I was just wondering if this is predominately an American site, I am based in the UK and the treatment I see a lot of people discussing is a lot different to what my partner had. I will give you a brief overview, partner was diagnosed Dec 2016 aged 43- advanced PC with bone mets everywhere including skull, which also caused a sub-dural haemotoma, never had a biopsy but would have been classed as 9- 10. PSA on diagnosis 537. He passed away 2nd Oct 17 (just 9 months later). I am still struggling to come to terms with this and I am questioning whether I could have done more and questioning his treatment. He had upfront docetaxel combined with monthly Zoladex injections. His PSA only got down to 18 it as its lowest and this started to rise again even before last chemo was finished it went to 23 and I was told you can see fluctuations with chemo. I still wasn't happy and got him to have a PSA done a month later it had gone up to 50, then the oncologist started to take note and he was put on BICALUTAMIDE. 5-6 weeks later I still wasn't happy and he had started to struggle, got another PSA test done and had jumped to 444. He died a week a later. He was put on prednisolone in the last week for more chemo but never made it to that. Why did they not try something else like abiraterone ? or changed the hormone therapy.
Is this an American Site : I was just... - Advanced Prostate...
Is this an American Site
It's not American, although it is almost always in English. I assume most of the posters are American just because the relative population of English-speaking countries favors that assumption.
He obviously had a VERY virulent form of the disease, and it moved through him quickly and tragically. From your description, it sounds like the regime they tried was standard of care - hormone therapy and docetaxel when multiple mets are discovered is really the best choice, and given his cancer's virulence, I doubt anything would have made a difference.
You are engaging in a very understandable replay of past events, but I urge you to drop it. I did the same thing when both my parents died of cancers - what could I have done differently? what could they have done differently? what could the doctors have done differently? ... It really doesn't matter at this point, does it? I hope you will be able to turn your attention instead towards him, as he was for most of your time together, and the irreparable hole this loss leaves in your life. I'm sorry for your loss.
You have a way with words, Tall_Allen, and you’re very insightful. My heart goes out to you sport0910.
Thanks for your reply. I just see a lot of posts from people that are having treatment in the USA. I hope in time I will be able to drop this as it is wasted energy and will not change anything that has happened but it does matter to me that everything was done that possibly could have. I wonder if things had been done differently, if he would still be here. In my own selfish way I hope that he would still be here, but I would not have wanted to see him suffer anymore. I just need to come to terms with what has happened and that at the moment is still very difficult.
I am very sorry for the loss of your parents.
Sport0910
Changes in my chem came after reading UK posts. Drs here wanted to stop chemo after 6. but UK guy were getting 10. I made 9. Site here talked about adding Xtandi. PSA up between 4&5 added new drug. I was helped by guys here and you guys in UK. Sorry for your loss, we all react differently to treatments and I have been lucky so far, partly because of you guys over there. Feel your loss and get on with life. Lost brother 2 years ago and still cry when I want to call and talk to him on phone. Life happens and we're left behind to cope. Again, sorry for your loss, know how it feels.
Doug
Hi Doug, Thank you for your reply, I too am sorry for your loss. I do hope you continue to keep well.
Emma
Sorry for your loss. There are not enough words to say but prayers coming your way
It always seems to me that an earlier age at diagnosis seems to have a worse outcome. Is it the cells themselves which are more ‘vigorous’ than older men?
Given you dear husbands high Gleason, I don’t think he stood a chance. I’ve been taking Abiraterone for over 6 years, but I’m much older than your husband, and my Gleason was 7, with multiple Mets, one of which is also in my skull. My PSA was 571. Abiraterone varies from patient to patient, some can’t tolerate it at all and suffer liver problems and high blood pressure, other have heart attacks due to cholesterol issues.
You will never know what the outcome would have been, try not to dwell on ‘what if’, and remember all the good times you had. Easy to say, I know, but grief can consume you. I am truly sorry for your loss, he’s in a much better pain free place now.
