I have been told that the 2nd generation drugs (Zytiga, Xtandi & appaludamide) might only be effective for maybe 3 years.
Is this true?
Thank you for your opinion. Chris
How long are the 2nd generation drugs... - Advanced Prostate...
How long are the 2nd generation drugs effective for? (2nd generation drugs I.e. Zytiga, Xtandi, appaludamide)
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Christopherg
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Everyone responds differently to different drugs. I got 5 years from casodex and 3 1/2 xtandi and zytiga.
Lucky bugger 
Hi Magnus,
Were you on Cassodex ONLY?
Well done to you and keep up the good fight.
Warm wishes and good health. Chris
For the 5 years I was on casodex, yes I was only on casodex + prednisone.
I agree with Magnus. He is living example of the fact that every one is different and second generation drugs can remain effective from 2 years to over 10 years.
And during that period, new treatments might come and thus prolonging life by many more years.
But I would like to state that in the mean time we need to keep our general health good and immune system working by good nutrition, antioxidant herbs, regular physical exercise and keeping our BMI below 24 along with stress busting tecniques like relaxation and meditation etc
People can live anywhere from 2 yrs to 10 or more years if cancer is handled in proper way.
"If cancer is handled the proper way"-----could you please elaborate ??
Thank you.
Your Gleason score has a lot to do with your survival time once you move into Stage 4 territory.. As a G-9, Zytiga worked well for 2 years. Then Xtandi gave me another year keeping my PSA under 10. Then chemo, 2 more years..Now, 10 years out from original diagnosis, my PSA is 700 and I'm in a clinical trial fighting the last battle ?? Who knows ?
Well done to you Fairwind.
You are for sure a fighter and keep going.
Thank you for sharing your experience.
I wish you another 50 years of good living.
All best wishes and good health. Chris
What trial are you on?
Hey Fairwind,
I wish you the best. Have you seen the Dr. Klotz video? Who knows for who and for how long. Stabilizing those numbers is better than nothing. Start at the 14 minute mark. The rest is very good too.
Look at Dr. Klotz's history before denigrating this. It is a maybe. A maybe is better than a no.
You know about Dr. Charles, "Snuffy" Meyers don't you?
There are "things in the "works". Stick around for a while.
Currumpaw
It depends on whether you are detectably metastatic or not, and whether you are hormone sensitive or castration resistant.
I am metastatic and also hormone sensitive.
Can you advise?
Thank you so much. Chris
The median radiographic progression-free survival (rPFS) has not been reached after about 3 years of follow up for Xtandi and Zytiga (STAMPEDE) and about 2 years of f/u for Erleada. Zytiga median rPFS was 33 months in the LATITUDE trial (patients were more progressed than in STAMPEDE at start).
I have been on Zytiga for two and a half year. Sadly it’s beginning to were off.
I’m just approaching 8 years on Zytiga. Still working well in combination with Zoladex. Current PSA immeasurable from a dx of 570, multiple large bone Mets, but Gleason 7 (4+3).
FANTASTIC....well done to you.
in reply to TommyTV
Tommy TV
Great News.
Why Zoladex versus Lupron?
I too have bone mets - only on Lupron now.
Not sure I can afford Zytiga.
Thanks
The effects of Zytiga, Xtandi, Cosadex etc vary widely. I've been on ADT since 2010, after diagnosis of inoperable Gleason 9 in 2009.
Cosadex gave me 6 months Psa suppression, but PsMa scans showed mets grew while on this drug. Same thing happened with Zytiga, but I got 8 mths Psa suppression, which I recall is mean time anyone is likely to get.
When Zytiga failed I had countless soft tissue and bone mets, but small.
Then 5 x chemo shots failed with continuing ADT, but LU177 seems to have killed many mets and no new ones or bigger ones appeared in scans. I started Xtandi after No 3 shot of Lu177, and Psa at beginning of Lu177 was 25 last Nov 1, and now its 0.4, and I have ZERO idea if Psa will keep falling.
Average time for Lu177 effectiveness is about 14 months, so this time next year I could expect Psa to rise, but docs say I might be able to get more Lu177 when that happens and maybe get 4 years more survival time.
But today I cycled 59km across my town, age 72, average speed 22.5kph. Not as fast as last year. Nobody my age overtook me.
I am bit of a fitness freak and I don't think that sitting on your bum all day gets you anywhere. But while seated, I do like typing to all you good people.
