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
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User
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
Excellent result. Go and enjoy your holiday!
Chris
User
Great news Ann. So pleased for you both. Long may it continue x
User
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Marvellous news, just enjoy your holiday Airy
User
Hi ya
Good news with psa readings long may it continue.
Regards Phil
User
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
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
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
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
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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
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User
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
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
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User
Thanks for your honesty lynn, here’s hoping that Bicalutamide along with degralix works for more than 15 months
thanks Ann
User
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
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
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
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User
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
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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
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
Excellent result. Go and enjoy your holiday!
Chris
User
Great news Ann. So pleased for you both. Long may it continue x
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Marvellous news, just enjoy your holiday Airy
User
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
I am pleased the bicalutimide is working for your husband - time to celebrate.
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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
Hi ya
Good news with psa readings long may it continue.
Regards Phil
User
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
User
Another update
my husband had an appointment with oncologist today and there is a slight increase in his PSA 0.9, he said he is going to wait a bit longer before he requests more scans, so we wait another 3 months he has been taking Bicalutamide for 9 months now, it’s hard not to worry.
Hope everyone is well
ann
User
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
Hi Phil
my husband is the same with pain and fatigue but he is still working, he works in an office so not strenuous work and he always says it gives him a purpose, the oncologist said he needs to start taking the calcium tablets again as he stopped then as they were upsetting his stomach. We have Florida to look forward to in November were we are meeting my son and his wife and our 2 grandchildren who live in Canada so can’t wait for that. My husband is on monthly degralix he is thinking of asking if he can change to a 3 monthly one not sure if that’s possible.
enjoy your holiday Phil
ann
Edited by member 02 Aug 2023 at 12:50
| Reason: Not specified
User
Similar here, had / got G9 T3 PC, had 37 doses of radio. Latest bloods suggest PSA is still 4 and Testosterone is above 1. Been put on Bicalutamide on top of hormone jabs (every 3 month) retest in 4 months 🤞 wondering what the chances are that the numbers will drop to ‘safe’ levels and then what ???
User
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
My husband is going to be changing from monthly degralix injections to prostap 3 monthly, has anyone else done this change over if so is there any other side effects to look out for.
thank you
ann
User
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
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