Needing help and insight about chemotherapy (Male 27)

[u/RainS__]

Hi, I'm Male (27 years old) reasonably fit and healthy until I got diagnosed with synovial sarcoma about a month ago. I underwent surgery to remove the tumor located at my left armpit. Luckily highly local and no found metastasis from the scans.

My chemo treatment is starting in a few weeks time and will be given daily for 4 days and repeated every 21 days for 5 times. I'm receiving Doxorubicin + Ifosfamide + Mesna. I've searched it's also called the "AIM" protocol.

This is not something I know a lot about and would like to know more before my treatment. Has anyone done a similar protocol? How have you managed the side effects? A quick search online shouts that it's a hell of treatment and I'm bound to have the worst time; making me worried. Any chemo tips, heads up/what to expect, or personal experience with recovery is greatly appreciated.

Update: Thank you all for the generous response. I now get that it would be tough but not impossible especially with your valuable insights. I’ll keep this post updated as i move towards a cancer free life. Stay healthy, take care.

[u/Faunas-bestie]

I (65f) did six rounds of AIM, each with a five day stay in hospital, as I was on a 72 hour drip. Some hopefully helpful tips:

Get up and move as much as you can. Each round I’d start with walking laps around the ward. Days 1-3 were great for that, by 4-5, I was wiped out. Rest when you need to.

Use baking soda and salt with warm water for the mouth sores. Keep up with your stool softener. Don’t wait till you’re pooping rocks.

I found days 9-14 were the worst, I was on a 21 day cycle. The last seven days I’d be out playing pickleball, literally every day of it and doing my daily yoga.

Try and go for walks when you can. It’s huge for fighting fatigue. You won’t want to, but once you get up and move, it gets better.

Stick to your coziest most comfortable clothes, sheets, pajamas and towels. Comfort is key.

Keep up your protein, fruit, and vegetables. I was having daily smoothies that consisted of: 1 container Chobani vanilla Greek yogurt 1/2 cup blueberries or black berries 1 T honey 1 T sliced almonds Ice

It really helped me. Sometimes I’d switch it to pineapple with toasted coconut, (instead of the berries and almonds. The toasted coconut was easy…and so amazing. (Toast on the stove in a dry nonstick pan)

Wishing you the best of luck. My lung Mets disappeared and for five months I was treatment free…then in all came back. Now I’m on Votrient.

[u/timewilltell2347 → u/Faunas-bestie]

So sorry you’re back on treatment, but I’ve been curious about Votrient as it’s the possible next line treatment if the clinical trial I’m in stops working. Did it make your hair go white? Are side effects manageable?

[u/Faunas-bestie → u/timewilltell2347]

My hair did go white, but I’m equipped with brow pencil, mascara, and L’Oréal hair dye. The side effects are 1000% better than any of the chemos I’ve been on. I play pickleball most days, do yoga every day, and take a 30 minute nap at 3:00. I’m able to travel, live and enjoy like and after my first round, my tumors were dissolving from the inside out. Very good news. The bad news came when it was working so well, it created a hole in my lung and a pneumothorax. My lung collapsed but it’s since been repaired and I’m back on treatment.

[u/timewilltell2347 → u/Faunas-bestie]

Thanks so much! I’m glad it’s given you a lot of life back!