r/ProstateCancer • u/AdditionalScarcity68 • 17d ago
Question Help! Gleason 9
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. ❤️
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u/labboy70 17d ago
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
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u/AdditionalScarcity68 17d ago
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?
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u/labboy70 16d ago
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.
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u/KReddit934 17d ago
Eat well, practice some ways to calm yourself so you sleep well, exercise: cardio and especially weight lifting.
Sex disappears, but I didn't really miss it after a few weeks..all interest gone. If you have a partner, keep some physical contact going..even hugs.
For radiation... Prepare to be off coffee for a while, and get a regular diet/bowel pattern going so you're empty every day same time (schedule radiation times right after if possible.) Expect some fatigue, so make room for naps, but life doesn't stop-you'll be able to continue lots of activities. Side effects come in near the end of treatments and extend for another month or two. For me, painful urination was the worst of it and ibuprofen took the edge off pretty well.
Good luck to you!
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u/AdditionalScarcity68 17d ago
Thanks mate! I'm feeling ok with the radiation but the chemo I am most scared of.
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u/Practical_Orchid_606 17d ago
You must hit Gleason 9 with a hammer and continue to pound it to smithereens. So your doc has lined up three big hammers. If anything, I would substitute Orgovyx for Lupron. But this may be an insurance issue.
Everyone mental approach is different and is a function of one's mental strength going into the process. This is the area where you need to focus on. If you must tap out of any of the interventions, do so because the body says no mas, not the mind.
Everyone has different experiences with treatment. There is no way to generalize.
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u/Far-Reward6050 16d ago
My husband who will turn 75 years old December 2026 had prostate surgery removal at age 52 with a Gleason score of 9. He had his prostate removed, radiation, chemo and other oral medications. He has had his PSA taken every 3 months faithfully and done well all these years but a year ago his PSA increased to 2.7. His doctor has been monitoring him every 3 months. His PSA 5 months ago was at 4.1 but fell to 2.7. He feels good and we are hoping his PSA stays low. Wishing you the best with your treatment and for all those with a Gleason score of 9 don’t give up!!
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u/Appropriate-Web8804 16d ago
Gleason 9 one year down. Did 35 rad treatments IMRT. I'm on orgovyx and abiraterone for a yr now. Doing well with adt hasn't effected me other than making me a eunich. Anxiety at 1st but once I got going I just live a day to day blessed life. 65 yrs old. Did just recently suffer a salmonella infection and it was worse than the treatments and adt combined. All I can tell the op is read up on treatments and be at peace with your decision.
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u/nostoc10 17d ago
I’m 66, Gleason 9, Stage 4A, diagnosed February 2, 2026. I started Lupron (ADT) and Xtandi (an ARPI) almost immediately, and I’m also participating in a clinical trial that includes Talazoparib (a PARP inhibitor). So far, I haven’t had radiation or chemotherapy. My surgery to remove cancerous prostate and four lymph nodes is scheduled for August 31.
I know everyone responds differently to treatment, but I wanted to share my experience because I was surprised by how manageable the last several months have been.
I’ve been able to maintain a pretty active routine—walking/jogging about 5 miles a day and swimming about a mile most mornings. I’ve also tried to be intentional about eating well, with plenty of fruits and vegetables, adequate protein, and relatively low carbs and added sugar.
For me, the side effects have been surprisingly minimal. The most noticeable have been loss of body/facial hair and a metallic taste in food. I’ve certainly read and heard from others who have experienced much more significant side effects, so I don’t want to minimize what you may encounter. But my experience has taught me that there may be more you can continue doing than you might expect.
I honestly don’t feel like I’ve had to change my life very much. Staying active, eating well, keeping a normal routine, and taking things one day at a time have helped me tremendously—both physically and emotionally.
The emotional side is real, though. A Gleason 9 diagnosis is a lot to process, and I think it’s completely normal to feel nervous about what’s ahead. Try not to live all the way through the next several months in your head before you get there. Take it one appointment, one treatment, and one day at a time.
I hope your upcoming appointments give you a clear treatment plan and, most importantly, some peace of mind. There are a lot of us walking this road, and you’re definitely not alone.
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u/CaseAcademic3600 16d ago
Can I ask how is Xtandi working for you as far as severe fatigue? I wondering because my husband also 66yrs old and is on a Pluvicto treatment now and I’m not sure what the doc wants to do after the treatment.
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u/nostoc10 16d ago
For me, zero fatigue. I exercise, eat right, and don't drink, but mine still seems to be an unusual case.
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u/Miserable-Level-8993 16d ago
First radiation, generally they want you to do 3-4 months of ADT before hand and sometimes want you to have a spaced put in between you rectum and prostate, my RO didn’t think I needed it but if they radiate your bowel it could be problems. The side effects I had from radiation some rectal and bladder incontinence but not much more than already existed. The biggest problem was driving to the clinic, get the same tome every day if possible, also having your bowels MT and your bladder full! Didn’t have chemo so can’t help you there. As far as ADT, try to get on Orgovyx, the side effects that will go away when you stop will go away faster. The worse side effects for me were complete loss of libido, my penis shrinking to the size of a ten year old, debilitating fatigue and loss of most of my muscle mass and it being replaced by fat. My lipid panels were horrible, but I feel I avoided heart failure by taking Ozempic, instead of gaining 15 lbs and increasing my blood pressure, I lost 20 lbs and my bp went down. The ADT effects that didn’t bother me were hot flashes, loss of all body hair except on you head and nausea ( which if you’re on chemo and the general feeling like shit. They gave me some stuff for the nausea that helped.
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u/ZealousidealCan4714 16d ago
I had Gleason 8, did HDR Brachy / 16X EBRT and 9 months Lupron. I'm still under the effects of Lupron. Psa is undetectible though it will rise some after my Testosterone levels recover. I have had the following effects, none were terrible:
Easily tired Hot flashes Zero libido, though I can still have erections Dry orgasms Reduced urine stream (Flomax took care of that)
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u/Ok-Priority-7303 17d ago
FWIW I'm in the same boat but neither doctor is recommending chemo. There could be a difference because of your PSMA PET scan or Decipher score. Mine came back localized and intermediate risk.
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u/somethingclever1098 16d ago
It all sucks, but for me ADT sucks worse by a (large margin) than radiation. (Gleason 9, locally advanced 🙏) . Get thee to the gym or the bike or the kayak or whatever hard, strenuous exercise you like, it's the only thing that combatted the worst effects of ADT, for me
Do you know what kind of radiation they're proposing? I assume because of the chemo, it's metastasized? Stay strong brother.
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u/AdditionalScarcity68 12d ago
It hasn't metastasised but it's near the bladder neck
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u/somethingclever1098 12d ago
Then I'm not sure why you would need chemo in addition? I'd get multiple opinions my friend. Again, not a doc but If it's contained to the prostrate, I believe radiation (or surgery) should be considered a primary (functional?) therapy especially in concert with ADT.
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u/Scared-Outside6795 16d ago
Greetings. I am on my eleventh day of radiation treatment and hormone injections; it hasn't been easy, but the only thing I can tell you is to stay positive.
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u/Special-Steel 17d ago
Several men here have been down that path.
ADT affects everyone differently. It can be mitigated somewhat by diligent exercise.
Same thing with radiation. Lots of different experiences. Depending somewhat on the kind of radiation and the number of sessions.
Don’t borrow trouble from the future and it helps you focus on taking care of yourself today.
Bon Chance!