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User
Posted 02 Apr 2020 at 17:55

Hi


Unfortunately, in what will be my 60th year on the planet Earth. I just  been diagnosed Gleason 9 T3b N1 M1b PSA 78 only symptoms were getting up at night to go to toilet which I hadn’t done previously. So looking to find out a bit more!


 

User
Posted 02 Apr 2020 at 21:24

Hi Mark, 


Welcome to the club no one wants to join. You may have found this page already. Plenty of info on it. 


https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit


But following this forum is even better. You certainly hear the reality of living with this disease. Some times with a bit of humour. And you get some useful answers, when you ask a question. 


Good luck


 


 

Dave

User
Posted 03 Apr 2020 at 10:30

Hi there, 


Dave is right about the forum. My husband was diagnosed last year with similar statistics to what you have posted. I thougt it was the end of the world and this forum showed me otherwise.


You can literally ask anything and you will get a response even if it's just someone acknowledging you are not on your own. 


The PCUK nurses are excellent, I phoned them twice and their knowledge is brilliant. It's worth giving them a ring.


Best wishes 

Mrs MAS

User
Posted 03 Apr 2020 at 13:37

Hi Sorry to hear that you are now a member of this not so exclusive club. As one of the other members has already said you are not alone and no matter how low you feel there’s always someone to help pick you up. 
Have you been given any options yet from your consultant.

User
Posted 03 Apr 2020 at 13:59

I am sorry to read this but I hope you will feel more positive when you talk to all the men and partners on here. My oh and I have lived wirh the disease for over nine years now. He is now 72 and still here and coping after a whole run of different treatments. Due to rhe coronavirus he has had to stop chemotherapy but after six sessions there were improvements so we keep fingers crossed. Every person has a different experience  but there is always support here


 Good luck.

User
Posted 03 Apr 2020 at 16:03
Hi,

I'm almost exactly 2 years ahead of you with a G9 (4+5) N1 M0 Dx in April/May 2018 PSA was 78 but rose to 108 at the start of treatment. See my profile for a more detailed account of my journey so far but here are the brief details.

Started HT and 6 sessions of Docetaxal Late June 2018 and by November 18 PSA down to 1.1. Tolerated Chemo pretty well only a few days where I felt I couldn't work. I'm a builder who buys and renovates flats/houses doing a lot of physical work.

PSA started climbing slowly after chemo finished but nothing that alarmed my Oncologist. However last summer there was a more pronounced increase which has lead to me being prescribed Enzalutamide (Another type of HT) along with my original HT which did not seem to be able to suppress my Testosterone on its own. 5 months on PSA dropped from 13.9 to 1.2.

Try and get yourself on to the Stampede trial. Even if you only get on the control arm it means you are guaranteed at least 3 monthly check ups for life.

Above all keep positive and listen to your body. If all feels OK then just keep on doing what you would do normally. However if you don't feel too good take a rest and see if you feel better after a while. If it continues talk to you medic team.

Best wishes
Andy
User
Posted 03 Apr 2020 at 16:03
Hope situation will enable you to ride your classic Honda Blackbird again soon. It's surprising how many cyclists and motor cyclists who directly or indirectly through a family member have been on this forum over the years. Some of my best memories were as a member of a motor cycle club both socially and taking part in on and off road competitions. Have decided my present XJ 900 Divi (bought more for comfort than performance orientated), will probably be my last bike as I am finding it rather heavy for my ancient limbs to maneuver when not on it.
Barry
User
Posted 11 Jun 2020 at 19:54

ido4 Thanks, yes good result with Prostap 👍🏻

Edited by member 11 Jun 2020 at 19:55  | Reason: Not specified

Show Most Thanked Posts
User
Posted 02 Apr 2020 at 21:24

Hi Mark, 


Welcome to the club no one wants to join. You may have found this page already. Plenty of info on it. 


https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit


But following this forum is even better. You certainly hear the reality of living with this disease. Some times with a bit of humour. And you get some useful answers, when you ask a question. 


Good luck


 


 

Dave

User
Posted 03 Apr 2020 at 10:30

Hi there, 


Dave is right about the forum. My husband was diagnosed last year with similar statistics to what you have posted. I thougt it was the end of the world and this forum showed me otherwise.


You can literally ask anything and you will get a response even if it's just someone acknowledging you are not on your own. 


The PCUK nurses are excellent, I phoned them twice and their knowledge is brilliant. It's worth giving them a ring.


Best wishes 

Mrs MAS

User
Posted 03 Apr 2020 at 10:40

Also, I assume your username is your motorbike. My husband has a Suzuki SVR 1000!

Mrs MAS

User
Posted 03 Apr 2020 at 13:17

Well spotted- the only forums frequented prior to this were motorcycling and photography

User
Posted 03 Apr 2020 at 13:37

Hi Sorry to hear that you are now a member of this not so exclusive club. As one of the other members has already said you are not alone and no matter how low you feel there’s always someone to help pick you up. 
Have you been given any options yet from your consultant.

