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My Journey through HT and RT

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User

Posted 05 Feb 2024 at 15:20

I’m 57 this year and am on HT for rest of life. I’ve been on it exactly 3 yrs this month. I have serious joint pain and bone pain but I do get by mostly. Then given you’re 10 yrs older than me …..
Not sure about supplements but I take a cod liver capsule every day which includes Omega oils and Vit A and D. So maybe that’s helping me mate

User

Posted 05 Feb 2024 at 15:58

Thanks Chris, Yes I know, I follow your journey. Do you mind me asking if your joint pain has stabilised or is it getting steadily worse? That’s my fear. I get by too but in the mornings I’m hobbling about, then as the day goes on it gets better especially if I keep moving. As soon as I sit down again for a rest, my legs start to seize up again and ache. I just find it so frustrating that I can’t find something to help. It’s not that I’m inactive either, today I went swimming in the morning and the gym in the afternoon. Some people have suggested I’m doing too much but when I stop being active it gets worse.

I rattle with the number of supplements I take each morning including Cod Liver Oil but maybe I should try and different brand(Castrol GTX?🤣🤣).

Thanks again and all the best for the future.

Derek

Edited by member 05 Feb 2024 at 15:59 | Reason: Not specified

User

Posted 05 Feb 2024 at 16:32

Hi decho sound's like you are still struggling with the hormone therapy did you ask oncology if you could stop at 18 months?

User

Posted 05 Feb 2024 at 17:40

Originally Posted by: Online Community Member

Hi decho sound's like you are still struggling with the hormone therapy did you ask oncology if you could stop at 18 months?

Hi Gaz,

Ive actually been on it more than 18 months but 9 months of that was before RT. I get the impression that the RT keeps working for 18 months until you reach your NADIR so I think it’s worth staying on it for 18months after RT. My Oncologist is not the most personable, empathetic character so will wait until/if my PSA stabilises at <0.1 (it’s 0.1 ATM) and then maybe broach the subject. I do keep asking my CNS but she just says 3 years…having said that a friend of mine went to have his latest Prostap jab and was told he didn’t need any more. however he’s going in for a major Op tomorrow so I think they thought better not to have this bothering him as well.

Maybe I’m just being an old moaner but the other side effects I can deal with, it’s just this one that get me down. However looking forward to getting out on my ebike tomorrow if the gale dies down!

Cheers,

Derek

Edited by member 05 Feb 2024 at 17:43 | Reason: Not specified

User

Posted 05 Feb 2024 at 18:26

Ok I understand I was told 18 months would be ok I suppose all hospitals are different good luck on the bike and enjoy your Costa on the way home 👍

User

Posted 05 Feb 2024 at 19:55

I envy you Gaz, I think it’s down to my high PSA 36 and staging T3b Gleason 4+3 that they want me on it for 3 years.
Feeling good tonight though👍

All ebike rides require a coffee/lunch stop! Might be ‘ The Biscuit’ in a lovely little coastal village called Culross!

Take care

Derek

User

Posted 05 Feb 2024 at 20:15

Thanks decho my psa was 24.9 on diagnosis and Gleason 9 so not good but psa has remained stable so I don't count my chickens just yet but feeling more or less back to normal so hopefully it will carry on 🙏 just arranged a holiday to your lovely part off the world to the isle off whitorn enjoy your ride tomorrow 👍

User

Posted 05 Feb 2024 at 20:17

My Gleason was 5 +4 on diagnosis 😳

User

Posted 05 Feb 2024 at 21:01

Hey Derek it’s hard to compare pain levels. If I sit still on settee too long it can be agony getting up but then settles quickly. First thing in the morning I have to steady myself going to loo and downstairs. I’m one of life’s unsettled people so am mostly moving. I walk the dogs each day with Mrs CJ for around 40 mins. If I’m flying my planes I’m on my feet for 2 out of 4 hours. My knees are like pure gristle. I’m on Celecoxib ( strong Ibu ) for that. I take Vit B and Thiamine as prescribed by GP but that may be because of my wine 🍷 habit 😬😬. I feel your pain and get that at 10 yrs older it could be way worse than mine. But at least it may abate when you stop. My advice is keep moving , muscle on and take painkillers if you need to. But don’t overdo it I guess. Everything in moderation ( except wine 👌

User

Posted 05 Feb 2024 at 22:24

Originally Posted by: Online Community Member

Dont think you have a BIO Gaz so I had forgotten what your diagnosis was. Makes it even more puzzling why they want me on it for 3 years. I’m so pleased you are feeling back to normal and I look forward to that day. My goal is to get back skiing to Colorado so am doing everything I can to stay strong.💪💪💪

I love Galloway and it’s micro-climate….we use to take the caravan down there every year to either Kirkcudbright or right down to the Mull Of Galloway. Beautiful part of the world which seems to remain in a time warp.

User

Posted 05 Feb 2024 at 22:32

Thanks Chris, that all sounds very familiar to me…even the wine! I’m trying to cut down and lose some weight so restricting myself ATM….carrying an extra 6 bags of sugar is certainly not helping! I behave myself during the week but at the weekend allow myself a treat…or two. After all you need to have some fun.

