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

Good morning, @alxlo1 The combination of Duvelisib and Romidepsin wasn’t familiar to me so I did a little sleuthing. It appears this combination, from studies done, is highly active against relapsed or refractory T-cell lymphoma. If this is used before an allogeneic transplant it may help ensure a successful transplant, with a greater chance of durable remission.

I’m not sure what you’re asking about the worst side effects and outcomes. Is this about the chemo you’d be taking or the allogenic transplant itself?
If I remember correctly you’ve already received 6 rounds of chemo to treat Angioimmunoblastic T-cell lymphoma (AITL). And unfortunately there is new evidence of activity.
Not having first hand experience with Duv/Romi treatment, I can’t answer as to how this will affect you but I’m expecting it wouldn’t be any worse than the chemotherapy you’ve received previously. I’m not making light of this because I know how miserable it can be to go through chemo.

The allogeneic transplant (BMT) is not a walk on the beach by any means and there are certainly risks associated. But for many of us with blood cancers, where chemo alone won’t keep us in remission, having a BMT can provide us with a 2nd chance at life. I won’t lie, the first month or so is rough. But depending on where you have the transplant done, you will be either in the hospital for 6 weeks or nearby the clinic. So you are well attended through the more challenging days of recovery with feeling fatigued, nauseated and possible other issues such as mouth sores, etc.. The BMT teams are committed to keeping you comfortable and safe.

As you know, chemo and a transplant aren’t without risks. But if other treatments haven’t worked and no other options are available then there is a big decision ahead. In my own case, at the age of 65, to have any hope of a future there was no other option than to have the allogeneic transplant. That was just about 7 years ago now. I recently turned 72, very active and healthy.

I’m here for you, along with many other members in the same age group who have had this procedure done. The chemistry used and the blood cancers might be different but the desired outcome is similar…the desire to have that 2nd chance at life and hope for a future.

It’s important to be in the hands of experienced BMT teams. Are you being treated at a larger teaching/research institution where there is a higher rate of bone marrow transplantation?

Thanks for reaching out. I live in Seattle and am being treated at Fred Hutch, which has been wonderful. I've been informed of the challenges with BMT, but I trying to get some firsthand details of the worst complications.

Hi @alxlo1. You’re in excellent hands at Fred Hutchinson. Their doctors, especially Dr Don Thomas, were instrumental in the research and development of bone marrow transplantation. So their reputation is well founded. ☺️

Side effects from the allogeneic transplant can vary from patient to patient. The most serious comes from a reaction of the newly infused cells from a donor called Graft Vs Host Disease or GVHD. This can be skin related issues, organ damage, mouth sores, dry eyes, etc.. Most are mitigated at the beginning.
Bear with me and I’ll explain a little. Then I’ll put a link it with stories from BMT patients including mine.

The bone marrow is the blood manufacturing site in the body, housing blood stem cells which go on to develop into specific blood cells such as red/white and platelets. It is also the home of your immune system, which basically attempts to protect you from any invader such as cancer cells, fungi, bacteria, viruses…. Right now, your current immune system is ineffective and the best bet is to replace it, in hopes that a donor’s immune system will be better.
The preconditioning chemo before the transplant will wipe out your existing marrow and immune system, preparing a clean environment for the upcoming transplanted stem cells.
The new donor stem cells are infused just the same as a blood transfusion, from a little bag attached to an IV line. These little cells, referred to as the graft, are foreign to your body, which is now referred to as the host. They are healthy and ready to do their job. Once infused into the blood, they tumble along the outside walls of the veins until they find specific little pores that open into the bone. Once inside the marrow, these thousands of cells intuitively set up housekeeping (called engraftment) and start manufacturing healthy blood cells again. However, this is NOT your immune system. It’s someone else’s that is now circulating in your body! You can imagine how startled these aggressive little cells are! So they set off all kinds of bells and whistles in panic as they now seek to destroy their new host!! They look at your body as the invader.

But…and it’s a big but, part of the medication regimen you’ll be receiving along with the transplant are anti-rejection drugs which will keep those assertive cells in a very compliant state until they can play well together with your body. It takes several months or longer, but the immune system is adaptive. And it will eventually recognize the foreign proteins and settle down with an amicable partnership. It took me longer, about 2.5 years until I was off the meds. Most people it’s around 3 to 6 months. Like I said we are all different.

