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

Can anything prevent peripheral neuropathy after stem cell transplant?

Posted by deb913 @deb913, Oct 15 3:31pm

Hi - I am having a stem cell transplant Oct 30 and have some peripheral neuropathy now, so I'm concerned it will get worse after transplant and want to do anything I can to prevent it from getting worse. I'm confused about what causes the PN - is it from the chemo or from GVHD? If it is from the chemo, has anyone tried cool packs on hands/feet during chemo to try to prevent it? Any other ideas or information on how to prevent PN after transplant? Thanks so much.

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merrle | @merrle | 3 days ago
In reply to @deb913 "Thank you Merrle. That is very helpful because it gives me hope that if my PN..." + (show)
@deb913

Thank you Merrle. That is very helpful because it gives me hope that if my PN does get worse it might get better. It’s all about keeping hope alive 😀 I am about 3 weeks post transplant and so far no increased PN.

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I was in pretty rough, shape at three weeks post Transplant but things really did get better and better. Even at month 12 I saw some improvements.Hang in there! Let us know if you have either worried about, maybe we can help.🤗

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deb913 | @deb913 | 3 days ago
In reply to @merrle "I see this is an older post, but will comment in case it is helpful. I..." + (show)
@merrle

I see this is an older post, but will comment in case it is helpful. I had peripheral neuropathy prior to my cancer diagnosis it worsened someone with Velcade and then at the time of transplant, but at 13 months out, it has improved and really doesn’t cause me any significant problems despite ongoing chemotherapy. Hoping that you have minimal difficulty with this.

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Thank you Merrle. That is very helpful because it gives me hope that if my PN does get worse it might get better. It’s all about keeping hope alive 😀 I am about 3 weeks post transplant and so far no increased PN.

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1 reply
merrle | @merrle | 3 days ago

I see this is an older post, but will comment in case it is helpful. I had peripheral neuropathy prior to my cancer diagnosis it worsened someone with Velcade and then at the time of transplant, but at 13 months out, it has improved and really doesn’t cause me any significant problems despite ongoing chemotherapy. Hoping that you have minimal difficulty with this.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Nov 26 5:26pm
In reply to @yvonneam "Hi Lori, Yes mine will be anthologist, stem, cell transplant, isolating in our nearby condo instead..." + (show)
@yvonneam

Hi Lori,
Yes mine will be anthologist, stem, cell transplant, isolating in our nearby condo instead of being in the hospital for five weeks like my daughter was.

Yes, I see her as the trailblazer which allowed for me to have an easier time with this experience.
My target date is Mid-February.

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I wish you well with your transplant. Don’t hesitate to check in here on Connect. There are many members who have had an autologous BMT for MM or other conditions. It can help being able to talk with someone who has walked the same walk…though your daughter was a brave trailblazer for you already! ☺️ Will she also be your caregiver?

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yvonneam | @yvonneam | Nov 26 3:06pm
In reply to @yvonneam "Hi Lori, Yes mine will be anthologist, stem, cell transplant, isolating in our nearby condo instead..." + (show)
@yvonneam

Hi Lori,
Yes mine will be anthologist, stem, cell transplant, isolating in our nearby condo instead of being in the hospital for five weeks like my daughter was.

Yes, I see her as the trailblazer which allowed for me to have an easier time with this experience.
My target date is Mid-February.

Jump to this post

Oops autologous not anthologist.
And yes, sharing a birthday or anniversary would have been my first choice.

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yvonneam | @yvonneam | Nov 26 2:58pm
In reply to @loribmt "Hi @yvonneam, I’m jumping into the conversation a little late. Wow, your daughter had her MUD..." + (show)
@loribmt

Hi @yvonneam, I’m jumping into the conversation a little late. Wow, your daughter had her MUD BMT 20 years ago…that was still relatively early in the stem cell transplant treatment. Congratulations on her upcoming 20th anniversary. I’m so happy she’s had such a positive outcome…she is inspiration for the rest of us who are relative newbies. I recently ‘cell’abrated my 5th anniversary.

And now it’s your turn for a BMT? I know we like to share these special moments with our daughters but this is going above and beyond. 😉
With your diagnosis of multiple myeloma, will you be able to use your own cells for this transplant? If that’s the case, your recovery period will be much shorter and with no concern for GVHD because they are your cells.

Do you have a target date?

Jump to this post

Hi Lori,
Yes mine will be anthologist, stem, cell transplant, isolating in our nearby condo instead of being in the hospital for five weeks like my daughter was.

Yes, I see her as the trailblazer which allowed for me to have an easier time with this experience.
My target date is Mid-February.

