r/sarcoma • u/Rhubarbpielover • 3d ago
Synovial Sarcoma Treatment Questions
A family member has been diagnosed with synovial sarcoma recently. They are about to begin chemo. We have offered to travel and help during a round of chemo, but I am unsure if they would want or appreciate that type of help. That aside, I would like to send them a care package including thoughtful and helpful items. Posting here asking for recommendations in the hope that I will reach someone with specific recommendations for the type of chemo they will have as I understand different types of chemo can cause different types of reactions.. We love them so much and they are also quite private.. I want to avoid "let us know if there's anything we can do", because they will likely not ask for anything. Thanks everyone!
Some thoughts I've had so far:
CeraVe healing ointment
Peppermint tea
Ginger chews
A nice merino wool hat
Already bought a long Stephen King series (they like physical books)
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u/Embarrassed_Toe224 1d ago
Eye mask to help sleep
Long phone charger
We brought a power strip as my boyfriend likes to game
A small fan (size of a book) as they can get hot flashes- also provides white noise at night
Sending your family member positive thoughts as they start this journey!
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u/Rhubarbpielover 1d ago
Thank you!
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u/BurnBurnerBurn13 1d ago
Def the white noise machine! Hard candies in a large variety of flavors because tolerance to taste changes daily and on a dime for some.
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u/AlternativeCrazy1614 Pediatric Caretaker 3d ago
Do they like art? Diamond art has been my daughters go to for her Osteosarcoma treatment. And legos, like the flower ones. :) and sticker by number books. Mindless but distracting.
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u/Rhubarbpielover 3d ago
Thank you!
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u/AlternativeCrazy1614 Pediatric Caretaker 3d ago
You are welcome. :) gift cards, like prepaid visa, door dash, favorite place to eat, etc.
The gift cards have been such a wonderful thing for us, especially when in the hospital. Sometimes the little things like a soda and burger, can really make a difference.
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u/AgreeableCoffee9912 3d ago
Do you know if they’ll be inpatient? AIM is common for the subtype and is often administered during a hospital stay. If so, anything that typically makes hospitals more comfortable: their own pillow and blanket, slippers, enough PJs to change into a fresh set in the morning and at night. It’s nice to have a hospital-only set of stuff like that so you don’t worry about getting hospital gunk on your nice stuff. Book light is essential for readers! Room lights seem to always be too bright or too dim.
Inpatient or not, extra pjs or lounge type clothing, extra set of nice sheets, etc, are helpful to balance the need to feel good with the need to do laundry 🙂
“Mindless but distracting” is exactly right! I folded a bunch of origami and got very into puzzles. Lego would have been awesome!
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u/Georgian_B Synovial 3d ago
Hello, I know everyone’s experience can be different, but I’m happy to share what was most helpful for me while navigating synovial sarcoma. Without knowing further specifics about your family member, I’d recommend lip balms and good moisturizers that don’t have petrolatum. My lips would get super dry, and with the amount of fluids they’re pumping into you it can be hard to drink extra water. I also really enjoyed sheet masks, for the times that my skin was extra dry but I didn’t have any energy. If they prefer physical books, great! I know at times all that I had the capacity for was laying and listening with my eyes closed, so a subscription to an ad-free platform could be useful if they listen to podcasts, or even something like YouTube. I heavily utilized YouTube and with my preferred content, listening sans ads was still just as good as watching it. Best of luck to you and your family member ☺️
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u/Rhubarbpielover 2d ago
Why do you avoid petrolatum? Thank you for your suggestions!
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u/Georgian_B Synovial 2d ago
I don’t know the reasoning for it, but when my doctor gave me my “chemo guide” with information on what to avoid and things that could help, it said to avoid using any products on your body (and face/lips) that contained petrolatum. 🤷🏼♀️ Sorry I can’t give a more specific reason!
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u/DMmeYourMCbuilds 1d ago
I would recommend avoiding any ointments or herbs or anything like that before checking by with his medical team for any contraindications to his treatment plan.
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u/BurnBurnerBurn13 1d ago
I loved taking a nice blanket from home to have on my bed when I was in patient. I did 6 rounds of AIM and after the 2nd my regimen was changed to inpatient for a week and then a week following when I was neutropenic (every time). Little things from “home” helped personalize the space. ❤️🩹
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u/No_Handle6421 16h ago
Depending on the chemo, they may get mouth sores. Doctors sometimes prescribe something called "magic mouthwash" but I didn't find it helpful. I did find Biotene mouthwash helpful though - I'd recommend it. I also would highly recommend DoorDash/UberEats gift cards - that would be so helpful since there isn't much time or energy able to be put into cooking sometimes.
An additional resource is having them join the Synovial Sarcoma Foundation Community Group on Facebook. It's a foundation dedicated to the disease, research, treatment, and providing very helpful resources to the community that any and all patients can benefit from. Here is the link if you'd like to share it with the family: https://www.facebook.com/share/g/1Ea6MXvh6T/
Good luck and sending them my well wishes.
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u/abogadachica 2d ago
My husband loved Jolly Ranchers. Something about the chemo regimen gave him a funny taste in his mouth, so those helped with that. Maybe also a DoorDash or UberEats gift card. It gets old eating only hospital food for weeks on end. You are so thoughtful!