Time To failure

[gusgold]

I think the guys who have had success with Lupron therapy remaining effective for years are worth examining...what is the common denominator...so far I have talked to 53 long term Lupron survivors and the following protocol keeps coming up as a common denominator.....Lupron, Avodart, Metformin, Arimidex, Dostinex, Lycopene, Pomegranite, Pterostilbene, Vitamin D3, Boron, Selenium, Vitamin K2, Tocotrienols, Tart Cherry Juice Extract, ZMA, and 5-Loxin.

[Hidden]

Gus, what do you consider long term survival? And how do you rate the effectiveness of the Lupron? When my PSA continued to rise, I started Lupron full time, and added Zytiga. My PSA continues to drop, but, from what? I'm sure it's the Zytiga, so why still take the Lupron? I'm on Lupron for 6 1/2 years. I just started Zytiga three months ago. Just curious.

Joe

[gusgold in reply to Hidden]

Joe..I define long term as 5 years...my understanding is when PSA rises while on Lupron they add Zytiga but keep the Lupron because not all the PCa cells are resistant to Lupron

[Hidden in reply to gusgold]

Gusgold - Strictly speaking, Lupron acts on the pituitary, not on prostate cells, so prostate cells cant be resistant to Lupron. The "resistant to Lupron" phrase could be replaced by "able to be active in a low testosterone environment".

I say this because I think Lupron should not be given if testosterone levels are already at castrate levels. It's too mechanical or even mindless.

[Hidden in reply to Hidden]

Curious as to whether you get your testosterone levels checked. And curious as to whether they think your testosterone levels would rise if Lupron be stopped.

[Hidden in reply to Hidden]

I had my prior uro always check it, but hadn't had it checked recently. While my PSA would fluctuate a bit, my T would always be low. I'm going to have it checked regularly from now on. I can say that the Zytiga kicked some ass on those nasty cancer critters. After quickly doubling, I was at 28. Not quite three months on it, my PSA is 1.23. On a side note, a few years ago, my primary called me in quite a stir.(best I can describe it) He says, "there's a problem with your T, it's low". So I say OK. He says, "You don't understand It's like non existent, it's like zero". I say, OK? "It's supposed to be, I'm on ADT". I now have a different primary physician, and she's great!

[Wings-of-Eagles]

GUS,

Interesting, I'm thinking some of your subjects were Snuffy Myers patients? Good study you are doing , keep it up. All that kind of info is good.

Joe-Kam

I have a similar experience to you, Lupron for two years until ,ineffective, Zytiga for the past two years, PSA dropped to undetectable for past 2 yrs!! Currently on Lupron Vacation for past 9 months.

Dx 2012 , PSA was 71,Stage IV, Gl 3+3 and 4+3, with four bone mets detected

[Hidden in reply to Wings-of-Eagles]

My situation is very similar to yours. Dx 2015. Hope I do as well.

No docetaxel for you? You thinking of Provenge? Radium223?

Re homone treatement: You started abi "post nadir"? How low was your PSA? 0.5 nadir? You are now off Lupron... are you monitoring testosterone levels? What has happened to them while "on vacation".

[Pennysue1 in reply to Hidden]

My husband is on zytiga- pill form - it's working - but be aware of the cost - we are on Medicare - cost is $8400 a yr -for zytiga for my husband - good luck

Penny & Mike

[bluepacifica]

I have written my husband's story before so I apologize for repeating. My husband was diagnosed in 2004, Gleason 9 or 10, psa 16.9, cancer outside the gland and in the tailbone. He was young, 55 and in otherwise good health. All his tests were wrong, showed cancer contained in the gland so they were to perform robotic surgery. When the surgeon saw the cancer outside the gland, he did traditional surgery and did a lot of scraping! His surgery was Dec. 29, 2004 and he got his first Lupron shot February 2005. He then started 7 weeks of radiation. He was also given Casodex that March. (he stayed on Casodex for 2 years. In 2006 he got a year of monthly Zometa infusions and has remained on Lupron without a break. His psa remains 0.01 and leads a relatively normal life. He takes no supplements and his diet is less than optimum. He's a picky eater, too. He's 5'10" and 125 pounds, he's always been thin. His urologist is fine with his weight. We moved to Kauai in Dec. 2014 where life is simple and relaxing. Many days are spent at the beach. He collects shells and makes jewelry. He's also taken up painting again. His urologist is thrilled with how he's doing and recommends we change nothing. So, Les gets his Lupron shot every 6 months. He's on no other medications.

