On surface very encouraging......carry on with ADT (only on 1 month so far) then add Abiraterone plus P. 3 to 5 years or more of life. Want you to stay in town for three months then can travel for 2...........well reading through this forum and reading some other studies some of the information belies his enthusiasm...ie
Median time to deterioration of functional status assessed by the FACT-P total score scale was 12·9 months ( Oncologists own study) orascopubs.org/doi/abs/10.120... Btw to recap Have psa around 150 with pelvic and lung mets (no pain or real symptoms) Gleason of 9
So Quality of life an issue and so many sad stories on this forum. Some good. Can I have some truthful comments from guys who have experienced this setting with my kind of stats
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No lung Mets and lower Gleason, but PSA 571, 7 bone Mets, skull, shoulder, two ribs, pelvis and both femurs. At dx, 3 years maximum life expectancy, joined Stampede trial on Zoladex, Zytiga and Prednisone. PSA dropped to immeasurable after 12 weeks.
Just approaching 7 years since dx, PSA still immeasurable.
The first three years are the toughest, but stick with it. Stay positive, and exercise every day to try to prevent muscle wastage.
Thanks Tommy for your reply.............Hell, I have no problems with sweats, muscle loss etc I was given the impression that the annihilation of testosterone really settled things down from an overall standpoint................but you say first 3 years bad.............how so...........
Pretty much what you’ve highlighted, I also got depression for a couple of days every 45 days or so, which was really tough on me and my loved ones. Very emotional and tearful too. No sex drive whatsoever.
Been on it for 18 months. Only mets was to pelvis, L2/L3 and a few strays on shoulder and a couple of ribs. Until 2 weeks ago. A follow up CT scan showed 6 new lesions (in the past 2 months) on my liver. Had a biopsy last week. Awaiting the results. PSA was 190, Gleason 9. PSA now 1.0006. Discussing this in another thread. The PSA may not last as a surrogate for the activity of PC.
Bone pain which I currently do not have is my biggest concern. Is it accurate to assume that it is unlikely to happen while still androgen sensitive and medicated with adt and Abiraterone.............theoretically mets should shrink
Now of course my story, or journey with Pca will be different to yours, and I know a guy who has lasted 25 years after diagnosis and another who has reached the point of failure of Docetaxel chemo like me in only 3 years, wheras I it took me 9 years to get to same point. I have countless bone mets, but no pain, and I cycled 142km these last 7 days during my 4th chemo cycle.
I will seek Lu177 treatments soon. There is nothing else, Psa now 50, and Docetaxel seems to have been useless, I began chemo at Psa of 12.
After diagnosis, nobody knows how long they might last, but those who were diagnosed with Gleason 9 have the lowest chance to get 10 years after diagnosis.
It seems that many men get full life if they have successsful RP when Psa is less than 5.0 and tumour at PG is no more than pea sized. But most men have ED after RP, and maybe continence problems, and this depends on surgeon's skills at avoiding nerve damage during operation.
I have ZERO sexual ability, but am fully continent because In did not have RP but had only EBRT and years of ADT.
I don't have a partner so nobody cares that I have been fully desexed by Pca and the treatments than follow.
Hi j-o-h-n, I'd buy you lunch at my favourite restaurant, if you were here;
From what I have experienced in life, the doctors and nurses care very much about me and the other patients, but away from hospitals and alone at home, there's nobody. Now I have had 40 years since a missus vamoosed to find another wife, build a life, have relatives, but for 1,0001 reasons it just didn't happen, so whatever happens to me only affects me, and nobody else. I have gotten quite used to being alone where other ppl would find it impossible to live without ppl around them.
I find that it is not very upsetting that when I spend time in hopspitals I never get any visitors. If I die, and am conscious, I'll be alone, and just hold one hand with the other, no fuss, nobody in tears around me, and I'll just be thinking "Time for me to vamoose from Life" - to become gas on planet Earth and I hope the bundle of atoms I borrowed from the Universe will find suitable partners to form molecules in whatever they choose. This is real re-incarnation, afaic.
I am not worried about an afterlife, I can't see any evidence it can exist, and I cannot return care and concern to those who cared about me from some place in Heaven because that don't exist either. But they'll all enjoy the dough I left behind, oh yeah, but maybe comlain I was an odd man, a loner, strange, and happily send my diary and all my house contents straight to the rubbish tip. In don't put any grandiose value on myself, I am just a nondescript bloke with fast approaching use by date. I live in a city where there is virtually not the slightest community spirit, although there are good paid services and carers for those who need it. I ain't needy. I am not close to anyone in my street of suburb, ppl here avoid close contact, its a liability, they only involve with their families, ppl at work.
I have maybe 3 friends here, I see them maybe once a month.
All is cool, I had a nice cycle ride around today, got some parts for a project in my shed, got some success getting bugs out of something I made, and had a nice lunch, and talked to nobody, a typical day. I love reading about other folks experiences with life, and the problems they have, because it makes me wiser. Whatever life is, it just is what it is, I don't feel any huge need to change it, apart from prolonging it.
Stay calm, and happy, and may the wind be from behind in your journey,
I have been on Lupron, Zytiga and Prednisone for almost 8 years. I had shadows in lung, liver and kidney with Mets in skull, neck, shoulder, ribs and spine. Only visible in neck, shoulder and spine now. I had quite a bit of bone pain when I started but it went away in the first 6 months. Stay as active as possible and stay positive. I have typical side effects of bone loss, muscle loss, increased blood pressure, low potassium, low low magnesium, etc. but generally a good quality of life.
I really liked that you started your post with “very encouraging!” Screw the statistics! Screw the limited study results! You are a sample group of one. Keep doing the things you enjoy and that bring you happiness and fulfillment.
Like TommyTV my PCa is a step down from yours, but still Stage 4 at Dx in 2015. Gleason 7(4+3), cancer in all 12 biopsy cores, and one pelvic bone tumor. I’ve been on ADT w/Lupron and Bicalutamide for 3+ years, and had 6 cycle course of docetaxel 11/17-03/18. PSA undetectable for 3+ years, and the 1 pubic bone tumor that lit up the scan like a bright star 3 years ago went “dormant” 2 years ago and hasn’t showed up since (“interval resolution”). Zero bone pain-ever. So I’ve been blessed. Yes, there are some unpleasant side effects from the drugs and the chemo, but all in all, not so bad. I still golf (badly) 2-3 times a week. 🏌️⛳️😎
I am fortunate to have a good support system...my wife & family, friend & golf buddies, and my church. But even with all of them, it still comes down to my own personal attitude. That’s internal, not something someone else can instill in you. I figure I can choose to either wallow in my misery, in which case I’ve already lost the battle, or deal with it positively, fight the beast inside me, count my blessings, and let the endorphins flow. I choose the latter. Hope you do the same. Best wishes to you!
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