Interesting PSA progression on STAMPEDE Zytiga (Abiraterone) trial.

[TommyTV]

Hi All

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.

[JamesAtlanta]

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

[Hidden]

Very interesting, they are incredible. Thanks for posting.

[Hidden]

Tommy, that is remarkable. Are you on any medications to maintain your undetectable PSA or has it stayed there without additional treatments?

[TommyTV in reply to Hidden]

Hi Dale339

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.

[Hidden in reply to TommyTV]

Do they ever plan to wean you off to see if you are cured or if your cancer stays in remission?

[TommyTV in reply to Hidden]

Hi dale339

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.

I really don’t know what else to say.

[Hidden in reply to TommyTV]

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.

PS

Life is terminal. None of us get out alive. 😉

[Jbooml in reply to TommyTV]

I was wondering if anything besides your remarkable lapse in PSA that stands out from your blood testing...just curious..

I take it you're near fanatical about maintaining your mes regimen?

Thanks

PS ...you're the envy of all...certainly me.

[Dan59]

Tommy, those numbers are among the best I have seen, IMO that bodes extremely well prognostically going forward ,enjoy every day!

Dan

[TommyTV]

Thank you Nalakrats.

I’m not religious in any way at all, but I feel blessed.

[jkholmes]

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

[TommyTV in reply to jkholmes]

Hi Jkholmes

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!

[jkholmes in reply to TommyTV]

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

[TommyTV in reply to jkholmes]

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.

Cheers

Martin

[Wings-of-Eagles]

TommyTV

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.

[j-o-h-n]

Fist Bump=====>TommyTV<=====Fist Bump.

Good Luck and Good Health.

j-o-h-n Saturday 02/17/2018 12:16 PM EST

[karlsiller in reply to j-o-h-n]

👊

[TommyTV]

As this post is from a year ago, an update is in order.

PSA still immeasurable and feeling great. No meds changes, although I’ve added statins in as other posts suggest it’s a good idea.

No diet changes, no alternative therapies or special diets. Guess I’m just the lucky one😃.

[GeorgeGlass in reply to TommyTV]

Has there been anything saying certain genes or blood type respond better to Zytiga?

[TommyTV in reply to GeorgeGlass]

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!

[Hidden]

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.

[Rod98168]

Have you been Zytiga continually all these years without any breaks?

[TommyTV in reply to Rod98168]

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.