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New to the community and a little bewildered

Posted 20 Sep 2023 at 11:17


As per the title, I am a newbie and this forum seems a little bewildering so, needing to start somewhere, here I go.

Twenty-two months ago I was diagnosed with locally advanced prostate cancer at Guy's Cancer Centre, London. Both my father and elder brother died from the disease so it was probably only a matter of time until it was my turn. I think of it as the family curse.

Following my diagnosis there were six cycles of chemo and, after a period of recovery, thirty-seven fractions of radiotherapy at Guy's. The chemo and radiation were complete by the end of 2022. Ever since my initial diagnosis, I have also been receiving a Zoladex injection every three months. The Zoladex is due to continue for another fifteen months.

Following the chemo, my hair grew back and my fluid retention weight gain is slowly getting under control with the help of some diuretics and physiotherapy but I am struggling with side effects from the Zoladex. I wonder if anyone in the community can offer me advice or point me in a helpful direction that I have not yet explored.

The first side effect is the hot flushes that are most bothersome at night. I am awoken four, five, or six times each night and, as a result, I feel exhausted all day, every day. There has been lots of advice from the team treating me at Guy's but none has helped. I was even given fourteen hours of acupuncture at the centre but without success.

The second side effect of Zoladex is that it has caused stiffness in my joints. This is especially bad in my hands and I have lost much of my dexterity. I have received injections in both hands and lots of help from the hand therapist but the stiffness and pain remain.

I understand that both of these side effects will improve (hopefully vanish) once the Zoladex therapy comes to an end. Any perspective you can offer will be greatly appreciated.


Posted 20 Sep 2023 at 12:44
I was only on Zoladex for 8 months but found it debilitating and so easy to be become sofa bound. I set myself targets to help with physical fitness and continued to play sport, albeit at a slightly less intense level and I am sure this helped me counteract the premature fatigue which for me was the worst aspect. Fortunately, I didn't experience much by way of hot flushes. Men seem to experience different side effects and to varying extent. My breasts did develop somewhat but not to the extent that I wanted treatment to them like a dose of radiation that some men have. Sorry I can't be of more help but note Guys have tried to alleviate your situation with little success and I would have thought from their experience they were in the best position to advise you.
Posted 20 Sep 2023 at 13:07
I have avoided the sofa trap so far even though mine has often looked inviting. My Zoladex treatment is due to last three years so I take small comfort that I am past the halfway mark. I do an hour of physiotherapy most days and go into the hospital gym every couple of weeks for a one-on-one with my physio. It is undoubtedly helping me regain some lost muscle strength and stamina but seems to be doing nothing for the stiffness in my joints. The lack of sleep caused by the night sweats is, if anything, even more debilitating. You were lucky to avoid that. Like you I now sport some small boobs.
Posted 20 Sep 2023 at 13:18
Have you tried sage for the hot flushes and tumeric for the joint stiffness?

I have avoided HT to date so I am not speaking from HT experience. The sage remedy has been mentioned here before, the tumeric is something I find beneficial.

Posted 20 Sep 2023 at 13:37
I have tried sage and evening primrose oil for the hot flushes (and acupuncture), all without success. Yesterday, I has a consultation with a rheumatologist and received some steroid injections into my hands. I had some before and they gave me a little relief although they take a few days to begin to work. The rheumatologist also suggested I use some ibuprofen gel massaged into my hands but I need to wait 48 hours before using it so as not to interfere with the steroids.

I have been trying tumeric for my joint stiffness and pain for the past three weeks. So far there has been no change but I will persist. Perhaps it takes time to take effect.

Posted 20 Sep 2023 at 15:23
The tumeric effect is subtle and certainly not in the ibuprofen league!
Posted 20 Sep 2023 at 15:37

Given that you've tried all the complimentary therapies for hot flushes without success, ask your oncologist if you could try one of the prescribed medications which are:

With Cyproterone, when it's working well, you can stop taking it and it will continue working for some time, and then you'll need to top up again. I don't know if that works with the others. NICE suggests trying Medroxyprogesterone first, but most oncologists seem to try Cyproterone first.

When you've been on any of them for 3 months, you should get a liver function blood test done to make sure your liver is OK with them, and perhaps repeat 6 monthly. If they don't work, you must stop taking them.

Posted 20 Sep 2023 at 15:46
If I could cross my fingers for the tumeric to work, I would.
Posted 20 Sep 2023 at 15:58

I have regarded Medroxyprogesterone and the others as my nuclear option. Two of the most common side effects of Medroxyprogesterone are weight gain and insomnia - two of the very things I am struggling with. However, my next review with my oncologist is in November and if I have found no relief by then I will be certain to discuss it.

I will also ask about Cyproterone. Many such names have been mentioned to me by my team although I am not sure I recall that one. Thanks for the heads up.

Posted 20 Sep 2023 at 16:45

I have stiffness in my knees, hips, shoulders and elbows. The only thing I have found to help is exercise. The more I exercise and stretch the better it gets….not sure how that would help with your hand though?

As for Hot flushes, I have tried everything but by chance I have found Vitamin E helps enormously. My ED nurse suggested taking this to help with ED but for some reason it seems to have helped with my flushes, no idea why🤷🏼‍♂️.

Posted 21 Sep 2023 at 08:50

I do an hour of physiotherapy exercise most days and attend the gym at the Cancer Centre every couple of weeks to work with their equipment. I have been doing this for most of the year so far. My strength is improving but not the joint stiffness in my knees and ankles. Lately, I have been getting pain in my shins at night. I believe this is known as shin splints and have dialed back on my exercise routine. I am glad it has worked for you.

Vitamin E for hot flushes is a new one on me. I will give it a try. Thanks for the tip.

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