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

Struggling with decision to move forward with Allogeneic Transplant

Posted by deb913 @deb913, Aug 30 1:04pm

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.

katgob | @katgob | Sep 20 11:50pm

I had my BMT on April 9th. Day 164 past transplant. The one side effect i have had in 30 days is dry mouth.
I will say my decision to get the BMT was because i was diagnosed with low to med MDS coupled with a TP53 mutation and a diagnosis of BRCA2 and cancer from that. The Dr. had said i had a couple choices. Watch and wait or look to a BMT.
At that time, most of my care had been in the women's center. Two years. Hematology and my Dr. were new to me. I knew my blood numbers had not recovered from my prior cancer treatment and asked to see a Hematologist. MDS was nothing i expected. OMG.A bone marrow transplant. It was not real till 3 months before when my blood numbers still were going down and a bone marrow perfect match was found on the registry.
I was in a research study at the COH that was to prevent GVHD symptoms. A bit of me thought, what happens when day 100 hits and i finish that pill sequence. What then? Walking every day to what is now 10, 000 plus steps, good eating and good sleep, I am doing well. The one thing I will say is that my hair is just growing. Just starting to cover my head. That is what reminds me that I just had a transplant over 5 1/2 months ago. My 6- month BMB is October 3rd. My hair had just got to my shoulders from my last cancer, and for a2nd before i told the Dr to put my name in the "Be a Match" site, I thought crap i am going to lose all my hair, again. Next thought was i was glad it was not longer. I was reminded it would likely grow back.
I know having Lori and the others on this site talking about the procedures helped me know what to expect. The hospital has guides and all sorts of people sharing things with you. Yet nothing was better than the support of those who had already walked the BMT path or were walking with family through it. For me, this was a key to making my transplant experience manageable.

REPLY
1 reply
deb913 | @deb913 | Sep 21 6:45am
In reply to @katgob "I had my BMT on April 9th. Day 164 past transplant. The one side effect i..." + (show)
@katgob

I had my BMT on April 9th. Day 164 past transplant. The one side effect i have had in 30 days is dry mouth.
I will say my decision to get the BMT was because i was diagnosed with low to med MDS coupled with a TP53 mutation and a diagnosis of BRCA2 and cancer from that. The Dr. had said i had a couple choices. Watch and wait or look to a BMT.
At that time, most of my care had been in the women's center. Two years. Hematology and my Dr. were new to me. I knew my blood numbers had not recovered from my prior cancer treatment and asked to see a Hematologist. MDS was nothing i expected. OMG.A bone marrow transplant. It was not real till 3 months before when my blood numbers still were going down and a bone marrow perfect match was found on the registry.
I was in a research study at the COH that was to prevent GVHD symptoms. A bit of me thought, what happens when day 100 hits and i finish that pill sequence. What then? Walking every day to what is now 10, 000 plus steps, good eating and good sleep, I am doing well. The one thing I will say is that my hair is just growing. Just starting to cover my head. That is what reminds me that I just had a transplant over 5 1/2 months ago. My 6- month BMB is October 3rd. My hair had just got to my shoulders from my last cancer, and for a2nd before i told the Dr to put my name in the "Be a Match" site, I thought crap i am going to lose all my hair, again. Next thought was i was glad it was not longer. I was reminded it would likely grow back.
I know having Lori and the others on this site talking about the procedures helped me know what to expect. The hospital has guides and all sorts of people sharing things with you. Yet nothing was better than the support of those who had already walked the BMT path or were walking with family through it. For me, this was a key to making my transplant experience manageable.

Jump to this post

Thank you so much katgob for sharing your story. I can’t imagine going through two cancers like you did - amazing and inspiring. I am going forward with my transplant end of October. I am feeling scared but also so encouraged and uplifted by stories like yours. The GVHD is a big concern of mine and I will mention your treatment to my doctor. My dr had also mentioned a study their institution was doing to possibly lessen GVHD so I’ll have to look into that as well. You and everyone on this site are a godsend. There is nothing like talking to people who have gone through this to help me feel better.

REPLY
1 reply
katgob | @katgob | Sep 21 9:52am

Deb913- I posted the study i was in and i just cannot find it again!!! Itacitinib- It was being posted in 2020 as a drug for GVHD after you got those symptoms. Then trials continued and continued, and it was found to work preventing GVHD in the early days. The study i posted on a transplant page here was the one i was in. Day 5 to Day 100 i took this pill. Along with the Tacro pill that I tapered off and stopped taking at day 80.
So far, as i said dry mouth but not awful. Allowing yourself the grace to not fill your head with worry. I had few side effects with my 1st cancer and chemo. Constipation and those effects and fatigue. Some neuropathy and funky frozen shoulder came to pass. All was manageable and I told the medical team and got help for all. As a BMT patient, Lori told me on this site we are patients for life. That is good. Living the best lives we can.

REPLY
alive | @alive | Sep 22 4:42am
In reply to @deb913 "Thank you so much katgob for sharing your story. I can’t imagine going through two cancers..." + (show)
@deb913

Thank you so much katgob for sharing your story. I can’t imagine going through two cancers like you did - amazing and inspiring. I am going forward with my transplant end of October. I am feeling scared but also so encouraged and uplifted by stories like yours. The GVHD is a big concern of mine and I will mention your treatment to my doctor. My dr had also mentioned a study their institution was doing to possibly lessen GVHD so I’ll have to look into that as well. You and everyone on this site are a godsend. There is nothing like talking to people who have gone through this to help me feel better.

