r/sarcoma Synovial 26d ago

New Diagnosis Needing help and insight about chemotherapy (Male 27)

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.

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u/cmyorke 26d ago

I was diagnosed 6 years ago and went through surgery then radiation followed by 4 cycles of AIM. My doctor warned me beforehand that it was going to be rough and I should consider taking a leave of absence from work. I am glad I did. I would go to the hospital each day for my infusions, some do inpatient. My first day coming home I could not lift my legs out of the car. My son had to come out and get me out of the car. Then I could not lift my legs to get into bed. They made some adjustments to the dosage for day 2 and I never had that issue again. My sense of taste was shot, everything had a horrible metallic taste. Then the mouth sores started about a week in and the only thing I could eat or drink was water and boost shakes. The sores would get better the last 2 or 3 days before the next cycle then by about day 4 or 5 I had them bad again. I had neutropenic fevers with all four cycles, three of those I spent a minimum of 3 days in the hospital for observation and IV antibiotics for three of them. The fourth I was able to convince my doctor to let me stay home and did oral antibiotics. I had 2 blood transfusions and one plasma transfusion after my last cycle. I lost my hair on about day 15. Horrible aches and pains even with taking Zyrtec or others prior to Neulasta. The one thing I was not prepared for was the constipation. Make sure you are taking stool softener starting a couple of days before treatment and keep some citric sulfate on hand for if it gets too bad. I also lost about 40lbs during the entire time.

There is other stuff I'm sure but those are the low point for me.