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.

tlsorbet | @tlsorbet | Sep 16 8:42pm

In reply to @tlsorbet "@davi0937 they have to make sure your cancer is irradicated from your bone marrow before giving..." + (show)

@tlsorbet the reason I suggest you make another appointment and get those questions answered is because it you who has to live with the results and if they are poor they don’t care.

davi0937 | @davi0937 | Sep 17 7:49am

In reply to @tlsorbet "@davi0937 they have to make sure your cancer is irradicated from your bone marrow before giving..." + (show)

@tlsorbet Thank you! That is a great recommendation. I will check it out. I have PMF with rare MPL and SRSF2 mutation. This combination means more fibrous issues in marrow and significant anemia. It’s also very slow to move to next stages like blasts, sweats, itching. My spleen is not at a size that I would start a Jakofi. According to the Transplant MD at the consulting center this is a good time to transplant because the spleen can impact the donor cell chimera. I appreciate your help. Thank you

anitasharma | @anitasharma | Sep 17 10:01am

In reply to @loribmt "@anitasharma I’m just heartbroken for your family with this latest update. I know it feels hopeless..." + (show)

@loribmt
So finally the Doctors started giving him VENCLEXTA along with injection on the skin keeping him into hospital for another week to see the reaction in the body as well. They said the response is good about 76% overall .Please pray for him ,I know each blessings count .
If this work good on him then they discharged and further continue with each week cycle.
I am just worrying for future treatment once it stopped working on him .
I also researched for Clinical Trail in Canada but as per Doctors in Canada the clinical Trails don't offer any treatment for my husbands Cancer which is T-CELL Leukemia .
I am here to ask if anyone knows USA Clinical Trails does gives further treatment this type of leukemia and what would be best way to registered there and cost and all .
Please help !
keep fighting all beautiful peoples here .
you all are amazing

tlsorbet | @tlsorbet | Sep 17 12:09pm

In reply to @davi0937 "@tlsorbet Thank you! That is a great recommendation. I will check it out. I have PMF..." + (show)

@davi0937 It sounds like your Doctor is trying to get ahead of it by doing the transplant now. I will keep you in my thoughts and prayers.

tlsorbet | @tlsorbet | Sep 17 12:17pm

In reply to @anitasharma "@loribmt So finally the Doctors started giving him VENCLEXTA along with injection on the skin keeping..." + (show)

@anitasharma Great Ormond Street Hospital I believe it is in the UK. Base Edited CAR T Therapy.

Lori, Volunteer Mentor | @loribmt | Sep 18 9:27am

In reply to @anitasharma "@loribmt So finally the Doctors started giving him VENCLEXTA along with injection on the skin keeping..." + (show)

Good morning, @anitasharma
It sounds like your husband is receiving Venetoclax and Vidaza (azacitidine) injections. According to a quick search in American Society of Hematology, this combination of drugs has been an effective salvage regimen for people with relapsing T-ALL. https://ashpublications.org/blood/article/142/Supplement%201/1501/501396/Venetoclax-Combined-with-Azacitidine-Was-Effective

