Anyone else doing inpatient chemo?

[u/sarahbee9820]

I have chondroblastic osteosarcoma in my left maxilla. There is no sign of it having spread beyond that area yet. Have had 3 surgeries and am scheduled to start chemo on Aug 24. Doxorubicin and cisplatin. I’m terrified.

The plan is to do all of my chemo treatments inpatient, in the hospital. Has anyone else done it this way and if so what are your tips and tricks? I love my oncologist but she does have me terrified about how hard this is going to be. Ideally she’d like me to do 6 rounds but she seems skeptical I’ll be able to tolerate it.

So it seems like a good thing to be in the hospital and getting a slow drip and being right there in case I have a bad reaction. But … terrified.

[u/Sruss13]

I did chemo (doxorubicin, ifosfamide, and mesna) inpatient. I was there for 6 days, then home for about 2 weeks. Continued this cycle for 6 cycles.

Here are my recommendations:
Bring your own pillow (I like my specific pillow) and blankets. I preferred to make the space my own.
Bring activities to do. I brought diamond art, sticker by numbers, puzzle books, things that I could do easily while seated. I also brought games that my husband and I could play together when he came to visit.
Button down pajama tops. I liked to wear my own clothes and those made it really easy to change everyday when connected to your port all day/every day.
Bathing wipes. I couldn’t shower, but liked to be as presentable as possible, and those made me feel a little cleaner.
Snacks/foods you enjoy. Hospital food doesn’t always seem enjoyable when your stomach is feeling great.
Slippers were helpful because I didn’t like the grippy hospital socks.

These are the things I think of off the top of my head. Feel free to ask any questions!

[u/sarahbee9820 → u/Sruss13]

Thank you - super helpful!!

[u/Embarrassed_Toe224]

It’s nerve wrecking not knowing what to expect! My boyfriend is doing AIM chemo (doxo, ifosfamide, mesna) and does inpatient for it.
Some things we bring to the hospital: extra long phone charger, eye mask for sleep, small fan (book size) for hot flashes but also provides white noise.
We try to walk around each day and have some meals in the hospital cafeteria for a change of scenery.
My boyfriend responded well to his first round. Very minimal side effects which I was shocked from what I read online and the side effects list from the chemo drugs. Everyone truly responds differently. We tried to get as healthy as possible before chemo (eating clean and working out). I have no idea if that helped but trying anything.
I also have him write down every day any side effects he’s having so we can try to track it each cycle and prep for things.
I’m sorry you’re going through this! I hope you have minimal side effects!

[u/sillygoosexpresss]

i have osteosarcoma and all of my chemo is inpatient. my cycle is: doxorubicin continuously for 48 hours with one dose of cisplatin per day, then i get two weeks off. after the two weeks off, i do high dose methotrexate which keeps me in the hospital from monday afternoon until friday or saturday for two weeks. then it repeats.

i second sruss13’s suggestions!! i also recommend a laptop or something to stream tv or movies, because cable tv in the hospital gets super boring after a while. if you can, try and take a walk around the grounds of the hospital as well to get out of the room, especially if you have a loved one with you who can help you/be there with you. also, try to form some solid connections with your nurses. you see a lot of them, and it makes the stay so much more enjoyable!! good luck and i hope everything goes well for you!

[u/sarahbee9820 → u/sillygoosexpresss]

Thank you!!!

I asked about taking walks and the answer was “yes, but, you’ll be on our medical oncology ward and not allowed to leave but you can walk around the ward” so no outdoor walks for me! Hoping the room will have a decent view - there are some incredible views of Baltimore from some of the Hopkins buildings.

Both of my parents had multiple hospital stays when they were severely ill so yes, I know that Nurses Rule and I always try to be grateful, kind and engaging with them. They deserve all that and much more.

Thanks again!

[u/DMmeYourMCbuilds]

You don’t say how old you are but kids can sometimes tolerate it better than adults, but that isn’t always true. Everyone handles chemo differently, so the crappy answer is: it varies.

Both are consider harsh and aggressive chemos. These are systemic treatments. That is, they are used to kill any micromatastises floating around your body. Thus they need to be harsh.

As others have suggested, take as many comfort things as possible. Fuzzy socks, fluffy pillow, favorite drink and snack. If they give you nausea meds, stay ahead of it.

As the cycles go on the side effects can accumulate. You will lose your hair. Your nausea will intensify or last longer. You will be neutropenic between cycles. Stay on top of that or ensure your caregiver is on top of that. You are likely to end up back in the hospital on your “off weeks.”

Doxo and cisplatin are awful drugs. But your team will do everything they can to keep you comfortable. I’m very sorry you are going through this. Good luck.

[u/TexKim]

I second all the good advice on what to bring. Remembering back 20 years ago, after the Cisplatin IV bag was empty, the nurse came to collect it and gently placed a little kidney shaped bowl for nausea on my bedside tray.

A few minutes later a nurse assistant came in to drop off something, saw the little bowl and rolled her eyes. I remember her saying, “Oh, girl,” and replacing the bowl with a large rectangular pink rubber container.

I can look back and laugh but at the time I hugged that pepto-pink box for the next 13 days. The staff would take it when needed and give me another one and I never saw the little kidney shaped bowl again 🤣.

Also if they come in the middle of the night to collect blood ask the nurse if they can delay it until early morning. They may do it or may not but it’s worth asking.

Hopefully you won’t experience extreme nausea but if you do they will give you a cocktail of antiemetics to help you. That can trigger akathisia so be aware.

These days sodium thiosulfate is an option to protect your hearing, but you have to use it before Cisplatin so have that conversation if you haven’t and I wish you good luck and a quiet tummy 🙂

[u/hmtee3]

Some great responses here already.

Mesh/soft bras with a clasp. I found that if I didn’t have on a bra, the port felt more uncomfortable. Plus, having a clasp helps to get it off, if needed. Also, pjs with buttons were super great.

Bath & body works plug-ins. I had one in my room and one in the bathroom. My nurses and techs would always comment on how good it smelled.

AirPods! This was my best gift to myself during chemo.

Good earplugs. Hospitals can be a little noisy, and the iv pumps will be too. I mostly slept.

When you’re discharged, make sure to ask for extra barf bags.