How long was your recovery after ASCT (stem cell transplant)?

Meg, we often share the same lead up to a transplant starting with the pre-tests, the conditioning chemo then the Hospital for the transplant.
After for me was 25 days after i entered the hospital as i was monitored in house at the City of Hope for 25 days. I did not go home but to my friend's house until i hit 100 days. My caregiver took me to appointments twice a week for nearly the whole time till 100 days. I was in a research study to prevent gvhd. I have not had much of any side effect. I did though have MDS and not leukemia. I had a perfect match unrelated donor.
At City of Hope the twice a week doctor visits went on past 100 days. Went to once a week. Finally at 284 days past transplant it is once a month!! A blood test on Jan 10th showed my liver enzymes were up! My CMV test showed something.
There are so many variables between all of us. I for one did not drink enough water. I had to be hydrated a number of times after 100 days. I learned how to drink enough water. Lori is a monitor on connect who will share i am sure. She said to drink my water at room temp. It is absorbed better by the body.
I started walking early on as i hit about 35 days out.
A day at a time upon awakening is to see how i feel. I touch my forehead for fever and within the hour take the 10 or more pills you must take in the first number of months,
Read the stories on connect about transplant. There are many.

Hi Meg, it looks like you’re having a Autologous Stem Cell transplant in which you’ll be able to use your own cells to help keep you into remission from Multiple Myeloma. That has a shorter recovery time than someone who has an Analogous transplant with donor cells.
While the pre-transplant protocols of testing and preconditioning chemo are similar, you will have the added step of stem cell harvesting to use for your transplant. However, unlike a donor cell transplant, you won’t have to worry about cell rejection or graft vs host disease. So once your newly re-infused blood cells engraft back into your bone and set up housekeeping, the recovery time speeds along nicely with an increase in stamina and energy over the next few months.

I have some reading material for you that hopefully will help give you some insights with recovery for ASCT patients. This was a great discussion started by @jstpeachey after her transplant in July 2023

My Autologous Stem Cell Transplant Journey - Mayo, Phoenix https://connect.mayoclinic.org/discussion/my-autologous-stem-cell-transplant-journey-mayo-phoenix/

Another great resource for you is this Caregiver informational article from Mayo. I believe I have it queued up for the Autologous transplant. If not, just scroll until you see the correct section. There are several resources in the article for caregivers, patients, infection prevention, etc.
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/#Autologous
As @katgob mentioned, we all have different experiences with our recovery. However, there is a difference between an auto and allo transplants. So keep that in mind when you’re search for some recovery stories. Yours will be an auto or autologous transplant.

Meg, will you have to relocate temporarily for your transplant? Do you live near where the procedure will take place?

Hi Meg
My 65 yo husband is day 221 today. He was diagnosed with high risk AML in February 2024, achieved complete remission in April after two cycles of Azacitadine and Venetoclax. His transplant from a German male donor (12/12 match) was on June 12. 2024.
He spent 28 days in the hospital. I was his full time caregiver. The first couple months home were busy with home nurse visits, magnesium infusions, lots of medications to manage, monitoring temperature and blood pressure twice a day, weekly clinic visits, and making food he wanted to eat.
He was able to get outside and walk almost everyday for up to a mile. He also walked a lot while in the hospital. That distance grew with each week home. He napped a lot, but that was expected. He lost 20 pounds since his pre-transplant weight but he is eating whatever he wants, whenever he wants, and trying to gain back muscle with exercise now. He continued to gain his strength and the brain fog from chemo started to lift as Autumn waned. By December he told me he felt like himself again (6 months after transplant). He even looks like his old self to me too. 😊

His last biopsy in December showed no evidence of disease. 🙏 Next one is scheduled in March.

He is tapering the anti-rejection med Tacrolimus now. His chimerism testing is showing a strong graft. So far so good, even though there may be some mouth GVHD brewing which they gave him a steroid rinse for to get a jump on it in case it wants flare up. Be sure to keep your stem cell team aware of any little changes in your symptoms. They want to hear the details in case it is something for them to deal with before it becomes a bigger issue.

We are driving to Florida next weekend to get out of the cold for a month’s stay. He is on maintenance chemo once week per month because of the high risk nature of the AML. So we arranged for him to receive care at a cancer center there. Frankly, I am in awe that we are able to do this and it was a dream I held onto in my heart of hearts when we were preparing for his transplant last May.

We also choose to live one day, one moment at a time. This experience upended our lives (as I’m sure it has done to yours, and so many others here in this forum), sharpened our focus on our priorities, and deepened our gratitude for every breath we take.

Wishing you every positive outcome possible on your health journey! Relax into the care of your medical team and the love of your family and friends. We know how daunting this is, but there is life after this. I also pass along advice his stem cell doctor gave him after the first clean biopsy post transplant which is just as applicable to you now…Dare to Dream.

Keep us posted on how you are doing. We are here if you need advice or support.

Mary