Grateful for this group’s opinions - Advanced Prostate...

Advanced Prostate Cancer

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Grateful for this group’s opinions

Vman1 profile image
24 Replies

PSA:16, Gleason 4+3=7, PSMA positive pelvic lymph node involvement. Radiation to prostate and pelvic nodes ,45 treatments ended Dec 2, 2024. Adjuvant Eligard 6 month injection began October 8, 2024. Starting abi/pred next week.

Labs: 12/23/24: PSA: 0.162 , T: <10

2/17/25: PSA: 0.057, T: <10

3/18/25: PSA: 0.021, T<10

Feeling pretty good about these numbers but don’t want to get too hopeful and appreciate opinions.

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Vman1 profile image
Vman1
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24 Replies
petabyte profile image
petabyte

Less than 0.1 6 months post RT for people on ADT is a good sign.

Seems like you are on the right track.

Vman1 profile image
Vman1 in reply topetabyte

That is great to hear. Thank you so much.

speranza10 profile image
speranza10

Great numbers, you are very right to add zytiga.

Vman1 profile image
Vman1 in reply tosperanza10

Thank you.

MBSurfer profile image
MBSurfer

What you’re doing is what the STAMPEDE Trial proved was the best option. Good luck

Vman1 profile image
Vman1 in reply toMBSurfer

Yes my doctor referenced the STAMPEDE trail. Hoping for a long remission when treatment is done.

larry_dammit profile image
larry_dammit

best group out here. Good luck Warrior

vintage42 profile image
vintage42

Vman1 said: "Starting abi/pred next week... appreciate opinions."

Regarding the prednisone, read this article on dosing, which says the normal dose when castrate-sensitive is 5 mg. prostatecancer.news/2019/06...

My Uro started me on 10 mg and after a six months the skin on my arms was so thin that they were covered with dark red bruise blotches and a continuing sequence of bandaged skin tears that took weeks to heal. I also developed a fat belly and became borderline diabetic.

After reading some posts here, I questioned the 10 mg but the Uro said it was best. After I read that article, I sent it to him and said I would be reducing myself to 7.5 mg and then to 5 mg. At the next appointment a couple of months later, I felt fine and my bloodwork was good. By another month, my arms were clear and the belly fat greatly reduced.

Vman1 profile image
Vman1 in reply tovintage42

Thank you. I will discuss with my provider.

MelodyCat profile image
MelodyCat

Agree with all the comments here best wishes a long period of remission. That is basically where I am. Time is on our side since I do believe more “good stuff” is in the way. Try to stay active as you can since it really does help in many ways.

Vman1 profile image
Vman1 in reply toMelodyCat

Thank you for the well wishes. So glad you are progressing well. Best wishes to you also.

Billy_Boe profile image
Billy_Boe

I had a similar treatment five years ago and I am in remission. It sounds like you are on a good path. It is important to have bloodwork checked early when you start Zytiga as it can cause a liver issue. I had a major reaction to Zytiga early and had to go to liver specialist and be removed from Zytiga. Keep your exercise up as best as you can to fight the fatigue and tiredness.

Vman1 profile image
Vman1 in reply toBilly_Boe

Thank you. I am anxious about the Zytiga but understand its definite benefit. I will absolutely keep an eye on the bloodwork. Definitely exercising daily and that does help with ADT side effects. So glad you are in remission.

mababa profile image
mababa

Vman1, your condition parallels mine closely and I also am on the stampede regimen. I hit my nadirs 3 weeks after finishing RT last Sept, both PSA and T essentially bottomed out. Had been on Orgovyx for 7 mos. Started a half dose of the Abi/pred in Oct and tolerated it well until Feb. My new MO convinced me that I should take the full 1000 mg to get full benefit. Since Feb, I’ve experienced more significant SEs. Feels like I’m running at 60% now. More nausea. But my most recent visit this week with MO cheered me a little. He says Oct 2026 he’s going to put me on holiday. Yay! So, blood tests monthly, MO visits bimonthly, for now. Best wishes for your successful treatment.

