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.

@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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@katgob

I am day 89 past transplant. Crazy. Coming out of the hospital on April 29th, I had no idea how the day-to-day would go. I was given guidance here on this site from Lori and others who shared. Lori lays it all out for the new people waking up to knowing they have MDS or leukemia and wanting to know what will happen. I got to hear about my pre-testing to qualify for my BMT and the hospital and the process many transplant departments use for a bone marrow transplant. All the info was more relevant as it was from someone who walked through the procedure themselves. The booklet I received and the nurse and social worker I talked to had talked from a procedural perspective. Here I got feelings. What would likely take place and how to take it a day at a time. Real experiences like fatigue, nausea and more. To always keep the nurses and the morning visiting Dr. posted. They cannot take action if they do not know.
Just for right know, I have had good results, I am being weaned off a drug I took twice a day since transplant. Also, the other drug I got day 5- 100 has 11 days to go. That 2nd drug used to only be given when a patient had GVHD. Now it is given day 5-100. I was in a research study that gave me the other pill. Both pills to lessen the chance of GVHD. My transplant nurse recently told me that not everyone gets GVHD. My Dr. says they might want me to get something, so my body can fight it off.
Mysisster and brother have been caring for my cats the 95 days i have been out of my house. I picked up my car a couple weeks ago and saw my cat looked like she had fleas. Scratching. It came to pass that she is deeply infested. One flea shot did not work completely as she had mats all across her tummy. OH MY! I tried to work on it, but realized i could cut her. Tomorrow at 9:30 my sister is taking her to the vet. My girl Hazel needs to be shaved. I am thinking and hoping the vet clears the fleas off and trims her, but not entirely. I do have a 2nd cat who also will need the vet likely, but not till i get home. I will ask my sister to help me take him. I do hope my Hazel is going to be ok. She is 12.5 years.
What i know for sure is, i could not have had my transplant without my friend letting me stay with her. I also needed by brother and sister to do the best they could with my house and 2 gatos. I feel blessed to be good today, and hopefully my 100-day Bone Marrow Biopsy will have the results we want. The donor remaining a close to 100% as possible in my marrow.
BMT lets us look at life with the possibility there is a lot more still to come.

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Good morning, @katgob! You remain the ideal model for how this is all supposed to play out from the transplant side of things. The trial you’re in for preventing serious GVHD side effects could be a game changer for many bmt patients. Those of us getting the transplant do need some GVH reaction. That’s the premise behind the transplant and receiving a new immune system from a donor.
Essentially, our old immune systems were defective in recognizing cancer cells for AML, MDS or a host of other blood or bone marrow conditions. The new system should recognize any newly emerging cancer cells from our past condition. When this reaction happens it’s called graft vs tumor effect. So it’s important that there is some reaction taking place. We just need to be mindful of any symptoms or changes in our health and report those to the BMT team for monitoring because small things can get out of control quickly in the first few months

Aw, I’m so sorry about your cat having fleas! That’s horrible and the thing is, if they are in the house, that will take a lot of work to eradicate completely. Diatomaceous earth sprinkled around on furniture and carpets, rubbed in and let sit for a few days kills the fleas. The DE has to be vacuumed and repeated every few days until there are no more sign of fleas. The eggs can lie dormant for years and are activated by heat, such as people walking on the floors, dogs, cats lying on them or even the beater bar of a vacuum can activate. The diatomaceous earth is a desiccant so it dries the eggs and also the sharpness of the diatoms cracks the shells killing fleas and their eggs. LOL yes, this is from experience. My golden loved to lie around on the patio. An over abundance of bunnies one year brought fleas the gift of fleas. Ughhhh!
I can’t believe you’re on day 89 already!! As always, thank you for your updates and spreading the encouragement for others who are about to embark on a stem cell transplant. Sending an air hug!

