1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy
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 Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

dwolden | @dwolden | Jul 11 2:40pm
In reply to @katgob "Well, I got news from my sister, that my cat died early this morning. Honestly, what..." + (show)
@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 | @katgob | Jul 12 12:29am

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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ffb1234 | @ffb1234 | Jul 13 9:06am

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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2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Jul 13 9:34am
In reply to @ffb1234 "Good Morning and thanks for reaching out to my post. I did not have a donor..." + (show)
@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.

Jump to this post

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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myfablife | @myfablife | Jul 14 10:24am
In reply to @ffb1234 "Good Morning and thanks for reaching out to my post. I did not have a donor..." + (show)
@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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katgob | @katgob | Jul 16 8:38pm

I am at my 98th day after transplant. I saw my doctor today and he super thrilled with my progress. My numbers remain steady, and he is working me off Taco with two days this week and 1-day next week. My other anti-rejection pill has a last day this Thursday. He is checking on that for my Friday visit. My VAD nurse Christian asked when I was getting out my PICC line. I asked the Doctor, and he said if I do not mind getting stuck once a week for 3 weeks and once every 2 weeks after that then his NP will remove it Friday. I think he is more excited by my continued recovery than me. One more patient they just may have saved. My creatinine again is a bit too high. A result mostly from the Bactrim i am taking. Hard on the kidneys. So today he said he wants me to get hydration. I got it in an open bed in the children's oncology unit. Geez. Two young kids i saw and two teens. Then one in remission going to college. I can see their attitude is what keep them going. My RN says the younger ones do better as they just do what is asked her and they make friends with the staff very easily.
I chatted with my RN and found she lives in my town. She adopted a dog from the rescue in my town. It was a nice one hour.
I plan to go home on Friday. Crazy. I have been their 4 times in the last 3 weeks, not ever thinking my little cat Hazel would not be there to greet me. That will be something to walk through one day at a time.
With MDS- Myelodysplastic syndrome, I did not have the added weight of cancer cells to fight at first. Yet, every hematology doctor in the cancer department is looking for ways to sure. They will have a treatment plan if you have cancer or the effects of. I feel like my last 3 years have swirled by with diagnosis in June of 2021 for one cancer and up to today, with a bone marrow transplant 98 days ago because of MDS. I still have some tiny nodules; 2 in my lungs they are going to watch. I am not thinking cancer, and i figure the doctors reading the scans every 6 moths will now what is what. I have not had any breathing concerns as of now. a 3rd little spot has been in my lungs for 30 years. For today, other things are in my path to do.
This Thursday is my 100-day bone marrow biopsy. Having such good blood numbers nearly the whole 100 days i hope my body has remained free of the old me blood cells and let the new guy make it home. He is 26 and we want him in our bone marrow. So, for now, I hope all of you that are posting are doing well and taking it a day at a time. To those who do not post, keep reading to give you courage to possibly post.

REPLY
2 replies
dwolden | @dwolden | Jul 17 5:31pm
In reply to @katgob "I am at my 98th day after transplant. I saw my doctor today and he super..." + (show)
@katgob

I am at my 98th day after transplant. I saw my doctor today and he super thrilled with my progress. My numbers remain steady, and he is working me off Taco with two days this week and 1-day next week. My other anti-rejection pill has a last day this Thursday. He is checking on that for my Friday visit. My VAD nurse Christian asked when I was getting out my PICC line. I asked the Doctor, and he said if I do not mind getting stuck once a week for 3 weeks and once every 2 weeks after that then his NP will remove it Friday. I think he is more excited by my continued recovery than me. One more patient they just may have saved. My creatinine again is a bit too high. A result mostly from the Bactrim i am taking. Hard on the kidneys. So today he said he wants me to get hydration. I got it in an open bed in the children's oncology unit. Geez. Two young kids i saw and two teens. Then one in remission going to college. I can see their attitude is what keep them going. My RN says the younger ones do better as they just do what is asked her and they make friends with the staff very easily.
I chatted with my RN and found she lives in my town. She adopted a dog from the rescue in my town. It was a nice one hour.
I plan to go home on Friday. Crazy. I have been their 4 times in the last 3 weeks, not ever thinking my little cat Hazel would not be there to greet me. That will be something to walk through one day at a time.
With MDS- Myelodysplastic syndrome, I did not have the added weight of cancer cells to fight at first. Yet, every hematology doctor in the cancer department is looking for ways to sure. They will have a treatment plan if you have cancer or the effects of. I feel like my last 3 years have swirled by with diagnosis in June of 2021 for one cancer and up to today, with a bone marrow transplant 98 days ago because of MDS. I still have some tiny nodules; 2 in my lungs they are going to watch. I am not thinking cancer, and i figure the doctors reading the scans every 6 moths will now what is what. I have not had any breathing concerns as of now. a 3rd little spot has been in my lungs for 30 years. For today, other things are in my path to do.
This Thursday is my 100-day bone marrow biopsy. Having such good blood numbers nearly the whole 100 days i hope my body has remained free of the old me blood cells and let the new guy make it home. He is 26 and we want him in our bone marrow. So, for now, I hope all of you that are posting are doing well and taking it a day at a time. To those who do not post, keep reading to give you courage to possibly post.

