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.

@loribmt

Good morning. I know there’s a lot of information being tossed your way in preparation for your upcoming stay in Rochester. My husband and I went through the same thing. The logistics seemed a bit daunting. But it all works out. ☺️ Now, it’s our home away from home and we’re always eager to return for follow up appointments. It’s like coming home!

@gingerw brought brought up more points, such as the airing of the drapes and vacuuming again. Just make sure your husband is not in the same room when you’re doing that and that he is fully masked.
The mindset for you and your husband during transplant recovery has to be, in a word, Germaphobic. His immune system will be very compromised so he’ll need to avoid exposure to dusts, dirt, plants, soil etc.
I wanted to add, cover the sofa or wherever he’ll be sitting with a clean sheet. You don’t know who’s been on that sofa before or what illness they had.
Again, I’m not trying to overwhelm you, just getting you prepared for a little life change for a while.
When I had extended visits to the clinic, my husband would take that opportunity to spray the fabric furniture and drapes in our hotel apartment with Lysol spray.
I’m sure others will add some ideas here for you too. Just jot them down.
You’ll be getting guidance from his transplant team as well. In the meantime, I found a very comprehensive post-transplant guideline from another reputable clinic.

https://www.mskcc.org/pdf/cancer-care/patient-education/leaving-hospital-after-your-allogeneic-transplant

These are very similar to my Mayo guideline pamphlet so this will give you a heads up.
How’s your husband feeling about all of this?

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He has a positive attitude, which is great. I checked with property manager about the drapes and they said they would replace all with blinds. Best. Landlord. Ever!
My husband just had a splenectomy Friday to prepare for BMT. He’s up walking a bit yesterday and working on getting pain under control. They figure a 6 week recovery period pre BMT. While he is recovering in the hospital, I’ve been able to walk around the area to get my bearings. Very nice community.

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@lag630

He has a positive attitude, which is great. I checked with property manager about the drapes and they said they would replace all with blinds. Best. Landlord. Ever!
My husband just had a splenectomy Friday to prepare for BMT. He’s up walking a bit yesterday and working on getting pain under control. They figure a 6 week recovery period pre BMT. While he is recovering in the hospital, I’ve been able to walk around the area to get my bearings. Very nice community.

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Good morning! You and your husband have been on my mind the past couple of days and up you pop! It’s a relief to hear he’s already had the surgery. Things are moving quickly!

It sounds like you’ve found a real gem to live in for the summer and are settling in nicely. I agree, your landlord sounds incredibly accommodating! What a lucky find! How’s your little dog adapting to the new life? Lots of new places to walk and sniff. ☺️

It’s good to hear you’re out exploring Rochester. It really is a wonderful city. My husband spent hours walking around the neighborhoods and the trails along Bear Creek and the river.
He’d tell me about all the wildlife and interesting spots he found. Finally, when I got strong enough I was able to join my husband for some shorter walks to see what he was talking about. Now, when we go to Rochester for my checkups, we both head out for an hour or two on the familiar trails. Rochester is our home away from home. ☺️

As your husband recovers from his surgery, there is a really fun event held every Thursday downtown you both might be enjoy. Vendors, food, music. It’s downtown near the Peace Plaza. https://www.downtownrochestermn.com/events/thursdaysdowntown

Wishing your husband a speedy recovery this week. ☺️
How’s the search for a stem cell donor coming along?

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@loribmt

Good morning! You and your husband have been on my mind the past couple of days and up you pop! It’s a relief to hear he’s already had the surgery. Things are moving quickly!

It sounds like you’ve found a real gem to live in for the summer and are settling in nicely. I agree, your landlord sounds incredibly accommodating! What a lucky find! How’s your little dog adapting to the new life? Lots of new places to walk and sniff. ☺️

It’s good to hear you’re out exploring Rochester. It really is a wonderful city. My husband spent hours walking around the neighborhoods and the trails along Bear Creek and the river.
He’d tell me about all the wildlife and interesting spots he found. Finally, when I got strong enough I was able to join my husband for some shorter walks to see what he was talking about. Now, when we go to Rochester for my checkups, we both head out for an hour or two on the familiar trails. Rochester is our home away from home. ☺️

As your husband recovers from his surgery, there is a really fun event held every Thursday downtown you both might be enjoy. Vendors, food, music. It’s downtown near the Peace Plaza. https://www.downtownrochestermn.com/events/thursdaysdowntown

Wishing your husband a speedy recovery this week. ☺️
How’s the search for a stem cell donor coming along?

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Hi!
Thank you😊. The good news is that there are 2 persons who are unrelated
100% match!

