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.

@waveg ~ Hi Gretchen. Thought I’d pop in for a little follow up to see how you’re doing? I hope all is going well with the transplant and recovery. It would be great to see you on this thread where I’m trying to grab the attention of fellow BMT/SCT patients so we can get some meaningful dialog going to discuss whatever’s on our minds and bodies. Life’s always an adventure isn’t it? How are you fairing during the pandemic? Is it too confining, do you feel depressed? Or are you like me where it gave me another year of a safety net before being exposed to people after the transplant? At least now everyone should be wearing a mask, not just us, right? LOL. Looking forward to hearing from you! Lori.

REPLY
@loribmt

@edb1123 While GvHD can be a bane to our existence, it is also an integral part of why we received the SCT in the first place. We need that internal battle brought on by the new immune system to attack the cancer that our old system could no longer recognize and control. Look at it more like, Graft vs Leukemia. Or Graft vs Tumor. Unfortunately in the early stages of our transplant the new immune system doesn’t differentiate. It looks at our entire body as an invader needing to be eradicated. That’s why initially we’re on the higher doses of immunosuppressants/anti rejection drugs. They act as an anti inflammatory drug to keep things calm. You’ve heard of the cytokine storm brought on by Covid 19? It’s the same thing when our bodies initially go into hyper drive with the new immune system. That’s why it’s imperative to keep our new immune cells quiet but working that first 100 days. We want them to work but not too aggressively.

My husband always teases me that it’s like a new guard dog sitting in front of me, just waiting for me to make a false move. As time goes one, at some point it will no longer see me as a threat and we’ll live an amicable life together. LOL.

My SCT was the end of June 2019. Until Oct that year I showed no sign of GvHD at all. I had one glimmer that the new system was working in August when CMV, a virus that was brought in with my new cells started showing up on blood tests. My doctor held off on giving me a stronger anti viral and just waited. By the next week, my new system had recognized its old foe and took it out! So that was pretty cool to know it was working.
I was feeling pretty cocky about not having any other issues until we began to realize that there was a bit of concern surrounding this. Was my immune system up and ready to fight for me in the event of a return of the AML? If it’s not reacting to any other stimuli would it be ready for invaders? Later in October my doctor started my taper off Tacrolimus and within 2 weeks I did start to have some issues with my hands and wrists. We were all honestly a bit relieved that there was some indication of activity. Though later on, the next GvHD battle was one of “be careful what you ask for” as my transplant doctor said when tackling this new round. But that was a year ago, it was handled and now I’m in a very steady period. I feel 100% normal!

After the first 100 days, we reach a period where any GvH that comes about is generally no longer considered Acute. Acute GvH can develop quickly and get out of control. Later in our transplants, most anything that happens comes on gradually and sometimes subtlety. That’s why it remains important to report in to your team any time something new creeps into the picture. Keep a little journal of new symptoms which arise. Sometimes a watch and wait then report... But we can’t live in fear of this as it is generally corrected quickly with steroids or other immunosuppressants to get life back under control.

We need to keep a sense of humor, sense of adventure and above all, a positive attitude.
I’m glad you brought this up! I hope others will chime in so we can keep this discussion going.

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That was a great explanation and way of looking at GVHD! Thanks, Lori!

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@edb1123

I think one of the hardest things to understand (for me too) is the graft vs. host disease. So many different symptoms can be related to this and can occur at any time.

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@edb1123 While GvHD can be a bane to our existence, it is also an integral part of why we received the SCT in the first place. We need that internal battle brought on by the new immune system to attack the cancer that our old system could no longer recognize and control. Look at it more like, Graft vs Leukemia. Or Graft vs Tumor. Unfortunately in the early stages of our transplant the new immune system doesn’t differentiate. It looks at our entire body as an invader needing to be eradicated. That’s why initially we’re on the higher doses of immunosuppressants/anti rejection drugs. They act as an anti inflammatory drug to keep things calm. You’ve heard of the cytokine storm brought on by Covid 19? It’s the same thing when our bodies initially go into hyper drive with the new immune system. That’s why it’s imperative to keep our new immune cells quiet but working that first 100 days. We want them to work but not too aggressively.

My husband always teases me that it’s like a new guard dog sitting in front of me, just waiting for me to make a false move. As time goes one, at some point it will no longer see me as a threat and we’ll live an amicable life together. LOL.

