Research studies on cyclophosphamide dosage

Welcome to Connect, @sennep! We have a growing number of members in our BMT support group. The field of bone marrow transplantation continues to evolve, in part, through the research and data collected from patients willing to participate in a program. Each of us who have undergone a BMT/SCT are here because someone else went before us. These procedures have been gaining a good track record for potential cures for some forms of leukemia, autoimmune diseases, etc..

But there is still work to be done in the fine tuning of some of the potential side effects such graft vs host disease where the new immune system finds it diffcult to ‘play nice’ with it’s host…the body in which the stem cells have been infused.
My transplant was 5 years ago and it’s amazing how much has evolved since then. I had the standard methotrexate and tacrolimus post transplant. I did really well though there were some gvhd events. They were handled quickly by my team and at post 5 years I’m very healthy, active and feel 99% of my former self. I was 65 at the time, so, now 70 and feeling amazing.
Over that 5 years time, meds such as Cyclophosphamide, Itacitnib and abatcept have been added to the protocol to help prevent acute GVHD and also help prevent chronic GVHD. From my understanding each of these meds, some in combination have been pretty successful in their mission.

One of our more recent BMT members, @katgob had post transplant protocol for GVHD with a trial med to avoid GVHD. Maybe she can tell you a little more about her experience. She’s around 160+ days post? Anyway, she’s off the tacrolimus and from my undertanding doing really well with no GVHD issues!

This article from Ash Publications talks about the progress made in pre-treating GVHD
https://ashpublications.org/hematology/article/2018/1/228/277593/Current-approaches-to-prevent-and-treat-GVHD-after
If you’re having a haploidentical transplant, is your donor a sibling, child or parent? If you don’t mind sharing more about yourself, what condition has brought you to needing a transplant? Do you have any questions about the transplant?

Lori,
Yes. Day 160 past transplant. Today i got my call for the date and time for my next BMB. Cloe to 6 months have passed. October 9th would be my 6 month mark.

I would like to hear more about this transplant. I was in a research study. It was taking a drug that prior was only used after a transplant patient developed GVHD.
I posted it on our BMT story page as i posted the study i was in, so another member here could check with her doctor. The DR. directing the study at the COH in Duarte, Ca is listed. I suggested to her to have her Dr message this Dr. They can find out where this study is going next. I was in the 3rd phase. Tacro- On this till day 60 then tapered off a few weeks./Itacitinib- This was the drug i was on from Day 5 after transplant to day 100. To prevent GVHD.
Day 160 I would say my worst side effect of the transplant is some dry mouth I developed in the last month. Not dreadful, but annoying.
Get more information about what they want to do and what will be your benefit. I knew mine was to prevent GVHD before it occurs. I knew the worst result may be i get GVHD symptoms.
Let us know if this is a study that has had participants and how has it worked!

My husband had allo transplant (from an unrelated donor) Aug 22. He received a reduced dose of cyclophosphamide on days 3 and 4 because of his age and risk factors. Engraftment for neutrophils seemed to happen on day 17 ( he got neupagen shots for days until counts were above neutropenic).
We are at Mayo Rochester receiving brilliant care. Very best of luck to you!

Thanks for responding! Great to hear you are doing well! My son is my donor. 50% match, different blood type. Had my physical and lab work and next thing I knew I was talking the hematologist and the BMT team! Just low blood counts across the board. Tier 3 mutation. I was and continue to feel fine 3 weeks into pre-treatment. 65 about to be 66. Healthy. Strong support system.

Thank you for sharing! Nice to meet someone who has been through the reduced cyclophosphamide protocol. Really glad it is going well! Was Day 17 for neutrophils engraftment late relative to expectations or within expectations?

It was precisely (to the day) the earliest our transplant specialist said we could expect engraftment. We are still watching the platelet and red blood cell numbers: he needed several transfusions in the first two weeks after transplant, but has not needed any in several days now, and over a week for platelet. It’s all very breath taking.

Thanks for sharing his journey with me! Looks like the clinical trial has been paused so I am likely to be on the standard of care. Hop e everything continues to progress smoothly!

Lori
The article was very helpful! Thank you! They paused the research trial so I guess I will receive the standard of care. I think I understand the transplant. I am on this journey due to the blood work from my annual physical. I feel fine even after 25 days of pre-treatment. Off to a tennis camp for the weekend :). Transplant Oct 8 🙂

Enjoy your weekend! The fact that you’re off to tennis camp basically 2+ weeks before being admitted for your BMT tells me you’re in great shape going into this. From my experience, being active before, during and after tranplant really can make a huge difference in the recover. Though, to be warned there are days you may not feel like being very active. But the residuals from all your previous lifestyle achievements can really help keep propelling you forward.

Please keep me updated and don’t hesitate if you have any questions! It can help to have a mentor. ☺️