Seeking Feedback on Hormone Therapy for Prostate Cancer

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I appreciate the time taken by those who have responded to my posts in the past. I am looking to see if my current experiences are comparible with yours (if you have undergone Hormone Therapy in preparation for Radio Therapy) - or if I am unique in my experiences: - 

[a] 05 March 2024, I was prescribed a Month's worth of Bicalutamide Hormone tablets. PSA Score = 15.61. By changing my diet from the time I received my original diagnosis (January 2024) - increasing my natural greens, vegetables, minimising coffee, alcohol and processed food etc - by11 June 2024, my PSA score reduced to 10.3. I am not sure if it is the hormone treatment or the diet (or both!) that has contributed to the PSA Score reduction - but this is a positive thing, right?

[b] 17 June 2024, I had inplanted Zoladex 10.8mg by subcutaneous injection which is meant to last for 3 months (till the end of August 2024). I have to confess, the waves of "heat flushes" is taking a little while to get used to. Sometimes, I will spontaneously start to sweat on my face, neck and arms - even when relaxed and sitting down! What is the biological explanation for the heat flushes and sweating? Why does it happen?

[c] I have found on a few occasions that I will suddenly find my mind going "blank"! What was I just doing!? What was I about to do!? Is this a "normal" phenomenon with hormone therapy? Is this some type of "brain fog"? If so - why does it happen?

[d] I have been given 3 months supply of Calcium Carbonate - ostensibly to prevent bone damage through the hormone treatment. Has anyone had any side effects through this?

I am trying to navigate my way through an experience none of us willingly opted for - so I am trying to understand what I am experiencing, to see what is "normal" and what may be "abnormal" so I can devise a strategy to take action if necessary.

[e] One thing that has occurred over the past 3 weeks is the fact my left eye became red, sore and bloodshot - out-of-the-blue! After 2 weeks of trying to phone my GP and using the ineffective NHS111 website - I eventually was seen by a mortal human being, (by walking into an Emergency Eye Centere), who said I had "Episcleritis" (eyball infection) - but the cause was "unknown". They surmised that my body - being under stress of fighting cancer - could have been a contributing factor. Just wondering if anyone has experienced such an occurrance before? 

All in all, I am still trying to remain positive. I do not feel the "management" where I work take my situation seriously, and are expecting me to perform as normal, just like everybody else. Empathy and compassion appear to have "left the building" - but I am used to this type of behaviour and conduct. 

Thank you in advance for your time, feedback and camaraderie. It really is much appreciated.

  • I will try and answer some of your questions.

    a) You are what you eat and modifying your diet will help. Also try reducing animal fat and get your gut biome working by adding a low fat probiotic yoghurt, plus reduce sugar. The Bicalutamide is more likely to have reduced the PSA and any reduction is good but you will find a much greater reduction with the Zoladex - ideally below 0.5 within 6 months of starting it.

    b) Hot flashes happen because the hypothalamus—which controls body temperature—is sending false signals. Specifically, it thinks the body is overheated, even when it isn’t. What causes these false signals? It is still not understood but is associated with low testosterone levels. There are things which can help such as having a fan and open window at night. Sage tablets are useful for some men. The doctor can prescribe medication.

    c) Cognitive function - happy reading.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10819522/

    d) Calcium Carbonate - no side effects but keep an eye on calcium levels. It is usually recommended to take a combination calcium and vitamin D because the vitamin D helps with the calcium absorption - make sure that your total calcium supplement is less than 1500mg. The Zoladex can cause a build up of calcium so monitor with blood test.

    e) ADT can have an effect on the eyes but usually with longer term use.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9403378/

    Macmillan have a specialist who can advise you of your right whilst undergoing treatment.

    https://www.macmillan.org.uk/cancer-information-and-support/get-help/financial-and-work/work-support-service

    I hope this answers some of your questions.

  • Hello and welcome.

    I have to say that Alwayshope has answered your questions better than I could by giving the reasons for the symptoms etc. but I just wanted to say that I too had the same symptoms when I had HT. 

    My PSA went from 14.8 down to 0.73 after starting Bicalutamide and having 1 Decapeptyl 11.25ml injection prior to RT. I didn't change my diet but have always tried to eat healthily.

    I suffer from brain fog. I don't know if it is due to HT or not but it may also be due to other medication I'm taking.

    I take a daily vitamin D3 tablet alongside a weekly Alendronic Acid tablet. These were prescribed after I was diagnosed with osteoporosis but these are also good to strengthen bones following RT.

    I have had several episodes of not just pink eye but blood shot eyes with bruising half way to my ears. The eye specialist put it down to high blood pressure caused by stress, something my GP didn't think was the case. I am now taking 2 different blood pressure tablets a day with no further blood shot eyes.

