Advanced Prostate Cancer
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"no way to know if it's working"....Wow. Provenge

"no way to know if it's working"....Wow. Provenge

well...what an interesting day. I signed off to start the Xtandi this evening before bedtime...AND I signed off to start Provenge on Tuesday.

** Pic is my first time every for making Homemade chicken & dumplings. It was better (even) than it looked. I LOVE to cook (and eat).

While I was with the oncologist today I asked him "has anyone every gotten crazy fabulous results from Provenge?"

His response..."no, and there's no way to know if it's working. Your PSA won't get better ....your scans won't show anything...BUT, studies have shown that people who do it average a 3 month longer overall survival rate."

It's hard to imagine that I (and the others that do Provenge) would go through the process...it does not look like fun...for this kind of "results" that don't even show in any tests or scan? and I'm just wondering if 3 months before I'm gone...a bell will ring and my body will announce it's in the "bonus round" I bought by doing Provenge.....LOL.

This just struck me as funny. I have the entire 133,000.00 cost being covered by insurance and some kind of "grant fund"...but I know some people have/still do pay out of pocket...I cannot imagine it. Life keeps getting MORE and MORE interesting...

AND, inspite of what he said...I'm still hoping for a "miraculous" change in course with my Prostate Cancer...like, for once, a PSA under 1.0.....and bone scans that improve greatly.....I do like "seeing" some result.

Life is Beautiful

~~John

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All best wishes to you Great John. The dish looks delicious!!

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thanks...I've very "visual" and I wish more people had pictures of themselves...and what they do...to make them seem "more real". The dish, by the way, was like "going home" to my roots. I find myself contemplative a lot lately...about my childhood, my life, my accomplishments.

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You are a very generous, kind and compassionate person. And always cheer me up. Amazing attitude and sense of humour. Bless you.

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Hang in there, enjoy the leftovers! I’m praying for you!

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Got results from latest bone scan--06-06-2018. Good news==no new mets and existing mets not as active. Bad news====Bone degeneration in wrists and hands and all major joints. Been telling my friends my body has aged ten years this last year, guess I was right.

Doug

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Damn... at least there was good news...but the bone degeneration sounds scary. I think there's some drug to address it. Good luck.

--John

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Some people claim the Provenge took their PSA down, but I’ve read what you heard. It’s hard to always believe what people say, esp. on Facebook. This site is much better.

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Yes someone is making big bucks off the Provenge that's for sure. My husband went through it and what the people at the blood center told us is that they knew of no one who had it who had died. I was hoping to get some substantiation of that on this website but anyone who has passed would not be able to comment.

Good luck. It would have been a piece of cake for my husband if not for that stupid chest catheter they insisted upon inserting and that the procedure was interrupted by Hurricane Irma so we had to finish it in Minnesota.

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Yipes...bad timing. Hope his results are good. They told me when I went in for pre screening that my veins in both arms looked great...so,hopefully...no catheter. It seems like everything is a crap shoot.

John

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This link is to the package insert for Provenge. Look for "Figure 1 - Kaplan-Meier Overall Survival Curve for Study 1 " It shows how long in months each study participant vs. placebo participant survived during this clinical trial which provided evidence for the FDA approval of Provenge. Some died after only a few months after randomization into the trial. Where the data lines cross the 50% mark is where the "median Overall Survival" can be "eyeballed". Note, though, at the bottom right that there were about 1/7 of the participants who survived in excess of 4-5 years after getting their Provenge. Overall, the Provenge data curve shows those several months of extra survival separation over most of the full range of the curves.

fda.gov/downloads/Biologics...

I had Provenge in 2016 when my PSA was in the 80s and about 10 mets were still showing "hot" on a Ga-68 PSMA PET scan. It didn't change my PSA much, but it definitely seemed to "rev up" my immune responses, as evidenced by how I felt in the 2-3 days after each infusion. (It was somewhat comparable to when I got high-dose Interferon treatments over a decade ago in the context of unrelated melanoma.) I, too, followed Provenge with Xtandi, and it dropped my PSA quickly from 95 to 1.2.

