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.

@ffb1234

Good Morning and thanks for reaching out to my post. I did not have a donor for my BMT, I supplied my own cells. My story goes back to September 2022. I had a stress test and failed it, my luck! I ended up having a quad bypass done on September 29th. During the work up for that they found my carotid artery on the left side was 70% blocked. So after recovery from the heart surgery I have the carotid surgery. It was during that surgery they found a node that was large. Sent it for review and it came back I had Mantel Cell lymphoma. Started chemo in April 2023 and had the BMT December 2023. To say that was a challenge is an understatement. I have been battling that since. I am on maintenance every other month for two years. All my cells are way below where they should be and as I stated in my last post the RBC have fragmented and have bite cells also. So we are working to figure that out. I have to also state my doctors and nurses have been fantastic. Love them. I have an amazing support group and I have my faith. With all that has happened in the last two years I am blessed to wake up each day to the wonders of life. Now just get over this next hurdle and I will be looking forward to my 66th birthday and seeing what is in store each day. Hope you have a blessed day.

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ffb1234, so awesome to hear you are doing so well, I to was given a second chance in 2020 w/aLTP.
I was dx. w/AML with a mutation in 3/24 devastating news. I went to 2 facilities to get second opinions but regrettably not accepted. Would have been my best option. I am in remission right now🙏🏻🙏🏻it will continue, I have a biopsy coming up soon to.
I wish you nothing but the best w/your second chance at life to. Live it to the fullest 😊💚

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@ffb1234

Good Morning and thanks for reaching out to my post. I did not have a donor for my BMT, I supplied my own cells. My story goes back to September 2022. I had a stress test and failed it, my luck! I ended up having a quad bypass done on September 29th. During the work up for that they found my carotid artery on the left side was 70% blocked. So after recovery from the heart surgery I have the carotid surgery. It was during that surgery they found a node that was large. Sent it for review and it came back I had Mantel Cell lymphoma. Started chemo in April 2023 and had the BMT December 2023. To say that was a challenge is an understatement. I have been battling that since. I am on maintenance every other month for two years. All my cells are way below where they should be and as I stated in my last post the RBC have fragmented and have bite cells also. So we are working to figure that out. I have to also state my doctors and nurses have been fantastic. Love them. I have an amazing support group and I have my faith. With all that has happened in the last two years I am blessed to wake up each day to the wonders of life. Now just get over this next hurdle and I will be looking forward to my 66th birthday and seeing what is in store each day. Hope you have a blessed day.

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Oop, my bad! Sorry, you know what they say about ‘assuming’. LOL. I shouldn’t have assumed it was an allo transplant. So, you were able to have an autologous transplant using your own cells. You have the added advantage of not having to be concerned about potential side effects of donor cells but the recovery can still be challenging…to say the least, right?
Thank you for sharing your story with us. You’ve had quite a medical adventure the past couple of years with the quad bi-pass and then discovering you had Mantle Cell Lymphoma! I’m happy to hear you’re doing well even though there are a few little hiccups along the way. Things like this do bring a different perceptive to life, don’t they? We’re just grateful for each day and accept each as a gift.

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Good Morning and thanks for reaching out to my post. I did not have a donor for my BMT, I supplied my own cells. My story goes back to September 2022. I had a stress test and failed it, my luck! I ended up having a quad bypass done on September 29th. During the work up for that they found my carotid artery on the left side was 70% blocked. So after recovery from the heart surgery I have the carotid surgery. It was during that surgery they found a node that was large. Sent it for review and it came back I had Mantel Cell lymphoma. Started chemo in April 2023 and had the BMT December 2023. To say that was a challenge is an understatement. I have been battling that since. I am on maintenance every other month for two years. All my cells are way below where they should be and as I stated in my last post the RBC have fragmented and have bite cells also. So we are working to figure that out. I have to also state my doctors and nurses have been fantastic. Love them. I have an amazing support group and I have my faith. With all that has happened in the last two years I am blessed to wake up each day to the wonders of life. Now just get over this next hurdle and I will be looking forward to my 66th birthday and seeing what is in store each day. Hope you have a blessed day.

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dwolden.
Thank you. I had no idea my cat has so many fleas on her. It is a reminder to look over our animals. My cats are inside. They have never had fleas. I expected my 2 siblings to watch over my cats. Noone noticed my girl lost 4 pounds. It is a reminder that life gives us things just like this. We cannot go back and look at what if? It does nothing. We have today to do those things that need to be done. For me, sleep.

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@katgob

Well, I got news from my sister, that my cat died early this morning. Honestly, what a way to start the day. I am day 91. My sister who called me is the one who had ovarian cancer. In my journey through this MDS, this is my roughest part so far. I could not be with my cats and sadly, they did not get the attention they usually got from me. I realize in our lives, that some things happen that we can never know or plan for. Our bodies have issues. Cancer and so much to walk through.
Some people find it odd when people say their pets are like family. My Hazel cat was a fluffy white girl with one blue and one green eye. Only a 10 pounder, up until I left for treatment, my other fluffy cat chased her. I had a cat video camera, so i have watched her and the other cat Simba get to be more friends.
My caregiver reminded me i am not supposed to be around pets just now. To anyone who has pets, give them an extra bit of love today.