I’m going to post a link to a discussion I began several years ago with sharing my BMT story. You’ll find many accountings of fellow members who have gone through the same journey for various blood cancers.
~My bone marrow transplant story: Will you share yours? https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/

Looking at all the information online can be overwhelming and intimidating. That’s why I posted here. It can be so helpful talking to someone who has gone through this same situation.
Please let me know if there’s anything I can help you with, ok?

PET Scan results were good, no detectable cancer. I start the BMT process on Thursday and I am feeling really good about my prospects, but still realize there is a long route ahead.

Good morning, @alxlo1. Well, tomorrow is the big day…the beginning of the first day of the rest of your life. ☺️ It’s an amazing gift to receive a 2nd chance at life. Like you mentioned, it is a long route ahead but it is doable! My husband and I often refer to my odyssey as the most crazy adventure we’ve ever taken together.

Noted from my own experience and friends I’ve made along the way during their BMT journey, the first 2 weeks are usually the roughest with increasing fatigue, nausea and the lovely side effects you’ve had from your other chemo. This may have you feeling a little lower physically and mentally by the two week point. But then quickly, as newly received blood stem cells engraft around that time, you’ll start sensing an improvement from the worst of the symptoms. From there, it’s usually a lengthy but steady rate of recovery!

You have a bunch of us here in Connect walking right along with you. So don’t hesitate to reach out if you need some moral support or encouragement!
Is Tuesday, Feb 10th, Day 0 (transplant day) for you?

@loribmt Today is the initial meeting with the transplant team, conditioning scheduled for the end of February, with transplant day early March. I'm a little apprehensive but ready to move ahead

@alxlo1 Ah, ok. I thought when you said you’re staring the process Thursday you meant you started day -6. ☺️ So you still have that to look forward to. The countdown usually begins with day (minus) -6 and when you get to day 0, that’s stem cell infusion day. Then all the days after that are Day +1, +2 and so one.

It’s perfectly normal to be apprehensive. I would think you’re super human if you weren’t. Though for me and a few of my friends who went through this, once we got back to feeling normal, we felt a bit invincible! We have super powers of a chimera. Having 2 sets of DNA. I often thought it would make great fodder for a good mystery novel.

If you need pointers, a nudge, moral support, answers, hand holding…I’m here, along with whom I lovingly refer to as my BMT posse, to help you along this unique trail to your 2nd chance at life. Keep me posted, ok?

@loribmt Hi Lori,
Wanted to give you and @coloradored @bizzylizzy a little update.
My stem cell collection was unsuccessful. They just couldn't collect enough even with 4 days of shots.
My doctor informed me an autologous is no longer an option. I'm ok with this, but talk about a complete derailment of plans.
She said allogeneic is where we are now. I will meet with another Mayo oncologist that specializes in allo. I know nothing more than this is my next option- whether now or down the road.
I am absolutely terrified of doing the allogeneic. Terrified.
Lori, I know you have had the
allo. Would you mind giving me a rundown and if you encountered many GVHD complications?
I never saw this coming. At least I am in remission 🤍

Oh no. That is not good news but it isn’t terrible. There is still a viable option.
A friend of mine was discharged 3-4 weeks ago after 4 weeks in having an allo. He is 69 and while it was tough, he has managed to get through it. Very happy to be this side of it. He is having a bit of trouble with GVHD and is on prednisone for the rash. His blood levels are better than mine - meh. I try not to focus on it, but my immune system is still dysregulated so my platelets are at about 60-70 and I inject weekly to manage my neutrophils.
I choose not to think about it or dwell on this and what might be as it spoils my enjoyment of today.
I feel like I won Lotto - in remission. Yeehaa.
Wishing you good health.
Liz in NZ

@thenester I had allo transplant 9.5 years ago. The first year after the transplant was rough for me - I had acute gut GVHD and other complications.

Fortunately, since then my recovery progressed very smoothly. I’m now working full time, traveling, exercising and living a normal life. This wouldn’t have happened without my transplant. I would have been dead.

Each SCT recipient has a unique recovery experience, so it’s hard to predict what will or won’t happen. What gave me confidence during my transplant and recovery was how competent my doctor and his team were. My transplant wasn’t at Mayo, but I trusted my doctor to do everything to get me through the challenges, and he did!

Five years ago I was diagnosed with chronic GVHD which affected my skin. It was fairly mild and I have recovered from it. I should be off immunosuppressives by the end of the year.