Vman1 profile image
Vman1 in reply tomababa

Wow, we definitely have a very similar history. So glad you are doing ok. Like you, I will be eligible for a treatment “holiday” in October 2026. Can’t wait. Sounds like you tolerated the Orgovyx well. How did you take the Orgovyx and abi/pred? Together in the am or different med in am and pm? Did you initially take your 500mg abi with a low fat meal or on an empty stomach? Assume the nausea is from the increased abi and not the Orgovyx? Sorry for all the questions.

mababa profile image
mababa in reply toVman1

I split the timing of the PCa drugs between the am and late afternoon. Abi/pred first. I’ve found now that my stomach tolerates the Abi better with some food in it. Breakfast is usually low fat Greek yogurt with fruit, granola and a little honey. I really don’t get too uptight about timing food and meds. In fact I’ve read some articles that say you’ll get better absorption of Abi if you eat something. The Orgovyx never caused nausea, mostly CV SEs that have been fixed with BP meds.

Vman1 profile image
Vman1 in reply tomababa

I’m surprised that Orgovyx caused CV side effects. I’ve read that it has less cardiac negative effects than Lupron or Eligard. Are you taking the full 1,000mg of Abi with food or lesser dose?

mababa profile image
mababa in reply toVman1

I’ve read the same. Guess we’re all different. Yep. Now on the full dose of Abi/pred. 1000mg/5mg. I had the typical SEs associated with ADT after starting Org. But BP really went up. My systolic was going over 200. Was pretty miserable. Finally got the BP meds and poof, felt like my old self again (almost).

TJGuy profile image
TJGuy

How long is your doctor intending to keep you in ADT? You need to do your own research on PC and be ready to make decisions on your own future treatments/strategies Become your own expert on your PC, doctors will prescribe SOC.

Vman1 profile image
Vman1 in reply toTJGuy

Thank you. His plan is two years of ADT with abi/pred.

Mgtd profile image
Mgtd

We share an almost identical path except my PSA was 4.8 at diagnosis and I only elected to do 6 months of ADT.

I started 25 radiation treatments to the prostrate and entire pelvic area. My radiation ended 6/26/2023 and the Lupron ended 9/30/23.

On 11/2023 PSA was <0.01 and T was <7.

On 6/2024 PSA was 0.05 T was 471

On 01/2025 PSA was 0.09 PSA 700

Keep in mind that as T rises you will see a corresponding rise in PSA since you still have a prostrate. My most important suggestion is to do aerobics and resistance training and watch your diet.

At Almost 80 I can honestly say you are doing great and this cancer stuff was the best thing to happen to me. It really had a positive impact on my mental, family relationships and overall physical health.

Good luck moving forward. Looks like you are on the fast track to overcoming this cancer.

Vman1 profile image
Vman1 in reply toMgtd

Thank you. I’m so glad to hear you are doing well and have such a positive attitude. I believe that has a lot to do with success treating this disease. Your words are very encouraging.

Mgtd profile image
Mgtd in reply toVman1

Just thought I would share this but I now have the top three rows of a visible six pack. Going to the community oriented gym everyday and making friends with a group of guys my age was a real benefit. That social interaction was a benefit both physically and emotionally.

I tried both types of gyms for a month each. - community vs commercial. I elected to continue with the community oriented gym rather than a regular gym.

It was much easier for me to assimilate into that environment at my age. I felt out of place at the other type of gym and the younger people were not as welcoming to an old guy. Basically felt out of place but that was just my experience. Yours may be different.

Vman1 profile image
Vman1 in reply toMgtd

That’s fantastic. Certainly encourages me to continue my workout routines. I originally lived on a farm in Iowa, and that kept me in very great shape. However, once I retired to Florida, I found a much more sedentary lifestyle, enjoying fishing and relaxing in the sunshine. With the prostate cancer and ADT I began a concerted exercise program. I do cardio three times a week and lift weights six times a week. I have noticed some positive change in body definition even at my age of 74. I’m looking forward to continued progress.

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