Struggling with decision to move forward with Allogeneic Transplant

What a wonderful post. It sounds like my journey as I cruise to 143 days!!!! I love the Mayo clinic for this forum to let each of us know we are not alone!!!! If one has a supportive spouse, the stress is so much less for the patient. The spouse will need the support that is often part of the transplant journey.
Asto exercise, i started slowly walking while in the hospitals first 30 days, then almost from the day i got to my caregiver's home. At home every day. Just the last week morning and night. The mind and body have come alive. I join 2couples on my walk who show me how this can be a positive strengthener for a relationship.

Hi, Deb. Your original note was just fine. Everyone here knows how overwhelming the diagnosis and treatment is. Some days, during my experience, I couldn’t construct a sentence with a noun and verb to save my life 😊.
This experience is difficult and life-changing, give yourself grace. Focus on one day at a time and let some of the regular world stuff pass you by or if you listen to Taylor Swift, ”Shake it off.”
Best regards, Katie

Hi - I spoke with my transplant dr and we are moving forward with transplant. Likely to be admitted 3/4th week of October. Thank you for all your helpful comments. Im still feeling quite anxious but the potential risks of delaying felt even worse. I may have more questions about the transplant hospitalization and recovery process. Thank you all so much. This group is amazing

Hi Deb, I know that was a big decision for you to make. But now the decision-making weight is off your shoulders and you can move forward. Personally, I feel you’ve made a positive step towards a healthy future. Going into this transplant in good health, before your condition possibly progresses to AML, works in your favor. 😉

My best advice is to not search the internet for information on the transplant. It can lead you down some rabbit holes of mis-information and also fill you with unwarranted stress.
Not to toot our own horn, but stick with Connect because those of us who have walked this path will be good and credible sources of information for you.

Check in with your transplant coordinator to get particulars for your clinic stay. I have a few links for you that aren’t specific to your transplant location but the basics of transplant and post transplant care are the same for all of us. So these guides may help you prepare for returning home, what to anticipate as far as avoiding infections and such.

Here are two of the best comprehensive guides I’ve found for transplant patients and caregivers. The first is from Mayo Clinic where I had my transplant. Take your time to look at the page. There’s tons of information and menus for caregivers and transplant experience.

Also, you will be receiving an allogenic stem cell transplant so skip the auto-transplant portion if you chose to read about the procedure. Keeping in mind, your experience won’t be at Mayo so things may be a little different.
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/support/#ch-tab-navigation
This from Memorial Sloan Kettering:
https://www.mskcc.org/pdf/cancer-care/patient-education/leaving-hospital-after-your-allogeneic-transplant
You will have a new, functioning immune system but it takes a while for it to mature. It will never be as robust as your factory installed immune system but you can have an active, full life with a few precautions to avoid illness such as masking and lots of hand washing. But you’re not turning into ‘bubble boy’ from the Seinfeld episode. LOL.

Do you have any specific questions about, well, anything at all??

Maybe you should talk to some other stem cell patients who have survived the procedure and how they feel post procedure. I’m sure you have explored the data on how many people with your disease process progress to something worse. Good luck with your decision you r in my prayers.

Thanks Lori. This is very helpful. Thanks for offering to answer other questions because I definitely have some 😀

Sorry I’m a little late to the party, but I wanted to chime in with my experience. I had a BMT in July 2020, and I am doing great! My biggest issue post-transplant has been liver enzymes getting out of whack, caused by GVHD. They have gotten elevated three times in 4 years, and once they were “terrifyingly high” and I was hospitalized for a few days. However, now they monitor them regularly and adjust my meds as needed. Otherwise, I am enjoying life as I did pre-transplant - golfing, playing pickleball, going out with friends and family, and traveling. I know it’s scary and you may have some tough days after the transplant, but I found the chemo beforehand to be the worst part of the process. I wish you all the best, and I would be happy to answer any questions you have.

Hi edb, Thank you so much for sharing your experience. It really helps to hear about positive outcomes. I’m slowly feeling a little less anxious thanks to people like you.

I have forgotten to chime in for a few days. deb13. I believe it was my best choice. In the end, i have said on this sight that i was in a research test, it already got to the stage that they were finding it works. The Doctors team asked me if i wanted to talk to the research team. I am not really sure i understood exactly what i said yes to. I think i finally heard or found out when the research team called to check on me. She told me that the pill i took from Day 5 after transplant until Day 100 USED to only be given when a patient got GVHD. By God's grace and with all antirejection pills I did not get any GVHD. They will follow-up on me with my regular blood draws and BMB done now at 6 months, then 1 year.

I found that with a BMT, COH in Duarte California is a lot like Mayo and Sloan Kettering. With MDS, you start with the EDG, ECHO, Lung test, and a number of other tests to make sure your body is fit and ready for this BMT. Being on the healthier side of MDS progression, I did well on all. My bone marrow biopsy showed before my transplant i had MDS. At 100 days past transplant, it showed my donor was nearly 100% in my bone marrow.

I found my Caregiver and the donor was contacted that it was a go. A few weeks after the test i started outpatient chemo for 5 days. Flourbadine (a name close to that. I was in the hospital after that. My Melphalan Chemo i was told on this very site by Lori, would clear out my bone marrow to give my new cells a place to take up residency.
I was reading not all people have the same number of days of conditioning before. Belo2w is what i readon the conditioning.
The overall goals of the conditioning regimen are to:
*Suppress the immune system so that the patient will not reject the new bone marrow
*Make room in the bone marrow for the donor marrow stem cells to grow
*Destroy any residual cancer cells

The most amazing thing about this whole process is that none of it traumatized me. I had had 3 chemo drugs a couple years before, so the effects my body has were known to me. BMT and the chemo i got was done in my 1st twelve days starting with the conditioning. So far not another drop.

Somedays, i am 150 days past transplant, I do not feel much different than by best day before my other cancer. Walking is what they recommend in the first weeks after transplant. Get out of the bed or chair and get moving. Today i will say i am up to 10,000 steps after nearly 4 months. I really do more than that, but i had 6000 and have moved it up. The Mayo site right her will help you through this process. Us new with our transplants and those years down the road. Keep living life all. We are blessed.

Hi Katgob, Thank you for the inspiring story. It’s so helpful to hear from people who have done well. Can you share the name of the pill you were on that helped with preventing GVHD? I’d like to ask my doctors if they use that or something similar. Thank you.