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PSA on the rise again

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User
Posted 09 Sep 2022 at 19:19

Hi my husband has been to see the oncologist today as his Psa is starting to rise, he has put him on 50mg of Bicalutamide along with his monthly degralex we are now waiting for appointments for full body and bone scans to see what’s next, is this normal procedure 

thank you

ann

User
Posted 09 Sep 2022 at 19:19

Hi my husband has been to see the oncologist today as his Psa is starting to rise, he has put him on 50mg of Bicalutamide along with his monthly degralex we are now waiting for appointments for full body and bone scans to see what’s next, is this normal procedure 

thank you

ann

User
Posted 11 Sep 2022 at 00:03

I hope so, too - and then after that, you should get some additional time from the effects of withdrawing the bical. Then there is enzalutimide, abiraterone or apalutimide - although the data says they work for around 18 months, some men stay well for 5 years or more. And there is still chemo as he responded so well last time, they can do it again ... and again. Plus who knows what new treatments are round the corner!

Hold your nerve, Ann - there are so many options still open after this.

Edited by member 11 Sep 2022 at 00:05  | Reason: Not specified

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

User
Posted 11 Sep 2022 at 07:32

Thanks for the reassurance lynn I feel better for reading your message, I know there is other options out there I’ve just got myself in a panic I think as we were expecting a longer period on the degralix, also we didn’t realise chemo would be on offer again but that is good to know 

Thanks Ann

User
Posted 02 Nov 2022 at 12:27
Excellent result. Go and enjoy your holiday!

Chris

User
Posted 02 Nov 2022 at 17:00

Great news Ann. So pleased for you both. Long may it continue x

User
Posted 09 Nov 2022 at 22:27

Great news Ann 

Mrs MAS

User
Posted 10 Nov 2022 at 11:10
Marvellous news, just enjoy your holiday Airy
User
Posted 01 Feb 2023 at 13:25

Hi ya

Good news with psa readings long may it continue.

Regards Phil 

User
Posted 02 Aug 2023 at 12:03

Hi Ann 

I have been on Enzalutamide for 10 months now,I experience a lot of bone ache especially in neck and back and loss of body hair not,slight headaches but don't really suffer from fatigue,but I'm not taking pain killers and QOL is about 7/10 so not doing to bad all things considered,my psa is slowly rising the last 4 months from 0.9 to 4.06 my oncologist appointment is in a few months so we'll see what she wants to do then,I know it's difficult to plan your life to far ahead and my heart sank when I was told another rise earlier this week,but what can we do just sit and wait not me I'm off to Rome the weekend make memories.

Regards phil

User
Posted 13 Dec 2023 at 13:14

Hi everyone just a quick update

husband saw oncologist today for results of recent scans again no significant changes although psa is rising he’s happy to keep him on the Bicalutamide but he is arranging for him to have Radiotherapy to his right hip as he has a lot of pain there, we are going to Canada for Christmas so he’s going to get that done before we go, we also spoke about going to Canada for 3 months next year so he is going to change his monthly degralix injection to a 3 monthly one. Overall really happy with today’s consultation.  
best wishes to everyone 

ann

User
Posted 13 Jan 2024 at 09:33

Hi

I'm on prostap injection every 3 months can't really say I have side effects from it but then again I'm on that much medication at the moment I don't know wiether I'm coming or going lol.

All the best with the switch regards Phil 

User
Posted 06 Mar 2024 at 11:36

Another update 

Radiotherapy on husbands hip went well, we started going swimming which is the most exercise my husband has managed to do for a long time, had a telephone appointment today and psa is still rising oncologist has arranged more scans and he will see us again when scans are done he said looks like a new line of treatment is needed not sure what will be next

hope everyone is doing good

ann 

User
Posted 01 May 2024 at 16:32

Another update

1 -05-2024

husbands appointment with oncologist this morning for results of recent scans as psa was still rising, small changes to lung area so he is now coming off Bicalutamide and going onto Enzalutamide.

