1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

Struggling with decision to move forward with Allogeneic Transplant

Posted by deb913 @deb913, Aug 30, 2024

Hi,
I've been reading so many stories and feel humbled and encouraged by everyone. Right now I'm really struggling with committing to moving forward with my allo stem cell transplant. I am 60 and was diagnosed (Dec 2023) with a very rare leukemia (chronic eosinophilic leukemia), so there are no good statistics about outcomes. I am told there is no long term treatment and the only possible cure is an allo stem cell transplant. I have already gotten opinions from heme/onc and stem cell teams at two very good hospitals who recommended moving forward sooner than later due to possible complications of waiting. We were thinking of moving forward with it this Fall, but then the 3rd opinion doctor who is a world expert recommended delaying and monitoring monthly until something changes. After much thought, we still felt it was best to proceed this Fall while I am “healthy” rather than wait and possibly have additional problems (I also have lupus and had HLH), plus concern for it turning into AML. But I find my previous positive attitude is gone and I am now feeling very scared and unable to commit to proceeding, even though I logically know it’s the correct thing to do. I feel blessed to even be given the opportunity to even have the transplant since many CEL patients don’t find it early enough to have the chance, but at the same time I suddenly feel terrified of moving forward. Has anyone else struggled with losing your positive attitude about transplant or struggled with making the decision to move forward with transplant. Thanks for any thoughts you have.

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

sherbs | @sherbs | Nov 25, 2024
In reply to @katgob "csherbs. Check out the Bone marrow transplant threads. I was happy to see deb13 with a..." + (show)
@katgob

csherbs. Check out the Bone marrow transplant threads. I was happy to see deb13 with a great update. Melphalan was the chemo used to clear out my bone marrow. Nausea was some trouble, but they will give you meds through the IV. You keep them posted on how you feel. The transplant team wants your best recovery.
I was diagnosed with MDS in October of 2023. After the Bone marrow biopsy, I went into the Be A Match site and a donor was found in a few months. My transplant was April 9th, 2024. I am 228 days past transplant.
Let me talk a moment about GVHD. I was treated at City of Hope in Duarte, CA. Before my transplant i was offered to be in a research study. A drug that was used once people had GVHD symptoms had been tested as a daily drug which for me was from Day 5 to Day 100. I have not had any GVHD. I had a nearly perfect match, a 26-year-old fellow. I hadaaTP53 mutation and although i was low to medium with my MDS, having walked through breast cancer in late 2021 with a BRCA2 mutation, I knew a watch and wait was not for me.

They plan for 30 days in the hospital, but if your numbers are rising and you are eating and improving day by day they may send you home. Lori in the BMT threads will say what i am learning. Losing my hair for a 2nd time, and this time it is not coming back my normal red is funky thing. All my life i was the redhaired girl.
Read through the threads here and speak with your medical team. Your answer will come.

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@katgob
Thanks so much for your update!

I'll ask my transplant doctor about that daily GVHD treatment. Really encouraging to hear that you didn't really have any struggles with GVHD. I'm about a year behind you - diagnosed in October 2024. Starting chemo soon to get my blasts down as a bridge to transplant.

I'm still scared, but hearing from you and others that have been through it with good outcomes helps tremendously. Sounds like you are on your way to pretty much a full recovery! That is truly amazing!

When you say nearly perfect match... What does that mean exactly?

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katgob | @katgob | Nov 25, 2024

sherbs,
It was a research study across the country, so many had participated before me. Your doctor may know of these research studies as he is a transplant doctor!!! I was grateful for those who participate before me and how i got to help the next group with my results so far.

I was a 10/10 match, but the entire blood match had a little mis match, as i recall in the HLA matching, but nothing to be a hindrance.
I got my transplant before blasts were there, so I know getting your numbers down before transplant will likely help your body adapt to its new cells. It is really a fascinating process.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 29, 2024
In reply to @sherbs "Hi Deb, And hello to everyone else on the board. I'm recently diagnosed with MDS (with..." + (show)
@sherbs

Hi Deb,

And hello to everyone else on the board.

I'm recently diagnosed with MDS (with DDX41 mutation) and being advised that allogenic BMT sooner rather than later is the best course forward.

I'm scared. GvHD looms large in my thoughts and I'm conflicted about going through with the procedure.

I'm wondering where you are in your decision making process and whether or not you've gone through with BMT.

In general, I really appreciate all that have posted on this forum - your success stories give hope!

Thank you!
-G

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@sherbs, how are you doing? Any update about making a decision to treat MDS with an allogenic bone marrow transplant?

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sherbs | @sherbs | Nov 29, 2024

No... Not yet.

I'm meeting with my transplant team next week to discuss it.

I've been doing my best to educate myself in the mean time on my specific mutation that is driving my disease.

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1 reply
katgob | @katgob | Nov 29, 2024

sherbs...keep us posted.
Below is the study i was in.
Doctor it was under: Al Malki MM
Subject: Single Center Pilot Study to Investigate the Efficacy of Adding Itacitinib to Post-Transplant Cyclophosphamide as Graft-Versus-Host Disease Prophylaxis after Reduced Intensity Conditioning Matched Donor Hematopoietic Cell Transplantation with Peripheral Blood Stem Cells as Graft Source

Who knows what studies are offered, but sometimes just sharing them may give your doctor something to look into. They could offer up another one ifyou are blessed to be at a teaching research hospital.

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Mentor
Lori, Volunteer Mentor | @loribmt | Dec 7, 2024
In reply to @sherbs "No... Not yet. I'm meeting with my transplant team next week to discuss it. I've been..." + (show)
@sherbs

No... Not yet.

I'm meeting with my transplant team next week to discuss it.

I've been doing my best to educate myself in the mean time on my specific mutation that is driving my disease.