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@katgob

I am day 89 past transplant. Crazy. Coming out of the hospital on April 29th, I had no idea how the day-to-day would go. I was given guidance here on this site from Lori and others who shared. Lori lays it all out for the new people waking up to knowing they have MDS or leukemia and wanting to know what will happen. I got to hear about my pre-testing to qualify for my BMT and the hospital and the process many transplant departments use for a bone marrow transplant. All the info was more relevant as it was from someone who walked through the procedure themselves. The booklet I received and the nurse and social worker I talked to had talked from a procedural perspective. Here I got feelings. What would likely take place and how to take it a day at a time. Real experiences like fatigue, nausea and more. To always keep the nurses and the morning visiting Dr. posted. They cannot take action if they do not know.
Just for right know, I have had good results, I am being weaned off a drug I took twice a day since transplant. Also, the other drug I got day 5- 100 has 11 days to go. That 2nd drug used to only be given when a patient had GVHD. Now it is given day 5-100. I was in a research study that gave me the other pill. Both pills to lessen the chance of GVHD. My transplant nurse recently told me that not everyone gets GVHD. My Dr. says they might want me to get something, so my body can fight it off.
Mysisster and brother have been caring for my cats the 95 days i have been out of my house. I picked up my car a couple weeks ago and saw my cat looked like she had fleas. Scratching. It came to pass that she is deeply infested. One flea shot did not work completely as she had mats all across her tummy. OH MY! I tried to work on it, but realized i could cut her. Tomorrow at 9:30 my sister is taking her to the vet. My girl Hazel needs to be shaved. I am thinking and hoping the vet clears the fleas off and trims her, but not entirely. I do have a 2nd cat who also will need the vet likely, but not till i get home. I will ask my sister to help me take him. I do hope my Hazel is going to be ok. She is 12.5 years.
What i know for sure is, i could not have had my transplant without my friend letting me stay with her. I also needed by brother and sister to do the best they could with my house and 2 gatos. I feel blessed to be good today, and hopefully my 100-day Bone Marrow Biopsy will have the results we want. The donor remaining a close to 100% as possible in my marrow.
BMT lets us look at life with the possibility there is a lot more still to come.

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Thank you for this post. It is very helpful to hear about your experience as we are heading into stem cell transplant for my husband. Hope all continues to go well for you medically and your kitties get you back soon.

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I am day 89 past transplant. Crazy. Coming out of the hospital on April 29th, I had no idea how the day-to-day would go. I was given guidance here on this site from Lori and others who shared. Lori lays it all out for the new people waking up to knowing they have MDS or leukemia and wanting to know what will happen. I got to hear about my pre-testing to qualify for my BMT and the hospital and the process many transplant departments use for a bone marrow transplant. All the info was more relevant as it was from someone who walked through the procedure themselves. The booklet I received and the nurse and social worker I talked to had talked from a procedural perspective. Here I got feelings. What would likely take place and how to take it a day at a time. Real experiences like fatigue, nausea and more. To always keep the nurses and the morning visiting Dr. posted. They cannot take action if they do not know.
Just for right know, I have had good results, I am being weaned off a drug I took twice a day since transplant. Also, the other drug I got day 5- 100 has 11 days to go. That 2nd drug used to only be given when a patient had GVHD. Now it is given day 5-100. I was in a research study that gave me the other pill. Both pills to lessen the chance of GVHD. My transplant nurse recently told me that not everyone gets GVHD. My Dr. says they might want me to get something, so my body can fight it off.
Mysisster and brother have been caring for my cats the 95 days i have been out of my house. I picked up my car a couple weeks ago and saw my cat looked like she had fleas. Scratching. It came to pass that she is deeply infested. One flea shot did not work completely as she had mats all across her tummy. OH MY! I tried to work on it, but realized i could cut her. Tomorrow at 9:30 my sister is taking her to the vet. My girl Hazel needs to be shaved. I am thinking and hoping the vet clears the fleas off and trims her, but not entirely. I do have a 2nd cat who also will need the vet likely, but not till i get home. I will ask my sister to help me take him. I do hope my Hazel is going to be ok. She is 12.5 years.
What i know for sure is, i could not have had my transplant without my friend letting me stay with her. I also needed by brother and sister to do the best they could with my house and 2 gatos. I feel blessed to be good today, and hopefully my 100-day Bone Marrow Biopsy will have the results we want. The donor remaining a close to 100% as possible in my marrow.
BMT lets us look at life with the possibility there is a lot more still to come.

