Can anything prevent peripheral neuropathy after stem cell transplant?

deb13, So you have the central line on the chest called the Hickman? I thought i was getting that because the materials i got from the transplant team spoke of it. My 1st visits before conditioning i got a picc line in my arm.
With Breast cancer I had a snap up front and a zipper dress. I realized my T-Shirts were too much work.
You will be hooked up to an IV pole, so the chest line still requires working around IV lines. It seems more manageable. I will say something that buttons or zips is so much better. They do check your heart and daily and do vitals every 4 hours. Something you get used to. Builds the connection with the nurses who care for you. All of them I had say they chose Floor 6 for its focus on the patients.
Lori always said wearing your own clothes and having your own comfy items will make this a more calming life changing experience.

Maybe good to google this process.
https://www.careandwear.com/blogs/community/117518467-the-best-clothing-for-your-chemotherapy-treatment-sessions

Hi again - a quick question regarding shirts for long hospital stays with central line and Ivs. I was planning on mostly short sleeved tshirts so they could get to central line easily but are you saying button or dipper fronts are better for easier access ? I couldn’t visualize how button down might be better than a plain tshirt. But I want to bring what works best. Thank you.

deb913- Yes, stay positive. You will be helped from day 1. I made it through with just my brother and a couple friends visiting. Thi ite and my transplant team kept me focused on what my end goal would be. Losing my hair 2 times in 3 years was the biggest deal so far. It is not looking like my usual red hair this time, so my transplant donor may have some say in my final color. Who knows yet. Enjoy the weekend a day at a time.

Hi Katgob, Wow your tips and insights are invaluable. I can’t thank you enough. It makes me feel so much better when I can feel prepared and this helps more than I can say. It also helps hearing from people like you who made it through- because it does sound daunting to say the least; but I’m trying to focus on the positive end result. Thank you 🤗

Lori helped me just like you. Bring the things she suggested. In hindsight you will not believe these 100 days were all managed and you are alive and thriving because you faced each day as it unfolded.
I had great plugs behind my bed, so my phone charger and device chargers were handy. I used much of the items she suggested at my caregiver's house later. I will say i was in the hospital nearly 28 days. I did not wear my own top. I am not large busted and i have barbie boobs. I wore the new gown they gave me daily and never a bra. I wore my own lounge pants. I had a lot of them. I had flower adorned caps for my bald head through headcovers.com. I had them from when i lost my hair through breast cancer. Out of the box at home they came. I wore them every day. I had a number of them. My brother picked up my laundry to wash my undie and lounge pants. Socks- they want nonskid ones. The floors are cleaned daily, so you can wear slippers or house shoes. I wore hospital socks and mixed with slippers.
I had one big suitcase and another small. I had lots of undies. Because I was hooked up to an IV with all sorts of drugs every single day, unless i had shirts with buttons or zippers, wearing different shirts just did not work for me. I had brought my own blanket, but again, the sheets are washed daily along with the blanket. Germs.
I did not read my books. I did have a bunch of magazines i read. After the transplant and about 2 weeks after transplant, I opened my computer. I did not bring my tablet. TV. I watched more daytime talk shows and the link then i had in years. Movies and so much more.
Toiletries- In the hospital you cannot use your toothbrush. I had a soft kid kind of one, with toothpaste, but i also was given biotin i swished with 5 or 6 times a day. Protecting our tender gums after conditioning and chemo. A shower every single day with a medicated soap. Staying in the hospital has routine. Learning to shower with a plastic cover for my Picc line so i could shower with it covered and then taking my iv pole too next to me in the shower. I named it my little sister. It goes everywhere we go. It is your buddy. Trips to the bathroom are often.
Daily you have the aid who changes your sheets and gets you fresh towels. Helps put the plastic picc line cover on and take it off. Our floor had mostly males. Very kind and careful . There is also the cleaner. Ours on Floor 6 has been doing this for 25 years. She was kind, quiet and thorough. No dust in the room. MY OWN ROOM!! Floors, restroom, shower, toilet, sink. Noone touched my stuff, they cleaned around it. I had a nightstand for stuff and a TV cabinet with drawers for my clothes and undies. I had my own snacks too.
FOOD- They want you to eat. They encourage fluid along with your everyday IV. The hospital food was very good. The chemo day, transplant day and research chemo day had me nauseated. It was only a day or so. I ate crackers, but these 7 days or so sleep was my friend and the fool TV and some foods i had like graham crackers to snack on. I finally got help for my vomiting when i did it at the 8am dr tour. I could not stop it while they visited. Soon after I got a med called Emend. A 72-hour pill that stopped this nausea and it worked to stop my body. What a relief. Regular nausea meds did not work with the melphalan chemo. In the hospital, you can get the help you request for anything that happens. Our RNS had4 or 5 patients per shift. Doctors do not like to see their patients uncontrollably throwing up. There is no faking there.
Not sure which device you will have. There is a picc line in your arm, the Hickman line that goes on your chest. I had a port for Breast cancer treatment and a picc line put in for the transplant.

The comfort of the routine is the nurses who follow it. I rotated a number of the same nurses for the day and overnight shifts. I loved talking to them as they comforted me each day as my numbers were posted in the morning. Told me i was doing well. Always asked how i was feeling. Every day round 8:00am the doctor team visited each of us. Gave us a body check looking to see about fever, BP, heart rate and blood tests of the morning. Consistency, it was never my Hematology dr. but the doctors assigned did 2-week rounds. They got to know us. Later i found they would give my Dr. updates. My Dr. told me they really enjoyed coming to see me.

It is a whole lot of daily updates, blood taken every 4 hours. I was on floor 6 at City of Hope. We were encouraged to take our IV poles and walk around the floor every day. You cannot go outside there, but there is an area overlooking the mountains by the elevators where they had art days and greet the animal's day. I tried a very day to go walk the halls. By doing it, i met a number of patients which I loved. There were 36 beds on that floor that always have someone in them. We have been given a lifesaving gift that we can only repay our donor by given it all we have to recover and thrive. On Floor 6 it is a transplant floor.
Leaving through the front doors of the hospital my final day i stood outside and just stood there breathing and smelling life in session. People, vehicles exhaust, flowers and all. I then went to spent 75 days at my care givers house.
A DAY At A TIME!!!!!

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! 😂

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.

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

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,
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.