Hi all,
My dad was diagnosed today with Grade 4, Gleason 8. All 12 biopsies had cancer. We don't know details of the Gleason score just that the lymph nodes are swollen and it has spread to some areas in the skeleton. There was no mention of spread to organs which I'm sure if there was would have been spoken about?
The urologist has suggested chemo alongside the decapeptyl injection he is currently on. He's a month into his first injection and his PSA was 260 when we were first told about this. He was having some pain in the back and pelvis region but this has since gotten better which I'm assuming is due to the decapeptyl.
Can anyone on here tell me how beneficial they have found this treatment and some positive stories as to how effective it has been.
My dad is a young 65 and still enjoys walking and keeping busy even though he is retired. I would hate to see this treatment change him as a person but as long as it works that's the main thing.
Once he has a course of chemo what happens then? Is he left on the hormone treatment alone? What happens If his PSA starts to rise again, can he get more chemo or is it something that can only be done once?
Also, clinical trials. Are these only done after chemo if it fails to help any longer or should we bring it up straight away?
I am scared and don't know what to expect. I have more and more questions as time goes on.
Any help, advice and positive stories would be much appreciated.
Thank you
Edited by member 08 Feb 2018 at 23:28
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Miffy |
User
I was put on Decapeptyl soon after diagnosis (mets in upper spine & right hip) with Docetaxel following a little later. My PSA was 67 at diagnosis dropping steadily initially with HT then the graph showed almost a straight line down during and after chemotherapy. My last three PSA levels have been undetectable - those have all been since chemotherapy ended (exactly a year ago)
I didn’t have any major issues with chemotherapy side effects. There were some but I was still running and cycling throughout. And a hour cardio workout earlier today, which is pretty much a regular thing.
The chemotherapy early on is definitely a positive - this was proved in a previous trial. And as Lyn says, it can be given again if needed. An ex-workmate is on his third lot!
All the best
Dave
Edited by member 09 Feb 2018 at 18:09
| Reason: Not specified
User
It seems that the standard treatment is HT and up front chemo. I was diagnosed May 2017 and that was going to be my treatment path until the onco got me onto Abiraterone instead of chemo. This was the drug that the STAMPEDE trial was all about. The HT alone took my PSA to undetectable but I’ve struggled with the side effects enormously. Hope everything works out ok
User
Originally Posted by: Online Community MemberThanks for your reply. We never met with the oncologist today it was the urologist (I don't know if that makes any difference). He told us a meeting with the multi disciplinary team will be next, could we bring up the subject of trials then?
I'm worried that using these treatments early on will mean when the disease becomes immune we have nothing else left to fight against it. Am I completely wrong in worrying about this?
Patients are not usually at the MDT meeting - that is where the radiographer, radiologist, urologist and oncologist look at someone's results and determine what treatment paths might be suitable and whether any path is particularly recommended.
You shouldn't worry that using chemo early on will mean you run out of options - all the research data shows that adding chemo now can delay the moment when the man becomes HT resistant.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Hi again,
Yes - on hormone therapy for the rest of my life. And please feel free to ask anything.
Dave
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If he was a) suitable for a trial like Stampede and b) at a hospital that takes part in PCa trials, the onco would most likely have mentioned it today.
Chemo can be done more than once as long as the patient is still strong enough to do it. Yes, he will be left on HT afterwards but don't say 'alone' like it isn't a proper treatment - the HT is starving the cancer so that it cannot replicate and we have had men whose HT kept the disease at bay for 10, 12, 14 years.
My father-in-law was 79 when he had chemo and he breezed through it. Some people continue to work full time on chemo while others are knocked for 6 - if your dad really struggles, he can stop early. Having chemo early is quite a new thing so not a lot of data yet but it seems that chemo makes the HT work more effectively for longer.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Thanks for your reply. We never met with the oncologist today it was the urologist (I don't know if that makes any difference). He told us a meeting with the multi disciplinary team will be next, could we bring up the subject of trials then?
