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Hooray I'm off zoladex, let's hope for good.

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User
Posted 29 Jun 2023 at 19:17
Brilliant - onwards & upwards x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Jun 2023 at 20:28

It's always encouraging to read good news stories Dave, as often they can be few and far between. I'm really pleased for you.

User
Posted 06 Jul 2023 at 09:32

Missed your latest PSA in June. Just seen it now. Excellent result! Long may it continue! Hope all else is well. Absolutely no doubt you are enjoying life Dave! Your positivity is inspiring. 

User
Posted 06 Jul 2023 at 09:47

Brilliant news Dave πŸ‘ 

User
Posted 06 Jul 2023 at 19:31

I've read the early part of this thread with interest.  I had my last Zoladex implant end of January, so it "ran out" end of April.  I'd been three years on the stuff, something I would have been reluctant to agree to if I'd known the physical and mental impact it was to have.  Now I have the long wait for T to return.  My next blood test isn't until November.  Really hoping there's some good news.  I've been without testosterone for three and half years now and I've had enough of it.

User
Posted 01 Oct 2023 at 16:31
I recently joined this forum and have just found this thread. I was diagnosed with locally advanced PC at the end of 2021. 2022 was taken up with six cycles of chemo and then 37 fractions of radiotherapy. I have been on Zoladex ever since I was diagnosed - so getting on for two years now. I am due to continue the Zoladex until January 2025 which seems a long time away.

I have experienced most of the bad side effects of Zoladex - loss of libido, swollen legs and feet, and bad night sweats waking me anything up to six times each night. Most of the fatigue I have been experiencing is probably due to lack of sleep over two years.

One other side effect that I have not seen mentioned here is joint pain. This came on quite suddenly after I had been on ADT for a year or so. I wonder if anyone else has experienced this and, if they have, if it has been treated successfully. My hands have been especially badly affected.
User
Posted 02 Oct 2023 at 02:23

As a fellow 76 year old with a similar diagnosis [G9 T3bN1MO, locally advanced, high risk] I can relate to your Zoladex experience. At two years (out of the three) I chose to stop taking Z, partly because the 5 year survival rates for anything beyond 18 months are only a couple of percent better than those for 3 years, plus the ten year rates are the same. I considered that the side effects, loss of libido, weight gain, loss of strength, lack of sleep, slight ostopaenia [etc] as not good for the body or the head in either the short or long term.


Dave, who started this thread and Andy, like myself, pulled out at around the 2 year mark. Your situation might be quite different so this might not be an option for you but if the side effects are seriously messing with your QoL it's worth checking out as a possibility.


Jules


edit: Sertraline might help for anxiety and maybe sleep. Exercise is definitely useful. Some specific physio advice could be useful.


 

Edited by member 02 Oct 2023 at 05:06  | Reason: Not specified

User
Posted 02 Oct 2023 at 10:18

The last time I saw my oncologist I reported the struggles I was having and she offered me the option of ending the Zoladex after two years rather than the planned three. At the time I was also struggling with significant weight gain as well as joint stiffness and pain. So it was pretty much a triple whammy.


Since then I have been prescribed Furosemide for the oedema which, together with cutting out my midday meal, is slowly reducing my weight. The rheumatologist gave me injections in my palm which, together with hand exercises, have reduced the stiffness but unfortuneately not the pain. I have been exercising daily but currently this has left me with painful shin splints, something I will take up with my physiotherapist when I see him tomorrow.


So, I agree with you that Zoladex is nasty stuff. But so is cancer. My father and elder brother both died from it. The weight gain is slowly getting under control and maybe I can find a way of living with the joint stiffness and pain. If I can, and despite the significant side effects, I want to try and see out my three year Zoladex treatment. It is encouraging to read in this thread about others who have come through ADT and are recovering.

User
Posted 02 Oct 2023 at 22:11

From one source I've picked up the overall survival figures at 5 years were 92% [for three year treatment] and 87% [for 18 month treatment]. At ten years it was 63.6% v 63.2%. 


Disease specific it was 97.6% v 96.4% at five years and 87.2% for both arms at ten years.


Regardless of length of RT treatment we all face a 13% possibility that by ten years we can have recurrence. It would be shocking to have recurrence after surviving close to ten years but it's always going to be there.