Charles

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Thanks for the insight!

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I had Provenge in May 2017 and then the PSA began to rise in October. March PSA 11-May 2018 when I started XTandi. .8 PSA Wondering what steps to take next after going to Cancer Centers and MD Anderson. Lymph node shrunk some from scan in 2016 and the scan in 2018. Started Keto diet in March and have lost 25 pds.

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Does anybody had any experience having chemo as a proactive approach?

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Great looking dish there, John. If I did “back to my roots” cooking it would likely be what my mom called “tuna fish on toast” (SOS to you and me). Just as long as I have a microwave and a saucepan I won’t starve. Thank God my wife is a good cook!

I truly hope the Xtandi and Provenge help give you that long term miraculous change in the course of your PCa.

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Thank you a 1000 times...and smooth sailing to you!

John

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After two and a half years on zytiga, my psa was 1,000. We let it go up since the scans were good and no pain (nadir was .07) When the scan showed progression, I ask my doctor if we could try xtandi. She said no way. Only a ten percent chance of working. I had Provenge six months before this. After one year on xtandi ,my psa dropped 95% to 5. (During the abi to Enza trial only one person drop 90%.) I am hopefully giving credit to Provenge. The timing was right for provenge to have trained the T cells (6 months).Never had chemo. So maybe worth the money. Provenge seldom contacts people if they seem to had a good response.

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I think you meant joint degeneration , not bone degeneration. Not scary at at all. It means osteoarthritis or “aging”, common to anybody who worked hard or played hard.

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Don't know, Exact wording "Degenerative changes are seen involving the wrists and hands. Degenerative uptake in major joints". As for mets "Interval improvement of findings when compared to previous study,There is persistent but markedly diminished increased uptake involving right side if sacrum and right ischial. These correspond to regions of sclerosis on CT of pelvis from 8/29 17. --- Only very mild residual abnormal uptake in these locations-------No new evidence of new metastatic decease". So better for cancer, worse for joints through out rest of me. Still aged ten years in last 10 months.

Doug-AZ.

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I am currently being assessed via NM whole body scan for hip and knee replacements. Seems Zoladex after 4+ years has 'eaten' all the cartilage. Sort of rapid onset osteo. Guessing game now, will my joints take the work required or will I grind myself ever shorter? Of course the scan has also thrown up new bone tumours, only 5, not like the 40+ in 2024.

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Good luck...sending good vibes your way.

John

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Xtandi together with Provenge sounds promising! You’ll do great- and that dinner looks amazing. 👍

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Thanks!

John

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I’m sitting here reading while I wait an hour to eat (I just took my Zytiga). Wish I could have a bowl of your dumplings! They look delicious...and I’m starving.

Good luck with Provenge!

James

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Thanks James.

I've decided to do a repeat of the dumplings for dinner today we all enjoyed them so much.

Had a great night and morning (so far) after my first Xtandi.

Sending good vibes your way....

John

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You have a choice - forgo treatment and decrease survival, or take the treatment and live longer - which do you prefer? PSA is only a good indicator for some purposes, but not for others. Many kinds of cancer don't have any useful biomarkers at all - should they all forgo treatment?

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Post was more about whether most people would do it if it was "cash out of pocket"...

I'm trying to look at it as another crazy part of the adventure. These things certainly keep you busy. I told the nurses (at the place where the blood removals will be) that I looked forward to seeing them...not so much to the treatment.

The facility is like nothing I have seen before...and very "exclusive"...LOL. So definitely going to be an unique and interesting adventure.

John

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If everyone had millions of dollars at their disposal, most would pay $133,000 for three additional months—as long as quality of life was not reduced. But people don’t have this amount of money. A recent study found that a majority of adults in the US could not handle an unforseeable expense of $400. Another consideration is how much pain and dysfunction one has. If a lot, three additional months of the same may well hold no attraction.

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I agree with you. However, I'm hearing (from people who have had Provenge) that the only down time is just around the actual days of treatment. And that is only 2 days one week, off a week...2 days another week...off a week and then 2 more days. So it's six (ish) bad days feeling uncomfortable over a 5 week period. Doesn't sound so bad..AND I'm hearing from some that they did (they believe) get great results from the treatment. I'm excited about doing it now...and it's just 2 days away. Good luck on your journey..

