. Finally last Thursday she got a a different hospital that is a "trauma" hospital. She passed away late yesterday. Her body could no longer keep her oxygen levels up. I had been keeping my brothers informed and my younger sister had come from NY. By my sisters passing we all were with her. The day before she was more like herself then she had been for months as i had seen her. God's grace.
My sister was private. I do not know any site like this she participated in although I told her about it, i am not sure she has looked at this one or any other.
Even up till her very last day she was checking how we were. 68 years old.

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@katgob
So very sorry for you and your family. Hugs

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alive | @alive | 6 days ago
In reply to @katgob "Lori, Thank you. I tried to let her know, yet i could never get her to..." + (show)
Profile picture for katgob @katgob

Lori,

Thank you. I tried to let her know, yet i could never get her to follow besides the original diagnosis. The estrangement between my younger brother and sister was lightened while sending my sisters spirit to heaven. All siblings were with my past away sister knowing we were now 4 instead of five. The last of the 4 of us plans to get the genetic test. I tried not to bring up my sister's choices, but i thanked the whole nursing staff and the unique respiratory therapist who worked with my sister Saturday night. My sister laughed some and followed nearly every exercise he offered. None of them saw Friday as being the day she would pass. My sisters body says now. No oxygen, no life.

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@katgob That’s such a sad story! I am sorry for your loss. Reading it, I was reminded of my own sister, who was diagnosed with stage 2 breast cancer shortly after my AML diagnosis 10 years ago. She told me that watching me go through chemo and transplant convinced her to pursue alternative treatments. She died 3 years later. It was heartbreaking to watch her die while I had recovered so well from my cancer. I am still struggling to understand why she chose that path. Ultimately, it was her decision to distrust her doctors and patch her own alternative health plan. I will always miss her.

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mary612 | @mary612 | Jun 2 7:15am
In reply to @katgob "To all my fellows here, I know i need to share. Many of you may know..." + (show)
Profile picture for katgob @katgob

To all my fellows here, I know i need to share. Many of you may know my story of my sister. She is my older sister by 2 years. When i got my diagnosis of breast cancer, she covered her ears when i said i was getting a double mastectomy. I took a genetic test at the City of Hope and was found to have BRCA2 and another mutation with unknown significance. Later it would turn out to be a TP53 mutation and a 5Q deletion taking me to my bone marrow transplant in April of 2024.
I received a family letter in August of 2021. All 4 of my siblings got it. Yesterday i found out that my brother who had worked at the COH never got tested. My older sister chose not to either. My other 2 siblings tested, and both had the mutations i did. By brother told me yesterday he is going to be tested.
My sister called me two years ago crying, she was diagnosed with ovarian cancer. By this time both her sisters had their ovaries and fallopian tubes removed. I asked her to please go to COH and see Dr. Lee. She did and at the start she was grateful. But she turned a corner. She did not like her assigned oncologist. Did not trust he listened to her. She had a complete hysterectomy with Dr. Lee, but sad to say she sought out functional medicine plans and other treatments she researched. With her husband's urging in 2024 she returned to conventional treatments. Sadly, she had GI issues, intestinal blockages and more in the last year. Never, ever did she give her siblings the whole truth. I have spent much of the last few months visiting her in hospitals. Sitting with her to support her but knowing it was not good. Finally last Thursday she got a a different hospital that is a "trauma" hospital. She passed away late yesterday. Her body could no longer keep her oxygen levels up. I had been keeping my brothers informed and my younger sister had come from NY. By my sisters passing we all were with her. The day before she was more like herself then she had been for months as i had seen her. God's grace.
My sister was private. I do not know any site like this she participated in although I told her about it, i am not sure she has looked at this one or any other.
Even up till her very last day she was checking how we were. 68 years old.

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@katgob I am so sorry for your loss and all the anguish over her decisions regarding her health. You did your best with her and you were with her when she needed you most. Sounds like you are taking comfort in the fact that all your siblings were together for her last days and your relationships may continue to heal in time wherever necessary.

Sending strength and hugs.

Mary

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katgob | @katgob | Jun 1 11:05am

Lori,

Thank you. I tried to let her know, yet i could never get her to follow besides the original diagnosis. The estrangement between my younger brother and sister was lightened while sending my sisters spirit to heaven. All siblings were with my past away sister knowing we were now 4 instead of five. The last of the 4 of us plans to get the genetic test. I tried not to bring up my sister's choices, but i thanked the whole nursing staff and the unique respiratory therapist who worked with my sister Saturday night. My sister laughed some and followed nearly every exercise he offered. None of them saw Friday as being the day she would pass. My sisters body says now. No oxygen, no life.

REPLY
1 reply
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Mentor
Lori, Volunteer Mentor | @loribmt | Jun 1 10:41am
In reply to @katgob "To all my fellows here, I know i need to share. Many of you may know..." + (show)
Profile picture for katgob @katgob