My SCT was the end of June 2019. Until Oct that year I showed no sign of GvHD at all. I had one glimmer that the new system was working in August when CMV, a virus that was brought in with my new cells started showing up on blood tests. My doctor held off on giving me a stronger anti viral and just waited. By the next week, my new system had recognized its old foe and took it out! So that was pretty cool to know it was working.
I was feeling pretty cocky about not having any other issues until we began to realize that there was a bit of concern surrounding this. Was my immune system up and ready to fight for me in the event of a return of the AML? If it’s not reacting to any other stimuli would it be ready for invaders? Later in October my doctor started my taper off Tacrolimus and within 2 weeks I did start to have some issues with my hands and wrists. We were all honestly a bit relieved that there was some indication of activity. Though later on, the next GvHD battle was one of “be careful what you ask for” as my transplant doctor said when tackling this new round. But that was a year ago, it was handled and now I’m in a very steady period. I feel 100% normal!

After the first 100 days, we reach a period where any GvH that comes about is generally no longer considered Acute. Acute GvH can develop quickly and get out of control. Later in our transplants, most anything that happens comes on gradually and sometimes subtlety. That’s why it remains important to report in to your team any time something new creeps into the picture. Keep a little journal of new symptoms which arise. Sometimes a watch and wait then report... But we can’t live in fear of this as it is generally corrected quickly with steroids or other immunosuppressants to get life back under control.

We need to keep a sense of humor, sense of adventure and above all, a positive attitude.
I’m glad you brought this up! I hope others will chime in so we can keep this discussion going.

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@colleenyoung

I'd like to invite @leukskywalker @jessica0 and @taybro4 into this discussion too.

@lisal64 @loribmt @edb1123, what would you like family and friends to understand better about SCT/BMT? Are there things we just don't "get"?

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I think one of the hardest things to understand (for me too) is the graft vs. host disease. So many different symptoms can be related to this and can occur at any time.

REPLY

I'd like to invite @leukskywalker @jessica0 and @taybro4 into this discussion too.

@lisal64 @loribmt @edb1123, what would you like family and friends to understand better about SCT/BMT? Are there things we just don't "get"?

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@lisal64

Thank you, Lori, for your sweet reply! I am glad we have our re-birthdays close together! And yes, between my husband and I, we have 12 Grandchildren, and now have our 1st Great Grandaughter! Our oldest Grand was able to visit with her last month, from California, for her 1st Birthday. We were thrilled! Both adults had to show negative Covid tests within 72 hrs of boarding plane, both to and from Georgia! But it was very special for us to finally meet our precious Great Grand! I double masked for her cake and small "party", and got some great pictures!
And I did have an Autologous SCT. I recieved injections for 4 days, to ramp up my stem cells. Then I had my own Stem Cells "harvested", in one day! (Enough for 2 transplants!). They freeze and keep half, in case I need a second SCT down the road. The process is similar to hemodialysis. These were frozen until transplant! I am so sorry others who have donor transplants, have to go through GVHD. But I have heard of many wonderful outcomes from these, as well! Wishing you the best on your own journey!
I have not been able to work since Cemo induction, July, 2019. I nursed on a busy med-surg unit for 9 years prior to diagnosis. Being only 54 at diagnosis, indeed pulled the rug out from under me! My local Hemotologist/Oncologist, said these words to me: "You have Multiple Myeloma. There is no cure. You will be on Chemo for the rest of your life." That was pretty much all I heard during that entire visit. I was an emotional mess for the first 6 months or so, especially after having progression of disease after the 1st , very rough, 4 months of treatment. But I have adjusted, finally. At this point, I am not sure if I will return to work, or not. It would be part time if at all.
As for the pain, my doctor thinks it may be an ongoing thing. But I have thought that PT may help me learn to strengthen muscles without causing fractures. I am to have a PET scan in April, locally, to check on my bone lesions. These lesions cause a very increased risk of pathological fractures, and compression fractures, even when a patient is in complete response (remission). I am currently in Very Good Partial Response.
(I have multiple lesions throughout my skeleton.) Thank you for mentioning PT!
The maintenance chemo will be ongoing for at least 2 years or more, as long as I remain in good response. If relapse occurs, I will begin another regime of chemo.
The puppy has been a lifesaver! I was so sad and down during the summer. He is so sweet and playful. And loves hugs and belly rubs! ❤ He keeps me moving, with multiple short walks every day. He follows me everywhere around the house! I can not wait to have the Grandchildren here with us like before the pandemic!
Thank you for starting this discussion! Some of the best information I have gotten, is from fellow warriors going through similar battles! It is also comforting to know one is not alone!

