1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy
Mentor

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.

Mentor
Lori, Volunteer Mentor | @loribmt | Apr 26 7:25am
In reply to @caregiverx2 "@loribmt The transplant probably won't be until August. We are in the very first days of..." + (show)
@caregiverx2

@loribmt
The transplant probably won't be until August. We are in the very first days of searching for a donor. He has a son and a niece who said they want to be tested. Monday, he will go back into the hospital for his second round of chemo. The first one was very rough on his kidneys, and they had to back off on treatment for a while until his kidneys could recover. We are taking this weekend to go hang out with the grandkids and take a break from all of this for a few days. We have only just begun this journey.

Jump to this post

Taking a break from all this medical drama for a few days is a really great idea. It recharges the soul and helps both you and your husband to have a little bit of normalcy in your disrupted world. Keeping in mind that your husband is still immunocompromised, so it’s important that he mask up if there’s close contact and keep hand sanitizer nearby. I know…I’m a nag. 😉

It’s encouraging that your husband’s first round of chemo was successful in having him reach MRD. The second round, consolidation, is like a cleanup to ‘sweep’ the system. His doctor may suggest subsequent chemo rounds (consolidation) every 28 days to ensure that your husband goes into the transplant as clean as possible. They’ll be watching his kidneys closely. In my case it was my liver.

Encourage your husband to drink plenty of water to keep the body flushed. He may not prefer it, but room temperature water goes down a lot easier than ice water. It’s also utilized by the body more efficiently as ice water can constrict the blood vessels.

Regarding donors, if family members don’t pan out for a donor, don’t fret. There’s an international registry that Mayo uses to secure donors. Though my daughter was a half-match, an unrelated donor matched my HLA markers 10/10.

As you can see, you’ve just gained a new family here in Connect. Don’t hesitate to reach out through the journey. It’s a familiar trail to us but you’re just taking your first steps.
Enjoy the weekend and let me know how this 2nd round goes, ok?

REPLY
caregiverx2 | @caregiverx2 | Apr 25 9:07pm
In reply to @alive "That’s a tough diagnosis! I had acute myeloid leukemia 8 years ago and had my stem..." + (show)
@alive

That’s a tough diagnosis! I had acute myeloid leukemia 8 years ago and had my stem cell transplant 5 months later. My donor was found in Germany. Recovery after SCT is rough but so well worth it! I also had a number of complications including GVHD, but I am now leading a full life. I have been working full time for the last 5,5 years. I still live with some limitations due to leukemia, chemotherapy and SCT, but I am very glad I received my transplant. I wouldn’t be here without it.

Let me know if you have any specific questions about SCT or the recovery from it.

Jump to this post

@alive

Thank you for your encouragement, support, and hope. I needed it.

REPLY
caregiverx2 | @caregiverx2 | Apr 25 9:04pm
In reply to @loribmt "It’s great you live an hour away. I’m assuming the programs for Mayo Jacksonville is similar..." + (show)
@loribmt

It’s great you live an hour away. I’m assuming the programs for Mayo Jacksonville is similar to Rochester. If so, your husband will most likely be required to be within 30 minutes of the clinic for about 100 days.
I know this all sounds so daunting and frightening. While I agree with you about wanting to learn as much about this process as you can, my suggestion is to limit your searches online. So much of the information may never even apply to your husband’s situation and it only serves to heighten the anxiety for both of you. It will be important to trust your husband’s transplant team for guidance as they will become his and your new family for years to come. I was told by my doctor and team repeatedly, that “we are married for life”. And they mean it.

I’m just coming up on my 5th rebirthday. While I joke that it’s ’no walk on the beach’ this life giving procedure is well worth the effort. I had AML, acute myeloid leukemia and had no other option for remission than to have this transplant. I was 65 at the time. Now 70 and feeling like nothing ever happened. I have unlimited energy, healthy and very active. My donor was 20 and I swear he gave me the fountain of youth. So, let’s get you and your husband through this too so you can get on with your lives!

When will he be having the transplant? Does he have a donor? What are your specific questions?

Jump to this post

@loribmt
The transplant probably won't be until August. We are in the very first days of searching for a donor. He has a son and a niece who said they want to be tested. Monday, he will go back into the hospital for his second round of chemo. The first one was very rough on his kidneys, and they had to back off on treatment for a while until his kidneys could recover. We are taking this weekend to go hang out with the grandkids and take a break from all of this for a few days. We have only just begun this journey.