I’ve been looking for a few more possible clinical trials for you. I did come up with this link from the Leukemia Research Foundation. They have a great deal of information on searching for clinical trials, financial aid, etc.
Here’s the website…there are several links included it their article:
Leukemia research foundation.
https://leukemiarf.org/clinical-trials/find-a-clinical-trial/
~~~
Another article that may be helpful?
Developing Targeted Therapies for T Cell Acute Lymphoblastic Leukemia/Lymphoma
https://pmc.ncbi.nlm.nih.gov/articles/PMC11748120/
Dearheart, I’m sure this is feeling so overwhelming and surreal…hoping this had all been behind your family now. But these relapses can happen and your husband’s doctors are meeting the challenges. I’m sending prayers for continued success in your husband’s treatments and for you to remain strong and positive! Your husband has a powerful support system. ☺️

anitasharma | @anitasharma | Sep 21 10:10am

In reply to @loribmt "Good morning, @anitasharma It sounds like your husband is receiving Venetoclax and Vidaza (azacitidine) injections. According..." + (show)

@loribmt
You are just like Angel for so many people here .
Thank you so much for your response and support always .
The doctors are very confident that the present treatment is working good for him.
I do contacted Fred Hutch Cancer Center which is in Seattle, Washington. They treats relapsed adults with lymphoblastic Leukemia including T-Cell ALL ,following a prior bone marrow (stem cell transplant). I don't know much of it like who is going to bear the cost ,hospitalization and other stuffs.
I am just worried for the future . anyways keep him in your prayers .
I will surely look for these Links which you shared .
thank you once again . I will be in touch
take care you all lovely peoples .stay blessed always

jrhino860 | @jrhino860 | Sep 21 12:04pm

In reply to @edb1123 "Hi, Lori: My story began one year ago on Jan. 25th, a year to the day..." + (show)

@edb1123

Hi, Lori:

My story began one year ago on Jan. 25th, a year to the day after my husband’s diagnosis of a malignant tumor in his sinus cavity. In December, 2019, I decided to retire early at age 60 because of his diagnosis, wanting to spend more time with him (although he was cancer-free by then). We planned to spend the month of February, 2020 in the Palm Springs area. However, I was experiencing shortness of breath after going up stairs and very fatigued, which was very unusual for me. I went to Urgent Care just 4 days before we were scheduled to leave for Palm Springs. After several tests, I was told I had Acute Myeloid Leukemia, and that I needed to be admitted to the hospital for “about a month”! Of course we were both shocked and felt like it was a cruel joke -one year after my husband’s diagnosis? We knew nothing about this disease, but we quickly learned that chemo would be needed to get me into remission before a bone marrow transplant could be done. We were also told that we would have to relocate to Rochester for 100 days so we would be close to the Mayo Clinic.

Unfortunately, the first induction chemo (7+3) only killed off about 50% of the disease, so I had to have another chemo regimen (MEC). That treatment got me down to about 15%, but not low enough for the transplant, so they put me on Venetoclax (Venclexta) and shots of Vidaza (Azacitidine). These two drugs got me down to less than 1%, low enough for the transplant.

My BMT was scheduled for mid-June in Rochester, so we rented a condo there for 3 months and went down on June 1st for testing. Unfortunately, the cytogenetic test results showed two abnormal chromosomes, so the BMT doctor decided to postpone the transplant and put me back on the “two V’s” to kill them off. We moved back home to the Twin Cities for a month and then moved back to Rochester for the transplant on July 22nd. It was really disappointing to postpone the transplant because we had mentally and emotionally prepared ourselves for the move and the 100-day stay, only to go home for a month and then pack up all over again!

The transplant itself was very anticlimactic - done in less than an hour, just like a blood transfusion. Afterwards, however, I had issues such as mouth sores, lack of appetite, weakness, light-headedness, diarrhea, rash, and nausea/vomiting. This lasted for about a month and then got better. Some of this was related to meds, some to GVHD. During this time, I was going into the clinic every day (and was hospitalized for 12 days due to a fever), but eventually was going twice/week.

My recovery was going so well after a couple months that the doctor let us move home about 3 weeks early. I was walking up to 2 miles a day, eating and sleeping well, and not having many side effects. However, we had to isolate ourselves from friends and family due to COVID. I was very lucky to have a retired husband as my caregiver who could pick up and move at any time, and drive me to the daily, biweekly, and bimonthly. We are lucky to live 1-1/2 hours from Rochester, so we can usually drive down and back for tests and checkups in one day.

Unfortunately, I developed pneumonia and acute respiratory failure in late November and was hospitalized for 17 days, part of the time in ICU. After being released from the hospital, I was very weak from being in bed all that time, so I had to rebuild my strength and gain back some weight. I now feel like I’m back to 100% but it has taken almost two months. Of course, I would like to do more and see more people because I’m feeling good now, but COVID is preventing that.

Needless to say, it has been a very long, stressful journey since my diagnosed a year ago, but I am thankful and lucky to have a devoted caregiver and a large support system of family and friends who have helped us throughout. My only advice for others going through this is to focus on one day at a time. There will be twists and turns, but that is out of your control, so just take things as they come.

Thanks!
edb1123

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@edb1123
How old were you when you had theBMY

jrhino860 | @jrhino860 | Sep 21 12:05pm

BMT

janetlen | @janetlen | Sep 22 1:35pm

In reply to @anitasharma "@loribmt I would just like to tell you the Doctors are uncertain about the next treatment..." + (show)

@anitasharma I am sorry to hear this outcome. Praying for your husband, you, and your family. I just heard yesterday that my cancer is coming back after BMT. I find out Oct 15 whether the DLI is available to me.

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