Patrick Turner.
Hi Patrick I was very interested and pleased to see your comment regarding LU177 effectiveness. I recently completed my sixth infusion of LU177 as part of the Vision trial.
Thus far I have been unable to get a straight answer from MD Andersen as well as Moffitt as to what I might expect moving forward.
Do you mind sharing what or who leads you to believe LU 177 will last 14 months?
I hope you are right.
Dennis
Hi pinejogave,
Your Psa results and PsMa scans during and after Lu177 infusions should be a guide to success for Lu177.
From what I have read by German researches who pioneered Lu177, and from info recently released by Professor Hoffman at Peter Mac in Melbourne, 14 months benefit is mean time. I don't know if that's for all patients who are found to be suitable for Lu177, or only for those who get a benefit. Some get no benefit at all so there's no point in continuing if Psa rises high and scans show no good result.
Standard treatment here by Theranostics Australia is 4 infusions. I was not aware trials gave more than 4.
But after 6 infusions, and with follow up PsMa scans and Psa tests, it would be impossible for your doctors to not know whether your treatment has been beneficial or not.
Hoffman has said that Psa may rise after a year or more, and when it does, additional Lu177 may be used, and usually it is effective again, and give more time, and thus extend overall survival by 3.5 years. Its a bit difficult to understand his trial results but many of his patients in trial had far more Pca than I did, with Psa > 200 in many at start, wheras my Psa was only 25. In other words, I was more likely to get a benefit with only 4 infusions because there was less cancer to kill.
I found I just could not sit around thinking that miracles might occur. I felt I needed to act asap, and the trend in Germany has been to get men to have Lu177 earlier rather than later.
Hoffman is now trialling Lu177 use as primary treatment, and he may well get excellent results to reduce Pca right at the start of Pca, and maybe stop the mets forming. I would have been a good candidate for this back in 2009 when diagnosed with a Gleason 9 and 9/9 positive biopsy samples.
I was inoperable, and all they had for me was EBRT or BT and these things rarely ever work with Gleason 9 or 10, and they didn't. But there was no Lu177 in 2009.
So now Hoffman is trialling "lutectomy" which is where Lu177 is used to kill the Pca in PG rather than rely on RP or RT.
The only reason I had a horrid diagnosis of Gleason 9 was that my Psa was under 6. I'd had yearly Psa tests, but docs do not recommend action until Psa hits 5. Threshold for action should always be 3, which for me would have been in 2004 and I bet a Gleason 5 may have been found, and RP might have worked well, and no spread would have occurred, no ADT and all the other horrid treatments needed. One man emailed me about 5 years ago to say his doc told him to get biopsy when Psa was 2.5. But the time he got it, Psa ws 2.8, and Gleason 5 was found, and RP did good.
Men should be able to have their PG removed even though there is no Pca to be found, and most certainly if there is Pca in the family. But many men seem to think they just won't get anything that challenges their health.
Patrick Turner.
I enjoy reading your posts while I'm sitting on my bum....
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 10/01/2019 5:50 PM DST
And while sitting on your bum, are you aware you are sitting on Puff the Magic Prostate Grenade? Is yours slowing exploding like mine? I could not stay seated, and was forced to quickly cycle across town to see some doctors.
They huffed and they puffed, and tried to blow Puff away. Conventional ADT bombing didn't work, and chemical bombs didn't, and war escalated to using tactical nuclear weapons, aka Aunty Lutetia, who has Alpha particle guns hidden in her bra. She's sent in to gatecrash Pca parties are raging and they like what they see, a good lookin' sheila, so "C'mon in, have a drink" They Pca varmints scuttle for their lives when she pulls out the pistols and blasts away...…… She nearly gets all of them. "I'll be back" and yes, in 2 months the Pca forgot who she was, and let her into party again, and gives them all that deathly feeling that they are kaput.
Patrick Turner.
Very amusing....
Thank goodness I lost mine to Julia Gillard in a poker game...
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 10/01/2019 8:09 PM DST
Do you, j-o-h-n, insist that you lost your bum to the first female Prime Minister of Australia in a card game? I was not aware she ever played cards with anyone because like all Polly Tichanz they play their cards all the time while the press is too dumb to figure out what these cards might be. And I'm a bit on the dumb side about Polly Tix so I must have missed the occasion when she became a bum up after playing you.