I’m going to talk to my CNS and if need be my GP to see if there’s anything they suggest.

User

Posted 17 Feb 2024 at 09:29

The last 2 days have marked a turning point in my treatment and battle with side-effects of Prostap. My joint ache has now had now turned into joint pain in my hips and knees, preventing me from getting to sleep at night. Painkillers don’t seem to help.

I’ve already documented my troubles on other posts so won’t go into detail here other than to say that I’m going to be contacting my CNS and GP next week to explore options. I wanted to document it on my journey path just to let others know what they ‘might’ be in for and when.

User

Posted 17 Feb 2024 at 19:26

I was on hormone therapy 3 months before radiotherapy and 15 months after Derek onco was pleased with my psa after then and gave me the opportunity to finish hormone therapy I have since been released from hospital and now just have my six monthly psa check which is still undetectable hopefully will continue that way gaz 👍

User

Posted 17 Feb 2024 at 21:19

Decho, this just doesn't sound right at all! It seems that you are suffering far beyond what would normally be reported - how do you know it is down to the HT? Have you been referred to and assessed by a rheumatologist? What you are describing sounds much more like a rheumatoid or auto-immune disease?

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

User

Posted 17 Feb 2024 at 21:38

good post Lynn hormone therapy is not great I found it tolerable decho seems to be suffering more than what is the normal side effects you could be right it might be down to something else like you have indicated

User

Posted 18 Feb 2024 at 06:55

Originally Posted by: Online Community Member

Thanks Lyn, I agree…it’s not right, I sometimes think I’m just an old moan. I knew I was in for a bumpy ride with this HT treatment and I can live with the Insomnia, anxiety, lack of libido, ED, Peyronie’s, Brain Fog and Hot flushes, but the joint ache is getting worse and that’s scary. It’s worst I the morning(this morning my legs feel numb below the knees), improves during the day and then deteriorates in the evening. I know there can be a tendency to blame everything on the disease or treatment but a I’ve never had any issues like this before I started this treatment, just like the other side-effects.

I’ve already had a blood test for polymyalgia Rheumatica as well as liver, kidney, glucos etc, and all came back clear.
I’m going to phone my CNS tomorrow and also try and get a GP appointment. I’m also going to phone the specialist nurse on PCUK. I’ve phoned them before and got a really nice and helpful guy called Andy. Ive got an appointment with my Physio on Thursday.

Edited by member 18 Feb 2024 at 07:12 | Reason: Not specified

User

Posted 22 Feb 2024 at 16:01

Visit to my Physio today in his torture chamber(gym!)😱 Actually he is really good…
I explained to him about the pains in my hips, knees, lower left leg and Achilles Tendon. He tested for movement, which was good but could be better, again good strength better in my left leg which doesn’t surprise me as the right hip gives me more pain than the left.

He thinks the problems with my legs stems from my glutes and has given me 3 simple exercises to strengthen them over the next few weeks, and he showed me how to do the squats and lunges correctly. He also wants me to get a balance board to improve my balance which is not very good…maybe partly due to the fact I am tall….I wondering if tall people are more susceptible to joint issues🤔🤔🤔

Ive started taking seven Seven Seas Joint Care supplex with turmeric(much higher dose than I was already taking) and it seems to be helping with the pain. I tried taking Devils Claw but it didn’t agree with my gut and gave me dreadful flatulence.

So I’m off to Fuerteventura on Sunday for 5 weeks in the sun and away from this dreadful Scottish winter….hopefully I will come back with a new body!🤣🤣🤣

User

Posted 22 Feb 2024 at 16:26

Hi Decho,
Do be careful with Turmeric. With various benefits becoming associated with turmeric, and increasing number of people have decided that consuming large amounts must be good for you, the deaths from liver failure caused by Turmeric have significantly spiked.

I make a point of eating salmon which I find helps my joints. I discovered this by chance 20 years ago. I'd bought a side of salmon for a family meal which then didn't happen. I was faced with eating this salmon myself before it went off. At the end of that week, every joint pain had gone.

Have a good holiday.

User

Posted 22 Feb 2024 at 19:12

Salmon is high in DHT which undoubtedly contributes to prostate cancer flaxseed oil is a healthier alternative

Turmeric fights cancer - years ago they found Indian street kids never got lukemia they discovered it was bc street kids ate dhal with turmeric at charity street kitchens and this turmeric protected them from lukemia

Edited by member 22 Feb 2024 at 20:33 | Reason: Not specified

User

Posted 22 Feb 2024 at 20:02

Prostate Cancer Research UK says salmon is one of the best things you can eat to maintain a healthy prostate - they also identified in research that it can slow down progression in advanced PCa cases. They were ambivalent about turmeric but Trevor_Boothe exceeded all expectations re longevity with an awful diagnosis and his wife was convinced that it was down to the turmeric - she was putting it in everything. TBF, his diagnosis and heart problems meant that liver damage was probably the last of his worries

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

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