1. < Blood Cancers & Disorders
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 Blood Cancers & Disorders Support Group.

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
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
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
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
jrwilli1 | @jrwilli1 | Apr 26 1:57pm
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

Im glad you found this site. It has been a god send for me. Lori is a blessing and I have frequently used this site and yes I’m not a social media person and most don’t understand. Hugs

REPLY
katgob | @katgob | Apr 26 11:23pm

Updating,
I am day 17 after transplant. I must say I do not dig into treatments before I have them. I read all the materials COH provides, but I do not dig in deep. I will not have all the symptoms or side effects, so the worry is less. I will not that 2 days before my transplant I got melphalan chemo. Interesting. Day 16 I heard that this chemo damages your GI track. Great, and likely the reason tomato type dishes I ate, and fruit had me vomit a lot. For a number of days. I was finally given a 72 hr chemo that combined with Zofran ever 8 hours stopped it. 2 days free. I had been given Zofran and Compazine, but Compazine makes me sleepy.
I am also participating in the Research study meant to help stop the host/graft disease. Again, not looking too deep. I never noticed i had 2 more chemo day 2 days after transplant. Really, it took me a while to get how this two chemo's were the final flush to clear my cells out of my blood. Allowing my new cells a clean place to grow. I thought after the chemo, that taking my treatment, I only noticed the days I took the pills for this research.
Really, if you need all information, ASK. I asked the varying RN's I have had the last 20 days, and each filled me in. I took each day opening my eyes and feeling how I felt. Nurses come at 7:00/7:30 for shift change. 8-8:30 rotating doctors. I could then report how I felt. More on that in another post which will include my discharge date next week.
Ask Questions. I finally remembered i never asked about what my MDS leads to. Strange I thought. Today I asked on Day 17 my RN what Leukemia I might get. The funny thing is i think she said AML, but i did not write it down. I have more to share, but later.
To all on this journey, I look forward to a number of bone marrow biopsies in the coming months and year. They are manageable and i know the future ones will let me know how my new cells are working.
One day, sometimes one hour at a time.
Katg

REPLY
1 reply
tkidd51 | @tkidd51 | Apr 27 8:54am

I was diagnosed with AML last March and received a BMT at Mayo-Jacksonville in September 2023. I’m doing really well with a few graph verses host issues, but I’m truly thankful to my anonymous donor.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Apr 27 9:34am
In reply to @tkidd51 "I was diagnosed with AML last March and received a BMT at Mayo-Jacksonville in September 2023...." + (show)
@tkidd51

I was diagnosed with AML last March and received a BMT at Mayo-Jacksonville in September 2023. I’m doing really well with a few graph verses host issues, but I’m truly thankful to my anonymous donor.

Jump to this post

Welcome to Connect @tkidd51. You are indeed a newbie in the world of BMT! Congratulations on so many levels! You’re about 7 months post transplant so the most challenging part should be behind you now. I also had AML. I’m nearing my 5 year Cell-iversary and that feeling of gratitude for the second chance at life never gets old! 😉 I hope you get to meet your donor some day. Mine, even after 5 years, has chosen to remain anonymous. I’d love to thank him in person because without him, I would not be here. I owe him everything. 💙💚

Having had your transplant at Mayo-Jacksonville, you’ll be a great source of encouragement and guidance for @caregiverx2, whose husband will be receiving his SCT there sometime around August of this year. Do you live near Jacksonville or did you have to relocate for several months?

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Apr 27 9:41am
In reply to @katgob "Updating, I am day 17 after transplant. I must say I do not dig into treatments..." + (show)
@katgob

Updating,
I am day 17 after transplant. I must say I do not dig into treatments before I have them. I read all the materials COH provides, but I do not dig in deep. I will not have all the symptoms or side effects, so the worry is less. I will not that 2 days before my transplant I got melphalan chemo. Interesting. Day 16 I heard that this chemo damages your GI track. Great, and likely the reason tomato type dishes I ate, and fruit had me vomit a lot. For a number of days. I was finally given a 72 hr chemo that combined with Zofran ever 8 hours stopped it. 2 days free. I had been given Zofran and Compazine, but Compazine makes me sleepy.
I am also participating in the Research study meant to help stop the host/graft disease. Again, not looking too deep. I never noticed i had 2 more chemo day 2 days after transplant. Really, it took me a while to get how this two chemo's were the final flush to clear my cells out of my blood. Allowing my new cells a clean place to grow. I thought after the chemo, that taking my treatment, I only noticed the days I took the pills for this research.
Really, if you need all information, ASK. I asked the varying RN's I have had the last 20 days, and each filled me in. I took each day opening my eyes and feeling how I felt. Nurses come at 7:00/7:30 for shift change. 8-8:30 rotating doctors. I could then report how I felt. More on that in another post which will include my discharge date next week.
Ask Questions. I finally remembered i never asked about what my MDS leads to. Strange I thought. Today I asked on Day 17 my RN what Leukemia I might get. The funny thing is i think she said AML, but i did not write it down. I have more to share, but later.
To all on this journey, I look forward to a number of bone marrow biopsies in the coming months and year. They are manageable and i know the future ones will let me know how my new cells are working.
One day, sometimes one hour at a time.
Katg

Jump to this post

Katg! Good to hear from you. You’re very wise in not digging too deeply into all the aspects of the meds, chemo or side effects. You’re so right, not everything on those lists will even pertain to you so why fill your head with worry! I’m the same way. I’ll deal with things as they go along.

I’m sorry you’re having some gut issues. Actually, chemo, any chemo, tends to mess with the guts. The usual mechanism is that chemo kills off quickly replicating cells, such as cancer cells. Unfortunately, it’s not always discriminatory, so it can also kill off mucosal cells that replicated quickly such as mouth and gut. That’s why some people develop gut issues and mouth sores.

Intitially try to stick with a bland diet, avoiding anything acidic, spicy or greasy. Sometimes having a cup of yogurt daily such as Activia will help calm the gut, supply good probiotics and regulate the gut action.

Thanks for checking in and sharing your experience! You’re doing great and should start engrafting soon if you haven’t already! Sending a hug! Lori.

REPLY
katgob | @katgob | Apr 27 1:28pm

Lori,

Thank you. I trust my Caesar salad. Grilled cheese sandwich. I read my packet of no outside food for 100 days. I ate a meatball sandwich for lunch. Just once. Too much.
Did not eat a lot most of the week.
I will say on my counts. They have been steady 3 days.....no big dips.
I have had 2 blood and 1 platelet infusion. 21 days.
Sadly, my caregiver was not ready to have me there yet. In the end, she canceled her yearly Catalina retreat next weekend. She is somewhere this weekend. I will be let out Monday. She has stuff mon/tues/we'd, so she is looking for a sub. My 2nd caregiver is dogsitting. Both thought 30 days.
This has been stressful. Improving as I have means I can be let out earlier. Great if I had family caring for me. I am grateful for friends.
WBC-5.94/PLT-59/all others good.
A day at a time.
More to the story later. I have told COH nurses about Mayoconnect. Also Lori and how this site has helped me in this journey.

REPLY
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