That's great to hear about the HT. This added chemo early on can only be a positive then? Providing he copes ok with it which I'm praying he does.
I'm worried that using these treatments early on will mean when the disease becomes immune we have nothing else left to fight against it. Am I completely wrong in worrying about this?
Miffy |
User
I was put on Decapeptyl soon after diagnosis (mets in upper spine & right hip) with Docetaxel following a little later. My PSA was 67 at diagnosis dropping steadily initially with HT then the graph showed almost a straight line down during and after chemotherapy. My last three PSA levels have been undetectable - those have all been since chemotherapy ended (exactly a year ago)
I didn’t have any major issues with chemotherapy side effects. There were some but I was still running and cycling throughout. And a hour cardio workout earlier today, which is pretty much a regular thing.
The chemotherapy early on is definitely a positive - this was proved in a previous trial. And as Lyn says, it can be given again if needed. An ex-workmate is on his third lot!
All the best
Dave
Edited by member 09 Feb 2018 at 18:09
| Reason: Not specified
User
It seems that the standard treatment is HT and up front chemo. I was diagnosed May 2017 and that was going to be my treatment path until the onco got me onto Abiraterone instead of chemo. This was the drug that the STAMPEDE trial was all about. The HT alone took my PSA to undetectable but I’ve struggled with the side effects enormously. Hope everything works out ok
User
Originally Posted by: Online Community MemberThanks for your reply. We never met with the oncologist today it was the urologist (I don't know if that makes any difference). He told us a meeting with the multi disciplinary team will be next, could we bring up the subject of trials then?
I'm worried that using these treatments early on will mean when the disease becomes immune we have nothing else left to fight against it. Am I completely wrong in worrying about this?
Patients are not usually at the MDT meeting - that is where the radiographer, radiologist, urologist and oncologist look at someone's results and determine what treatment paths might be suitable and whether any path is particularly recommended.
You shouldn't worry that using chemo early on will mean you run out of options - all the research data shows that adding chemo now can delay the moment when the man becomes HT resistant.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Just an addition to my post above:
I wouldn’t like you to think that from that message everything is completely back to as it was before treatment. It isn’t and I’m not expecting it to be. My muscles constantly ache but I have found that I can live with it and it has become the new normal. There have been a few times I’ve thought “I’ll be glad when this is all over and I can get back to normal”. But of course that’s not going to happen and for the huge majority of the time I’m genuinely really happy.
I’ll be more than happy to answer any specific questions regarding treatment and side effects.
All the best
Dave
User
Originally Posted by: Online Community MemberI was put on Decapeptyl soon after diagnosis (mets in upper spine & right hip) with Docetaxel following a little later. My PSA was 67 at diagnosis dropping steadily initially with HT then the graph showed almost a straight line down during and after chemotherapy. My last three PSA levels have been undetectable - those have all been since chemotherapy ended (exactly a year ago)
I didn’t have any major issues with chemotherapy side effects. There were some but I was still running and cycling throughout. And a hour cardio workout earlier today, which is pretty much a regular thing.
The chemotherapy early on is definitely a positive - this was proved in a previous trial. And as Lyn says, it can be given again if needed. An ex-workmate is on his third lot!
All the best
Dave
Hi Davywls,
Thank you for that. So your chemo ended a year ago and you're currently on hormone therapy? What a great response for your PSA to have stayed so low this past year, hopefully it continues to do so for a long time yet.
If he is as lucky as you to stay active and not suffer too badly with side effects that would be great but only time will tell. It's good to read your experience.
I appreciate that life will never be the same for dad but I suppose it puts the trivial things into perspective. The poor man won't even have a beer now and I worry if it's going to take everything else he enjoys about life away from him, but as long as he can be active and do what he wants to do we will be happy. We want him to be around for a good few years yet as he's the heart of our family who we love dearly so making sure he has all treatments available is important to us. I may take you up on the offer of answering questions.
Thanks again.
Miffy |
User
Hi again,
Yes - on hormone therapy for the rest of my life. And please feel free to ask anything.
Dave