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Lori and all,
I believe most transplant hospitals have a team that works together. I received a call from a nurse in that department who was checking on me!! She saw i was doing well and asked by a out the Tacro. What was I taking now and when was it ending. She also covered the other drug i was talking day 5-100. Itt is the anti-rejection drug that was paired with the Tacro. Well, she said in the past the drug i take from 5-100 days used to only be given when you had GVHD symptoms. Sometime ago they started giving it for most of the 100- day period. I am going to ask my RN if she knows how long COH has one this.
I asked the transplant nurse about GVHD. I said I have not had any symptoms and if I do not, does that mean I could get them later? She said no, some people never get them! You might be one who does not. On my 100th day after transplant, July 18th, I will have my BMB. We will see how much of my donor is part of me.
This journey if nothing else is a daily thing. My blood work stayed about the same. More water is helping my kidneys!! Seems water is good for all of us with these transplants. Flush out the meds and keep the kidneys from over working.

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Too old to have transplant. No stem cell either😔

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@katgob

Lori,
Thank you for this message. You eased my mind. I figured since I have not had any real GVHD symptoms, once i do, I would let my team know as soon as I know. I was reading over possible side effects and most seem like ones that may come slowly. I had these red spots all over my arms and chest, that an RN said were from the chemo. They went away in the week. That was with my breast cancer.
All of what you said I needed to hear. The part that I need some gvhd so my bodies new cells can stand up and fight. I am reminded as I read your post that what might and likely will happen, has help to handle with a phone call. My Drs. have listened. This Tuesday I will ask about gvhd. How would they like to be notified about new symptoms.
I wrote in my last post of my last cancer from 32 years ago. Ha! 2021. 3 years ago, this July I was diagnosed.
I walked 7000, 3.6 miles.
One of my caregivers was with a lot of people today. I went for a walk, she took a shower and had dinner. I came back and went in my room. They shower and change their clothes and lysol and all that to keep germs away when either one goes out.
Me, I look forward to hearing from more people. I find hope and possibilities as I read your posts.

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Mornin’ Katgob, Lookit you go! I love that you’re walking so much. It really helps speed your recovery along, I think. I walked all the time too (still do) and it really made me feel so much more alive and vital everyday.

A little more about gvhd (graft vs host disease). Before our stem cell transplants, we have our own immune system, with our original factory installed cells. That immune system’s job is to seek out invading cells such as cancer, bacteria, viruses and destroy them. It’s basically the driving force behind our good health.
When we have a bone marrow/stem cell transplant, we get someone else’s immune system. It doesn’t recognize our body at all! It looks at us (the host) as the invader and reacts accordingly. The new immune cells will cruise around the body looking for trouble…sometimes creating their own.

Our doctors do their best to find donors most closely matching to our proteins or HLA markers. Even so there can be some power struggles going on between us (host) and donor cells, until those two learn to play well together!
Eventually, our new cells start recognizing our proteins and adapting to the new environment where the two entities can play together amicably. It can take some time for the adaptation…weeks, months, or in my case it took about 2.5 years. As we joked in our house, despite my perfect donor match “the force is strong with this one”. But the transplant worked and has kept me very healthy.

If there are symptoms of gvhd within the first 100 days it’s generally classified as acute gvhd. After that it gains a ‘chronic’ status. Again, don’t live in fear of developing some gvhd symptoms. For the first 3 months I had no symptoms at all…which I thought was great! However, my doctor was getting concerned that there were no signs. We need some gvhd!

Signs to look for with acute gvhd, will be rashes, particularly on your back or stomach, arms. Nausea, vomiting, cramps.
If any changes occur then let your team know.

I’m so proud of how you’re breezing through this, Katgob, from jumping through hoops to find a support team post transplant to how well you adapt and roll to the changes in your life over the past months. You’re a force! Have lovely day!

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