My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Posted by Lori, Volunteer Mentor @loribmt, Feb 14 12:25pm

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?

@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.

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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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@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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@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.

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@loribmt

@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.

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Hi Lori! All is going well for me. Life truly is an an adventure and never boring! I’ve been very fortunate for my care at the Mayo Clinic and my recovery from MDS. I’ve done very well and was discharged from the hospital almost one week early. I have had some graft vs host issues with liver function so they put me on prednisone and changed my doses on other meds. They went down significantly, however, the last labs were up a little. I hope it was just a blip. My marrow and CD33 are 100% donor and my CD3 is 80%. The doctors are ok with this and say the CD3 should increase in time.

I’m not far from Mayo Jacksonville so the weather has been good to me. Allowing outside activities and meeting friends outside during the pandemic. I can’t imagine having to be closed inside for the winter. It has been helpful that others are also being careful due to the pandemic and I’m not the only one out there wearing a mask.

My hair is coming back and is about 1/2 inch long and it can’t grow fast enough! I’m not sure how long I’ll stand the wigs. The weight loss has brought me to the weight I should be and I hope to stay there. So right now I’m walking and doing some strength exercises to help this along and get toned.

I haven’t felt depressed and look at my cup as 1/2 full and getting fuller all the time. I’ve had lots more energy. I was used to running on a hemoglobin of 7 and with it doubled now, it’s great!

Overall, my transplant was very easy and I’m so grateful. I had a few intermittent very sleepy days in the hospital and a few after I got home. My wonky lab results were asymptomatic so I didn’t feel any different. Once I’m off the tacrolimus, I should be able to get the Covid vaccine and I start my childhood vaccinations next week.

I hope others are doing well through their BMT/SCT. Thank you Lori for keeping the communication lines open.
Gretchen

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@waveg

Hi Lori! All is going well for me. Life truly is an an adventure and never boring! I’ve been very fortunate for my care at the Mayo Clinic and my recovery from MDS. I’ve done very well and was discharged from the hospital almost one week early. I have had some graft vs host issues with liver function so they put me on prednisone and changed my doses on other meds. They went down significantly, however, the last labs were up a little. I hope it was just a blip. My marrow and CD33 are 100% donor and my CD3 is 80%. The doctors are ok with this and say the CD3 should increase in time.

I’m not far from Mayo Jacksonville so the weather has been good to me. Allowing outside activities and meeting friends outside during the pandemic. I can’t imagine having to be closed inside for the winter. It has been helpful that others are also being careful due to the pandemic and I’m not the only one out there wearing a mask.

My hair is coming back and is about 1/2 inch long and it can’t grow fast enough! I’m not sure how long I’ll stand the wigs. The weight loss has brought me to the weight I should be and I hope to stay there. So right now I’m walking and doing some strength exercises to help this along and get toned.

I haven’t felt depressed and look at my cup as 1/2 full and getting fuller all the time. I’ve had lots more energy. I was used to running on a hemoglobin of 7 and with it doubled now, it’s great!

Overall, my transplant was very easy and I’m so grateful. I had a few intermittent very sleepy days in the hospital and a few after I got home. My wonky lab results were asymptomatic so I didn’t feel any different. Once I’m off the tacrolimus, I should be able to get the Covid vaccine and I start my childhood vaccinations next week.

I hope others are doing well through their BMT/SCT. Thank you Lori for keeping the communication lines open.
Gretchen

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@waveg Hi Gretchen! That’s great news! I’m so happy to hear the transplant was easy, your energy is back and life is returning to normal! Well, as normal as it can get with the pandemic hanging around. Yours is such a positive, encouraging story to share for others to see. I hope we can keep getting more of our SCT/BMT members joining.

Seems like the liver is a frequent target for gvhd and the meds are always being tweaked like little dials to get the balance just right. I’m still on a very low dose of tacro for the same reason. A little GvHD ‘gnawing around the edges’ as my husband likes to say. My doctor wants to hold on a little longer just to make sure it’s stabilized now before taking me fully off. My numbers have been getting better on the liver side of things but because of the tacrolimus, my kidney numbers are going in the other direction. LOL. Like I said, it’s tweaking here and there to keep both organs happy. What is your daily dose of tacrolimus right now? Have you been tapering off?

Hair at 1/2 inch? It’s time to liberate your head and show off that newly acquired crown! ( but wear a hat in the sun!) It really does feel like it takes forever to get started, doesn’t it? But then all of a sudden it takes off! Wonder if your texture or color will change. I had Christopher Walken hair for the longest time. It was hilarious but it was hair and it was growing! LOL. I had 2 wigs and honestly, I seldom wore them. I felt a little bad-ass with my new look! Fierce warrior. Now it’s just a shaggy mane needing a professional cut! Fortunately I’m not seen by many people so at this point it’s no head of shame.