Jules

Edited by member 02 Oct 2023 at 23:57  | Reason: Not specified

User
Posted 18 Dec 2023 at 12:56

Thanks for the previous replies everyone.


Just had my PSA result 0.1 . For anyone new here, I had RT so I still have a prostate so anything under 2.1 is good. 


I am five years post RT. I think the more important time period is how long I have been off HT, which is about three years. That is the amount of time I have been exposed to the risk of recurrence. We see posts about recurrence ten years post treatment so I know none of us are ever out of the woods. Decho recently posted how he was nearly killed by a bonsai tree, so I view PCa as just another of life's many risks.


 


 

Dave

User
Posted 18 Dec 2023 at 13:12

Good news Dave long may it continue and watch out for falling tree's πŸŽ„ gaz πŸ‘

User
Posted 18 Dec 2023 at 13:44

That’s great news to hear Dave.


All the best and have a Merry Christmas and Happy New Year.


 


Angex


 


 

User
Posted 18 Dec 2023 at 14:15

Originally Posted by: Online Community Member


Thanks for the previous replies everyone.


Just had my PSA result 0.1 . For anyone new here, I had RT so I still have a prostate so anything under 2.1 is good. 



Brilliant news Dave. What a lovely early Xmas present.


All the very best mate.


Adrian.


 

User
Posted 18 Dec 2023 at 14:45

Great news Dave. Long may it continue!

User
Posted 18 Dec 2023 at 15:08

Great news Dave, best Christmas gift ever for you and your family.


Leila 

User
Posted 18 Dec 2023 at 15:14

Fab result Dave! Positive as ever, which defo helps. Wishing you and yours a very Happy Christmas and Happy 2024!! 


 

User
Posted 18 Dec 2023 at 15:21

Fantastic news Dave, I can only dream of being in your position 3 years after the end of HT…..if I survive to the end that is. After the Ceilidh last night, today everyone joint in my body is aching and I am am hobbling about like a 90 year old! Happy to report though that there have not been any more Bonsai Tree attacks🀣🀣 Mind you I am back at the acupuncturist tomorrow so am going to wear a crash helmet just in case!


What a lovely Christmas Present for you and long May your good results last Dave.


Derek

User
Posted 18 Dec 2023 at 15:39
Brilliant news Dave, I'm on lifetime HT, every admiration for you guys who are jumping without a parachute and landing very well.πŸ‘
User
Posted 18 Dec 2023 at 17:16

Really good to hear Dave.

User
Posted 18 Dec 2023 at 20:34

Great result Dave! 10 years is a long wait to prove a point but it's looking good so far.


Jules

User
Posted 19 Dec 2023 at 07:38

Super chuffed for you Dave, Super super chuffed.


 


Jamie.

User
Posted 19 Dec 2023 at 13:36

Great news Dave. 

Ido4

User
Posted 19 Dec 2023 at 13:39
Nice one Dave , long may it continue πŸ’ͺ
User
Posted 16 Jul 2024 at 18:09

Thanks for all your previous good wishes.


I've just had my six monthly PSA and it is still 0.1 so I'm very pleased with that. I have had no treatment or HT for four years and I was treated with curative intent so all is looking good.


For people curious about the less than sign (<) or lack of it in this case. I have noticed that the GP software which is called 'Patient Access' never shows the < sign, whereas the NHS app which also shows my test results, does show the < sign when appropriate. So people for whom the < is important would be advised to install the NHS app to check their results. In my case any PSA less than 2.1 is good so I'm not worried about whether my PSA is 0.1 or <0.1 .

Dave

User
Posted 16 Jul 2024 at 18:13

Amazing news Dave! Keep up the good work! Hope all else is well 

User
Posted 16 Jul 2024 at 18:32

Great news Dave. Long may it last.

User
Posted 16 Jul 2024 at 19:18

Fantastic result Dave! 


 

User
Posted 16 Jul 2024 at 19:31

Brilliant News, Dave64!


Enjoy yourself.  Celebrations are in order!


Best wishes,


JedSee.

User
Posted 16 Jul 2024 at 19:52

Great news Dave!

User
Posted 16 Jul 2024 at 20:23

Clenched fist and a smile from me Dave. Great news.


 


Jamie.

User
Posted 17 Jul 2024 at 20:50

Brilliant news Dave, onwards and downwards!


Derek

 
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