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Hi @sherbs. I’m sure you’re anxious to find out as much as you can about your upcoming BMT. You’ve had some great information from @katgob, @deb913 and @mary612 (caregiver for husband) about their experiences with the transplant process and recovery.

Do you have any specific questions about what to expect?
Did you have your meeting with the transplant team this week?

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sherbs | @sherbs | Dec 10, 2024

Hi Folks,

I did meet with my team and we discussed many things.

Some background. I have MDS-EB1. It was discovered that I also have DDX41 mutation that is likely pathogenic. If not for this mutation, I'd be considered very-low or low risk depending on which scoring system is used. Unfortunately, that DDX41 mutation puts me in a category of unknowns. There just aren't a lot of cases like mine and DDX41 isn't considered in the scoring systems being used to categorize MDS.

I've done quite a bit of research on DDX41 that has given me pause and I did discuss that research with my transplant doctor. I think it may be unwise to make general claims on the forum about what is best for DDX41 patients but I will say I'm bit upset with my care team for not being fully transparent about the current research and instead wanting to start chemo as a bridge to early SCT.

My current transplant doctor says that she considers each patient an individual and that the data on DDX41 is limited and may not be statistically significant and may not apply at all in my case. I accept that to some degree but it's also very difficult to simply ignore what I've read and plow forward without more input.

What I have decided is that I need to seek outside opinions on this from those in the best position to advise someone like myself with this not-yet-well-understood mutation. Best place for that is Mayo and I'm trying to get in to see folks there but haven't found availability through their scheduling department as of yet.

Really appreciate the followup.

I do think that, at some point, SCT is in my future - it really is a question of when I think.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Dec 10, 2024
In reply to @sherbs "Hi Folks, I did meet with my team and we discussed many things. Some background. I..." + (show)
@sherbs

Hi Folks,

I did meet with my team and we discussed many things.

Some background. I have MDS-EB1. It was discovered that I also have DDX41 mutation that is likely pathogenic. If not for this mutation, I'd be considered very-low or low risk depending on which scoring system is used. Unfortunately, that DDX41 mutation puts me in a category of unknowns. There just aren't a lot of cases like mine and DDX41 isn't considered in the scoring systems being used to categorize MDS.

I've done quite a bit of research on DDX41 that has given me pause and I did discuss that research with my transplant doctor. I think it may be unwise to make general claims on the forum about what is best for DDX41 patients but I will say I'm bit upset with my care team for not being fully transparent about the current research and instead wanting to start chemo as a bridge to early SCT.

My current transplant doctor says that she considers each patient an individual and that the data on DDX41 is limited and may not be statistically significant and may not apply at all in my case. I accept that to some degree but it's also very difficult to simply ignore what I've read and plow forward without more input.

What I have decided is that I need to seek outside opinions on this from those in the best position to advise someone like myself with this not-yet-well-understood mutation. Best place for that is Mayo and I'm trying to get in to see folks there but haven't found availability through their scheduling department as of yet.

Really appreciate the followup.

I do think that, at some point, SCT is in my future - it really is a question of when I think.

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Hi @sherbs. The DDX41 mutation is isn’t well understood but my transplant doctor at Mayo-Rochester is one of several doctors there involved in a study of the DDX41 mutation. From what I’m understanding some patients with this mutation have better chances without the transplant.
We have another member in the forum with the same mutation who went to Mayo Rochester. I’d like you to meet @fortuitous. You can read through their discussion here:

Does anyone else have AML with ddx41 genetic mutation?
https://connect.mayoclinic.org/discussion/aml-with-ddx41-mutation-anybody-else-in-the-same-boat/
This comment discusses not having the transplant:
https://connect.mayoclinic.org/comment/1030574/
Knowing that you’re already considering a second opinion at Mayo, here is the link to their page for requesting an appointment.
http://mayocl.in/1mtmR63
You don’t need a referral but it can help to have your doctor’s input and mentioning the DDX41 mutation.
Have you tried using a referral?

REPLY
sherbs | @sherbs | Dec 10, 2024

Thanks Lori...

I'll reach out to @fortuitous and chime in on that thread.

I did just book an appointment for next month. Currently just one appointment scheduled but they prefer I stay for 3 days just in case they want to set up any other tests/appointments.

Planning for a visit to Mayo!

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2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Dec 10, 2024
In reply to @sherbs "Thanks Lori... I'll reach out to @fortuitous and chime in on that thread. I did just..." + (show)
@sherbs

Thanks Lori...

I'll reach out to @fortuitous and chime in on that thread.

I did just book an appointment for next month. Currently just one appointment scheduled but they prefer I stay for 3 days just in case they want to set up any other tests/appointments.

Planning for a visit to Mayo!

Jump to this post

I’m so glad you got your appt for Mayo! It’s my home away from home and you’ll be in the best of hands there! The hematology dept is 2nd to none!

If you’ve not been to Mayo before, here are a few links that might be helpful.

~Accommodation recommendations when coming to Mayo
https://connect.mayoclinic.org/discussion/what-are-your-accommodation-recommendations-when-coming-to-mayo/
~Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

Rochester is easy to navigate and so is the Mayo Clinic. The buildings are all interconnected with great signage for directions and wonderfully helpful people in blue jackets to make sure you get where you need to go!

Make sure you use your new Mayo number to set up your account on the patient portal. It becomes your lifeline for communication between the clinic and you. You’ll get updates of appointment scheduling, test results, doctor’s notes, etc.
You mentioned having only one appointment so far. It’s one of the amazing things about Mayo…you go in for your initial appointment with the specialist and then boom, they work their magic and you get dropped into the schedule for tests/appointments while you’re there! I call it being Mayo-naised.

If you have any questions don’t hesitate to reach out. Are you within driving distance?

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