Can anything prevent peripheral neuropathy after stem cell transplant?

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!!!!!

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 🤗

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 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.

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 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 🙂

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.

@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?

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?

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.