REPLY
1 reply
alive | @alive | Apr 25 8:39am
In reply to @caregiverx2 "Forty-four days ago, my husband and I went to see his primary care physician. My husband..." + (show)
@caregiverx2

Forty-four days ago, my husband and I went to see his primary care physician. My husband presented to his doctor that he needed a heart stint. His self-diagnosis was based on his shortness of breath and other people's heart stint stories. His primary care doctor didn't say much except, "Go to the emergency room now." So, we left the doctor's office drove past three other hospitals and went to Mayo Clinic's emergency room. Looking back, that was the best decision we made. Because, boy, that diagnosis wasn't even close! The ER doctor told us his heart was fine but something "weird" was going on with his blood.

I now know that Leukemia is not just one disease but an umbrella term for blood cancer. His official diagnosis is B-Cell Acute Lymphoblastic Leukemia with low hypodiploidy. He developed TLS (Tumor Lysis Syndrome) immediately after starting his first round of chemo. That was so much fun, not. The good news is he has reached MRD, his kidneys are recovering, and his immune system is good right now. The bad news is this is a rare B-ALL and the prognosis isn't good. So, Monday, he will start the second round of Chemo and the search is on for bone marrow donors so he can have a SCT.

I have begun my arduous research on HSCT and what to expect. It sounds like a tough road is ahead for both of us. I am not new to caregiving. I spent the last 4 years taking care of my sister who had ALS. I did everything for her. It was an exhausting journey. Her funeral was less than a month before my husband's diagnosis. I was just starting to take care of myself again. And now, here we go again.

If anyone has any advice or information that might help me get through this, please let me know. I am glad I found this message board because I do not want to put this out on my personal social media. It is nice to know that I am not alone.

Jump to this post

That’s a tough diagnosis! I had acute myeloid leukemia 8 years ago and had my stem cell transplant 5 months later. My donor was found in Germany. Recovery after SCT is rough but so well worth it! I also had a number of complications including GVHD, but I am now leading a full life. I have been working full time for the last 5,5 years. I still live with some limitations due to leukemia, chemotherapy and SCT, but I am very glad I received my transplant. I wouldn’t be here without it.

Let me know if you have any specific questions about SCT or the recovery from it.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Apr 25 7:57am
In reply to @caregiverx2 "Lori, Thank you for the welcome. This is all so scary. We are at Mayo Jacksonville..." + (show)
@caregiverx2

Lori,

Thank you for the welcome. This is all so scary. We are at Mayo Jacksonville Florida. We are fortunate to only live less than an hour from the hospital (if traffic is good).

Jump to this post

It’s great you live an hour away. I’m assuming the programs for Mayo Jacksonville is similar to Rochester. If so, your husband will most likely be required to be within 30 minutes of the clinic for about 100 days.
I know this all sounds so daunting and frightening. While I agree with you about wanting to learn as much about this process as you can, my suggestion is to limit your searches online. So much of the information may never even apply to your husband’s situation and it only serves to heighten the anxiety for both of you. It will be important to trust your husband’s transplant team for guidance as they will become his and your new family for years to come. I was told by my doctor and team repeatedly, that “we are married for life”. And they mean it.

I’m just coming up on my 5th rebirthday. While I joke that it’s ’no walk on the beach’ this life giving procedure is well worth the effort. I had AML, acute myeloid leukemia and had no other option for remission than to have this transplant. I was 65 at the time. Now 70 and feeling like nothing ever happened. I have unlimited energy, healthy and very active. My donor was 20 and I swear he gave me the fountain of youth. So, let’s get you and your husband through this too so you can get on with your lives!

When will he be having the transplant? Does he have a donor? What are your specific questions?

REPLY
1 reply
kt2013 | @kt2013 | Apr 25 7:41am
In reply to @caregiverx2 "Forty-four days ago, my husband and I went to see his primary care physician. My husband..." + (show)
@caregiverx2

Forty-four days ago, my husband and I went to see his primary care physician. My husband presented to his doctor that he needed a heart stint. His self-diagnosis was based on his shortness of breath and other people's heart stint stories. His primary care doctor didn't say much except, "Go to the emergency room now." So, we left the doctor's office drove past three other hospitals and went to Mayo Clinic's emergency room. Looking back, that was the best decision we made. Because, boy, that diagnosis wasn't even close! The ER doctor told us his heart was fine but something "weird" was going on with his blood.

I now know that Leukemia is not just one disease but an umbrella term for blood cancer. His official diagnosis is B-Cell Acute Lymphoblastic Leukemia with low hypodiploidy. He developed TLS (Tumor Lysis Syndrome) immediately after starting his first round of chemo. That was so much fun, not. The good news is he has reached MRD, his kidneys are recovering, and his immune system is good right now. The bad news is this is a rare B-ALL and the prognosis isn't good. So, Monday, he will start the second round of Chemo and the search is on for bone marrow donors so he can have a SCT.