[AlanMeyer in reply to bluepacifica]

I'm glad that things are going well for the two of you. I know a guy who has been on Lupron for 17 years with a similar low PSA. He's still going strong and for all we know, he'll do 17 more. There are other guys who have done very well. Getting prostate cancer is an unlucky thing, but some patients, like your husband, seem to have highly hormone sensitive cancers that can be held in check indefinitely with simple hormone therapy. So it wasn't all bad luck.

May you both have a long, happy and peaceful life in Kauai.

Alan

[Hidden]

I agree. That is a very interesting subset.

The first thing I'd like to know is did they all get to 0 PSA and what was the starting testosterone level? (I think it would be so helpful to see the graph of the decline of both the PSA and the testosterone.) And the biopsy results. This is to understand the disease before treatment.

Are the 16 items listed things that all 53 were taking? Did you list the items in any order?

[gusgold in reply to Hidden]

Martin,

The 16 supplements are not listed in order of importance. You are obviously very well informed on PCa...most of the guys I interviewed have little understanding of PCa...I wanted to find a common denominator in the protocol of guys where Lupron remained effective for 5 years or longer so I limited the criteria to GS 7(4+3) and a rising PSA after primary treatment.

Gus

[Hidden in reply to gusgold]

These days, with the internet and all, one can appear to be fairly up on a subject if one has the reason to, and the time.

[Johnstonearch]

I have been on Lupron continuously for 17 years. I started with Stage IV metastatic, Gleason of 7 and 8 and PSA of 30 in 1999 at the age of 51. I have had three lapses with Cancer returning and PSA jumping up to 8 or so. I had radiation at the start and one additional time at one of the flare ups. I was on Ketoconazale with the Snuffmeister for 8 years with Lukine and the usual supplements. I am now at Duke Cancer Center still on Lupron, this time with Xtandi at a half dose due to tough side effects at full dose. (Full dose of 4 capsules a day) My PSA is now .07. I have fatigue and chronic pain but we treat that with Celebrex, Tramadol and Cymbalta along with exercise, stretching, Tai Chi and walking. I went through the Provenge protocal 18 months ago. I work half time and I am reasonably active. Take Care

[Hidden in reply to Johnstonearch]

17 years is awesome! Pain is bone pain?

Do you still have your prostate, or was the radiation to the prostate?

I take it the Provenge was kind of a non-event for you.

[Johnstonearch in reply to Hidden]

Yes bone pain but also osteoarthritis and degenerative disc disease.I believe that the lack of testosterone, the 57 sessions of High Beam radiation precipitated these other conditions. I had my entire cervical spine fused this year. I still walk my dog, play 9 holes of golf a few times a week, travel for my work and even have a girl friend. I lost my wife to a Glioblastoma last year, an incurable brain cancer. This is not an easy life but there are still many wonderful moments of humor, friendship and time in nature.

[Suziq150 in reply to Johnstonearch]

My husband has metastatic disease in his cervicle spine with stenosis and impingement spine

He did radiation to his c spine

Now has pain in neck and shoulder

Who did your surgery and did you have Mets in the spine

[Wings-of-Eagles in reply to Johnstonearch]

John,

Estatic to hear your story. That is real good news to someone like me, also Stage IV metastaic, PSA 71, Gl 6 and 7 since Dx 2012,( possibly since 2008) you have been through the mill and still coming out like a "rose". Keep keeping on my Brother in the battle!

Dan in So Cal

[Johnstonearch in reply to Wings-of-Eagles]

Thanx Dan, yeah it has been quite a long tough road. I lost my wife of 35 years in 2015 to a Glioblastoma and incurable brain tumor. Two years of 24/7 care taking almost killed me. But, I have turned over a new chapter now and still enjoy laughung, being with friends and spending time in nature. It is still worth living even with Cancer. I get out your way on business a few times a year. I am in the mountains of NC.

[pjoshea13]

Gus,

The 53 men - are they all metastatic cases? A lot of non-metastatic PCa has been treated with Lupron.

