Hormone Therapy

Posted by MaxC @cobratk, Jul 2 9:36pm

I am getting ready to start hormone therapy with orgovyx and have read that it can cause brain fog. Can anyone who has experienced this tell me how bad it is. My wife has memory issues and can’t help out driving me to radiation treatments or cooking. I am concerned this make it difficult to keep up with my treatments, so I have not committed to hormone therapy in my mind just yet.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for jeff Marchi @jeffmarc

If you have residual cancer cells in the prostate area, that means that after prostate removal you had positive margins.

When that happens, radiation should be arranged to zap the areas that have positive margins.

Going on Elgard will stop it from growing, But if you have not had radiation, you need to Get a second opinion from an expert. You need to find a center of excellence or a Genito urinary oncologist. They will look at your case and make major changes.

Going on Elgard does not kill the cancer. It just stopped it from growing while you’re on it. If you don’t get another Eligard shot, you could be assured that cancer is going to start spreading.

I cannot understand what kind of doctor would leave you in this precarious situation.

Jump to this post

Apart from the Eligard, I am currently on radiation therapy, today will be session 19 out of 25 and I am ready for the last session. The radiation has affected my lower intestines, I am having diarrhea almost daily, my hemorrhoids are killing me, and just an overall malaise feeling. I have just a few sessions left so I am going to finish with the Lord's help. Thanks for your comments.

REPLY
Profile picture for ronjc @ronjc

Apart from the Eligard, I am currently on radiation therapy, today will be session 19 out of 25 and I am ready for the last session. The radiation has affected my lower intestines, I am having diarrhea almost daily, my hemorrhoids are killing me, and just an overall malaise feeling. I have just a few sessions left so I am going to finish with the Lord's help. Thanks for your comments.

Jump to this post

I had radiation for seven weeks. IMRT. That was about 12 years ago. I just never had any side effects from it. It was over a longer time than yours, they spread the daily dosage over a longer period. I know some people back then said they were tired after the radiation, but I didn’t hear from people, that long ago, that had diarrhea.

These days they do it in a shorter period of time and it is tough on some people. I’ve heard of the diarrhea problem, others have it.

Did you have a SpaceOAR or equivalent put in before having radiation?

If you search for diarrhea at the top level, you might be able to find messages that discussed solutions people have found.

REPLY
Profile picture for jeff Marchi @jeffmarc

I had radiation for seven weeks. IMRT. That was about 12 years ago. I just never had any side effects from it. It was over a longer time than yours, they spread the daily dosage over a longer period. I know some people back then said they were tired after the radiation, but I didn’t hear from people, that long ago, that had diarrhea.

These days they do it in a shorter period of time and it is tough on some people. I’ve heard of the diarrhea problem, others have it.

Did you have a SpaceOAR or equivalent put in before having radiation?

If you search for diarrhea at the top level, you might be able to find messages that discussed solutions people have found.

Jump to this post

Nope, no space OAR, I guess since they took out my prostate in March, no need for the spacing material.

REPLY
Profile picture for ga73ds @ga73ds

I've been on Orgovyx 2 1/2 yrs. My doctors want me to come off it.

I've had surgery, salvage pelvic radiation, and ADT (Orgovyx). PSA < 0.01 for over 2 years (since radiation + starting ADT). I was stage 4a, Gleason 9, Decipher .99 so aggressive. I've got a small lung nodule < 6mm and stable. Probably not cancer but I'm afraid if I stop the Orgovyx and it is cancer that it might start to increase.

I've experienced muscle weakness, joint pain, trouble sleeping, and no energy, overall tiredness-- don't know if this is due to the Orgovyx or not.

I'm scared to stop taking it. I don't mind the ADT side effects although it's been getting worse. I suppose my doctors are worried about possibly more serious SE's like bone loss/weakness and heart problems. But all this sounds better than my cancer getting worse.

Drs apparently just think I've been on it long enough and I suppose I'll become CR eventually? Don't want that. But, it's scary to stop, not knowing what might happen.

Jump to this post

Going to get salvage radiation, the 5 day treatment, starting next week, one every other day. They want me to start ADT. Just wondering how Orgovyx worked for you? One of my RO said that I could wait a month or two to without ADT and see where PSA is headed. Any thoughts on that?

REPLY
Profile picture for jeff Marchi @jeffmarc

A Gleason, 4+3 does not call for two years of ADT. But after a relapse and salvage radiation, this is the following information that the NCCN provides.

Key points from NCCN and recent evidence:

24 months of ADT with salvage radiation improves outcomes for men with adverse features (including Gleason 4+3).

Shorter durations (e.g., 6 months) have not shown the same survival benefit as 24 months in this context.

The decision may be individualized based on other risk factors, side effect tolerance, and patient preference, but 24 months is the standard for higher-risk cases per NCCN.

Jump to this post

I haven’t got salvage radiation yet, start next week, the 5 day every other day treatment instead of 6 weeks. No ADT….. yet.

REPLY
Profile picture for jkoop @jkoop

Going to get salvage radiation, the 5 day treatment, starting next week, one every other day. They want me to start ADT. Just wondering how Orgovyx worked for you? One of my RO said that I could wait a month or two to without ADT and see where PSA is headed. Any thoughts on that?

Jump to this post

With salvage radiation, isn’t starting with ADT well in advance of radiation standard?

REPLY
Profile picture for jkoop @jkoop

I haven’t got salvage radiation yet, start next week, the 5 day every other day treatment instead of 6 weeks. No ADT….. yet.

Jump to this post

Nice. I’ve heard they’ve been starting to do more. SBRT (cyberknife) salvage radiation. Come back and tell us if you have any side effects. It’s a lot more radiation in a shorter time spread over a larger area,

REPLY

One of my radio oncologist said we could wait about 4 to 6 weeks after radiation treatment and see if PSA decrease's. If it does, closely monitor. If it doesn’t, time for ADT.
The machine that UCLA is using is the MRI guided SBRT. I did have to go in it for pre targeting set up.

REPLY

Ultra hypo-fraction radiation completed, I can say I’ve had no side effects…..yet,,,,hopefully not at all. ADT Orgvyx on board for a week. I guessed too early for any of those side effects but so far ok. Now the waiting game…..6 months or 2 years to stop and see where PSA goes. Will get testosterone and PSA checked in October. That machine that they use is pretty incredible, live MRI image with target outlined so not to hit important parts. I’m watching on a display screen while they are blasting away with special glasses that are aimed at the information screen at the end of the tube. All in all a good experience, technicians were all very nice. Worst part is the 6 hour round trip drive in LA traffic but so far worth it.

REPLY
Please sign in or register to post a reply.