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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


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 👍



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
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?


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
User
Posted 22 Feb 2024 at 20:47

Well I guess it’s straight to Mercadonas Fish counter when I arrive in Fuerteventura.


it’s a bit of a minefield this, what supplements are good for which are not🤷🏼‍♂️


I wouldn’t have thought that Seven Seas would have included a Turmeric Tablet with their Jointcare tablet which wasn’t safe?


Thanks for the replies.

User
Posted 23 Feb 2024 at 20:38

Lizzo37,


Re: ? High Levels of DHT are a risk for Prostate Cancer?  This medical article in Pub Med from July 2020 says the opposite: that high levels of DHT are protective for people with and without prostate cancer.


PubMed:  https://pubmed.ncbi.nlm.nih.gov/32368817/#:~:text=Prostate,2020%20May%205.


Perhaps you are aware of more recent research?


Best wishes,


JedSee.

User
Posted 23 Feb 2024 at 21:31

Dietary advice changes from year to year. Eggs have changed between good and bad at least four times in my life. Well I say 'Eggs' have changed, of course they haven't changed, it's the advice about them which keeps changing. The eggs are oblivious to the advice, they are just as good (or bad) for you as they have ever been.


If you enjoy turmeric eat it this year, because it will be bad for you next year.


Wine and beer are the only foods which for millenia have always been considered to have only beneficial properties, at least that's what I tell myself.

Dave

User
Posted 24 Feb 2024 at 00:08

Flax seed oil is a poor substitute for "proper" omega3s:
https://www.health.harvard.edu/heart-health/why-not-flaxseed-oil


 


Eat fish especially the oily kind, it is unequivocally good for you.


There is also a considerable evidence emerging about seed oils and just how bad they are for your immune system.


Leave the flax to animals that have the correct teeth to grind the seeds.

Edited by member 24 Feb 2024 at 00:09  | Reason: URL fix

User
Posted 24 Feb 2024 at 10:02

Originally Posted by: Online Community Member
Wine and beer are the only foods which for millenia have always been considered to have only beneficial properties, at least that's what I tell myself.


Hear, hear.


They can certainly 'ease the pain.' 😁

User
Posted 24 Feb 2024 at 20:59

Thanks francij1,


I do eat a lot of oily fish, but I never know if I'm doing the 'right' thing, because of how our fish supplies have been contaminated with mercury.  We are caught between a rock and a hard place...so I eat fish - and then I have a glass of wine to help me not to worry about the mercury.


As another poster has said, alcohol has only beneficial properties - lol.


Best wishes to all.


JedSee.

User
Posted 24 Feb 2024 at 21:15

2 large Edinburgh Gins (Rhubarb and Ginger) watching Scotland rugby match(well done boys BTW!) and then a bottle of wine with a (shared!) pizza.  What joint ache?🤣🤣🤣


Actually on a serious note something HAS changed over the past few days, my joints ARE getting better ATM….too early to say if it’s just  temporary, but it has lifted my mood so much💪💪💪💪

User
Posted 25 Feb 2024 at 19:12
Jedsee find yourself a supply of freshwater trout, it's an oily fish that lives in clean upland lakes and rivers. No accumulation of mercury to worry about there.
User
Posted 25 Feb 2024 at 21:19

Thanks francij1,


I'll certainly look into the recommendation of freshwater trout.


Best wishes,


JedSee.

User
Posted 25 Feb 2024 at 21:22

Great news, Decho!  Hope the pain reduction is permanent (although the alcohol might have helped just a bit...).


Best wishes,


JedSee.

User
Posted 18 Mar 2024 at 19:45

Castrol GTX, that ages you haha, have a can in my van, cleared it from a elderly chaps shed, who sadly passed away, work as a Gardener now, still do, not sure for how much longer?,  am now unfortunately starting a PC journey, just came out of the blue, like many here I guess?, all the best to you, chin up, and all that. 


 

User
Posted 18 Mar 2024 at 19:55

Welcome to our exclusive club Robin and good luck with your journey.


When you get a moment it’s always good to update your BIO.


Theres lots of great support in this forum!


Derek

User
Posted 19 Mar 2024 at 12:26

I spoke to my CNS this morning, they really ARE such a support. She confirmed that as my PSA was falling and low it was unlikely that this was causing my leg problems, more likely the HT making perhaps an existing problem worse. She said that my bone scan showed some wear on the knees, which I didn’t know about.


The outcome is she is going to speak to the Onco about me stopping HT early if my PSA stays low the next 2 tests, April and July. Perhaps April being my last Prostap Injection😊. This would mean that I have been on HT for 2 years in total, 9 months before RT and 15 months after RT finished. In the meantime they are going to try and find out exactly what the problem is with my legs.


I can ONLY live in Hope🤞🤞🤞🤞

User
Posted 22 Mar 2024 at 16:05

Got some great news today, just had a call from my CNS who has said that my Onco is happy for me to stop HT.
He also thinks my leg pain is nothing to do with PCa(as you’ve all told me anyway😊) and I’ve to let my GP deal with it.


So my last Prostap Injection(hopefully for ever🤞) will be 4th April.


I just need now to find out what’s happening with my legs! GP appointment on April 1st and hopefully he’ll arrange whatever tests are needed.


I am SOOOOOOOOO HAPPY!😊😊😊😊

User
Posted 22 Mar 2024 at 18:14

Great news!

User
Posted 22 Mar 2024 at 19:02

Light at the end of a long tunnel. That's great news.

User
Posted 22 Mar 2024 at 20:50

That's great news, Decho.  


Hope you get those legs sorted soon.


Best wishes,


JedSee.

User
Posted 22 Mar 2024 at 21:31
Great news Derek, really happy for you 👍
User
Posted 22 Mar 2024 at 22:08

Great news! 😊 

User
Posted 23 Mar 2024 at 00:34
Brilliant
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Mar 2024 at 06:51

Originally Posted by: Online Community Member


I am SOOOOOOOOO HAPPY!😊😊😊😊



I'm very happy for you mate.😃 👍

User
Posted 23 Mar 2024 at 07:06

Great news decho 👍gaz

User
Posted 23 Mar 2024 at 14:50

Fantastic stuff Derek.


 


Jamie.

User
Posted 23 Mar 2024 at 19:13
Lovely Jubbly mate 👍👌☝️💪
User
Posted 24 Mar 2024 at 08:58
👍Just what you were hoping for. Hope your joints get sorted too

Cheers
Bill
User
Posted 24 Mar 2024 at 09:48

Great news Derek!

User
Posted 24 Mar 2024 at 10:20
Amazing news
Best wishes
Ann
User
Posted 24 Mar 2024 at 11:16

👍

Dave

User
Posted 24 Mar 2024 at 12:07

Brilliant news mate, must be a huge relief.


All the best


Ian 


 

User
Posted 24 Mar 2024 at 18:31

Good for you, don't know you?, but have read a lot of your post.


Glad this long and arduous road for you has finally concluded.


Me, mine is just beginning, told I have contained PSC ?, offered Radio or Surg, still not sure?. Starting the long road of HT tomorrow, oh Dear not looking forward to that as I feel fine, of what I have heard its not good, my son in law is after my van, told him I,m not dead yet, haha. A journey ends and another begins I guess, all the best  to you .

 
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