Life is not boring for sure. With a SCT it’s best to keep a sense of humor and a sense of adventure.

I’m so happy you wrote, Gretchen. Will you keep tuned in to the site? It’s great to have fellow SCT/BMT members on board so we can get some good conversations going in the future with a larger group. I’m being optimistic. ☺️

All the best…Lori.

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A little chuckle for the day.
I had my #2 Pfizer this morning. Talking with the intake nurse, she wished me good luck and said that it seems like women are tending to have a stronger reaction to the vaccine than men. So I told her that I’m in luck then! My immune system is male! The bewildered look on her face was priceless. 🙂

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Hi Lori—I had my 2nd Pfizer dose on Thursday, after ear surgery for. Cholesteatoma on Tuesday. This one kinda kicked my tail. Fever has been hovering around 101.5 and feel generally unwell. Hope you are able to avoid that! Cute story btw

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@pamh480

Hi Lori—I had my 2nd Pfizer dose on Thursday, after ear surgery for. Cholesteatoma on Tuesday. This one kinda kicked my tail. Fever has been hovering around 101.5 and feel generally unwell. Hope you are able to avoid that! Cute story btw

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Hi Pam, oh I’m sorry to hear you’re feeling nasty after the second shot. Can you take an Advil or Tylenol? It will help you feel better getting rid of the fever.

I was actually surprised I didn’t have a reaction this time. Apparently it’s pretty common with round 2.
In regard to my story about the shot yesterday, I’m on a FB group where we discuss stem cell transplants. So I posted my little chuckle on there too about my having a male immune system. One of my fellow transplant friends asked me how I was feeling today. She also got cells from a young man and had an easy time with the vaccine. So she was curious as to my reaction. Couldn’t resist telling her, “I took it like a man!” 😅
Hope you feel better soon! Beats getting the virus!! Lori.

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@loribmt

Hi Pam, oh I’m sorry to hear you’re feeling nasty after the second shot. Can you take an Advil or Tylenol? It will help you feel better getting rid of the fever.

I was actually surprised I didn’t have a reaction this time. Apparently it’s pretty common with round 2.
In regard to my story about the shot yesterday, I’m on a FB group where we discuss stem cell transplants. So I posted my little chuckle on there too about my having a male immune system. One of my fellow transplant friends asked me how I was feeling today. She also got cells from a young man and had an easy time with the vaccine. So she was curious as to my reaction. Couldn’t resist telling her, “I took it like a man!” 😅
Hope you feel better soon! Beats getting the virus!! Lori.

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Haha! I would say you took it like a WO-man! It is interesting. My donor was female….hmmm….

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@pamh480

Haha! I would say you took it like a WO-man! It is interesting. My donor was female….hmmm….

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HA! Yes, a Wo-man! A much better way to state that!! 😂 And if you get technical I guess I AM a Wo-man!! My chimerism shows I have XY chromosomes of a man. Not female XX.

Joking aside, I wished I’d asked my transplant doctor Tuesday when I had an appointment with him if it would have any bearing on the vaccine reaction. It’s probably too vague to even know that. Weird stuff!
Do you find you have odd questions like that too? Like what are the significant differences when there’s an opposite sex stem cell transplant? I understand the difference between male and female responses to the covid vaccine. Apparently women have a stronger immune system and it can be hormone driven. But if I have a male’s immune system, would I have the reaction of a male?
From information I’ve gathered I also know that doctors try to avoid giving a male a female donor if she’s had a child and especially if she’s had more than one. There’s so much science behind all of this!

An odd thing I’ve found is that I heal incredibly quickly! Whether it’s a burn on the hand, a scratch or abrasion, it’s gone within a day or two!
Do you have any unusual stories?

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@loribmt

HA! Yes, a Wo-man! A much better way to state that!! 😂 And if you get technical I guess I AM a Wo-man!! My chimerism shows I have XY chromosomes of a man. Not female XX.

Joking aside, I wished I’d asked my transplant doctor Tuesday when I had an appointment with him if it would have any bearing on the vaccine reaction. It’s probably too vague to even know that. Weird stuff!
Do you find you have odd questions like that too? Like what are the significant differences when there’s an opposite sex stem cell transplant? I understand the difference between male and female responses to the covid vaccine. Apparently women have a stronger immune system and it can be hormone driven. But if I have a male’s immune system, would I have the reaction of a male?
From information I’ve gathered I also know that doctors try to avoid giving a male a female donor if she’s had a child and especially if she’s had more than one. There’s so much science behind all of this!

An odd thing I’ve found is that I heal incredibly quickly! Whether it’s a burn on the hand, a scratch or abrasion, it’s gone within a day or two!
Do you have any unusual stories?

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@loribmt Although I have not had an SCT, I find these discovered differences to be absolutely fascinating! Wow!
Ginger

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