Can anything prevent peripheral neuropathy after stem cell transplant?

Hi Deb, From my experience with several rounds of intense, inpatient chemo for AML, I did have some limited peripheral neuropathy with my hands and feet from the cytarabine and idarubicine. The worst of that diminished within weeks of the final session. I don’t recall having worsened neuropathy with the conditioning chemo for the transplant.

Chemo is notorious for causing PN. For most people it is a temporary issue. Here is a good article which will help clarify what happens: https://www.healthline.com/health/cancer/neuropathy-from-chemo

I believe @katgob, who recently had her transplant was given ice chips while she had her chemo to help avoid mouth sores. But I’m not sure that helps with avoiding neuropathy caused by chemo. I’ve read about the icepacks too. That will be a good question to ask of your transplant team.

Graft vs host disease can happen to any of us who have an allogenic transplant using donor cells. They are the graft which become our newly transplanted immune system. As was our old immune system, it will be in charge of safekeeping our body (the host). The only thing is, the body is now foreign and the new cells will seek to destroy it, just like it would any invader. Hence the name, Graft Vs Host Disease.

When the donor is selected, there are specific HLA proteins that are matched with our body so that there isn’t a huge disparity. Even so, there are proteins which won’t match perfectly. However, immune systems are adaptive, so even our new immune system, in time will learn to recognize these proteins and gradually the graft and host learn to play well together. Some take longer than others. In my case it was 2.5 years before I could fully stop taking the anti-inflammatory meds.

That’s why it’s important initially to be given anti-rejection meds (anti-inflammatory meds) to keep the new immune system from being too aggressive. It’s held back from its full potential for several months on the meds and then gradually you’re tapered off to see how the new immune system responds. There have also been breakthroughs in treatment since I had my transplant 5+ years ago with the meds that are preemptively administered at the time of transplant to prevent GVHD. They have reduced the potential for the disease.

If there is neuropathy caused by GVHD it would be handled differently than PN caused by chemo. While there can be some neurological issues, skin rash is generally the most common. Sometimes digestive system or lung issues. If a problem arises and is not treated quickly, then it can become chronic. Your team will check daily for any concerns you might have. That’s where it will be important for you to let them know if you see a rash on your body or have any new symptoms of a cough, diarrhea, or basically anything. I know that sounds nebulous but my nurses used to tease me that they wanted to know if I had a new hangnail. 🙃

Believe me, I had concerns of getting GVHD too. I think we all do! It sounded terrifying. However, my transplant doctor and team told me something that I found comforting, “You will most likely have some gvhd. You need some gvhd! We don’t know what will manifest or when, but we will take care of it…let us do the worrying for you.” And they did!! A burst of steroids (5 days) is usually enough to get things under control. We need to have some gvhd. It essentially becomes ‘graft vs leukemia’.

You and I have different forms of leukemia but both are caused by a glitch in our bone marrow (immune system). So replacing that immune system gives us a fresh start! That’s the goal; Getting a new, healthy replacement for our failing immune system…to prevent us from having the leukemia relapse.

My advice to you is not live in fear of gvhd and maybe stay away from the internet. Trust your transplant team instead. They become your family and have seen it all! They want a positive outcome for you as much as you do!
And you can trust those of us in Connect who have had our transplants. While completed at different clinics we have all experienced similar journeys along this path.
I hope you stay in contact along the way. I’m here for you along with all the other SCT members! I can’t remember, are you being treated as an inpatient, remaining in a hospital for an extended time or will you be an outpatient?

Lori wrote wonderful info. So very true. I have talked with others that did not have this ice treatment, but when i was given the Melphalan, I was provided a full hour of ice and popsicles and a commitment to keep my mouth frozen. It had proven to help stop mouth sores from happening. I had no mouth sores. For me it worked.
GVHD, I was in a research study taking itacinab from Day 5 after transplant to day 100. So far, no GVHD. I was told by the research/transplant team that some people never get GVHD. I had MDS.
Leukemia has a few more variables, but as Lori says, the team is watching your numbers and you and together you can handle anything that comes up. I will tell you that at day 189 past transplant, so much of the uncomfortableness of the early days are gone. Each day is a new day.