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@lisal64
You have sure been through the ringer since this diagnosis. There’s never an easy way to deliver devastating news like that but there can be more delicate approaches! And you’re right, there are key phrases that just precede everything else in a conversation after the words are delivered! I remember the very off-hand/glib manner my GP told me I had leukemia on the phone. That’s in one of my previous posts. I’ll never forget her callousness.

That same night I was admitted to the hospital where the attending hematologist/oncologist sat holding my hand and telling my husband and me that AML was like a Texas Thunderstorm. One minute the sky is blue and it’s a perfect day. The next moment a storm billows up out of nowhere and all hell breaks loose with a twister! He very calmly and gently told us the statistical odds of survival after my husband asked, which weren’t favorable. Then he said we’re way ahead of ourselves on this! First we launch an all out attack. LOL. He and 4 other oncologists, along with bags of chemo, got me past that first hurdle and ready for the stem cell transplant months later. But his Texas Thunderstorm and kind manner stuck in my head.

I’m so happy for you that you’re in a good place right now with your treatment. I sure hope it keeps on working for you and that your biopsy is clear and PET scan shows improvement! I was thinking about exercises and PT to keep your pain down and bone strength up! Are you able to be in a pool? That might be a good source of gentle exercise for you to build strength and stamina without damaging bones. There’s quite a few websites regarding this. Maybe ask your doctor if this would be a good idea to help keep you mobile.

https://www.spine-health.com/wellness/exercise/water-therapy-exercise-program

Aw, it’s so heartwarming you finally got the chance to meet your little great grand baby after a year! Photos don’t do justice to cuddling a new munchkin! Do most of your family live near you? Or are they scattered all over the country? This virus has us all keeping distance from our loved ones. Hopefully soon enough this gets under control so we can have some great reunions. Our daughter lives 5 hours from us, which isn’t far. But we’ve had to keep our distance for much too long. Video chats, texting and phone calls are great but they don’t replace a hug!

I’m envious of your puppy!! Dogs bring such joy to our lives, don’t they? Our Golden passed 4 years ago. That was devastating. We were finally about ready for another dog when the AML and all those shenanigans popped up. Timing wasn’t good. Now?? Maybe...we’ll see who finds us this time. LOL.

Time to go take on the day. Wishing you a stellar day! Hugs.

REPLY
@loribmt

@lisal64 Hi Lisa! It’s great to have you in the BMT/SCT discussion! Thank you for sharing your transplant story. There are so many underlying diseases that can warrant a SCT that we don’t always cross paths until the transplant. I thought it would be a great idea to bring us all together and would like to really build this group to discuss a wide array of the issues we face.

I read through the earlier posts of your diagnosis with Multiple Myeloma. Having a diagnosis out of the blue like that really pulls the rug right out from under, doesn’t it? Life changes in an instant. It sounds like you have a marvelous support system with your sweet husband and family! Did I see you have 12 grandchildren? What joy they bring to your family!! I’m sure it’s frustrating not to see them as often as you’d like. But knowing they’re waiting for Grandma is a driving force to keep going. Hopefully this virus gets under control soon so we can all resume some family time and ‘normal’ actives. I miss hugs!!

It’s wonderful you were able to have your treatments and SCT at Mayo and live so close. They really set the standard for health care. Being ‘Mayo-naised” spoils us for anywhere else. 🙂 Did you have a autologous transplant? So after your bone marrow was cleared with chemo you were able to use your own stem cells to replenish the marrow. It’s a plus that you could avoid any graft vs host issues. You mentioned being on maintenance chemo. How long will you remain on this regimen? If your BMX in June is clear will you be able to stop those meds?

I’m sorry you’re still having bone pain and muscle spasms when you’re active. Is there any physical therapy you can do to help ease your muscle spasms and speed recovery? Not knowing much about MM I quickly did a little reading and those symptoms are associated with the disease. Do your doctors feel these symptoms will subside over time now that you’ve had the transplant? And don’t feel bad about napping. The hardest thing I had to learn of the past 2 years was to “listen to your body” which was drilled into me over and over by my BMT team! LOL. If you’re tired, rest!! Not always easy for an RN, mom/grandmom. I’m sure you’re used to being active and non-stop. It’s ok to have life happen on your time now! Are you still working?