Martin
Hi Martin, Thank you for your reply. It is so hard trying to get answers that deep down I know I am never going to get, because we don't know the answers. I just need to let go, when that will be I don't know. I am throwing myself into volunteering work with Prostate Cancer UK to raise awareness and raise more money, and this helps me a little knowing I am trying to help others. I hope you continue with life as best you can. Take care
Emma
To have high risk cancer at such a young age is tragic because who would be thinking about Psa tests at that stage in life? There’s nothing anyone could have done to save him. May he Rest In Peace!
Thank you
I won't discuss the treatment although it does seem to be predominantly based upon the STAMPEDE UK trial. Hit early and hard. I am English in my 7th year of PCa and about to enter my 5th year of treatment. No symptoms led to DX Stage 4, Incurable, metastatic at end 2014. Around 40 bone tumours found. There are many of us on this site and there is a London address although I have found USA patients understand more about this disease than other nations. God Bless.
Hi, Thank you for your reply. Yes I think his treatment was based on the STAMPEDE trial. I agree with this, is just the after chemo months I am questioning if more could have been done, but maybe it was just a case it progressed to quickly, and not enough to try anything else. I feel that the USA seem way ahead of us, so many talking about Lupron and flutamide but don't hear so many of UK people using this.
Forgive me if I am wrong or making an assumption, but I am please to hear that you doing well and treatment seems to be working for you. Take care
Emma
To sport0910: The past is a done deal. No way to change it. Today is Now so live for today and forget the"IFs". Try Humor!!!
Good Luck and Good Health.
j-o-h-n Monday 05/28/2018 5:37 PM EDT
John, your right the past is a done deal and I can’t change it, but it doesn’t make grieving any easier. When you lose someone you love, you do question everything and “what if’s”, it’s is natural to do so. Unfortunately right now I do not have anything to laugh about.
We all have grieved at one time or another. When my Father passed away I didn't watch television, listen to the radio or go to the movies or theater for one year. This was one way to grieve and to pay my respects to my Father, so I understand how you feel. I sure had lots of IFs also. Looking back I would have respected my Father in the exact way. The Greeks have a saying to those that are in mourning it's
"Η ζωή στους ζωντανούς" which means "Life to the Living". So you must Live Life to it's fullest every day and plow ahead with your life. My hobby is humor (humour in England) that's why I tried to encourage you to try humor in order for you to lift your spirits and to get on with your life.
"When you're feeling sad, just remember that somewhere in the world, there's a moron pushing a door that said pull"
CHEERS.
Good Luck and Good Health.
j-o-h-n Monday 05/28/2018 9:21 PM EDT
This did put a smile on my face, thanks J-o-h-n. But that moron is probably normally me ha ha
Hi I am in England and at the moment going through what you went through but my hubby is 70 please get in touch he is now on chemo third lot hit him like a slap in the face but to cut a long story short he has aggressive prostate cancer that's has spread please contact me at least I can tell you what's happening here is on docetaxel and prednisone and three monthly injections xx
Hi Sue, thank you, I have messaged you
Wow Sport0910,
It amazed me how tough this disease is, how unprepared we all are, and how little is known about treatments. The people here are fantastic. I am learning every day in every post.
Look at holding on to the what if's like my Mon used to speak of revenge. "It's like taking poison and waiting for the target of your ire to die" Just not bloody likely to happen, only hurting you.
We are in a changing place with CRPC at this time. With my gleason of 9+ (4.5 +5.0) and had it been even 5 years earlier, I would be dead. The treatments have changed that much. Even with that had mine not been caught at an early stage, had it escaped prior to removal of my prostate, had the rescue radiation not worked so well... etc.. Do you see my friend? So many things could have been off for me, by a month, a week, a year and I too would no longer be here.
I can do the same in reverse, had I found it a little earlier etc.. etc ad nauseum.
You have survivors guilt on top of your grief my friend. I think the volunteering is a great way to work through some of it. And that is what it is a commitment to work on and accept the grief, the reality of you life now, and to live as much as you can in the now!
Easy for me to say, and it seems once every Lupron cycle (3 months) I tank emotionally myself, so my deepest wishes for your healing.
Peace,
Bees
Thank you Bees, I just need to be know that everything was possibly done for him. I hope you have got some good support around you, I cannot imagine how all of you men deal with this emotionally and physically. Take care
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