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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Jun 18 8:57pm | Replies (402)Comment receiving replies
Forty-four days ago, my husband and I went to see his primary care physician. My husband presented to his doctor that he needed a heart stint. His self-diagnosis was based on his shortness of breath and other people's heart stint stories. His primary care doctor didn't say much except, "Go to the emergency room now." So, we left the doctor's office drove past three other hospitals and went to Mayo Clinic's emergency room. Looking back, that was the best decision we made. Because, boy, that diagnosis wasn't even close! The ER doctor told us his heart was fine but something "weird" was going on with his blood.
I now know that Leukemia is not just one disease but an umbrella term for blood cancer. His official diagnosis is B-Cell Acute Lymphoblastic Leukemia with low hypodiploidy. He developed TLS (Tumor Lysis Syndrome) immediately after starting his first round of chemo. That was so much fun, not. The good news is he has reached MRD, his kidneys are recovering, and his immune system is good right now. The bad news is this is a rare B-ALL and the prognosis isn't good. So, Monday, he will start the second round of Chemo and the search is on for bone marrow donors so he can have a SCT.
I have begun my arduous research on HSCT and what to expect. It sounds like a tough road is ahead for both of us. I am not new to caregiving. I spent the last 4 years taking care of my sister who had ALS. I did everything for her. It was an exhausting journey. Her funeral was less than a month before my husband's diagnosis. I was just starting to take care of myself again. And now, here we go again.
If anyone has any advice or information that might help me get through this, please let me know. I am glad I found this message board because I do not want to put this out on my personal social media. It is nice to know that I am not alone.
Replies to "Forty-four days ago, my husband and I went to see his primary care physician. My husband..."
Hi @caregiverx2 I’d like to add my welcome along with @becsbuddy. She tagged me in this conversation because I also had an Allogenic stem-cell transplant, along with several other members. We have a lively, ongoing discussion where you’ll be able to get a ton of information to help navigate you through this journey with your husband…everything from lodging, what to bring for a 3 month stay, how to stay healthy, etc…no subject to big or two small to answer! We have your back.
I’d going to ask our moderator to merge your discussion into this group, which Becky mentioned:
My Bone Marrow Transplant Story; Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
You’ll meet members, @alive @edb1123 @kt2013. jenmkr63 timt347
@jrwilli @katgob and others who have either had a transplant or are caregivers.
Will he be having this done in Mayo Rochester?
Dear Caregiverx2, welcome to the “family”. I am an 11 year survivor of acute myelocytic leukemia (AML) and peripheral stem cell transplant from my sister. I was cared for by Mayo Clinic, so I think you are at the best medical center in the world.
Here are a few things I learned on my journey…
I also thought I needed to research and educate myself on all things about the disease and treatment. What I discovered was it was too overwhelming and I needed to trust that the Mayo team would provide me with the education I would need, based on my cancer and planned treatment. The internet wasn’t a good place for me to hang out, it made me worry more and it was exhausting to try and sort out what applied to me and what didn’t.
Another important lesson for me was to stay in the day. Again, as a world-class worrier, it tried to control what was not within my control. So, I learned to breath through the tough days, then lock them in a closet. And to celebrate every day, good or bad. Being a woman of faith, I leaned into that like never before. And in this, asking for strength and guidance to face each new challenge.
Mayo health care team members were with me every step and that made my path easier and the challenge manageable.
I hope my words will bring you comfort and know that I will keep you and your husband in thought and prayers.
Sending you a sunny day….
That’s a tough diagnosis! I had acute myeloid leukemia 8 years ago and had my stem cell transplant 5 months later. My donor was found in Germany. Recovery after SCT is rough but so well worth it! I also had a number of complications including GVHD, but I am now leading a full life. I have been working full time for the last 5,5 years. I still live with some limitations due to leukemia, chemotherapy and SCT, but I am very glad I received my transplant. I wouldn’t be here without it.
Let me know if you have any specific questions about SCT or the recovery from it.
Im glad you found this site. It has been a god send for me. Lori is a blessing and I have frequently used this site and yes I’m not a social media person and most don’t understand. Hugs
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@caregiverx2 Welcome to Mayo Clinic Connect! I’m so glad you found this site especially given your reluctance to use social media. I’ve posted 2 discussions for you to check out. One is for caregiver advice
https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/
And this one is about the journey. It was started by @loribmt who is a mentor for Mayo Connect. She is great at answering your questions!
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
I hope this will be a good start for you. Please feel free to ask any questions you have! BTW, how did you find Mayo Connect?