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Zoladex and cardiac / muscle fears

User
Posted 08 Oct 2022 at 21:41

I have been out on bicalutimide when following a supposed Gleason 7 ((3+4) within<10% 4 I had HIFU - 6 months later MRI and biopsied Gleason 9 (4+5) - everyone surprised but it is what it is guess! PSMA Scan showed no spread / but if course it’s G9. 

due to various swapping of consultants and due to my issues as life long muscle weakness from polio as well as using a ventilator at night as my  breathing drive shuts off a bit when asleep (late polio effects)

so obviously this has been met with a need for very individual approach and working collaboratively with me, my polio consultants and the treating oncologist.

so I going for radiotherapy. The Bicalutimide has been given longer whilst deciding if to also use Zoladex prior to RT. Now I am due for the Zoladex next week and my consultant has said to see someone else. 

as I am having to coordinate and basically make my own choices - I decided to go for one month Zoladex just to see how I tolerate it - to give me best chance (psa is now 0.85 after the 8 weeks of bicalutimide) 

I hear so many bad stories about muscle loss, fatigue , aches and having to work out to get through it - is this true for all or I wonder if normally baked people are shocked by feeling fatigue and weak or if it really bad ? Any info would help - especially as to the early effects ? 

User
Posted 08 Oct 2022 at 23:36

I wonder if it might be worth asking if you could use Enzalutamide as your hormone therapy drug? It's stonkingly expensive and mainly used for men with metastatic disease in this country, combined with hormone therapy injections too, but it is basically a more effective version of bicalutamide which can be used by itself. With a G9, they will want you to have hormone therapy with the radiotherapy.

User
Posted 09 Oct 2022 at 13:40

Yes - there was a conversation about what to use rather than Zoladex but as I transferred to new place that conversation was not happening when I had my consultation with the new oncologist  and yesterday I was offered to move to another consultant as apparently I was asking too many questions via their secretary. Might need to go back to previous place but it would mean 2 hours travel there and back when the RT starts …. Slightly disappointed in the approach especially as I am a health professional- it isn’t really what I would want as an optimal service (to say the least) for my patients.  
Having worked in hospital I expect certain issues with surgeons but not so common in physicians and especially oncologists. 

so I’m limbo a bit at the moment which isn’t great at this point in the journey 

Edited by member 09 Oct 2022 at 13:42  | Reason: Not specified

User
Posted 09 Oct 2022 at 22:08
Nomis, it sounds to me your situation is highly unusual and one where the oncologists are feeling their way and perhaps finding themselves a bit on the back foot over giving answers to questions where there is little definite knowledge.

My presumption is that the concern is that anyone on any sort of testosterone reduction is likely to suffer muscle loss, which is likely to be more serious and more difficult to counter in your case. (I have been on Zoladex recently, and hoping that weight-bearing exercises and vitamin D supplementation will stop me having problems). But doctors know that radiotherapy is more effective when the cancer cell growth is inhibited by removing testosterone, and with your high Gleason score they think that gives you the best prospects.

From my understanding (I am no expert, just a knowledgeable patient!) I would be exploring whether it would be feasible to just use bicalutimide assuming a few more weeks gets your PSA down even more. You don't mention having bad side effects so far. Zoladex is more effective but also much slower to reverse, so would probably affect the muscle more in total than bicalutimide. However I am assuming you could come off the drug not long after finishing radiotherapy, and probably standard protocols for your Gleason level would normally keep a patient on reduced testosterone for longer. But one way or another they are going to have to decide on what to do, you are not a "standard" patient and there won't be clinical data on similar patients to guide them, and the underlying biological processes suggest that once radiotherapy is finished the benefit of maintaining low testosterone may be less clear.

But back to your original question of how people have found treatment with Zoladex: for me it wasn't that bad (not that I would have had it from choice!) Stamina was reduced somewhat - at the moment I struggle with late nights - and there is less "get up and go". Plus obviously effects on libido, and according to my wife a change in body odour. But in practice it hasn't stopped me doing any of the activities I normally do. I have only been doing 15 minutes or so of specific exercise, though I have quite deliberately been trying to keep up general activity levels (aiming for a target 10,000 steps a day, or an equivalent cycling). On the other hand my last dose theoretically ran out two months ago, but its effects continue as far as I can tell.

However ... few others have your combination of prostate cancer on an existing condition, and the optimum treatment is always going to be an informed guess. Ultimately you will have to collaborate with your oncologist to decide on something they think is likely to be effective and you are happy with in terms of adverse impact specific to you. There won't be a known "best" approach.

My best wishes, it is not an easy time facing these problems.

 
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