Deciding what to do.: Hi all. I'm... - Prostate Cancer N...

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Deciding what to do.

Dadog profile image
2 Replies

Hi all.

I'm sure there are experienced as well as newcomers working their way through PC. I guess I am an 87 year old ; somewhere between the two.

My PC was discovered nearly 8 months ago. PSA was about 12 as I remember and both checks showed cancer and it was decided to take drugs to reduce the prostate and monitor it. Over the years, PSA was fairly steady. Eventually it was time to try hormone treatment with PSA up to around 40.

I tolerated the progressive bad effects of this for 8 or 9 months before I stopped taking the tablets. It was my own decision. The effects were awful. Depression set in and I was bad to be lived with. Snappy unhappy. Worse, I began to be forgetful and unable to discuss with others as I had difficulty making sense and jumbling words.

It was time to decide. I have heart problems which don't help. I turned down other tablets or injections. If I had to, I was prepared to let cancer do its thing. No way will I see my last years suffering as I did with the hormone treatment.

Anyway, latest treatment offered is the new drug Relugolix described as GNRH antagonist. It's side effects may be somewhat less than hormone. It will be for a month as a trial. I will try it. As yet, the hospital can't supply it and sent me a prescription to use locally. As yet al main chemists we have tried are unable to supply it.

Has anyone used or have knowledge about Relugolix? 🤔

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Dadog
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Tall_Allen profile image
Tall_Allen

You seem to imagine choices that you, unfortunately, don't have. Untreated prostate cancer is a slow painful and crippling disease. If you think you're hard to live with now, how do you think you will be when you are in pain all the time and can't walk?

I don't know how serious your heart problems are -- you may want to fill this out:

webcore.mskcc.org/survey/su...

Relugolix (Orgovyx) is just another hormone therapy. All of them work by reducing to almost nothing the testosterone made by your body.

Recently, the Patch trial showed that estrogen patches were just as effective. It is not yet approved by NHS, but estrogen patches can be obtained by prescription.

MarkS profile image
MarkS

You're following in my footsteps - long time afibber followed by PC diagnosed 18m ago! I am on the standard hormone therapy in the NHS, prostap. I get on OK with it but I do exercise hard and am pretty strict on diet which all helps a lot.

I had RT in March/April last year and still have a year to go on the prostap, but I'm hoping it will be curative.

I see you take hormone tablets - are those bicalutamide? I have heard quite a few people get SE's from that. Do you know any stats like cancer grading, PI-Rads, Gleason factor? Your PSA has increased quite rapidly from 12 to 40 in less than 8m. I think the side effects of prostap are less than those of bicalutamide, so if you can't get Relugolix, you could give that a try. You are possibly still curable if you are able to stick to a hormone treatment, particularly if combined with RT (and not a radical prostatectomy)!

Cheers, Mark

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