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Coming off HT after 15 years

Posted 27 Oct 2018 at 08:43

and Hallo, new member Here. I need a little advice. We’re serious Prostate cancer combatants. My husband was diagnosed 9 months after we lost my dad to the disease. My  husband was really unwell 9.1 Gleason, and i too had a cancer diagnosis and our only child was 8 so survival was the only priority. And he’s still here, 15 years later. He’s had radiation, chemo and long term HT with Casodex and recently just Zoladex. This summer he was really unwell, he had sepsis and trigemminal neuralgia and the new medication, in combination with the old stuff, has taken away the last bit of energy etc. The dr is suggesting coming off Zoladex but we’re a bit nervous as it’s a psychological lifeline. After 15 years, it seems very odd to suddenly stop taking a potentially life saving drug. However, looking at the research papers, I realize that his previous oncologist may have we’ll known etc. but he was probably past his sell by date even when we met him 15 years ago. What does everyone think? I’d love to see my husband with a little bit more life in him. 

Thank you in advance. 


Posted 27 Oct 2018 at 10:24
Kate are you in the UK or elsewhere in the world?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Posted 27 Oct 2018 at 11:39
Is the Zoladex still working and is his PSA still low?? If so lots of people seem to thrive on hormone holidays?
Posted 27 Oct 2018 at 17:15
Funnily enough, I raised the possibility of coming off Zoladex after 11 years with my oncologist a couple of days ago. He said he knew of no evidence on the pro and cons for cases such as mine. I suspect this is because I have outlasted the data! The argument seems to be - if the side effects are tolerable, stick with it as other treatments (currently none approved by NICE!) will have a cumulative effect. For me the side effects are zero sex drive (not bothered about this at 75!) and flab at the front between my hips and navel. I suppose decreased get up and go is also an effect, but I don't know how much more energetic I would have been without the Zoladex. Maybe very little! My PCa is castrate resistant, PSA only 0.9, but likely to rise without further treatment, no known mets, beyond one which may be a mothership remnant rather than a met in my urethra (bladder and prostate removed 6 years ago) which adds to my doubts about carrying on with it. If I'm honest, I lack the courage to take the risk of coming off Zoladex. It would help me and I suspect Kate's husband if anyone could point to any survey or trial data to inform our decisions.


Posted 27 Oct 2018 at 23:11

We’re living in Germany but come home to the UK frequently. We were in Hawaii for a few years a while back. 

His PSA is 0.1 steady! Has been for years. I’d love to see him get a bit of his old vigor back but don’t even know if that’s possible after so long. I agree that we need to find some research studies, but I can’t find any. I found a nice article from a dr at Harvard, a review of information in general but very thin on this specific topic. Is the reference of use to anyone? And am I allowed to post it? 

He‘s due his next Zoladex shot  this week, and I’m inclined to seek a new dr. to check this out. 

Posted 28 Oct 2018 at 00:41
Gosh - sounds like the perfect candidate for a hormone holiday. Have you googled ‘intermittent hormone treatment’ - it is used more frequently than you might imagine. Two of our best examples on here are TopGun and George - I will try to find the links
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Posted 28 Oct 2018 at 00:42





Edited by member 28 Oct 2018 at 00:43  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Posted 28 Oct 2018 at 04:31
You see, I just didn’t know the right terms to google. Now I know where to start I can get into the subject. Thank you.
Posted 28 Oct 2018 at 09:31
yeah,i have been on hormone holiday since april 2016 psa 0.05 i am referred back to my gp next psa test dec,so far so good,i know i will be probably be back on ht at some time,so just keep on plodding on.
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