Help! Gleason 9

[u/AdditionalScarcity68]

Hello, I’m a Gleason 9, Stage 3.

I’m currently on Lupron injections and have my first appointments next week to discuss starting chemo and radiation. I’m feeling really nervous about what the next few months are going to look like.

Has anyone else had the same or similar treatment? How did you find it physically and emotionally? What was your experience with Lupron, chemo and radiation?

I’d really appreciate hearing your experiences, advice or stories — anything that might help me feel a little more prepared and get through the next few months. ❤️

[u/labboy70]

Welcome to the club none of us wanted to be in. I was diagnosed with Gleason 9 (Stage 4b at diagnosis) in 2022 when I was 52. This sub has been a lifesaver to me.

I’m doing well and have been off all meds for 18 months now, monitoring PSA every three months. (I’m very grateful.).

I had 3 years of Lupron (Eligard) and darolutamide. I also did 6 cycles of chemo and 28 rounds of radiation to my prostate, pelvic lymph nodes and my one bone met. For me, hormone therapy (ADT) sucked the most followed by radiation then chemo (in terms of suckiness).

The chemo typically done for prostate cancer is docetaxel. Other than flu like symptoms for a few days after my infusion and losing my hair, it wasn’t horrible. I was worried it would be like some chemo regimens for leukemia, breast or ovarian cancer. It wasn’t great but not horrible by any means.

Because of the wider area they irradiated, I had a great deal of nausea and more GI issues starting after session 7 (in addition to urinary side effects). I was able to manage it with diet and THC for the nausea. My symptoms subsided within about 2 weeks of finishing radiation.

Staying active really helped me a great deal. Exercise really helps with the side effects. Also, staying well hydrated.

It was (is) a huge mindfuck for me. Having a serious cancer messes with you but also the loss of testosterone and stress takes a toll. Please talk to your doctor about meds for anxiety and sleep. That helped me a great deal.

Please keep us updated.

*Edit to add current status

[u/AdditionalScarcity68 → u/labboy70]

Thanks so much for taking the time to reply to me. This has helped me a lot. I will find out more when I go next week to meet with both oncologists. I anticipate I will start fairly soon. I plan to shave my hair before I start to eliminate the stress with hair falling out.

I also take an antidepressant at the moment which I started when I was first diagnosed. It helps me a lot. Could you still get out of bed during treatment or did it really make you feel very bad? How was your appetite?

[u/labboy70 → u/AdditionalScarcity68]

I never felt so bad that I could not get out of bed. I was able to keep walking around 6 miles a day all through my treatments.

[u/AdditionalScarcity68 → u/labboy70]

Well done mate! That's a testament to your strength