A couple of months ago, I was asked if my PSA results were accurate, as I was quoting from memory, and it was 6 years ago. Anyway, today I got a definitive answer from my Oncologist, and I think they make interesting reading.
First PSA test at doctors 12/11/2011 PSA 443.9
First PSA test at Oncology Clinic 17/11/2011 PSA 571.4
4 weeks after starting STAMPEDE trial (23/1/2012) 23/2/2012 PSA 000.2
12 weeks after starting STAMPEDE trail 20/4/2012 PSA immeasurable
That's where it has stayed for the last 6 years.
Those results are quite remarkable I'm given to understand.
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TommyTV
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That is excellent. Mine went from 227 to undetectable. But started to rise slowly after only 18 months! 6 years is great! Congratulations! And thanks for sharing
James
Very interesting, they are incredible. Thanks for posting.
Tommy, that is remarkable. Are you on any medications to maintain your undetectable PSA or has it stayed there without additional treatments?
All I’ve taken from day 1 is a Zoladex implant every 3 months, and daily 1000mg Abiraterone and 5mg Prednisone. I take Lanzoplazole to protect my stomach too. No diet change, no supplements, just me and a couple of pints of lager twice a week.
I’ve been given to understand that these results are rather special. I have photos of a couple of the results which I took yesterday, but can’t see any way to post them.
As I’m in the STAMPEDE trial, there are no plans to take me off the regime. I think cured or remission are the wrong terms. It’s kind of like it’s become chronic instead of terminal. I know in my heart that it’s still terminal, but I’m giving it my best shot.
When I see other patients at my oncology clinic who are not on this trial, I feel I’ve been blessed. I sometimes think “why me?”. I was really ill before diagnosis due to the Mets in my legs and pelvis. The ones in my ribs, shoulder and skull were less of a problem. All my pain has gone. But, and it’s a medium but, I am now disabled due to the damage to my femurs, and the muscle wastage from no testosterone particularly in my thighs. Walking and standing is a real problem, but so what, it’s a small price to pay.
I don’t know why I’ve responded so well. It might be my DNA, or blood type, who knows. All I can say is I hope the results of this trial can match treatment to DNA and genetic markers to benefit others in the future.
Tommy, there's a gentleman on this site who was stage 4 with bone mets 14 years ago. He has been off ALL meds for 7 years and he is now working on restoring his testosterone levels. Cures used to be thought impossible for stage 4 but things are changing. Good luck to you.
That's great news. Keep beating the Bastard. I'm on same treatment but only 5 months in. My psa is .003 . How are your side effects after all this time. All the best Jon
Side effects were a killer at first, but I knew what to expect. Hot flashes, bad, but short lived depression, weight gain, muscle wastage, total impotence, tearfulness. All of these I experienced for the first 3 or 4 years. Depression was the worst. I’ve never experienced that in my life, but it’s really bad news. Thankfully it only lasted a couple of days at a time, about once every couple of months. I still get it from time to time, but to a much lesser extent, maybe one day every three months. I’m still getting very slight hot flashes, and any exertion brings on copious sweating.
The single biggest effect has been mobility. Due to the total lack of testosterone, I’ve suffered severe muscle wastage, particularly in my thighs, which has left me quite disabled. I can’t stand for any length of time, and walking has become very difficult. Both my femurs are damaged anyway from large Mets. I have tried Physio, but without success. But in all honesty, it doesn’t bother me at all. It’s a very small price to pay.
I don’t dwell on my condition. I still work, and I have a very positive attitude which is paramount in this fight. Stay positive, and read the Desiderata once a month!
Thanks for Reply TommyTV and sharing your journey . I still think i'm in shock after 5 months. Yeah side effects suck but learning to deal with this. I'm gonna keep on living . I am lucky have a great wife for support . Just booked trip to England and Ireland to visit relatives and have a few pints. Gonna keep setting goals and enjoy my life and fight. Was having a dark day but reading your post has cheered me up. Thanks Again
If your coming to the North West of England, we live just south of Manchester, a town called Stockport, which is famous for not a lot. Fred Perry came from here, and that’s about it. As they say, a nice place to come from, but not to go to😂.
If you are coming this way, it would be great to meet up.
Yes indeed yours are amazing results, makes us "minor miracle" folk look forward to the future. Even if you are bit religious ,keep the faith ,my brother that you are indeed a walking miracle. Mind if I follow you?
Dan in So Cal..Dx with PSA 72 in 2012 with 4 bone mets, Stage 4 , Gl 7. On Zytiga for 38 months PSA undetectable for 37 months.
No idea. Although my DNA has been taken twice, I’ve not bothered to request any info. I’m still here enjoying life, off on a cruise in October. Insurance (as ever) expensive, but we have a specialist insurer in the U.K. who are really good.
Onwards and upwards!
Thanks for posting this. I'm in the middle of doing a stampede protocol with generic zytiga, LUPRON and salvage IMRT. Seems to be going well so far. I'll be happy if I get only a fraction of your success.
Hi. I’ve had no breaks at all, continuously on Zytiga, Predisolone and Zoladex. After a couple of falls, one of which hairline fractured my pelvis, and a broken rib from asking my wife to give me a kiss whilst in bed, I decided to go for a bone density scan. I’m now just on the edge of Osteoporosis. Much worse than all this though was my wife of 52 years being diagnosed with stage 4 small cell lung cancer 4 months ago. Broke my heart.
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