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I’m so sorry for your loss. At one time we had five cats (when my child was nine, we did volunteer work at a shelter and there you have it). All have since passed and we miss having a cat. I told my husband after he recovers from stem cell transplant we can get a kitten.
Bless you and the memory of your dear kitty.

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@katgob

Well, I got news from my sister, that my cat died early this morning. Honestly, what a way to start the day. I am day 91. My sister who called me is the one who had ovarian cancer. In my journey through this MDS, this is my roughest part so far. I could not be with my cats and sadly, they did not get the attention they usually got from me. I realize in our lives, that some things happen that we can never know or plan for. Our bodies have issues. Cancer and so much to walk through.
Some people find it odd when people say their pets are like family. My Hazel cat was a fluffy white girl with one blue and one green eye. Only a 10 pounder, up until I left for treatment, my other fluffy cat chased her. I had a cat video camera, so i have watched her and the other cat Simba get to be more friends.
My caregiver reminded me i am not supposed to be around pets just now. To anyone who has pets, give them an extra bit of love today.

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@katgob Good morning, I am so very sorry for your loss. I understand your grief and know how deeply it is felt. It is painful and difficult, especially at this time in your life. I hope you can take a wee bit of comfort from the years of love and comfort you gave each other. You are a good cat mom. What a beautiful girl she was! You will see your other sweet kitty soon. Sending hugs….

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@katgob

Well, I got news from my sister, that my cat died early this morning. Honestly, what a way to start the day. I am day 91. My sister who called me is the one who had ovarian cancer. In my journey through this MDS, this is my roughest part so far. I could not be with my cats and sadly, they did not get the attention they usually got from me. I realize in our lives, that some things happen that we can never know or plan for. Our bodies have issues. Cancer and so much to walk through.
Some people find it odd when people say their pets are like family. My Hazel cat was a fluffy white girl with one blue and one green eye. Only a 10 pounder, up until I left for treatment, my other fluffy cat chased her. I had a cat video camera, so i have watched her and the other cat Simba get to be more friends.
My caregiver reminded me i am not supposed to be around pets just now. To anyone who has pets, give them an extra bit of love today.

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I’m so sorry for your loss. After my BMT, I missed my furry babies so much. When I did get to go home, my dog didn’t want anything to do with me. My feelings were so hurt because all I wanted was to love on her. My cats were so happy to see me. Eventually, my dog came around. Pets are family and plus they are good for your mental health while you are recovering. Lots of hugs to you and keep the faith.

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@katgob

Well, I got news from my sister, that my cat died early this morning. Honestly, what a way to start the day. I am day 91. My sister who called me is the one who had ovarian cancer. In my journey through this MDS, this is my roughest part so far. I could not be with my cats and sadly, they did not get the attention they usually got from me. I realize in our lives, that some things happen that we can never know or plan for. Our bodies have issues. Cancer and so much to walk through.
Some people find it odd when people say their pets are like family. My Hazel cat was a fluffy white girl with one blue and one green eye. Only a 10 pounder, up until I left for treatment, my other fluffy cat chased her. I had a cat video camera, so i have watched her and the other cat Simba get to be more friends.
My caregiver reminded me i am not supposed to be around pets just now. To anyone who has pets, give them an extra bit of love today.

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Aww, my dear I’m so sorry for your loss. What a beautiful cat! Lookit that sweet face. My heart is breaking for you, @katgob. I truly understand the emotional bond we have with our pets. They are a source of unconditional love and leave a hole in our hearts 100 times their size when they pass away.
This has to be even more stressful for you knowing that you couldn’t be there for her. Your caregiver is right, you really shouldn’t be around pets right now. They are a source of bacteria that should be avoided during your early days of transplant, especially not cleaning a litter box. I hope your sister will spend some more quality time with your other kitty because she will surely miss her little buddy.
Sending you a gentle hug, my friend. 😢

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Well, I got news from my sister, that my cat died early this morning. Honestly, what a way to start the day. I am day 91. My sister who called me is the one who had ovarian cancer. In my journey through this MDS, this is my roughest part so far. I could not be with my cats and sadly, they did not get the attention they usually got from me. I realize in our lives, that some things happen that we can never know or plan for. Our bodies have issues. Cancer and so much to walk through.
Some people find it odd when people say their pets are like family. My Hazel cat was a fluffy white girl with one blue and one green eye. Only a 10 pounder, up until I left for treatment, my other fluffy cat chased her. I had a cat video camera, so i have watched her and the other cat Simba get to be more friends.
My caregiver reminded me i am not supposed to be around pets just now. To anyone who has pets, give them an extra bit of love today.

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Day 90!
Cat to the vet and fleas did all the ugly stuff to her. She had a blood test to, so like ours, I hope her results are manageable. She is 12 1/2 years old. Thank you for the info too. I am going to google it and see where i can get it! We have not had fleas for 30 years in my house. Me being away with two visiting siblings meant no one caught it!! But one of them brought them in on their shoes!!!

For sure my Hematology Dr wants some issue to come up and I expect he will have something up his sleeve if my donor is still 100% or near that for my BMB. I will be on the lookout as i go home on the 18th or the 19th. Crazy!
I was really bugged that my NP was a floater, so I am getting a new one. They cover others on maternity leave. She has just been kind and attentive. I met the new NP and she knows to check my past history so she can talk to me knowing some past history. I met her Friday and asked her to do this for me.

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