Having a new puppy in the house I’m sure keeps you plenty active! Hopefully soon enough your grandkids can join the mix.
Would love to visit more with you so pop in any time! Our rebirth days are 18 days apart in June! We can have virtual cake and high fives! LOL.
Wishing you continued health and a clean BMX!! Lori.

Jump to this post

Thank you, Lori, for your sweet reply! I am glad we have our re-birthdays close together! And yes, between my husband and I, we have 12 Grandchildren, and now have our 1st Great Grandaughter! Our oldest Grand was able to visit with her last month, from California, for her 1st Birthday. We were thrilled! Both adults had to show negative Covid tests within 72 hrs of boarding plane, both to and from Georgia! But it was very special for us to finally meet our precious Great Grand! I double masked for her cake and small "party", and got some great pictures!
And I did have an Autologous SCT. I recieved injections for 4 days, to ramp up my stem cells. Then I had my own Stem Cells "harvested", in one day! (Enough for 2 transplants!). They freeze and keep half, in case I need a second SCT down the road. The process is similar to hemodialysis. These were frozen until transplant! I am so sorry others who have donor transplants, have to go through GVHD. But I have heard of many wonderful outcomes from these, as well! Wishing you the best on your own journey!
I have not been able to work since Cemo induction, July, 2019. I nursed on a busy med-surg unit for 9 years prior to diagnosis. Being only 54 at diagnosis, indeed pulled the rug out from under me! My local Hemotologist/Oncologist, said these words to me: "You have Multiple Myeloma. There is no cure. You will be on Chemo for the rest of your life." That was pretty much all I heard during that entire visit. I was an emotional mess for the first 6 months or so, especially after having progression of disease after the 1st , very rough, 4 months of treatment. But I have adjusted, finally. At this point, I am not sure if I will return to work, or not. It would be part time if at all.
As for the pain, my doctor thinks it may be an ongoing thing. But I have thought that PT may help me learn to strengthen muscles without causing fractures. I am to have a PET scan in April, locally, to check on my bone lesions. These lesions cause a very increased risk of pathological fractures, and compression fractures, even when a patient is in complete response (remission). I am currently in Very Good Partial Response.
(I have multiple lesions throughout my skeleton.) Thank you for mentioning PT!
The maintenance chemo will be ongoing for at least 2 years or more, as long as I remain in good response. If relapse occurs, I will begin another regime of chemo.
The puppy has been a lifesaver! I was so sad and down during the summer. He is so sweet and playful. And loves hugs and belly rubs! ❤ He keeps me moving, with multiple short walks every day. He follows me everywhere around the house! I can not wait to have the Grandchildren here with us like before the pandemic!
Thank you for starting this discussion! Some of the best information I have gotten, is from fellow warriors going through similar battles! It is also comforting to know one is not alone!

REPLY

@lisal64 Hi Lisa! It’s great to have you in the BMT/SCT discussion! Thank you for sharing your transplant story. There are so many underlying diseases that can warrant a SCT that we don’t always cross paths until the transplant. I thought it would be a great idea to bring us all together and would like to really build this group to discuss a wide array of the issues we face.

I read through the earlier posts of your diagnosis with Multiple Myeloma. Having a diagnosis out of the blue like that really pulls the rug right out from under, doesn’t it? Life changes in an instant. It sounds like you have a marvelous support system with your sweet husband and family! Did I see you have 12 grandchildren? What joy they bring to your family!! I’m sure it’s frustrating not to see them as often as you’d like. But knowing they’re waiting for Grandma is a driving force to keep going. Hopefully this virus gets under control soon so we can all resume some family time and ‘normal’ actives. I miss hugs!!

It’s wonderful you were able to have your treatments and SCT at Mayo and live so close. They really set the standard for health care. Being ‘Mayo-naised” spoils us for anywhere else. 🙂 Did you have a autologous transplant? So after your bone marrow was cleared with chemo you were able to use your own stem cells to replenish the marrow. It’s a plus that you could avoid any graft vs host issues. You mentioned being on maintenance chemo. How long will you remain on this regimen? If your BMX in June is clear will you be able to stop those meds?