Keep us posted Deb.

Hi Lori, Thank you so much for that helpful information. It helps so much to hear from people like you who have been through it; and you have such a thorough yet comforting way of explaining things. I want to make sure I am doing everything I can to try to have a positive outcome so it's very helpful to know others experiences . To answer your question, I will be in patient for about 1 month and then at least 2 weeks at a local hotel, and then home after that (we live about 45 minutes away from hospital). Thanks so much - I can't tell you how much your words help me.

Hi Katgob, Thank you so much for your message. I have heard about the ice chips and I'm glad you mentioned it helped because I will make sure I do that when I'm getting the chemo. And I did ask my doctor about the drug you mentioned itacinab, and while she was aware of it she plans to use a different drug that will also hopefully lessen and prevent GVHD; she wanted me to be part of that clinical trial (haven't gotten info on it yet). Thank you so much for sharing that you are feeling more comfortable - that will give me something to remember - that it will get better. I really appreciate your note - thanks again.

Hi Deb, it’s my pleasure to help. Back when I had my transplant my husband and I pretty much flew by the seat of our pants…there was no one that we knew who’d ever had AML or a BMT. My BMT team was amazing in providing information, encouragement and support. But it’s not substitute for having information from someone who’s walked the walk.
So don’t hesitate to pop in any time to ask questions. You’re never alone here. ☺️
Are you all set for what to pack for a long stay at the hospital? Make sure to take a small extension cord for your phone, tablet, etc! Let me know if there’s anything else I can help with!

Hi Lori,
Thanks for your response - very helpful. I would love any tips about what to bring to the hospital- any tips are welcome but some that come to mind - how many sets of clothes to bring - can u wear the same hat or pants twice or do u need all clean every day?- Did you find you wore hospital gowns more or your own clothes ?(I feel like I’d like to wear my own but wasn’t sure that was realistic) - Any particular recommendation's on types of clothes or shoes or just comfy? Are there any particular hats you’d recommend (for bald head) - - how did you pass the time or were you so sick you didn’t care? lol as you can see my mind is swimming with questions. Thank you so much. You and this group have been the best resource and support for me.

Since you’ll be in the hospital for a month plus…you’re not going to want to rely on gowns. Psychologically, for me anyway, if I was stuck in a hospital gown I felt like an invalid.
I felt it was important for my mental health to get dressed.

For you, this clinic stay will be all about comfort and no one will judge what you’re wearing. From my experience it was perfectly ok to wear clothing more than one day. Seriously don’t worry about a bra! I usually wore a tshirt, hoodie and yoga pants most days, jammies at night. Admittedly, sometimes 24 hours when my apathy took precedence. 😅

I ordered a several pair of these jammies from Amazon. (Actually, I ordered these when I was in the hospital for the first 5 weeks, going through chemo for AML. So Amazon was my only option…but the jammies saw me through months of chemo and the transplant. 5+ years later I STILL wear these!)
They run small so order a size up from what you’d normally wear. Easy to launder and didn’t shrink. Super soft!
Here’s the link: https://www.amazon.com/gp/product/B07B7H1FYW/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