    I am now 16 months post RT with another 2 Decapeptyl injections to go (finishing in November) a PSA of 0.03 and I feel great.

    Good luck on your journey 

    Regards Peter 

  • Thank you "Alwayshope" for taking time out to get in touch and for the useful links you have provided.

    Have a great New Week ahead!

  • Thank you, Peter, for your feedback.

    You are further along the road in your journey than I am - but you have given me great optimism, and hope, as I delight in your successful treatment so far. I wish you a full and complete recovery. 

    Thank you.

  • My husband has been on Prostap for 4 years now and does suffer from brain fog - forgetting what he was about to do - losing his wallet and finding it in the fridge - loss of confidence. I tease him that it is 'old age' as he is 80 but it does frustrate him. The possible association with Alzheimer's in the link was interesting.

    Anyone having HT should have their eyes checked regularly and hubby has developed dry eye in the last year. 

    I take his blood pressure every week and noticed that it occasionally indicated an irregular heart beat so off to the cardiologist who fitted him for the Holter Test. He now takes Beta blockers to regulate things. Blood pressure itself has remained stable with seasonal variation possibly due to the heat.

    For the bones he was told to take the calcium and vitamin D, plus he has two monthly Xgeva injections.

    The body does get used to the different treatments and just settles into a rhythm but these are powerful drugs so it is important to report anything strange happening to you.

    Trying to hold down a job whilst having cancer treatment is a challenge so I would encourage you to get in touch with Macmillan to check on your rights. I don't know what kind of work you do but if the company you work for has a HR department then I would arrange to meet with them and let them know that you are having treatment and how it may affect you. Fatigue is going to be a side effect as well.

    At the moment hubby is feeling good and we are both enjoying life and are grateful for the extra time the treatments are giving us together even though he is on the treatable pathway rather than a curative one.

    Have a good week yourself but listen to your body.

  • I may be able to help a little by going off script, in that my understanding does not relate directly to Prostate Cancer, but to symptoms and side effects of the treatment.

    My daughter suffers from ME/CFS, more commonly referred to in these days as Chroninc Fatigue Syndrome (CFS) although I believe that severely underestimates the impact it has.

    Two of the most prominent symptoms are Fatigue (as you would guess) and Brain Fog (cognitive dysfunction). She has both of these in spades

    My daughter has suffered from this for just over 20 years. The impact of the syndrome slides up and down a scale. Her doctor estimates right now that she has about 40% of the capacity needed for everyday activities in comparison with a 'normal' woman her age. It has been down to 20%, and lower for shorter periods.

    She has had to learn how to deal with them. The charity set up to provide advice to people like her is called the ME Association. They provide leaflets which seek to help sufferers manage the symptoms to best effect. The two that might help most for the problems here are below:

    1. Brain Fog - https://meassociation.org.uk/wp-content/uploads/COGNITIVE-DYSFUNCTION-FEBRUARY-2020.pdf
    2. Fatigue - manage by pacing - https://meassociation.org.uk/wp-content/uploads/PACING-Activity-and-Energy-Management-for-people-with-MECFS-and-Long-Covid-MAY-2023-1.pdf NB: The discussions about graded exercise therapy (GET) would not be relevant to us, but the ideas about management would be. GET was proven positively to harm the majority of ME/CFS sufferers but might actually help us.

    My daughter says that humour helps. For example, on a winter occasion she could not bring to mind the word "gloves". Everyone present understood what she meant by "hand socks".

  • Great post thanks. I liked the bit about multi tasking and it really resonated as hubby is incapable of doing that now both physically and mentally - all he can manage is gobbledegook if he tries to think of two things at once. Pacing he was taught at pain management clinic and it really works for him - listen to your body and taking a ten minute break allows him to do more in the long run, plus on good days don't overdo it but stick to the length of time he can do things comfortably according to his schedule on bad days as this prevents being knackered for the following days.

  • AH, pacing is a really good way to adjust to fatigue.  I am one who naturally pushes to the limit and have learnt that if I walk up a long hill fast I am exhausted and sometimes wiped out for a few hours.  By stopping (maybe several times) before feeling exhausted, recovering and then going again I can get to the top feeling ok.  Loved your story of the animal on the roof and OH streaking!  I don’t think I could manage 40 degree heat though but maybe a bit less rain on the South coast would be nice.  
    Oncologist on Wednesday.  Keep smiling.  David

  • Have you had your latest PSA yet - hopefully still below 2. All the best for Wednesday and let us know how you get on.

  • Have had bloods but I can’t see the results online (Hampshire doesn’t seem to be part of the joined up system yet), so have to wait till I talk to the oncologist.  Thanks, David