Did that include a slightly used & diseased Prostate Grenade?
Now had you played the kinda card game Germaine Greer plays with blokes, she'd maybe not have accepted a wager by you on gambling on your arse + PG, regardless of its condition, good or bad. She is a wise old lady, but somewhat allergic to anything male. However, you might have wagered on a sample of her bone marrow, and there's a clinic in Sydney that has her samples cloned up, to make todays snow-flake feminists very stern and even tardy when encountering men who de-power females. But when a man gets a sample of her bone marrow, POOF, Pca gone in 10 minutes, but the man then has long term side effect of becoming a grumpy old shiela. Serves him right IMHO. I am rather at a loss to give answers of what cures Pca when Aunty Lutetia has done her utmost to shoot all the Pca cells. It may seem that all therapy becomes a bit experimental, with less than 50 % efficacy, so a man could try several strong chemo or PARP things and find he does not get a fix. I wish I could be more cheerful about all this. I get a little cranky some days, and the only thought than comes to mind is "better go for a bloomin cycle ride", and anywhere will do. Or "better get to shed to fiddle around with old analog electronics."
I do not feel sitting sadly at home is good for anyone.
Please don't worry, be happy,
Patrick Turner.
It was strip poker....
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 10/06/2019 4:15 PM DST
Well that may not have ended well. Our Dear Julia Gillard was quite a good prime minister, and quite used to games of strip poker to get compromise deals to please most of the ppl most of the time.
But she wore cast iron underpants and bra with locks and she left the keys at home. So if anyone was to lose a bum or be made to look ridiculous while naked, then it was never ever going to be her. It was always the guys who tried to pull her down that convinced most of us how stupid they were, and to be sure, some are getting around with having a bum. Tony Ahbutt is an example.
Everyone going OK, despite troubles?
I hope things are good, and I'm enjoying the spring weather.
Patrick Turner.
"cast iron underpants and bra"
Unfortunately for her 'RUST NEVER SLEEPS'........
Enjoy Spring while it lasts.....
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 10/06/2019 6:57 PM DST
in reply to Patrick-Turner
How did you get LU 177
Patrick-Turner in reply to
I'm in Australia where Theranostics Australia has been providing a range of nuclide therapy for a variety of cancers since 2015. When chemo fails here you are allowed to buy what you like, including Lu177, even though its not fully approved. But in US it seems its still only available in trials. But quite a few men in US have gone to Germany where its easily available. Some have gone to India or South Africa.
Here it costs usd $ 26,000 approx, plus costs pf Skype calls to docs, plus PsMa scans at about usd $480. When I got my Lu177 in Sydney, there were other men from US there who flew over from US. TA have outlets at Perth, Brisbane and Sydney, and have administration by Genesis Care. You can google all that easily. Patients wanting Lu177 must have PsMa PET/CT scan before initial skype consult so that docs can see of you are likely to get a positive outcome from Lu177. And sometimes the PsMa scan may show the positive outcome is likely, but does not happen. TA said they had a 70% success rate. I assume that means a man gets the mean 14months of extra survival time. Some get less, but many get more. The rate of success was much better than for chemo with me, where Psa quadrupled after 4 infusions.
But after 5 chemo shots, I quit to wait a month before Lu177 began, and Psa halved from 50 to 25, and nobody knew why that happened. I still went ahead with Lu177. One doc supervising my 3rd Lu177 told be to get Xtandi asap because it makes kill rate higher for Lu177. She said the chemo makes Pca become re-sensitized to agents like Xtandi or Zytiga.
So my Psa before Lu177 was 25 last Nov and was 0.4 a few weeks back, but has been steadily falling since ending Lu177 therapy. I am continuing with Xtandi and ADT.
After doing little last winter, I began cycling again 8 weeks back and did 59km cycle ride yesterday, av speed 22.5kph, and age 72, and no pains caused by any Pca so I look forward to another good summer.
I can get more Lu177 if Psa rises.
There are trials of Lu177 combined with Xtandi and other things going on here but I guess they may be only available to local residents. I heard of one US man who stayed in Sydney for 25 weeks to get his Lu177 treatments. But Sydney rents are quite high, but if someone has the money...…. all things are possible.
Patrick Turner.
Thank you Patrick....I need to step up my exercise program.