Jump to this post

It’s a good idea to find medication/clinical trial that may prevent GVHD. I had my SCT in 2016 and had acute GVHD and now have chronic GVHD. What I have now is mild and under control. I don’t regret getting my transplant. I wouldn’t be here if I didn’t.

REPLY
katgob | @katgob | Sep 22 10:04am

alive
I hope there is another drug besides the one i was on. I am glad yours in under control. Thank God we have the transplant teams that are here to help with any and all symptoms that come to pass. So much has changed since 2016. I am hoping treatment for chronic GVHD has too. Prayers for all to have a good, good day.

REPLY
sherbs | @sherbs | 1 day ago

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

REPLY
1 reply
sherbs | @sherbs | 1 day ago
In reply to @mary612 "@deb913 Hi Deb We are so glad you found this forum and reached out about the..." + (show)
@mary612

@deb913
Hi Deb
We are so glad you found this forum and reached out about the decision you are facing.
My husband, at 64 yo, was diagnosed with high risk AML in January this year. It came out of nowhere and we were told he had a year to live. Shocked and heartbroken, we sought treatment at Northwestern Medicine in Chicago, where they immediately started induction treatment to reach remission and said SCT was his only chance to beat this and be cured. We sought a second opinion at MD Anderson a couple months later regarding the transplant. They reassured us this was the best plan of care.
We were told all the risks in great detail but one of the biggest factors before proceeding with the transplant was his fitness, that is, his overall health and strength. Thankfully, he had no other chronic health issues, and was in great physical condition, waterskiing several times a week just last summer. He reached complete remission after 3 months of induction therapy and had his re-birth day on June 12,2024 with the cells of a 34 yo man (11/11 match) from Germany, to whom we are beyond grateful and hope to meet someday to thank personally. Today he is day 80 post transplant and doing very well, with no evidence of disease present. We have hope for the future, waking up very day grateful for another day, and trusting our medical team to guide him to the day we can consider him fully cured.

If it helps you to know this, the stem cell team has commented to him that his fitness level made a great difference in his recovery from the transplant. Going into this when your health is at its best can be a wise choice, if one has a choice, although I empathize with the difficulty of this decision. I also must say that the transplant process, especially if you have it performed at a health center that does a lot of them annually, can be trusted to carry you through competently because they have the experience and expertise to manage everything, every step of the way.

Please, as you go through your next steps in this process, do not hesitate to ask questions or seek support here. Lori is the lifeline so many of us found and many of us want to give back and help others as well.

Jump to this post

Thank you for posting this story.

I'm recently diagnosed with MDS and am told that transplant is in my future. I'm scared of course but your story gives some hope. I'm 54 and pretty healthy - no other complicating factors other than MDS. I work out, play sports, and try to eat reasonably well.

I haven't 100% committed yet to going through with the transplant but it seems my choices are limited.

To hear that your husband did well given his fitness level is encouraging. I hope he is doing well today and I hope my journey mirrors his!

Thank you again!

REPLY
deb913 | @deb913 | 16 hours ago
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

Jump to this post

11/19/24
Mayo response:
Hi @sherbs
It is so tough to decide to move forward when you feel well. You might consider a second opinion. For me It helped to have second opinion because that made It feel more secure moving forward to BMT.

I decided to move forward with transplant, and am at Day +14 . And they are talking about discharging me soon, which is about 5-6 days earlier that we expected; so all went well with my Transplant. For me, the worst part was a lingering nausea but it is getting better and they do have a lot medicines to try. Everyone is different in this side effects they may get. Try not to spend too much time reading about all the potential side effects- I put all my GVHD info in one spot and planned to get it if I had GVHD symptoms.

Even after I made the decision to move forward, I was still anxious and feeling like this couldn't be happening to me. But once I was admitted I felt much less scared and anxious. My point being that it's ok to move forward when you feel anxious about moving forward. It's a very difficult decision to make.

Good luck with your decision.
Deb

REPLY
1 reply
sherbs | @sherbs | 5 hours ago
In reply to @deb913 "11/19/24 Mayo response: Hi @sherbs It is so tough to decide to move forward when you..." + (show)
@deb913

11/19/24
Mayo response:
Hi @sherbs
It is so tough to decide to move forward when you feel well. You might consider a second opinion. For me It helped to have second opinion because that made It feel more secure moving forward to BMT.

I decided to move forward with transplant, and am at Day +14 . And they are talking about discharging me soon, which is about 5-6 days earlier that we expected; so all went well with my Transplant. For me, the worst part was a lingering nausea but it is getting better and they do have a lot medicines to try. Everyone is different in this side effects they may get. Try not to spend too much time reading about all the potential side effects- I put all my GVHD info in one spot and planned to get it if I had GVHD symptoms.

Even after I made the decision to move forward, I was still anxious and feeling like this couldn't be happening to me. But once I was admitted I felt much less scared and anxious. My point being that it's ok to move forward when you feel anxious about moving forward. It's a very difficult decision to make.

Good luck with your decision.
Deb

Jump to this post

Thank you so much for your update! Day 14 (15 as I write this)! That's fantastic and just the fact that you are on the forum and communicating so soon after such an event alone is super encouraging!

In my case they are telling me a 4 to 6 week stay at the hospital so I'm surprised they are looking to discharge you so soon? I know different institutions do things differently but that must be a good sign. Super happy for you and sending positive thoughts!

I wake up every morning with that feeling - 'how could this be happening to me?'. I know it well!

I'm going to seek as many opinions as I can but it does seem inevitable that this is my path. And, if that's the case, better traveled sooner than later and having it always looming out there - at least that's my typical attitude.

-G

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