He should be discharged in a day or two and I’ll receive training for
recovery at home. Recovery has gone well thus far in the hospital.

I know the time will go quickly before we move back to Rochester…. A pretty
nice place to live if you have to relocate short term. I appreciate your
help with all of this and I’ll be sure to check out the Thursday night
events😊

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@lag630

Hi!
Thank you😊. The good news is that there are 2 persons who are unrelated
100% match!

He should be discharged in a day or two and I’ll receive training for
recovery at home. Recovery has gone well thus far in the hospital.

I know the time will go quickly before we move back to Rochester…. A pretty
nice place to live if you have to relocate short term. I appreciate your
help with all of this and I’ll be sure to check out the Thursday night
events😊

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Good morning! I’m so happy to hear your husband is recovering quickly and well! The other great news is finding 2 unrelated donors with 10/10s! ☺️

One more note, the Thursday events with vendors, music, food, is during the day! 11 AM to 7 PM, so no need to go out at night.

As transplant gets closer, I know you’ll both have a lot of questions so don’t hesitate to ask…nothing is trivial when going through this.
Anything else I can help you with?

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@wyom1998

2/23/22 SCT didn't work.

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Oh golly, I’m sorry to hear this attempt didn’t work out. That’s disappointing and I’m sure very frustrating for you. What’s the treatment plan going forward?

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Revlimid, dara and carfilzomid instead of valcade I was on pre SCT

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@wyom1998

Revlimid, dara and carfilzomid instead of valcade I was on pre SCT

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Paraprotein .9
Kappa 1.73
Lamba .17
Ratio 10.18

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I would like to share my BMT story. I had an autologous stem cell transplant 8 weeks ago this week. First, I will give the story of my diagnosis. It began with a colonoscopy. The pathology report on a polyp gave an incidental finding of amyloid, a word I had never seen before. I did a google search and found amyloidosis is a blood disorder. A trip to Mayo Clinic-Rochester and a bone marrow biopsy confirmed I did indeed have amyloidosis and a stem cell transplant was offered to me. We returned to Rochester the last week of March for testing to see if I was fit for a transplant and received the go ahead to proceed with the plan which was for an autologous stem cell transplant. This means my own stem cells were used and not donor cells.

The process involved getting shots over 4 days to stimulate my bone marrow to make extra stem cells. I received a chest port during a quick surgical procedure so they could access my blood stream that way and not through pokes in my arms. No more "ouches"! Then the stem cell collection began in a process called apheresis. I was hooked up to the machine for 5 hours at a time through the port. It was actually quite interesting to watch the process as my blood left my body and went into the machine which reminded me of a dialysis machine. Then my blood came back into me minus the stem cells. The goal was to collect enough stem cells for 2 stem cell transplants and I had enough collected in 2 days. Some people need 4 or more days to collect what they need with the cells then bagged and frozen until needed. I had no ill effects from the apheresis except for a slight tingling in my lips during the process. They encouraged me to eat something and I had a bag of snacks at the ready!

A few days later I received high dose chemo over 2 days. Each IV bag of chemo took approximately an hour to be infused. While I was receiving it, I did my best to keep my mouth cold with ice chips they gave me. I had read that keeping the mouth cold causes a vasoconstriction of the blood vessels and helps prevent mouth sores. It worked for me - no mouth sores! As an aside, I had been to the dentist 2 months earlier and he prescribed sensitive tooth paste to use in the weeks leading up to my BMT to help with cold sensitivity. It helped, and although a bit unpleasant the ice chips were doable! Then, the very next day I got my stem cells infused. They thawed 2 bags of cells out in a bath of warm water and hooked them up on the IV pole. They were a beautiful creamy color!

I had some side effects from the chemo but the Mayo staff had solutions for every problem. Nausea, vomiting, and diarrhea would come and go. I checked in every day at Station 94 and received IV fluids as needed. I was weak and needed a wheelchair so we borrowed one of the many that seem to be everywhere you look. We stayed close by and used the underground tunnel to go back and forth from our extended stay hotel to the Methodist Campus where my appointments were. The tunnel system is climate controlled, carpeted, and well-lit. A nice plus if you happen to be in Rochester during the sometimes harsh winter months!

I had no major complications and was treated as an out patient during our stay in Rochester. I was released to come home 3 weeks after the transplant as my blood counts had recovered to a sufficient level. I had to deal with fatigue, lack of appetite, and some minor leg swelling for a couple of weeks after getting home. I was on a mostly plant based diet before my BMT but started to eat more protein which has helped immensely with my fatigue. I don't go out of the house very much yet due to my weakened immune system but my energy level has retuned to the point I can do all the household chores again. I was able to get Evusheld which gives some protection if I'm exposed to Covid.