All best wishes and good health to you. Chris
I began ADT in 2010, and its been continuous since then apart from 2 small breaks when Psa immediately rose fast, so I could not have intermittent ADT.
So in effect, I had to live life as a neutered man, but that didn't stop me wanting to stay fit and last year docs at hospital said I was the fittest stage 4 cancer patient they'd ever seen. In 2017 I cycled faster than men my age who had never had any cancer or treatments. But without my bike I would have weakened and felt bad, so the bike works for me. I hate walking because I broke an ankle at age 19, and its now painful after walking a little, so another reason to avoid all long walks and just ride a bike instead. On the bike, the ankle does not hurt. But for anyone with legs in good condition then walking is extremely beneficial. Its better then going to a gym where its like being in a torture center. When you walk around outside, its natural, you are free, and you should feel better emotionally, and physically. Many ppl have far more trouble dealing with their weight than I ever had, but once I was 102Kg after not cycling anywhere for 12 years due to bad knees. I found walking very difficult. But I had double knee arthroscopy in early 2005, and that worked so well I could cycle again in 2006, and weight went down to 83Kg in 6 months. But that was before Pca and ADT, and with full testosterone its easier to lose weight, and I was under 60. I'm now 84Kg, and I must be real careful to not eat too much, and muscle to fat ratio has got a bit worse since 2007 when I has cycling very well at 60.
I like being able to ride a lot, and its always makes me feel good after, alert, positive, never lethargic in the day. And I like my friends.
Its another fabulous spring day here, and I'll ride a bit soon, maybe 20km to an Italian café across town for lunch, its a real nice ride.
Gee, I need to get into my lycra and get away, its 11 am already.....
Take care my man,
Patrick Turner.
Patrick...you are an inspiration....and so right. Thank you. Chris
Chris, I don’t know the answer to your question but I have been on Xtandi now for 34 months and it’s working fine. PSA is <0.05.
very encouraging to hear this....thank you Larry. Long may the good news continue. All good wishes, Chris
Based on what I've seen here on the forum, the median statistics are almost useless as individual experiences range from no meaningful response to 8+ years undetectable. For me, I try to look beyond the statistics...
For example, your immune system may be able to kill some of your cancer, depending on how strong your immune system is and whether your cancer has evolved to avoid your immune system. When something like Zytiga works well and for several years, the effects of diet, exercise, and immune function become magnified and work with the treatment to keep the cancer under control.
This is just a theory of mine based on lots of reading. But (and this is the important point), this theory moves my focus from the statistics to the things I can do like eating more broccoli and running more miles that just might improve both the quality and length of my life.
I’m a G9, Stage 4, that was my original dx. I’ve been on Lupron since day 1 together with Casodex which was switched to Xtandi over 4 years ago, I am still castrate sensitive with an undetectable PSA.
Important to note that I also had my prostate and several nodes radiated early on as well as chemo per CHAARTED. Perhaps this has something to do with the effectiveness of Xtandi.
I know that the Xtandi can stop working at anytime but I’m hoping for a good long run. Even then there are a couple of strategies that I can try to resensitize Xtandi before moving on to the next therapy. Everyone is different and responses vary.
Ed
Hi EdBar,
Do you have any side effects with Xtandi? So glad you are still truckin. Best wishes, Chris
Thanks Chris, ya definitely SEs with Xtandi - fatigue, cognitive issues, headaches, etc. Could be from Xtandi or combo of Xtandi/Lupron. Exercise helps, I take Celebrex for headaches and joint pain which works well. I like to think of them as significant but tolerable side effects.
Ed
Hi EdBar, Thank you for sharing and I admire your positive and happy attitude. All good health to you. Best wishes, Chris
I was initially diagnosed in 2007 at age 68, Gleason 6, and had brachytherapy (radioactive seeds). PSA dropped from 5 to .021 over a 4 year period and then started rising slowly at first, then more rapidly to 34 in 2017. Multiple biopsies and scans failed to locate the cancer until 2017 when mets in the sacrum were seen. Casodex was started and reduced the PSA to 8 before Lupron was started and the PSA was down to 3 when Zytiga was started. Scans at that time showed extensive bone mets in the spine. Zytiga reduced the PSA to 0.33 in about six months but then the PSA began to rise again and Zytiga was discontinued after a year. Very disappointing. I had Provenge treatment in April of this year but the PSA is back up to 3 at this point. I have felt pretty well for this entire period except for the months that preceded the Lupron and Zytiga. Side effects throughout have been minimal and quite tolerable.
