Anyone had successful stem cell transplant for AML?

Hi, Lori:

Thanks for following up with me! I am now at Day +204 and feeling great! However, I had a major setback in late November when I developed pneumonia and acute respiratory failure. It started with a bad cough and then shortness of breath and a fever. I was hospitalized on November 24th for 17 days. I was on oxygen at home for a couple weeks and have been on Prednisone since my release to reduce the inflammation in my lungs, but they are gradually weaning me off of that.

I’m not having any symptoms anymore, but I will have a CT chest scan, pulmonary function test, and bone marrow biopsy in two weeks. My last biopsy in late December did not show ANY residual disease for the first time, so I’m hoping for this result again! 😁

Also, the doctor has discontinued the Tacrolimus, anti-rejection drug, so I can now get immunizations that were wiped away by the transplant process. I’m also trying to get the COVID vaccine as soon as possible.

This may be more information than you wanted, but that’s my update! 😁 Thanks again for your concern.

Best regards,
Elaine

@edb1123 Elaine, my goodness, that’s not the news I was expecting. I’m so sorry for that setback with the pneumonia. That had to be beyond scary for you and your family! Early in our transplants when our immune systems are still in the infant stage of developing, we’re so vulnerable and small things can turn nasty in a heartbeat. It’s a relief to hear you’re back on the road to recovery! Are you having any side effects with the Prednisone?

Being off the Tacrolimus will at least allow your new immune system to jump to the rescue from now on! Are you still taking any other meds? When you’re off the Tacro and vaccinated, I think you’ll be able to drop a few of those too! Lucky girl! I’m still on .5mg of Tacro daily, along with the assorted colorful blend of pills and will be for some time yet. Long story there for another time. But I was finally able to go ahead and start my immunizations in October anyway and just had the second round the end of January. One more round to go in April and I’ll be an adult! LOL. Now to get the Covid Vax, but must wait a month after the other vaccinations.

Wishing you all the best on your upcoming BMBX, the CT and the PFT. Please feel free to continue to share your transplant story on Mayo Connect. Truly, there are others in this Community who benefit from the experiences we share. Best, Lori.

Hi, Lori:

The only side effect I’ve had from the Prednisone is an increased appetite, which was a good thing as I had not felt like eating while I was sick. I take it in the morning so it hasn’t affected my sleep. I am still on anti-fungal, anti-viral, antibiotic medications and another to protect my liver. It sounds like several of these may be discontinued in the next few weeks.

If the biopsy shows any signs of MRD (minimal residual disease), they will probably start shots of Vidaza (chemo) again. I had them in November, right before I got pneumonia. Vidaza has shown to be effective in reducing/eliminating MRD, and my Oncologist may decide to use this to keep the AML from coming back. Hopefully, I won’t need it! 😉

Thanks again for letting me share my story - I hope it is helpful for others.

Elaine

I had 2 stem cell transplants 1st July 4th 2016 and December 25th June of 2017 is when I went into remission. Both times were a 2 weak stay in the hospital. Wasn't to bad except for the food

Hi @justnate welcome to Mayo Clinic Connect. We’re an online community forum where members come together to use our shared experiences to help find answers, offer suggestions or just Connect with each other.
What brought you to Connect? Were you searching for anything in particular?

First, congratulations on your 2nd stem cell transplant being successful! How are you doing now, years after transplant? Any GVHD issues?

Would you mind sharing your stem cell story with me? What medical condition prompted the transplant? I had Acute Myeloid Leukemia and thankfully it is in full remission with my transplant from June 2019. Because of the aggressiveness of the leukemia I required an allogenic transplant from an unrelated donor. Was yours an allogenic transplant or were you able to use your own cells?

Your last line; “It wasn’t too bad except for the food” made me chuckle. You were really lucky if that was your chief complaint! Plus being in the hospital only 2 weeks!

I hope you share your story! You never know who you might encourage along the way.

I had an allo transplant for treatment-related AML in 2013 and am doing well. My primary cancer is multiple myeloma which I’ve had for 29 years. It has no cure, yet. I do deal with GVHD and other cancer side effects. Our approaches to living with these are described in a book I wrote. The profit goes to charity. The book website is Arenamanbook.worldpress.com

I was blessed to have been able to use my own stemcells.

Sorry it was multiple myeloma what is strange, after my 2nd covid shot in April my kappa free light chain when up significantly from 2.2 to 5.25 will be meeting with my doctor to discuss

My multiple myeloma has stayed in remission over the last of my 29 years, and was not impacted by my Covid shots.

@justnate Oh you were fortunate to be able to use your own cells. It makes the transplant so much gentler on the system and you don’t have the issues of graft vs host because they are not foreign to your immune system. I’m so happy everything went well for you and that you’re in remission!

It’s interesting that your kappa free light chain was elevated after the vaccine. How frequently do you have blood work done? Has it changed since the first elevated reading?
I had some elevated readings in a blood panel within 2 weeks after my second vaccine as well. (not KFLC) After talking with my transplant doctor, he was not concerned at all and related it to my immune system responding. He was right, the numbers all returned to normal within 2 weeks.
We’re just so attuned to our bodies after all we’ve gone through to become ‘normal’ any fluctuations have us raising eyebrows! When is your doctor’s appointment? It will be interesting to hear what they had to say.