First off can I just say that this site has kept me from falling to pieces so many times in the last couple of months. Thank you to everybody that contributes to it. I find so much hope and a calmness in reading all of the posts. Hubby diagnosed 2 months ago with advanced pc. In his lymph nodes and bones. First psa was 432, next one 647 then on 17th December he had his first two Firmagon injections. He has his next 17th Jan. We will be having another psa blood test that day. My question is does anybody out there know how much this should drop by if it’s working. Are we looking at a drop of 50 or are we looking in the hundreds. I know we will have to wait for the results for the exact reading but just want to know what we should realistically be hoping for. Thank you lovely people x
Hi Gin
A good thing to do, is write down any questions you feel should be asked, as in scans, blood tests, side effects who to contact in an emergency or if you need to speak to someone, have all your results and appointments sent to you, for future examination in case something was said or missed. ( I always ask for these and get them ) what treatments will be forthcoming and finally what is plan B as regards other medication if this one stops working.
Stay safe
Joe
It's a hormone treatment that blocks testosterone reaching the prostate cancer cells which slows the growth or may shrink it. I was given this option instead of chemo and radiotherapy in the words of my oncologist he's keeping these in his back pocket. When asked about plan b he said I'll be on this treatment for quite a few years. Since I've been on this treatment I've gone back to work part time had holidays to Rhodes and Spain and back playing 5 aside football hopefully this reply will help.
Hi,
My experiences. I started on Firmagon in July 2019 when I had a PSA of 1916. It then fell to about 4 by December 2019, and then fell even further such that I have been between 0.1 and 0.2 after that. The biggest problem I have with Firmagon is the side affects, i.e. on the day of the injection I get injected at about 8:30-ish..........by lunchtime I start to feel a bit 'fuzzy'.....at about 4 pm until 8 pm I go freezing cold (to the extent that I start to shake)......after 8 pm I start into significant hot sweats with my mind racing/delerious......this goes on significantly until about 1 am after which I start to get back to some normality.....by 4 am I am nearly back to normal (but obviously very tired as I had not had any sleep). My learnt coping mechanism to have a hot bath during the 'freezing period' plus dose myself up with paracetamol from about 3 pm until the morning.....this seems to help. The other on-going side affects are that I feel weary, plus need to urinate more frequently/urgently. As an aside, the nurses at my GP who give the injections were so concerned about the Firmagon side affects (for others) that they were going to contact the hospital for direction, e.g. one patient had become so poorly (after the injection) that he called the paramedics (not knowing that it was the Firmagon side affects). I am guessing that not everyone is going experience the same reaction as myself, but may help anyway?
Regards.
Hi Septimus,
Good luck to you and your hubby first of all.
I appear to have a very similar prognosis to your husband. Diagnosed exactly 2 months ago today with PCa, lymph nodes and Bones. Upon diagnosis my PSA was 215.
Thankfully, I had my first Firmagon injection on Prognosis day too and 28 days later (December) it had come down by 99% to 3.8 and with that reduction, my severe back pain had also reduced massively.
Fast forward to yesterday and my PSA has reduced by a further 62% from 3.8 to 1.4, so thankfully it's all going well.
That is just my story / journey so far, if your husband's PSA reduction is not quite so big, please do not ready anything into my posts. We are all different humans, with different bodies and complications and although we all have PCa, our cancer belongs to us alone.
My Onco has also started me on Enzutamide tablets this past week as well, which others have described above.
Both of these treatments are designed to completely stop the production of Testosterone into the prostate and blood stream, in order to get it to 0 or as near as dammit and keep it there for as long as possible.
Hi Hotflushlva
Can I ask how many firmagon injections you had, and what was your psa before they then put you on the enzalutamide. Are you now taking these two together or is it just the enzalutamide.
Great number 0.007
Thanks
Firmagon is a great drug that that restored my strength and largely removed the symptoms of advanced PC. My PSA went from 400 to 6 in 6 weeks.
When mixed with Enzalutamide it is quite likely to take you out completely on the day of the injection and you may barely be able to eat a meal and go to bed.
However after a good night's sleep you should feel much better by the morning. It is just a question of planning ahead so that you're not doing anything in particular on the day of the injection.
Whatever cancer throws your way, we’re right there with you.
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