I have begun my arduous research on HSCT and what to expect. It sounds like a tough road is ahead for both of us. I am not new to caregiving. I spent the last 4 years taking care of my sister who had ALS. I did everything for her. It was an exhausting journey. Her funeral was less than a month before my husband's diagnosis. I was just starting to take care of myself again. And now, here we go again.

If anyone has any advice or information that might help me get through this, please let me know. I am glad I found this message board because I do not want to put this out on my personal social media. It is nice to know that I am not alone.

Jump to this post

Dear Caregiverx2, welcome to the “family”. I am an 11 year survivor of acute myelocytic leukemia (AML) and peripheral stem cell transplant from my sister. I was cared for by Mayo Clinic, so I think you are at the best medical center in the world.
Here are a few things I learned on my journey…
I also thought I needed to research and educate myself on all things about the disease and treatment. What I discovered was it was too overwhelming and I needed to trust that the Mayo team would provide me with the education I would need, based on my cancer and planned treatment. The internet wasn’t a good place for me to hang out, it made me worry more and it was exhausting to try and sort out what applied to me and what didn’t.
Another important lesson for me was to stay in the day. Again, as a world-class worrier, it tried to control what was not within my control. So, I learned to breath through the tough days, then lock them in a closet. And to celebrate every day, good or bad. Being a woman of faith, I leaned into that like never before. And in this, asking for strength and guidance to face each new challenge.
Mayo health care team members were with me every step and that made my path easier and the challenge manageable.
I hope my words will bring you comfort and know that I will keep you and your husband in thought and prayers.
Sending you a sunny day….
REPLY
caregiverx2 | @caregiverx2 | Apr 25 7:32am
In reply to @loribmt "Hi @caregiverx2 I’d like to add my welcome along with @becsbuddy. She tagged me in this..." + (show)
@loribmt

Hi @caregiverx2 I’d like to add my welcome along with @becsbuddy. She tagged me in this conversation because I also had an Allogenic stem-cell transplant, along with several other members. We have a lively, ongoing discussion where you’ll be able to get a ton of information to help navigate you through this journey with your husband…everything from lodging, what to bring for a 3 month stay, how to stay healthy, etc…no subject to big or two small to answer! We have your back.

I’d going to ask our moderator to merge your discussion into this group, which Becky mentioned:
My Bone Marrow Transplant Story; Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
You’ll meet members, @alive @edb1123 @kt2013. jenmkr63 timt347
@jrwilli @katgob and others who have either had a transplant or are caregivers.
Will he be having this done in Mayo Rochester?

Jump to this post

Lori,

Thank you for the welcome. This is all so scary. We are at Mayo Jacksonville Florida. We are fortunate to only live less than an hour from the hospital (if traffic is good).

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Apr 25 6:41am
In reply to @caregiverx2 "Forty-four days ago, my husband and I went to see his primary care physician. My husband..." + (show)
@caregiverx2

Forty-four days ago, my husband and I went to see his primary care physician. My husband presented to his doctor that he needed a heart stint. His self-diagnosis was based on his shortness of breath and other people's heart stint stories. His primary care doctor didn't say much except, "Go to the emergency room now." So, we left the doctor's office drove past three other hospitals and went to Mayo Clinic's emergency room. Looking back, that was the best decision we made. Because, boy, that diagnosis wasn't even close! The ER doctor told us his heart was fine but something "weird" was going on with his blood.

I now know that Leukemia is not just one disease but an umbrella term for blood cancer. His official diagnosis is B-Cell Acute Lymphoblastic Leukemia with low hypodiploidy. He developed TLS (Tumor Lysis Syndrome) immediately after starting his first round of chemo. That was so much fun, not. The good news is he has reached MRD, his kidneys are recovering, and his immune system is good right now. The bad news is this is a rare B-ALL and the prognosis isn't good. So, Monday, he will start the second round of Chemo and the search is on for bone marrow donors so he can have a SCT.

I have begun my arduous research on HSCT and what to expect. It sounds like a tough road is ahead for both of us. I am not new to caregiving. I spent the last 4 years taking care of my sister who had ALS. I did everything for her. It was an exhausting journey. Her funeral was less than a month before my husband's diagnosis. I was just starting to take care of myself again. And now, here we go again.