For my head: (another Amazon purchase). Women's Slouchy Beanie Hat Chemo Caps
https://www.amazon.com/Womens-Slouchy-Headwear-Sleeping-Multicolor/dp/B0CQ7M3FB5/ref=sr_1_22_sspa?crid=2S2NWOH3JS4Z2&dib=eyJ2IjoiMSJ9.pc6n6Gl7r_lH5Vyo3C7B_wuggQIsmiV5_XVtMCmqx3R6vJrlkhJ-EtiM1g96MmUsgqmr_hQioR1se64q10TV3ztkPZgOTAAiCHTPrtB2fUHnodVPrujUmlh995E5BVzbgeN6ht5DZHNcxj5Np_HCb6vBP3svo-HlvkW8samcA-0-KsNboaBin8XY3qb1LH3DrYw-HFABCLWhPAtsjQVvu88Nkrn2OFSN9HkLnFK-ySy4vrKANQl31zM0CScjjoltVqgvhhchFCwCxwthPppXE3SdwGpB-Mm5_2myzCcyBZw.4k06YDacuZu1qqBbCPh8M-GLlAfmKaucfCLYVDBeyWM&dib_tag=se&keywords=Chemo+hats&qid=1729172413&sprefix=chemo+ha%2Caps%2C523&sr=8-22-spons&sp_csd=d2lkZ2V0TmFtZT1zcF9tdGY&psc=1
You’ll want to keep things simple and easy for your caregiver to launder for you. I had a plastic bag where I’d put my to-go laundry. My husband did the laundry at our hotel and kept recycling for me. I had a small suitcase that fit in the locker in my hospital room that held my ‘stuff’.
Also had a small toiletry organizer with personal supplies that I could keep near by or in the bathroom.

Ok, here’s my list of clothing for hospital. I’m sure others will pop in with ideas for you:

A week’s worth of skivvies
Don’t worry about a bra.
Comfy PJs
Hoodie or Loose over-shirt. (Robe if you prefer)
A couple comfy t-shirts that fit loose enough around the neck to accommodate port access.
Couple pair of yoga pants
Warm socks for bed
Beanies/chemo caps, sock hat
Firm soled slippers (I wore Keen Howser slippers)
Take your favorite pillow and 2 pillow cases.
Small throw or blanket. Mine had penguins. 😉
Personal hygiene products (in the toiletry bag)
Definitely take lotion & lip balm!
Small extension cord
Phone, tablet, laptop, etc. for your entertainment
Snacks.
If you have a couple personal items to make your room feel homey that’s fine.

I was outpatient so I returned ‘home’ to the hotel the next day. But when I was in the hosptial for 5 weeks (8 wks total) for AML treatments, I had downloaded a ton of audio books that I never finished because they’d put me to sleep! LOL. I binged watched series on Netflix, etc. I also took a small bag of art supplies along…such as travel size watercolor, water brush, paper pads and a little hand stitching project.

Frankly, you’ll feel pretty tired, maybe nauseated and want to sleep most of the time the first couple of weeks. Your body will be going through a lot and it will take time to recover. It’s an understatement to say this will be the medical adventure of a lifetime…but on the other side of it is a 2nd chance at life.
I’ve given you a lot to digest today! I know it’s daunting and feels overwhelming. But this will all unfold as you go along so try not to stress. Your BMT team will do their best to keep you comfortable. Don’t ever hesitate to ask them anything or express concerns! This is not their first rodeo, but it is yours. 😉

Hi Lori - This is beyond helpful. Thank you so much. I am so thankful for all your tips and support.

Hi again Lori, Just wondering - what is a "sock hat"? And were you comfortable sleeping in the slouchy caps or is a simple "beanie" style better for sleeping? As an fyi - I have a smallish head. Thanks.

Oh by sock hat I meant knit stocking cap? Like we wear for winter? But for me that was too hot. The little chemo beanies/slouchy caps work perfectly. I have a small head too and the beanie link posted for Amazon is what I wore. They’re not too tight but stayed on my head just fine.

The great thing is that they’re so flexible. They open up into gators! Like stretchy headbands. So I actually still wear them even though my hair returned. I wear them around my neck or sometimes pulled up to make a headband. They’re not very expensive so it’s not a huge investment to try. I did have nicer beanies for ‘formal’ wear. LOL. Those came from Headcovers Unlimited. Bought things to match outfits.
I really got used to being hairless which was a change from my ‘long hair in a messy bun’. So quite frequently I went without anything on my head. Except that I got cold! And felt better with a little head covering…along with my blankie and cute socks, my doctors/nurses were quite entertained! 😂