Jump to this post

I’m learning so much from your posts. My husband is scheduled to start pretransplant testing for allogenic stem cell transplant next week. I’m so glad to hear about how beell things are going for you, it gives me hope and I’m telling my husband all about it.
Please keep posting.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jul 17 6:13pm
In reply to @katgob "I am at my 98th day after transplant. I saw my doctor today and he super..." + (show)
@katgob

I am at my 98th day after transplant. I saw my doctor today and he super thrilled with my progress. My numbers remain steady, and he is working me off Taco with two days this week and 1-day next week. My other anti-rejection pill has a last day this Thursday. He is checking on that for my Friday visit. My VAD nurse Christian asked when I was getting out my PICC line. I asked the Doctor, and he said if I do not mind getting stuck once a week for 3 weeks and once every 2 weeks after that then his NP will remove it Friday. I think he is more excited by my continued recovery than me. One more patient they just may have saved. My creatinine again is a bit too high. A result mostly from the Bactrim i am taking. Hard on the kidneys. So today he said he wants me to get hydration. I got it in an open bed in the children's oncology unit. Geez. Two young kids i saw and two teens. Then one in remission going to college. I can see their attitude is what keep them going. My RN says the younger ones do better as they just do what is asked her and they make friends with the staff very easily.
I chatted with my RN and found she lives in my town. She adopted a dog from the rescue in my town. It was a nice one hour.
I plan to go home on Friday. Crazy. I have been their 4 times in the last 3 weeks, not ever thinking my little cat Hazel would not be there to greet me. That will be something to walk through one day at a time.
With MDS- Myelodysplastic syndrome, I did not have the added weight of cancer cells to fight at first. Yet, every hematology doctor in the cancer department is looking for ways to sure. They will have a treatment plan if you have cancer or the effects of. I feel like my last 3 years have swirled by with diagnosis in June of 2021 for one cancer and up to today, with a bone marrow transplant 98 days ago because of MDS. I still have some tiny nodules; 2 in my lungs they are going to watch. I am not thinking cancer, and i figure the doctors reading the scans every 6 moths will now what is what. I have not had any breathing concerns as of now. a 3rd little spot has been in my lungs for 30 years. For today, other things are in my path to do.
This Thursday is my 100-day bone marrow biopsy. Having such good blood numbers nearly the whole 100 days i hope my body has remained free of the old me blood cells and let the new guy make it home. He is 26 and we want him in our bone marrow. So, for now, I hope all of you that are posting are doing well and taking it a day at a time. To those who do not post, keep reading to give you courage to possibly post.

Jump to this post

Hi @katgob! Whoo whoo! Tomorrow will be the big 100 day CELLebration! I know, it feels like a magical number so far in the future when you’re at Day 0!

You’ve done remarkably well and I’m so proud of how you’ve persevered through this entire process! It wasn’t easy to get all your ducks in a row with not having one designated care giver. Your sheer determination had you going to great lengths to make this all work out! You have a wonderful support system with friends and family. I am so profoundly sorry for the loss of your sweet little kitty, Hazel, though. That was unexpected and very tragic. That will somewhat mar you return home. But knowing your spirit of survival, you’ll find a way to cope with her loss and find a new rhythm to your home and 2nd chance at life.

I giggled with your 26 year old who resides with you! Hahah yes, I have a 20 year old in my bones…well, now he’s 25. 😉 I swear my donor gave me the gift of youth, besides the gift of life. At 70, I feel like I’m in my 20s with the level of energy I have. Though I haven’t had any desires for greasy pizza or cheap beer and I don’t wear AXE pit spray or body wash. LOL.
I’m also so grateful for all the updates you’ve been giving along the way. We are all part of the proverbial “village” that takes care of everyone else. We never know who will be reading our stories of what we’ve gone through and overcome, and then making it their own survival guide!
By sharing our experiences we can offer hope and encouragement to countless others about to embark on this odyssey! Wishing you continued success and keep posting these updates!
And Welcome Home, Friday! Be it ever so humble, there’s no place like it. ☺️ Sending an air hug!!

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katgob | @katgob | Jul 17 7:50pm
In reply to @dwolden "I’m learning so much from your posts. My husband is scheduled to start pretransplant testing for..." + (show)
@dwolden

I’m learning so much from your posts. My husband is scheduled to start pretransplant testing for allogenic stem cell transplant next week. I’m so glad to hear about how beell things are going for you, it gives me hope and I’m telling my husband all about it.
Please keep posting.

Jump to this post

dwolden,
Please keep us posted. Never let a day go by without keeping your RN informed. The pretransplant is a perfect place to start. The RN's help each and every one of us. I have written their names down to give them thanks through "Daisy Awards" we get from their work so patients can say they have been a blessing. With my last VAD appointment, due to my PICC line coming out, I am noting the nurses that helped me with questions answered and thoughtful advice and help. I wrote names down, but just in case i am checking the board with the faces of all the nurses in this department. Friday is my last day getting their help.
I pray your husband walks through it a day at a time and you beside him will be his blessing. And i hope, you have not and will not go in the room and watch a bone marrow biopsy. I have been told by family that watching was tons worse than getting one. If you must, look away. 🙂
Your kind words have made my day.

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1 reply
marylou329 | @marylou329 | Jul 20 7:03pm

Hi Lori,
I just got my dates for my Stem Cell transplant at Dana Farber in Boston. I will be having my Central line placed on August 29. I am having it done as an Out Patient procedure. I will get my new stem cells on September 6th. My unrelated donor is 37 year old female with a 10/10 match.
I will be relocating to Boston for a Month and staying at a Homewood Suites with my husband as my care taker. I am excited and scared at the same time.
Any insight you can provide would be greatly appreciated.
Also I remember reading a list you had about what to bring for the month long stay. If you could provide the link it would be helpful.

Thank You
Mary Lou

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