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User
Posted 28 Jul 2021 at 10:28

Hi just thought I’d give a little update on my husband who was diagnosed in may with advanced metastatic prostate cancer 

we’ve just been to see the oncologist today, he is happy with how he is responding to his treatment his psa has gone down to 15 from 89.5 he is on Degarelix hormone injection every 28days and has 1 round of chemotherapy due his 2nd this Friday, I know it’s early days but it’s positive news going forward 

hope everyone is well

ann 

User
Posted 28 Jul 2021 at 10:28

Hi just thought I’d give a little update on my husband who was diagnosed in may with advanced metastatic prostate cancer 

we’ve just been to see the oncologist today, he is happy with how he is responding to his treatment his psa has gone down to 15 from 89.5 he is on Degarelix hormone injection every 28days and has 1 round of chemotherapy due his 2nd this Friday, I know it’s early days but it’s positive news going forward 

hope everyone is well

ann 

User
Posted 28 Jul 2021 at 18:09
Hi. I started the same journey in February. 3 mets. Bicaltumide (?) for a month then zolodox injection every 3 months (now in month 7) then enzalutamide daily (now in week 10). I was told by my urologist that I had to have the zolodox for the rest of my life - but he thought the maximum was 5 years! Knowledgeable people on this board and research indicate grounds for greater optimism as long as I play my part (diet, exercise, positive attitude). So far PSA went from 64 to below one and two weeks ago was 0.11. Testosterone negligible. Side effects (fatigue and hot flushes manageable). RT scheduled for October time. Good luck to your hubby.
User
Posted 30 Jul 2021 at 13:35

Yeah my husband had a double dose on his first treatment now every 28 days, starting to feel a bit better about things, he's just had his second chemo today his first one wasn't too bad he had a few days were he wasn't feeling too good but overall he was good so hopefully it continues that way

Thank you so much for your message 

Hope all is well with your husband 

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User
Posted 28 Jul 2021 at 11:46

Thanks for the update Ann. I'm glad psa is coming down. Is the hormone available as a three monthly injection? I would find 28 days a bit inconvenient. Sometimes they start you on the 28 day dose just in case you have a bad reaction, but then you can switch to three monthly or 12 weeks depending on the exact instructions. 

Dave

User
Posted 28 Jul 2021 at 12:24

Hi Dave right from the start my husband was told he would be on the hormone injections every 28days for the rest of his life and can’t be missed, we actually had to cut a little break away short as his second injection was due

thanks Ann 

User
Posted 28 Jul 2021 at 18:09
Hi. I started the same journey in February. 3 mets. Bicaltumide (?) for a month then zolodox injection every 3 months (now in month 7) then enzalutamide daily (now in week 10). I was told by my urologist that I had to have the zolodox for the rest of my life - but he thought the maximum was 5 years! Knowledgeable people on this board and research indicate grounds for greater optimism as long as I play my part (diet, exercise, positive attitude). So far PSA went from 64 to below one and two weeks ago was 0.11. Testosterone negligible. Side effects (fatigue and hot flushes manageable). RT scheduled for October time. Good luck to your hubby.
User
Posted 28 Jul 2021 at 18:25

I was on zoladex which is available is 4 weekly or 12 weekly. I don't know if degarelix is available in two strengths.

If all is working fine maybe best not to change, but if 4 weekly is too inconvenient you may be able to switch to zoladex or another different brand of HT. Talk to the oncologist if you think switching would be a good idea.

Which ever you are on you don't want to miss a dose. 

Dave

User
Posted 29 Jul 2021 at 13:23

Thanks Dave I will pass this information on to my husband and he will probably ask about it 

thank you

ann 

User
Posted 29 Jul 2021 at 16:48

Degarelix only comes in a 28 day dose - there isn't a 3 or 6 month version of it. The main benefit of Degarelix is that it can be given immediately if a man is diagnosed with advanced cancer and brings the man down to castrate level almost instantly; there is no need to do the weeks of bicalutimide first.

Edited by member 29 Jul 2021 at 23:33  | Reason: Not specified

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

User
Posted 29 Jul 2021 at 17:44

Thanks Lyn, I will file that away for future reference. It's still worth Ann knowing about the possibility of other HT as it may now be possible to swap, of course only if every 28 days is actually a problem for her husband, and also if swapping doesn't cause problems.

Dave

User
Posted 30 Jul 2021 at 07:20

Hello Ann

Good to hear psa vastly dropped. Its a relief when treatment starts working and definitely helps increase positivity.

My husband was told the same, he will be on degralix every month indefinitely, regardless what other treatments he may move on to. At the start of degralix he was given 2 injections... Think because psa was in hundreds and wanted to get it down urgently.

I'm not sure what area your from but my husbands oncologist in Highland provided us with a folder of information about treatments (Advanced Prostate Cancer Explained), produced by Prostate Scotland. Its an excellent source of info alongside this forum.

Hoping things are feeling more hopeful for you both. X

User
Posted 30 Jul 2021 at 12:57
When a man first starts on Degarelix, he gets a double dose which knocks the testosterone out, and then one dose every 28 days after that.

Interestingly, although Ann's medical team said it must be done exactly on 28 days, the maker's instructions say that it is okay to go 2 days either side.

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

User
Posted 30 Jul 2021 at 13:35

Yeah my husband had a double dose on his first treatment now every 28 days, starting to feel a bit better about things, he's just had his second chemo today his first one wasn't too bad he had a few days were he wasn't feeling too good but overall he was good so hopefully it continues that way

Thank you so much for your message 

Hope all is well with your husband 

User
Posted 30 Jul 2021 at 13:42

I think the reason they said couldn't go past 28 days as we had a planned break before we even knew my husband had pc and when they said when his second dose was due we said we are away then and the nurse said we had to come back early as we could miss it 

Thanks everyone for all information given i really appreciate it

Ann

 
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