To all my fellows here, I know i need to share. Many of you may know my story of my sister. She is my older sister by 2 years. When i got my diagnosis of breast cancer, she covered her ears when i said i was getting a double mastectomy. I took a genetic test at the City of Hope and was found to have BRCA2 and another mutation with unknown significance. Later it would turn out to be a TP53 mutation and a 5Q deletion taking me to my bone marrow transplant in April of 2024.
I received a family letter in August of 2021. All 4 of my siblings got it. Yesterday i found out that my brother who had worked at the COH never got tested. My older sister chose not to either. My other 2 siblings tested, and both had the mutations i did. By brother told me yesterday he is going to be tested.
My sister called me two years ago crying, she was diagnosed with ovarian cancer. By this time both her sisters had their ovaries and fallopian tubes removed. I asked her to please go to COH and see Dr. Lee. She did and at the start she was grateful. But she turned a corner. She did not like her assigned oncologist. Did not trust he listened to her. She had a complete hysterectomy with Dr. Lee, but sad to say she sought out functional medicine plans and other treatments she researched. With her husband's urging in 2024 she returned to conventional treatments. Sadly, she had GI issues, intestinal blockages and more in the last year. Never, ever did she give her siblings the whole truth. I have spent much of the last few months visiting her in hospitals. Sitting with her to support her but knowing it was not good. Finally last Thursday she got a a different hospital that is a "trauma" hospital. She passed away late yesterday. Her body could no longer keep her oxygen levels up. I had been keeping my brothers informed and my younger sister had come from NY. By my sisters passing we all were with her. The day before she was more like herself then she had been for months as i had seen her. God's grace.
My sister was private. I do not know any site like this she participated in although I told her about it, i am not sure she has looked at this one or any other.
Even up till her very last day she was checking how we were. 68 years old.

Jump to this post

@katgob Oh Kat, I’m so sorry for your loss of your sister. She was so young at 68 and I wish the outcome had been different both you and your entire family. I know you struggled with your sister’s decision all along. But after all, it is her decision and ultimately her life. You did the best you could to inform your siblings of the possibility of the mutations inherent in your family. Some people want to know…others choose to forgo the information and do nothing preemptively. I’ve seen this with other families. Some people just don’t want to know!

I am deeply sorry that your sister has passed away. This is a very sad time for you and your siblings to have lost one of you…so many shared memories over a lifetime. It is lovely that you were all able to be together with your sister. Please know that I’m thinking of you and your family as you cope with this loss. Hugs…

REPLY
Profile picture for katgob
katgob | @katgob | Jun 1 10:00am

To all my fellows here, I know i need to share. Many of you may know my story of my sister. She is my older sister by 2 years. When i got my diagnosis of breast cancer, she covered her ears when i said i was getting a double mastectomy. I took a genetic test at the City of Hope and was found to have BRCA2 and another mutation with unknown significance. Later it would turn out to be a TP53 mutation and a 5Q deletion taking me to my bone marrow transplant in April of 2024.
I received a family letter in August of 2021. All 4 of my siblings got it. Yesterday i found out that my brother who had worked at the COH never got tested. My older sister chose not to either. My other 2 siblings tested, and both had the mutations i did. By brother told me yesterday he is going to be tested.
My sister called me two years ago crying, she was diagnosed with ovarian cancer. By this time both her sisters had their ovaries and fallopian tubes removed. I asked her to please go to COH and see Dr. Lee. She did and at the start she was grateful. But she turned a corner. She did not like her assigned oncologist. Did not trust he listened to her. She had a complete hysterectomy with Dr. Lee, but sad to say she sought out functional medicine plans and other treatments she researched. With her husband's urging in 2024 she returned to conventional treatments. Sadly, she had GI issues, intestinal blockages and more in the last year. Never, ever did she give her siblings the whole truth. I have spent much of the last few months visiting her in hospitals. Sitting with her to support her but knowing it was not good. Finally last Thursday she got a a different hospital that is a "trauma" hospital. She passed away late yesterday. Her body could no longer keep her oxygen levels up. I had been keeping my brothers informed and my younger sister had come from NY. By my sisters passing we all were with her. The day before she was more like herself then she had been for months as i had seen her. God's grace.
My sister was private. I do not know any site like this she participated in although I told her about it, i am not sure she has looked at this one or any other.
Even up till her very last day she was checking how we were. 68 years old.

REPLY
3 replies
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katgob | @katgob | May 26 4:20pm
In reply to @loribmt "@gagathemom Hi Wanda, getting ready for this ASCT (autologous stem cell transplant) an feel pretty overwhelming...." + (show)
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@gagathemom Hi Wanda, getting ready for this ASCT (autologous stem cell transplant) an feel pretty overwhelming. Just the logistics alone can feel mind boggling. But somehow, all those pieces just seem to fall into place. For an ASCT, patients usually can assume 3-4 weeks lodging. I know you have a place locked in for 3 weeks. If you need an extension, often landlords in Rochester are pretty flexible….on either end. With extensions and early exits. There are also a ton of hotels nearby that you could relocate to if needed. But by 3 weeks you might get the all-clear to head home. Your SCT team will be able to give you a heads up for an exit projection.
comprehensive about transplants, caregiver information, after care. There are several subject headings.

Not sure if you’ve seen this or not, but here is a good care guide from Mayo for SCT/BMT and CAR=T patients and caregivers. There are several topic headings so take your time to peruse everything that’s relevant from caregivers guide, what to pack, infection control, etc.
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/
Haha, dare I say, “You’ve got this”…😂. Joking aside, as a planner myself I know how we like to have everything nicely sewn up, details in place and nothing left to chance. I had a zillion sticky notes and note pads with lists of items to make our hotel stay a ‘home away from home’.

Here’s a comment posted a while regarding items I packed for my 4 month stay. You might find a few ideas. https://connect.mayoclinic.org/comment/1059221/

Let me know if I can help with anything else! ☺️ What kind of dog do you have?

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@loribmt
I must say with my transplant in April of2024, Lori's lists helped me tremendously. I used the City of Hope's info they gave me and added Lori's. Next to nothing was a surprise. I hope you keep us posted Wanda. I am never happy to see anyone need a BMT, but happy when someone is having one that needs info. It is a life changing procedure.

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