REPLY
2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Nov 17 5:33pm
In reply to @yvonneam "Hi Deb, I’m new to this list but not new to the experience of transplant. My..." + (show)
@yvonneam

Hi Deb,
I’m new to this list but not new to the experience of transplant. My daughter had a MUD BMT 20 years ago this November. She is 40 and enjoying life on the other side of the experience. Back then the internet was still pretty new and we had a list serve email system for supporting each other. As for mouth sores, I would give her Bio-K probiotic. Even on the days she didn’t want to eat, she would swish it in her mouth. She never had a problem with mouth sores— only one the entire treatment. The nurses at City of Hope would come in just to look at her mouth. She had only one day of TPN and maintained her weight. Interesting that ice chips is the go to suggestion now. Of course our shared information was not studied enough to be evidence based and since no drug company can capitalize on it, there was no funding to study whether the replenishment of good bacteria is what made the difference for her. Yes, she have Gvhd but she was off of steroids within the first year and has made a beautiful life for herself.
All the suggestions bring back memories. I will be following her with a stem cell transplant for myeloma in about 4 months. Mine came on just as I was retiring and starting the adventures and freedom of making it to 65. So grateful for the continued progress in treating these diseases. Life goes on and soon this will be a footnote to a full life! Sending you healing and comfort as you approach this time.
Oh, and audiobooks really helped pass the time. Back then they were CDs 🙂

Jump to this post

Hi @yvonneam, I’m jumping into the conversation a little late. Wow, your daughter had her MUD BMT 20 years ago…that was still relatively early in the stem cell transplant treatment. Congratulations on her upcoming 20th anniversary. I’m so happy she’s had such a positive outcome…she is inspiration for the rest of us who are relative newbies. I recently ‘cell’abrated my 5th anniversary.

And now it’s your turn for a BMT? I know we like to share these special moments with our daughters but this is going above and beyond. 😉
With your diagnosis of multiple myeloma, will you be able to use your own cells for this transplant? If that’s the case, your recovery period will be much shorter and with no concern for GVHD because they are your cells.

Do you have a target date?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 17 1:09pm
In reply to @yvonneam "Hi Deb, I’m new to this list but not new to the experience of transplant. My..." + (show)
@yvonneam

Hi Deb,
I’m new to this list but not new to the experience of transplant. My daughter had a MUD BMT 20 years ago this November. She is 40 and enjoying life on the other side of the experience. Back then the internet was still pretty new and we had a list serve email system for supporting each other. As for mouth sores, I would give her Bio-K probiotic. Even on the days she didn’t want to eat, she would swish it in her mouth. She never had a problem with mouth sores— only one the entire treatment. The nurses at City of Hope would come in just to look at her mouth. She had only one day of TPN and maintained her weight. Interesting that ice chips is the go to suggestion now. Of course our shared information was not studied enough to be evidence based and since no drug company can capitalize on it, there was no funding to study whether the replenishment of good bacteria is what made the difference for her. Yes, she have Gvhd but she was off of steroids within the first year and has made a beautiful life for herself.
All the suggestions bring back memories. I will be following her with a stem cell transplant for myeloma in about 4 months. Mine came on just as I was retiring and starting the adventures and freedom of making it to 65. So grateful for the continued progress in treating these diseases. Life goes on and soon this will be a footnote to a full life! Sending you healing and comfort as you approach this time.
Oh, and audiobooks really helped pass the time. Back then they were CDs 🙂

Jump to this post

@yvonneam, I add my welcome (although I'm later than @katgob's kind welcome.) It must've been hard to see your daughter go through BMT and now, through a twist of fate, she can be your beacon of hope. I love that you are already referring to this as a footnote. You've got retirement plans to get to, right?

How are you preparing for upcoming treatment? Are you able to build a healthy weight and physical form? How are you feeling?

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katgob | @katgob | Nov 7 8:49pm

yvonneam
I had my BMT at City of Hope in April. Ice chips for the duration of my Melphalan treatment stopped me from any mouth sores. I was also in a research study to prevent GVHD and i am today 211 days past transplant with no GVHD. I had MDS. Lori is one of the mentors and like her, my 26-year-old donor has taken up my marrow and made a home. My 64-year-old cells have not kicked him out. She has been a wonderful support since my conditioning days. Her donor was a younger fellow!😊😊
Keep ius posted on your journey. Your daughter sounds like she had a wonderful journey so far.

REPLY
yvonneam | @yvonneam | Nov 7 6:53pm

Hi Deb,
I’m new to this list but not new to the experience of transplant. My daughter had a MUD BMT 20 years ago this November. She is 40 and enjoying life on the other side of the experience. Back then the internet was still pretty new and we had a list serve email system for supporting each other. As for mouth sores, I would give her Bio-K probiotic. Even on the days she didn’t want to eat, she would swish it in her mouth. She never had a problem with mouth sores— only one the entire treatment. The nurses at City of Hope would come in just to look at her mouth. She had only one day of TPN and maintained her weight. Interesting that ice chips is the go to suggestion now. Of course our shared information was not studied enough to be evidence based and since no drug company can capitalize on it, there was no funding to study whether the replenishment of good bacteria is what made the difference for her. Yes, she have Gvhd but she was off of steroids within the first year and has made a beautiful life for herself.
All the suggestions bring back memories. I will be following her with a stem cell transplant for myeloma in about 4 months. Mine came on just as I was retiring and starting the adventures and freedom of making it to 65. So grateful for the continued progress in treating these diseases. Life goes on and soon this will be a footnote to a full life! Sending you healing and comfort as you approach this time.
Oh, and audiobooks really helped pass the time. Back then they were CDs 🙂

REPLY
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