r/sarcoma • u/RainS__ 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/timewilltell2347 Leiomyosarcoma 26d ago
I did a doxorubicin with dacarbazine and my best advice is 1) get a port if that isn’t already in the works and 2) stay ahead of your symptoms. Use a journal, or I use the notes app in my phone, and keep track of what happens on which days and when you take meds. Take the anti nausea stuff before you feel sick, and if there’s pain or constipation, stay ahead of those too. Missing AA day of pooping can easily turn into a week, and trying to get the pain down once it’s flared takes a lot longer. Knowing your good days in a cycle is really nice because you can plan something like lunch with friends or some outdoor time.
Communicate your symptoms to your team if the current meds don’t cut it for you. They can try different things (for nausea I’ve been through 4 different meds) or new ones (they finally just gave me adderall for the fatigue). I’ve been on a few different chemo regimens over the last 2.5+ years so the fatigue is very real for me at this point. I’m hoping this series of AIM kicks out any lurking squatters for you!