G9 and stage 4, been on Lupron for almost six years.
Very encouraging and long may it last. Warm wishes and good health. Chris
Xtandi 25 months. 0.1 psa. (Dr. said is actually <0.1 but they only measure to 0.1) Extensive bone mets appear to be stable in July scan. Hang in there. Hopefully there are more than "me too" drugs on the horizon.
Drugs coming quickly down the pipes. All best wishes, Chris
Hi Christopherg,
Do not worry, in three years you will have new effective medicines.
Do you know the story of Mr Ralph S. ? (from google: In 2009, at the age of 75, Mr Ralph S. was diagnosed with prostate cancer..... his doctors "just kind of left it alone", according to Stuart`s wife. ... By the time... the cancer had become difficult to deal with. It spread to additional sites and was now stage 4. Standard therapies were no longer an option..... He had recently launched a phase 2 clinical trial, know as "CheckMate 650", for men with metastatic prostate cancer that is resistant to hormonal therapy. The study combined two immune system-boosting drugs: ipilimumab (Yervoy) and nivolumab (Opdivo). The trial is currently open at five institutions in USA , four in France and soon in Poland (not yet recruiting)...... Levels less than 0,05 are considered "disease that is below the level of detection" , (dr) Patnik said, suggesting a potential cure for Ralph S.
G8 and Grade 4. Been detected with MPC just 19 months. Been through Casodex, Eligard 45 mg, Docetaxel, Lu-177 and Abiraterone. ALL dismal failures.
The two left are Cabazitaxel and Enzalutamide, both likely in my view to be failures as well. Immunotherapy will not work for me and a combination of Lu-177 + Ac225 will create greater bone marrow problems for me along with xerostomia. Nice situation.
Cheers and enjoy life !!!
I am very grateful for your kind, informative and encouraging replies and suggestions.
These have given me points to discuss with my oncologist and plan for treatment with 2nd generation drugs.
All best wishes and good health to you and your families. Chris
My husband had prostate cancer in 1999. they did radiation at Loma Linda. He was okay after that until about two years ago. He was having urinary problems and when they roto-rooted, they tested the tissue and it had a gleason 9 score. He had not metastasized so in August they started Lupron. IN January, his PSA was down but it rose in February and they found bone mets. He started Xtandi along with the Lupron. A month later still more bone mets. They decided to do chemo so in July he started Chemo. In January all the chemo had done was stableize. He stopped chemo because he was too tired. A couple months later the PSA started rising significantly. They started Zytiga with prednisone, but it didn't work either. PSA continued to rise. They were going to start Radium, but by the time they called to schedule, he was too weak and chose not to treat. He passed away about a week ago.
The treatment for radiation he had at Loma Linda stopped the cancer for 20 years, but he had negative affects from the radiation for many years.
He was living a good life before they started treating this last time, but the minute he started Lupron, his quality of life went way down. As they added more treatments, his quality of life went down more till all he did was sit in front of his computer all day or sleep. His last year was not a good one as he did not go anywhere except to doctor appts. My feeling is that if he had not had any treatment, he would have had a few more good months before his symptoms caused him to do less. He might have died sooner, but been healthier and happier longer. Each person has to make their own choice, but I feel he would have been better off not treating.
Dear Jobeth,
I am so very sorry to hear of your dear husband's passing.
It is a enormous loss to you, your family and all that knew him.
He must have been a most wonderful man to have you as his wife and partner to fight the good fight for so many years.
Thanks to God that he did have 2 decades to enjoy his life with you.
I am sure you have many happy memories of your life together.
God bless. Chris
hello Chris...I am a prostate cancer survivor.. Diagnosed with Stage 4 in January 2012 with a presenting PSA of 509...and a Gleason Score of 4+3=7...In March 2012 I commenced the stampede drug trials programme using a combination of Abiratetone (Zytiga) and Prostap (hormone injection). After six months of this treatment my PSA was reduced to less than 0.1 where it as remained until this day..almost 8 years ago...I think that answers your question...
Congratulations and thank you for sharing your amazingly great news. Long may your good health continue....all best wishes, Chris
I have read that some men have been on it successfully for 6 + years
It’s just so different for everyone. Xtandi only lasted 4 months for my husband.
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