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

Hi @lorieliebrock. Welcome to Connect. You came to the right place to be embraced by other (BMT or SCT) bone marrow transplant/stem cell transplant members. It can certainly feel overwhelming with the amount of information or sometimes, the lack of information preceding the transplant.

One of my closest friends is a woman whom I met while we were both undergoing our transplants. She had myelofibrosis. This was just about 7 years ago. We’re both in our 70s, feeling super healthy, in durable remission and enjoying our 2nd chance at life. While it’s not an easy journey and recovery is slow, it can mean a potential cure for our cancers.

There are a growing number of bone marrow transplant members in Connect and we’re more than happy to help you in any way we can. Here is a good place to read through some of our stories. We’re open and honest with our experiences.

My bone marrow transplant story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
Gvhd is a possible side effect of the transplant but newer protocols have helped mitigate the worst of the issues. When we get a stem cell transplant we are actually adopting a new immune system from our donor. The goal is to have a graft (new cells) vs tumor or leukemic reaction. But until the new immune system adapts to the body it has a tendency to be aggressive and wants to attack the body instead. To help prevent that, you’ll be on medications for a few months until things settle down.

Are you near your transplant center or will you have to relocate? Do you know if you’ll be there as an in-patient or will be recovering off-campus?

@loribmt we are going today for our 3 yr post transplant. Getting the who who’s testing today to see the levels. My husband talked with his donor on the actual day for the 3 yr mark. It was nice to be able to thank him. Please anyone who has a chance for a BMT go for it. Yes he would have probably been gone had he not gotten this second chance at life. Not saying the road is easy but worth it. They say a little GVHD is good like you said it helps out with the process. Hope we can also make it to 7 yrs. Thanks Lori for the encouragement. 🙏

@loribmt Slight delay with the donor, transplant now scheduled for March 18. We live in the Seattle area and the conditioning will be outpatient at FHCC and the transplant at UW Medical center, Montlake. Still optimistic in spite of this additional delay

@jrwilli1
High five!! I am going for my 3 year post transplant evaluation April 17 at Anderson. I wish good results for us both. AML tried to take me 3 years ago but I’m not done yet. Totally worth it. So thankful to all the souls who came before us. And the doctors and nurses who have spent countless hours. We live on the shoulders of giants.

Good morning, @thenester.
Ohh goodness, “Terrified” is such an intense word! I hope with the help of some of my BMT (allogeneic bone marrow transplant) friends here we can help you feel less fearful of the procedure and recovery.
While you’re no longer able to have the autologous transplant using your own cells, there still may be the option of the allogeneic tranpslant using donor blood stem cells.

The upside, there are long term benefits to having the allo transplant such as you’re less likely to have a repeat transplant than with the auto. Your current immune system is no longer recognizing cancer cells responsible for your diagnosis. By clearing out your bone marrow, basically the heart of the immune, your current blood stem cells and defective lymph system will be purged. The newly donated blood stem cells from a donor, should restore a healthy immune system to you once again. However, it will never be quite as robust as the ‘factory installed model’ but still very effective.

GVHD (graft vs host disease) is a potential downside to having an allo transplant. However, it is that very effect of ‘graft vs leukemia or graft vs tumor’ that makes this type of transplant successful. So it’s important to have some reaction to the transplant. There have been advancements in preempting some of the more severe complications of GVHD during the recovery period. Mayo Clinic has been at the forefront of this mitigating program for several years having introduced the new protocol a couple of years after my transplant.
When I had my transplant, like @alive, I fully trusted my doctor and his team to keep me safe and healthy. They wanted a successful outcome as much as I did.
I had the same concerns you have about gvhd. My doctor and his team were very upfront telling me about potential gvhd side effects. Bottom line: They couldn’t tell me what, where or when or if it would happen but that IF it did occur they’d handle it! And they did! I’m coming up on 7 years post transplant, feel as though nothing ever happened and enjoying my life…that I wouldn’t have if not for the transplant. I’d have been gone 6 years ago.

The fact that you’re in remission now is fabulous. If a BMT is warranted and you’re a good candidate this may be a preferred time for the transplant. But that’s a discussion to have with a transplant doctor. I know you’re apprehensive, but this is a potential gift of a second chance at life…it has the potential to keep you in a durable remission.