-Patrick

[gusgold in reply to pjoshea13]

Patrick,

I only included GS 7(4+3) or above with a rising PSA after primary treatment.

Gus

[JoelT]

We don't adequately study any of our long term survivors for any of our drugs. I have brought this up at the DOD and did convinence them to create an award mechanism to study these men. We did not fund anyone because the studies were not up to snuff. We are planning on revisiting this issue this February for review. By the way, I am 10 years and still castrate sensitive.

Joel

[John-carp in reply to JoelT]

Hi Joel,

I just met with my oncologist again yesterday and to hear that you are 10 years sensitive made my day....they predict 3 years to resistance....Do you mind if I ask your stage?

thanks John

[JoelT in reply to John-carp]

Hi John,

I was originally diagnosed in 2003 (age 50) with a PSA of 4.2 and a gleason of 3+4. Had laparoscopic surgery (precursor to robotic). Went 5 years when PSA rose to 88. We saw one positive lymph node on a scan, started intermittent ADT and continue to be hormone responsive. In addition I have been diagnosed and treated for 4 other primary cancers.

I will be going to the NCI the 2nd week of November to participate in a clinical trial using a PSMA contrast scan to see if we can find where the little buggers might be hiding out. Depending what is found I might choose to go after them aggressively with the hope of putting the cancer into a deep dark sleep for eternity. We'll see.

Joel

[JoelT in reply to John-carp]

Sorry, I said 2003 and I meant 2001

Joel

[John-carp in reply to JoelT]

Hi Joel

I read your post every week. You are an inspiration to me. They tell me castrate resistance in three years and to read your success gives me great hope. Thank you

[JoelT in reply to John-carp]

Hi John.

Thanks for the feedback.

Each of us is very different and along with the differences between our biology our cancers are also different. This means that there is never any way to predict how long any of us are for this world and how long any therapy will work for us.

I believe that it doesn't matter, that is as far as worrying about it in advance because there is no way for any of us to know. So, why worry? I have become fond of saying, "What will be will be."

Our jib is very straight forward, to learn as much as we can about our individual disease, use this information to make the best possible decision for our individual self and then go on and live our life for today. Yesterday is gone and no longer exists, so why look back? There is no good reason as far as I am concerned.

Joel

[wagscure259]

My oncologist at MSKcc In NYC Relates Several Men ( rare ) Stage IV On Lupron For DECADES ( WITH AN S ). Believes it is related to the DNA Mutation Type , But As Yet Unstudied . I'm 4 Years On Lupron After Initial Degaralex First Month . Gleason 9 5+4 . Pelvic Mets,Spinal Mets To T8 ( just below shoulder blade ) 45 Treatments IMRT . Fighting the beast daily !

[bluepacifica in reply to wagscure259]

What do you mean by "dna mutation type"? I had read something this spring which was in relation to why certain men live much longer with stage IV and not reaching castrate resistant stage, something about genes mutating and stopping aggressive cancer. I can't find the article now but you mentioned it! Could you expand or post a link to the study? Thanks so much. Joy

[Hidden]

I am also on Lupron, Avodart, Metformin and Dostinex.

I was on Casodex until it failed.

I switched to Nilutamide and my PSA returned to undetectable.

[gusgold]

Nal,

I give a lot of weight to Dr. Myers because he is on the front lines and is able to observe and measure a supplement/drug effectiveness on his patients. Myers says to take 2000 mg of Metformin ( 1000 mg twice a day with meals). Metformin causes digestive upset so Myers says to start with 500 mg and work up to 2000 mg over a 30 day time period. Myers says to avoid Pectasol-C...has not seen any results on his patients. For Honokiol I think the best deal is Swanson Vitamins Magnolia Extract standarized to 90% Honokiol at $6.99 for 30 caps 200mg. If you go to Retailmenot.com you can always find a Swanson Promo Code for 10 - 20% off plus free shipping. I figure 4 caps twice a day should be effective so you will need 8 bottles a month. Using the promo codes the 8 bottles would be around $49.00. I would rather spend my money on Pterostilbene taken with grape juice instead of Muscadine...most of the early studies on Muscadine were inconclusive.

Patrick says to avoid NAC like the plague because it blocks ROS in the cell. Most polyphenols, including Honokiol, generate ROS which can kill the cancer cell.

Gus