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/CareBearVanilla]

I had synovial sarcoma in my foot. I was scheduled to have 6 cycles of AIM plus 8 days of radiation. Halfway through, I had my tumor removed along with my first metatarsal and big toe. After removing the tumor, I found out the chemotherapy wasn't doing much for me. My tumor wasn't growing, but it also wasn't shrinking. So we stopped the chemo at that point. So I only had 3 cycles.

I lost my hair after my first cycle. It started falling out in clumps, so I had my husband shave my head. I lost every bit of hair on my entire body. I mean even in my ears and nose. I also got thrush and mouth sores after the first cycle. They gave me a numbing medicine for my mouth called Mary's magic mouthwash. It helps numb your mouth so you can drink and eat without pain. I was also given liquid nystatin for the oral thrush, unfortunately I got it every cycle. After my third cycle my white blood count was 0.5 and my platelets were at 7. I needed a platelet transfusion. My heart rate kept going into the 140's because I was so dehydrated from not eating or drinking. So I had to go to the hospital for fluids during my 2 weeks at home. I was at the point of just drinking meal replacement shakes.

As others have said, take the anti-nausea medication, but watch out for that constipation. I wondered if the nausea or the hemorrhoids from constipation were worse. I honestly spent alot of time just laying in bed. I was absolutely exhausted. If you have a choice not to work during chemo take it. I am a stay it home mom so I didn't have to worry about the financial burden of missing work.

The first cycle I didn't walk around much at the hospital. I just stayed it bed. I have a double lumen port and they were hooked up to multiple IVs so it was just easier to not have to keep unplugging stuff. That was a mistake. I had so much swelling because they were giving me so much fluid all at once. The other two cycles I walked around every few hours and it made a huge difference.

If you made it through all that....Goodluck with your treatment. It felt like life was moving so slowly during treatment, but looking back, it actually feels like it was over quickly.