User
Posted 03 Apr 2020 at 13:59

I am sorry to read this but I hope you will feel more positive when you talk to all the men and partners on here. My oh and I have lived wirh the disease for over nine years now. He is now 72 and still here and coping after a whole run of different treatments. Due to rhe coronavirus he has had to stop chemotherapy but after six sessions there were improvements so we keep fingers crossed. Every person has a different experience  but there is always support here


 Good luck.

User
Posted 03 Apr 2020 at 14:54

Hi


Thanks ,


Chemo was mentioned, however with current climate may not be an option. I have a CT scan planned for next week so plan is treatment discussion following that

User
Posted 03 Apr 2020 at 14:55

Hi and thanks - chemo was mentioned toe however the current climate is an issue as you have found. 

User
Posted 03 Apr 2020 at 15:05
Hi ,my OH had similar readings Gleason 4+5 (9) T3 N1M1 with spread to para aorta glands .
That was over 4 years ago ! He started on hormone injections and then 6 rounds of chemo ,which he was luckily enough to carry on working every day .He had minimal side effects,mainly fatigue.
After about the second or third chemo his PSA came down to 0.01 undetectable which it has stayed there ever since ,he is on the stampede trial ,which maybe something that you could ask about . I can’t say emotionally it’s been easy but it’s our new norm .
Once treatment has started and you see your PSA coming down it will get easier .
Keep strong there’s a lot of support on this forum .
Best wishes
Debby
User
Posted 03 Apr 2020 at 16:03
Hi,

I'm almost exactly 2 years ahead of you with a G9 (4+5) N1 M0 Dx in April/May 2018 PSA was 78 but rose to 108 at the start of treatment. See my profile for a more detailed account of my journey so far but here are the brief details.

Started HT and 6 sessions of Docetaxal Late June 2018 and by November 18 PSA down to 1.1. Tolerated Chemo pretty well only a few days where I felt I couldn't work. I'm a builder who buys and renovates flats/houses doing a lot of physical work.

PSA started climbing slowly after chemo finished but nothing that alarmed my Oncologist. However last summer there was a more pronounced increase which has lead to me being prescribed Enzalutamide (Another type of HT) along with my original HT which did not seem to be able to suppress my Testosterone on its own. 5 months on PSA dropped from 13.9 to 1.2.

Try and get yourself on to the Stampede trial. Even if you only get on the control arm it means you are guaranteed at least 3 monthly check ups for life.

Above all keep positive and listen to your body. If all feels OK then just keep on doing what you would do normally. However if you don't feel too good take a rest and see if you feel better after a while. If it continues talk to you medic team.

Best wishes
Andy
User
Posted 03 Apr 2020 at 16:03
Hope situation will enable you to ride your classic Honda Blackbird again soon. It's surprising how many cyclists and motor cyclists who directly or indirectly through a family member have been on this forum over the years. Some of my best memories were as a member of a motor cycle club both socially and taking part in on and off road competitions. Have decided my present XJ 900 Divi (bought more for comfort than performance orientated), will probably be my last bike as I am finding it rather heavy for my ancient limbs to maneuver when not on it.
Barry
User
Posted 03 Apr 2020 at 16:59

Thanks -  hopefully find out soon regards treatment, but will ask about trial

User
Posted 03 Apr 2020 at 17:00

Thank- Blackbird getting heavy for me to move around so know the feeling !

User
Posted 03 Apr 2020 at 17:02

Thanks for the feedback - I’ve always thought of myself as a strong character and positive with it, it’s good to hear other positive messages 

User
Posted 11 Jun 2020 at 11:38

So 10 weeks on and a quick update.


I was prescribed 3 weeks of Bicalutamide then a Prostate injection and then 3 monthly injections going forward.


Due to COVID, chemo still not option so consultant put my name forward for Abiratetrone this was approved.


I had my first blood tests this week since diagnosis in preparation for the above. My PSA level has dropped from 72 to 2.2 so Prostap has been working it seems.


 


With the blood tests coming back fine. I start Abiratetrone today. 

User
Posted 11 Jun 2020 at 16:07

Good progress with a great response to PROSTAP. Hopefully Abiraterone will reduce PSA further and keep it that way for longer.

Ido4

User
Posted 11 Jun 2020 at 19:41

My oh did very well on arberatitone for nearly two years before his psa started to rise again. He had virtually no side effects apart from fatigue on hills and some foot swelling. Many men seem to do well for much longer and everybody is checked monthly for any blood changes etc - just have to keep an eye on blood pressure.


Good Luck.

User
Posted 11 Jun 2020 at 19:54

ido4 Thanks, yes good result with Prostap 👍🏻

Edited by member 11 Jun 2020 at 19:55  | Reason: Not specified

User
Posted 11 Jun 2020 at 20:00

Gillyflower


Have been warned about blood pressure and have purchased a monitor.


I was also warned of the effect on muscles and have a strength and conditioning plan so hopefully that won’t be affected too much by fatigue 👍🏻


Mark

 
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