Anyone go through duv/romi treatment before an allogenic BMT?

Hi @coloradored. I’ve read several books regarding bone marrow/stem cell transplants from perspective of patients and doctors. This is by far the best!
Living Medicine: Don Thomas Marrow Transplantation and the Cell Therapy Revolution by Fred Applebaum.

The autologous transplant you received using your own cells has been ground breaking in its own right with allowing patients with diseases such as Multiple Myeloma to achieve and hold remissions longer. The Allogeneic transplant, using donor cells either unrelated or related to the patient, faced major challenges in the early years because of the compatibility requirement of the donor cells.
This book is fascinating as it explores the early days of leukemia and the impact of radiation resulting from the atomic bomb, which lead Dr Thomas to the discovery of stem cell transplantation.
Let me know what you think about it!

@loribmt Thank you so much for your quick response, Lori. Your deep knowledge of transplant pluses & minuses is invaluable & impressive. I have a very rare T cell lymphoma (AITL) & pray that I am one of those who continue to live without a relapse.

I am amazed i missed this stream of posts!!! Wow oh wow. I will NEVER know if the research study i was in with 30 or so others at COH to prevent GVHD with an extra pill for 100 days. Some were in the study for 80 days. Dr. Malik led it at COH. That said, when i received the Melphalan chemo, i was given ice cubes and popsicles to keep my mouth frozen for the 1-hour infusion. My nurses insisted this could possibly work as it did for others keep my mouth free of mouth sores. It did. Not a mouth sore in 2 years. What???? No GVHD? What????? Neuropathy, now 2 blood clots are what i have. Both results of the breast cancer treatments of 2021/2022. Crazy.
This is a reminder we do not know how our bodies will react until it does. I had a 10/10 match from Europe. 26 years old.
coloradored.....Lori gave me the same wonderful pep talks and knowledge-based info on transplants, i was prepared. She spoke of the new cells entering my body being minions. During my 1 hour of ice freeze, I watched the minions on TV. She was then in my room for my transplant courtesy of the minions.
May 1st, I attend the 50th year BMT reunion at COH. I am excited to hear the stories.
Keep us posted. You and all.

I'm now posting this for my spouse. Stem cell transplant was April 2nd, first few days were ok, days 4 through 12 were tough, diarrhea, nausea, mucousitis, mouth sores, she checked all the boxes. Day +14 the neutrophils started to show, now at day +16 neutrophils count at 1900. Some problem with her kidneys probably exacerbated by the cyclosporine, but overall things are looking up. The staff and technology here at FHCC are incredible and we are both feeling hopeful moving forward.

Hi @alxlo1 Thank you so much for the update on your wife’s BMT! Those first couple of weeks are the roughest which she has found out. But now that her neutrophil count is on the rise the worst of the issues usually resolve themselves.
I know as caregiver you feel pretty helpless when there’s not much you can do those first few weeks expect to be a cheer leader. You’ll start noticing gradual improvements now in her daily stamina and a little more energetic. I use that term loosely, because that’s all relative. Energy will come in spits and spurts, reflecting a slow, steady recovery.

FHCC is an excellent facility. Actually the ‘pioneers of stem cell transplantation’. So your wife is in excellent hands!
May I ask…is your wife an in-patient for recovery or is she an out-patient?

She is an inpatient on the FH floor in the UW medical center. Hoping for discharge by the end of the month, we'll see.

@alxlo1
I was inpatient to for 26 says. I had a daily visit by the dr team which helped with all the issues. I truly hope she stabilizes as i did to be released to home. I am grateful you have each other.

@loribmt
Lori,
Can I get the book recommendation and I will order it as I start the process next week. In one of the other threads I just sent you a question about what your chemo experience was like.

Things have gone really well in preparing:
* in less than 3 months the Jakafi took my spleen from 23.7 cm to 17 cm
* I have been able to gain weight as my transplant doctor told me I needed to
* even though my RBC is 3.5 I have maintained energy and even just today rode my 3 horses a total of 15 miles

I have looked at the lists of things to bring and we have started packing, but if you have any last minute suggestions they would be appreciated.

I also wonder how long your engraftment took.
Thanks,
Lorie

Hi @lorieliebrock I just replied to your other comment. It’s way longer than intended. LOL. But you asked. Here’s the link:
https://connect.mayoclinic.org/comment/1601218/
You’ve had some excellent success with the Jakafi! Wonderful news that your spleen has gone down considerably! You’re still exercising and gaining weight, which is terrific. That will do well for you for the next couple of months! I’m sorry you’ll be missing your horses for a while. But those velvet noses will be waiting for your return!

Regarding the books. Honestly, I really think it’s better to wait until after your transplant. At least in my case, the books and information was much more meaningful and made more sense when I could pair it with my experience. Beforehand it’s difficult to relate to what you’re reading. So I will defer just a little while longer. ☺️

My engraftment was Day 14!!