If anyone has any advice or information that might help me get through this, please let me know. I am glad I found this message board because I do not want to put this out on my personal social media. It is nice to know that I am not alone.

Jump to this post

Hi @caregiverx2 I’d like to add my welcome along with @becsbuddy. She tagged me in this conversation because I also had an Allogenic stem-cell transplant, along with several other members. We have a lively, ongoing discussion where you’ll be able to get a ton of information to help navigate you through this journey with your husband…everything from lodging, what to bring for a 3 month stay, how to stay healthy, etc…no subject to big or two small to answer! We have your back.

I’d going to ask our moderator to merge your discussion into this group, which Becky mentioned:
My Bone Marrow Transplant Story; Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
You’ll meet members, @alive @edb1123 @kt2013. jenmkr63 timt347
@jrwilli @katgob and others who have either had a transplant or are caregivers.
Will he be having this done in Mayo Rochester?

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 24 8:55pm
In reply to @caregiverx2 "Forty-four days ago, my husband and I went to see his primary care physician. My husband..." + (show)
@caregiverx2

Forty-four days ago, my husband and I went to see his primary care physician. My husband presented to his doctor that he needed a heart stint. His self-diagnosis was based on his shortness of breath and other people's heart stint stories. His primary care doctor didn't say much except, "Go to the emergency room now." So, we left the doctor's office drove past three other hospitals and went to Mayo Clinic's emergency room. Looking back, that was the best decision we made. Because, boy, that diagnosis wasn't even close! The ER doctor told us his heart was fine but something "weird" was going on with his blood.

I now know that Leukemia is not just one disease but an umbrella term for blood cancer. His official diagnosis is B-Cell Acute Lymphoblastic Leukemia with low hypodiploidy. He developed TLS (Tumor Lysis Syndrome) immediately after starting his first round of chemo. That was so much fun, not. The good news is he has reached MRD, his kidneys are recovering, and his immune system is good right now. The bad news is this is a rare B-ALL and the prognosis isn't good. So, Monday, he will start the second round of Chemo and the search is on for bone marrow donors so he can have a SCT.

I have begun my arduous research on HSCT and what to expect. It sounds like a tough road is ahead for both of us. I am not new to caregiving. I spent the last 4 years taking care of my sister who had ALS. I did everything for her. It was an exhausting journey. Her funeral was less than a month before my husband's diagnosis. I was just starting to take care of myself again. And now, here we go again.

If anyone has any advice or information that might help me get through this, please let me know. I am glad I found this message board because I do not want to put this out on my personal social media. It is nice to know that I am not alone.

Jump to this post

@caregiverx2 Welcome to Mayo Clinic Connect! I’m so glad you found this site especially given your reluctance to use social media. I’ve posted 2 discussions for you to check out. One is for caregiver advice
https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/
And this one is about the journey. It was started by @loribmt who is a mentor for Mayo Connect. She is great at answering your questions!
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
I hope this will be a good start for you. Please feel free to ask any questions you have! BTW, how did you find Mayo Connect?

REPLY
caregiverx2 | @caregiverx2 | Apr 24 7:08pm

Forty-four days ago, my husband and I went to see his primary care physician. My husband presented to his doctor that he needed a heart stint. His self-diagnosis was based on his shortness of breath and other people's heart stint stories. His primary care doctor didn't say much except, "Go to the emergency room now." So, we left the doctor's office drove past three other hospitals and went to Mayo Clinic's emergency room. Looking back, that was the best decision we made. Because, boy, that diagnosis wasn't even close! The ER doctor told us his heart was fine but something "weird" was going on with his blood.

I now know that Leukemia is not just one disease but an umbrella term for blood cancer. His official diagnosis is B-Cell Acute Lymphoblastic Leukemia with low hypodiploidy. He developed TLS (Tumor Lysis Syndrome) immediately after starting his first round of chemo. That was so much fun, not. The good news is he has reached MRD, his kidneys are recovering, and his immune system is good right now. The bad news is this is a rare B-ALL and the prognosis isn't good. So, Monday, he will start the second round of Chemo and the search is on for bone marrow donors so he can have a SCT.

I have begun my arduous research on HSCT and what to expect. It sounds like a tough road is ahead for both of us. I am not new to caregiving. I spent the last 4 years taking care of my sister who had ALS. I did everything for her. It was an exhausting journey. Her funeral was less than a month before my husband's diagnosis. I was just starting to take care of myself again. And now, here we go again.

If anyone has any advice or information that might help me get through this, please let me know. I am glad I found this message board because I do not want to put this out on my personal social media. It is nice to know that I am not alone.

REPLY
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