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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.

katgob | @katgob | 1 day ago

It has been a while on this thread. I had my 1-month appointment follow-up
Friday the 10th. Blood pressure 110/71. My white cells went back up. Talking with my sister last month i told her i felt slightly like i had a cold so maybe that caused it. For the last month i have worn a mask most places and
I walked 5-6 miles every day. Drank my 80 plus ozs of water and kept my creatinine at .81. Yet, looks like my liver enzymes went up a bit. Oddly, the doctor asked me how many of this one pill i was taking and i said 2. he said take three. The odd thing is the pill he spoke about for the live/gallbladder i stopped months ago. It was not on my list anymore. I was talking about the pill Acyclovir- An antiviral drug-. It slows the growth and spread of the herpes virus in the body. Acyclovir will not cure herpes, but it can lessen the symptoms of the infection.
That one i take twice a day. AH ha!! This did not come to me until i left. I added it to the portal to let him know. Maybe this pill will help. I am going back this week for a blood test. I never took that pill right the months i took it. I seldom remembered the midday pill. This time I will.
The DR. was an hour late. I was bugged. When he came in, I had learned his regular nurse was out and he had a floater nurse. Plus, he had a patient before me that had just lost his home in one of the fires. I think he said it was his transplant patient 2.5 years down the road of recovery. Sometimes he is hard to hear.
He made notes in my chart. I said i am glad something was not right. He did say he would like me to have some GVHD. Well, it all just reminded me one more time that I am a transplant patient. I had my transplant April 9, 2024. To all of you. Sometimes it is hard for me to believe that i had breast cancer in 2021 and MDS in late 2023. I do not wish gvhd symptoms. I had asked the team from transplant research what if i do not have gvhd? I was told that some people do not.
Lori mentioned things just will happen. My next BMB is not for 3 months. That will let me know if i remain all donor.....
Take each day and add laughter and good times. Drink water (half your body weight in ozs) and exercise.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | 1 day ago
In reply to @katgob "It has been a while on this thread. I had my 1-month appointment follow-up Friday the..." + (show)
@katgob

It has been a while on this thread. I had my 1-month appointment follow-up
Friday the 10th. Blood pressure 110/71. My white cells went back up. Talking with my sister last month i told her i felt slightly like i had a cold so maybe that caused it. For the last month i have worn a mask most places and
I walked 5-6 miles every day. Drank my 80 plus ozs of water and kept my creatinine at .81. Yet, looks like my liver enzymes went up a bit. Oddly, the doctor asked me how many of this one pill i was taking and i said 2. he said take three. The odd thing is the pill he spoke about for the live/gallbladder i stopped months ago. It was not on my list anymore. I was talking about the pill Acyclovir- An antiviral drug-. It slows the growth and spread of the herpes virus in the body. Acyclovir will not cure herpes, but it can lessen the symptoms of the infection.
That one i take twice a day. AH ha!! This did not come to me until i left. I added it to the portal to let him know. Maybe this pill will help. I am going back this week for a blood test. I never took that pill right the months i took it. I seldom remembered the midday pill. This time I will.
The DR. was an hour late. I was bugged. When he came in, I had learned his regular nurse was out and he had a floater nurse. Plus, he had a patient before me that had just lost his home in one of the fires. I think he said it was his transplant patient 2.5 years down the road of recovery. Sometimes he is hard to hear.
He made notes in my chart. I said i am glad something was not right. He did say he would like me to have some GVHD. Well, it all just reminded me one more time that I am a transplant patient. I had my transplant April 9, 2024. To all of you. Sometimes it is hard for me to believe that i had breast cancer in 2021 and MDS in late 2023. I do not wish gvhd symptoms. I had asked the team from transplant research what if i do not have gvhd? I was told that some people do not.
Lori mentioned things just will happen. My next BMB is not for 3 months. That will let me know if i remain all donor.....
Take each day and add laughter and good times. Drink water (half your body weight in ozs) and exercise.

Jump to this post

Hi Kat! Reading through your reply just now, I’m wondering if the medication your doctor was referring to is Ursodiol. It’s used as a prophylactic drug against liver/gall bladder damage after a bone marrow transplant.
I just want to make sure I’m reading your message correctly about the Acyclovir. It looks like there was a misunderstanding about upping the dosage of that medication. Don’t increase Acyclovir to 3 pills daily without talking to your doctor/NP. I suspect he thought you were still taking Ursodiol and that he’d have you up the dosage on that medication for your liver. I hope you get some clarification before changing your dosages.
I was on Ursodiol for quite a long time, as well as a drug similar to Acyclovir. I took Valacyclovir instead because the Acyclovir affected my liver.

Some patients don’t have any discernible gvhd symptoms. Your bone marrow biopsy, peripheral smear and your chimeric tests will be important as verification of your transplant status. As long as there’s an underlying reaction taking place where your new donor cells are at work protecting you against a relapse of MDS that’s a good indication of a GVL (graft vs leukemia) reaction…which is the goal.
You’re doing so well, Miss Kat. No fretting at this point! I have faith that your biopsy will come out looking impressive. ☺️.
Stay safe from those terrible fires! It’s awful that one of your doctor’s patients lost their home because of that! I can’t even imagine…

REPLY
1 reply
katgob | @katgob | 18 hours ago
In reply to @loribmt "Hi Kat! Reading through your reply just now, I’m wondering if the medication your doctor was..." + (show)
@loribmt

Hi Kat! Reading through your reply just now, I’m wondering if the medication your doctor was referring to is Ursodiol. It’s used as a prophylactic drug against liver/gall bladder damage after a bone marrow transplant.
I just want to make sure I’m reading your message correctly about the Acyclovir. It looks like there was a misunderstanding about upping the dosage of that medication. Don’t increase Acyclovir to 3 pills daily without talking to your doctor/NP. I suspect he thought you were still taking Ursodiol and that he’d have you up the dosage on that medication for your liver. I hope you get some clarification before changing your dosages.
I was on Ursodiol for quite a long time, as well as a drug similar to Acyclovir. I took Valacyclovir instead because the Acyclovir affected my liver.

Some patients don’t have any discernible gvhd symptoms. Your bone marrow biopsy, peripheral smear and your chimeric tests will be important as verification of your transplant status. As long as there’s an underlying reaction taking place where your new donor cells are at work protecting you against a relapse of MDS that’s a good indication of a GVL (graft vs leukemia) reaction…which is the goal.
You’re doing so well, Miss Kat. No fretting at this point! I have faith that your biopsy will come out looking impressive. ☺️.
Stay safe from those terrible fires! It’s awful that one of your doctor’s patients lost their home because of that! I can’t even imagine…

Jump to this post

Lori,

Yes, it is Ursodiol. I am taking it morning/mid/evening. This time i am taking all three pills. Not forgetting the middle one as i did when i was taking it before. My Dr did forget he took me off it.
Yes, the Acyclovir is still am/pm. I have not changed the dose on that.
I truly hope because in most ways i feel great, my next BMB and all its results will be positive. Ultimately, whatever the results, I know my DR. and the transplant team will be ready to assist with anything that may come up.
The fire is 25 minutes from me and both of those areas are places where people i know lived and places i enjoyed visiting. Eaton is near Monrovia where my brother lives. I have been in Alta Dena many times. All of it is so sad. There was nothing any of them could have done to save their homes. Nothing. It may be a sparked Electric line that started it.

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