I will have my 100 day check-up in July. I feel fortunate that medicine can offer treatments such as stem cell transplants which can offer not only remission of certain diseases, but even cures for other diseases. If a BMT is in your future, my advise is to be kind to yourself. It takes time to recover and everyone's experience will be different. Get plenty of rest, eat well, and stay positive! It really does help with your recovery!! Good Luck!!!

REPLY
@countrygirlusa

I would like to share my BMT story. I had an autologous stem cell transplant 8 weeks ago this week. First, I will give the story of my diagnosis. It began with a colonoscopy. The pathology report on a polyp gave an incidental finding of amyloid, a word I had never seen before. I did a google search and found amyloidosis is a blood disorder. A trip to Mayo Clinic-Rochester and a bone marrow biopsy confirmed I did indeed have amyloidosis and a stem cell transplant was offered to me. We returned to Rochester the last week of March for testing to see if I was fit for a transplant and received the go ahead to proceed with the plan which was for an autologous stem cell transplant. This means my own stem cells were used and not donor cells.

The process involved getting shots over 4 days to stimulate my bone marrow to make extra stem cells. I received a chest port during a quick surgical procedure so they could access my blood stream that way and not through pokes in my arms. No more "ouches"! Then the stem cell collection began in a process called apheresis. I was hooked up to the machine for 5 hours at a time through the port. It was actually quite interesting to watch the process as my blood left my body and went into the machine which reminded me of a dialysis machine. Then my blood came back into me minus the stem cells. The goal was to collect enough stem cells for 2 stem cell transplants and I had enough collected in 2 days. Some people need 4 or more days to collect what they need with the cells then bagged and frozen until needed. I had no ill effects from the apheresis except for a slight tingling in my lips during the process. They encouraged me to eat something and I had a bag of snacks at the ready!

A few days later I received high dose chemo over 2 days. Each IV bag of chemo took approximately an hour to be infused. While I was receiving it, I did my best to keep my mouth cold with ice chips they gave me. I had read that keeping the mouth cold causes a vasoconstriction of the blood vessels and helps prevent mouth sores. It worked for me - no mouth sores! As an aside, I had been to the dentist 2 months earlier and he prescribed sensitive tooth paste to use in the weeks leading up to my BMT to help with cold sensitivity. It helped, and although a bit unpleasant the ice chips were doable! Then, the very next day I got my stem cells infused. They thawed 2 bags of cells out in a bath of warm water and hooked them up on the IV pole. They were a beautiful creamy color!

I had some side effects from the chemo but the Mayo staff had solutions for every problem. Nausea, vomiting, and diarrhea would come and go. I checked in every day at Station 94 and received IV fluids as needed. I was weak and needed a wheelchair so we borrowed one of the many that seem to be everywhere you look. We stayed close by and used the underground tunnel to go back and forth from our extended stay hotel to the Methodist Campus where my appointments were. The tunnel system is climate controlled, carpeted, and well-lit. A nice plus if you happen to be in Rochester during the sometimes harsh winter months!

I had no major complications and was treated as an out patient during our stay in Rochester. I was released to come home 3 weeks after the transplant as my blood counts had recovered to a sufficient level. I had to deal with fatigue, lack of appetite, and some minor leg swelling for a couple of weeks after getting home. I was on a mostly plant based diet before my BMT but started to eat more protein which has helped immensely with my fatigue. I don't go out of the house very much yet due to my weakened immune system but my energy level has retuned to the point I can do all the household chores again. I was able to get Evusheld which gives some protection if I'm exposed to Covid.

I will have my 100 day check-up in July. I feel fortunate that medicine can offer treatments such as stem cell transplants which can offer not only remission of certain diseases, but even cures for other diseases. If a BMT is in your future, my advise is to be kind to yourself. It takes time to recover and everyone's experience will be different. Get plenty of rest, eat well, and stay positive! It really does help with your recovery!! Good Luck!!!

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Hi @countrygirlusa! I’m so happy you’re on the other side of transplant and that everything went really well! The process for collection of cells was interesting to read about. My transplant involved an unrelated donor so that generous guy had to go through the collection process instead of me. I only saw the end results. 😉

No matter how well our transplant team prepares us for the journey, it really helps to have someone who has experienced it first hand to be able to give that unique perspective.
On that note, I’d like to introduce @tml to you. She’s about to go through the same process, an auto transplant, coming up hopefully in July. I know she’ll be reassured by your positive experience!
Thank you for sharing your story!
Knowing you had to travel and remain in Rochester for 6 weeks, what was one thing you brought along with you that you found most valuable during your stay?

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