I’m sorry you’re still having bone pain and muscle spasms when you’re active. Is there any physical therapy you can do to help ease your muscle spasms and speed recovery? Not knowing much about MM I quickly did a little reading and those symptoms are associated with the disease. Do your doctors feel these symptoms will subside over time now that you’ve had the transplant? And don’t feel bad about napping. The hardest thing I had to learn of the past 2 years was to “listen to your body” which was drilled into me over and over by my BMT team! LOL. If you’re tired, rest!! Not always easy for an RN, mom/grandmom. I’m sure you’re used to being active and non-stop. It’s ok to have life happen on your time now! Are you still working?

Having a new puppy in the house I’m sure keeps you plenty active! Hopefully soon enough your grandkids can join the mix.
Would love to visit more with you so pop in any time! Our rebirth days are 18 days apart in June! We can have virtual cake and high fives! LOL.
Wishing you continued health and a clean BMX!! Lori.

REPLY
@loribmt

So, I kicked off this discussion group with my story. Now I'd like to hear from others who have had a bone marrow transplant; autologous or allogenic stem cell transplant or been the a caregiver to someone who had BMT or SCT.

@kjjjrader @tedwueste @rwalkie @tmvanla @waveg @duttasujata @edb1123 @mjpm2406 @buckyc71 @javajude @jeaniecm @evett @ckeys @jeremy88 @chickey @mjrussell2 @motherboard @lel @gorjis1 @zellheff @auntieoakley @craigkopcho @bobby2014 @lakegirl409 will you join me? Pull up a chair and share your BMT or SCT story.

Here are some questions to consider as you write your story:
– Focus on yourself and how you felt, what you did, who helped you?
– What led to your needing a bone marrow or stem cell transplant?
– What was recovery like?
– How is life now since your transplant?

Looking forward to some great discussions! Lori.

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Hi Lori! I am now 8 1/2 months post Auto SCT. I was diagnosed with Multiple Myeloma in June, 2019. My SCT was June 10, 2020, at Mayo-Jacksonville. My 1st SCT cas postponed in October, 2019, due to progression of MM in by multiple bone lesions. I was devastated, as we were getting everything lined up when I got the call. After 4 months of my second regime, also at Mayo per my insistance, my BMB and PET scan showed I was ready. My local primary physician agreed. I was more concerned due to the Covid pandemic. But could not have had a better experience that at Mayo. I had a rough 7 days, with weakness, nausea, and diarrhea, but the staff was there in a minute, with any problems I had.

I engrafted on day +12. My husband is my caregiver, and luckily he was allowed to visit from 12 pm until 8pm in hospital. I think this is as important as medicine, for the healing process.

We stayed in Jacksonville for 10 more days, and were released to come home 7/2. A gallbladder attack on 6/30 (my 1st and so far last), sent me to the ER. It resolved on its own. I had lingering gi issues for several months. I was blessed with a dedicated husband! He is my hero, and has made the journey so much easier! I have ongoing bone pain, and muscle spasms, with any activity. I still nap 3-4 days a week. The pandemic has made it rough, as my husband works. I really miss spending time with family and friends, and miss my Grandchildren, the most. I see them occasionally, but it is not the same! We got a new puppy in October, which has helped me tremendously! I am on maintenance chemo, of course, but at least no steroids with it for now! I am blessed to have been able to go to Mayo, which is 2 1/2 hours away. I too, have been Mayo-naised!

I am an RN, which makes it rougher to be a patient. But I am so impressed with the team approach, great communication skills, and organization that makes Mayo so great! Everyone at Mayo has been wonderful! I have a BMB scheduled for June 10th, so am waiting on this as patiently as possible!

REPLY
@corn50

I, also, am a proud patient of Mayo transplant (Jacksonville, Fl). I had a liver transplant November 2017. What a gift! The Mayo team at this location is everything you have written about your Mayo Rochester and I love the team approach! We have been May-naissed! Best of good health wished for you.
Toosie, Ponte Vedra Beach, Fl.

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@corn50. Hi Toosie, Your response made me laugh. My husband and I are always joking about getting “extra Mayo’ and being
Mayo-naised. T-shirts in the future??? LOL. It’s great you’re doing so well! It truly is a gift, isn’t it...both the new transplant and having Mayo Clinic as our team. Continued good health to you! Lori.

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