Hope everyone is well 

Ann 

User
Posted 13 Sep 2024 at 11:09

Hi loz my husband has been on Enzalutamide since may and apart from being tired all the time things are ok although his last visit at the hospital his psa has risen again the nurse didn’t seem too concerned and we don’t see his oncologist until after his next hospital visit so we will wait and see what happens.

hope your dad is well

many thanks Ann

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User
Posted 09 Sep 2022 at 23:11
Yes, it seems the onco suspects that the cancer is still finding small amounts of testosterone to feed on - the bicalutimide will disguise the testosterone so the cancer can't find it. This can be effective for anything from a few months to a couple of years. After that, lots of other treatments still on the table.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Sep 2022 at 07:36

Thanks for your reply lynn, that’s sound like good news obviously I’m worrying about the scan results although the oncologist did say that there is other treatments available but he doesn’t want to exhaust everything at once. Fingers crossed the scans will be ok. 
thanks Ann

User
Posted 10 Sep 2022 at 20:11
I am not sure what an okay scan would look like - even if the scan shows no changes, there is still a problem? No point worrying about it though - you already know that the cancer is active and they have already changed the treatment plan to deal with it so whatever the scan shows won't really affect anything.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Sep 2022 at 21:15

Thanks for your honesty lynn, here’s hoping that Bicalutamide along with degralix works for more than 15 months 

thanks Ann

User
Posted 11 Sep 2022 at 00:03

I hope so, too - and then after that, you should get some additional time from the effects of withdrawing the bical. Then there is enzalutimide, abiraterone or apalutimide - although the data says they work for around 18 months, some men stay well for 5 years or more. And there is still chemo as he responded so well last time, they can do it again ... and again. Plus who knows what new treatments are round the corner!

Hold your nerve, Ann - there are so many options still open after this.

Edited by member 11 Sep 2022 at 00:05  | Reason: Not specified

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

User
Posted 11 Sep 2022 at 07:32

Thanks for the reassurance lynn I feel better for reading your message, I know there is other options out there I’ve just got myself in a panic I think as we were expecting a longer period on the degralix, also we didn’t realise chemo would be on offer again but that is good to know 

Thanks Ann

User
Posted 11 Sep 2022 at 10:44
There was a member on here who had chemo 6 times or something like that - I think his username was Otto? We have other members who have had docetaxel twice and then cabazitaxel when the doce stopped being effective. It depends how well the person tolerates chemo side effects and how much it knocks the cancer back.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Sep 2022 at 11:26

Hi Ann, . My husband diagnosed as incurable in 2019, had chemo and RT and on lifelong hormones. His PSA started to rise 2 yrs 9 months later and was doubling quickly, we are awaiting an oncology appointment and he too has been put on 50mg bicalutimide. Here's hoping it works for them both, even for the few months will delay start of the next treatments. Thanks to Lyn for explaining how it works.

Edited by member 12 Sep 2022 at 11:28  | Reason: Not specified

Mrs MAS

User
Posted 12 Sep 2022 at 15:09

Thank you for replying Mrs Mas your journey sounds very familiar to ours and hopefully the new treatment works for a longer period, the waiting for appointments is so stressful.

thank you

ann

User
Posted 02 Nov 2022 at 11:59

Update - my husband has been to see the oncologist today for his scan results, no significant changes to scans, his psa has dropped to 0.04 so going forward staying with the monthly degralix and daily 50mg Bicalutamide and he will see him again in 3 months time, we are so happy with today’s consultation. Next job is to try and get insurance for America for November 

ann

User
Posted 02 Nov 2022 at 12:27
Excellent result. Go and enjoy your holiday!

Chris

User
Posted 02 Nov 2022 at 17:00

Great news Ann. So pleased for you both. Long may it continue x

User
Posted 09 Nov 2022 at 22:27

Great news Ann 

Mrs MAS

User
Posted 10 Nov 2022 at 11:10
Marvellous news, just enjoy your holiday Airy
User
Posted 01 Feb 2023 at 10:19

Update 

husband had a telephone appointment this morning psa stable at 0.47 oncologist happy no need to change anything so still monthly hormone injections and 50mg of Bicalutamide, he will speak to him again in 3 months 

good luck to everyone 

ann

User
Posted 01 Feb 2023 at 10:55

I am pleased the bicalutimide is working for your husband - time to celebrate.

Mrs MAS

User
Posted 01 Feb 2023 at 12:24

Thank you Mrs Mas, it’s such a relief the few days before the results are so stressful 

hope your husband is doing well 

ann

User
Posted 01 Feb 2023 at 13:25

Hi ya

Good news with psa readings long may it continue.

Regards Phil 

User
Posted 03 May 2023 at 09:54

Another update

another telephone conversation with oncologist husband’s psa down to 0.39 so carrying on with degralix and Bicalutamide, my husband spoke to the doctor about increased pain in his groin area and top of his neck he asked if he was still taking calcium supplements but my husband stopped taking them as they seemed to upset his stomach anyway he said it’s more likely the hormone injections causing him pain so he has to start the supplements again and he will see him again in 3 months time. 

hope everyone else is well 

Ann

Edited by member 03 May 2023 at 14:02  | Reason: Wrong psa

 
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