Do you have an appointment with a transplant doctor yet? I can’t remember, are you in Phoenix?

@loribmt
Hi!
I'm sorry I've been MIA. Judt getting back to life.
I did meet with the allo transplant doctor and we discussed it all. My two doctors at Mayo and my Doctor here in Tucson have all agreed that watching is a reasonable route to go.
I did receive a call last week and they found 40! Yes 40 10/10 donor matches for me- all under the age of 30.
That is reassuring if I ever do need one down the road.
I am 3 months post chemo and I feel great. Next PET is April 10th. My doctor said if all is good he will remove my port.
I pray with all of my heart and soul that this is all behind me. I pray for others that are struggling with illness. My heart hurts knowing what I've been through and what others have or are going through.
This has been such a wonderful source of information and kindness.
Thank you!
I will check in often.
Jennifer xx

Hi @lorieliebrock. Welcome to Connect. You came to the right place to be embraced by other (BMT or SCT) bone marrow transplant/stem cell transplant members. It can certainly feel overwhelming with the amount of information or sometimes, the lack of information preceding the transplant.

One of my closest friends is a woman whom I met while we were both undergoing our transplants. She had myelofibrosis. This was just about 7 years ago. We’re both in our 70s, feeling super healthy, in durable remission and enjoying our 2nd chance at life. While it’s not an easy journey and recovery is slow, it can mean a potential cure for our cancers.

There are a growing number of bone marrow transplant members in Connect and we’re more than happy to help you in any way we can. Here is a good place to read through some of our stories. We’re open and honest with our experiences.

My bone marrow transplant story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
Gvhd is a possible side effect of the transplant but newer protocols have helped mitigate the worst of the issues. When we get a stem cell transplant we are actually adopting a new immune system from our donor. The goal is to have a graft (new cells) vs tumor or leukemic reaction. But until the new immune system adapts to the body it has a tendency to be aggressive and wants to attack the body instead. To help prevent that, you’ll be on medications for a few months until things settle down.

Are you near your transplant center or will you have to relocate? Do you know if you’ll be there as an in-patient or will be recovering off-campus?

@loribmt
We are from Michigan so more than 600 miles from Rochester so I was told I will need the 100 days near Rochester. We will be trying to get into GoL for that. My husband will be my caretaker with relief from my best friend. He says he does not need back up but I really think it might help for him to get a break in the middle of this. From all of the reading I have done (I am a researcher and dove into research papers that are fascinating) I am more worried about him than me.

@loribmt
We are from Michigan so more than 600 miles from Rochester so I was told I will need the 100 days near Rochester. We will be trying to get into GoL for that. My husband will be my caretaker with relief from my best friend. He says he does not need back up but I really think it might help for him to get a break in the middle of this. From all of the reading I have done (I am a researcher and dove into research papers that are fascinating) I am more worried about him than me.

@lorieliebrock I echo the sentiments of @alive! Your husband will appreciate having a back up caregiver for a little break. My husband was my caregiver too and was an absolute brick through all of my recovery. He didn’t think he needed a break. Our daughter lives 1.5 hours from Rochester and when ‘we’ (team, my husband and I) felt I was stable and comfortable enough, she would drive down for a long weekend to ‘baby sit’ her mom. That gave my husband time to drive back home four hours to spend several days at our house to check on things and to just sleep peacefully. It was enough of a break that he realized he was feeling much tense with that time out.

The Gift of Life transplant house is an excellent facility from comments other members have made. Since you are a researcher, you might appreciate this podcast on GOL: https://connect.mayoclinic.org/blog/podcasts/newsfeed-post/gift-of-life-transplant-house-mayo-clinic-radio/

Also, here is a link to the search in Connect for conversations around the GOL: https://connect.mayoclinic.org/search/

Since you’re already finding this entire process fascinating, after your transplant I’ll give you a book recommendation that I think you’ll really delve into! My copy is so dog-eared and well highlighted. I also bought a digital copy for easy reference.

Do you have any specific questions about the long term stay, the first 100 days, the transplant process?