~~John

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You need a bigger bowl. Please try to stay within the subject matter and don’t tease us unless you’re prepaired to share somehow. Your going to be fine, your strong, you have energy and attitude. Just another step for a stepper like you.

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Steve...

I didn't have nearly enough..LOL...there are 3 of us I cook for... gonna make it again today!

and last night...for a snack after dinner I was decadent and went for a quarter pounder with cheese ...I'm bad. P.S. so far so good on my first dose of Xtandi. Slept great and feel great this morning! Life is beautiful!

John

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No, I don't think you are BAD at all. I eat meat and dairy products all the time and will continue to do so as long as I like them. To each their own.

All the very best, greatjohn. Enjoy life, you only live once.

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Thanks....& all the best on your journey.

John

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John, your the first since I have been in this community to sign on to Provenge. I start a new clinical on Monday. All for the sake of living longer. I had to stop all treatment. (the last was Zytiga, Prednisone) to clear my system in order to start this new program. I have to tell you that I haven't felt this good without any treatment, since I started treatment last August. Now I'm dreading what I am in for now. But I do wish you the best with this. Please keep us informed on how you are handling it and if there are indeed better results from your previous treatments.

Ralph

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Sometimes it seems like we are just making the pharmacy companies rich ,3 months 😡 but. The doctor has no way of really knowing what will work for each patient. I love my doctor. He was so worried about 5he cost of the meds he prescribed for me when we started, Xtandi and it’s $5000 a month cost. I had to remind him that I couldn’t take the money with me and when I ran out the they would give me the drug for free 😜😜😜😜. Life’s just a merry go round and I’m not ready to get off yet 😜

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Will do... and so far on the Xtandi I started yesterday I have been having no bad side effects....slept great and feel great this morning. All the best in the clinical trial! SENDING GOOD VIBES YOUR WAY!

John

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Life is beautiful because you allow it to be a journey without beginning or end. You live in the golden moment of self awareness, the adventure found in optimism and the bravery of "bring it on." In my mind, your dumplings were delicious and my day will be better because you exist.

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John,

We are all hoping for a "miraculous change in course with your Prostate Cancer...like, for once, a PSA under 1.0.....and bone scans that improve greatly." We also would like you to share your dumpling recipe with us!

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I completed 3 rounds of Provenge six months ago and simitaniously am taking Xtandi. The Provenge was $90K for each treatment. The first Provenge treatment had zero side effects other than a little fatigue and of course the pain of the procedure. The second treatment made me feel like I had a mild case of the flu and the third one was the bad one. During the last infusion I got rigors or uncontrollable shakes for about 30 minutes and felt bad for about a week. After that everything returned back to normal. The Xtandi gives me some fatigue but overall I tolerate it quite well. Starting my 7th month on that drug. My PSA was 44.99 when I started these two treatments and now it is 0.04 6 months later. I hope you do as well as I have done. Best of luck on your journey. I forgot to mention that I am still getting a lupron shot every 6 months and a monthly Xgeva shot. I do take extra vitamin D and calcium citrate every morning and night.

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your story has given me LOTS of hope ! ! ! thanks for sharing!

~~John

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I went through the Provenge treatment a couple of months ago, and the psa number went up a lot right after it, compared to a few months before Provenge. Very hard to understand how it is possible for Provenge to teach the immune system to kill prostate cancer cells, and then there is no evidence of that happening... why would the psa number not go down or bone mets not reduced? how can survival rate be improved if there are no changes in the disease? Dendreon makes no attempt to explain.

in any case, my new oncologist put me on docetal shortly after the Provenge process ended, and I'm hoping for a synergistic effect between the two... the psa # dropped by more than 1/2 after just the first infusion. but that may be the normal response to chemo (?)

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I'm sending positive vibes your way...and hoping for undetectable psa for all of us!

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Diagnosed in 2008. Prostatectomy. PSA rising in 3 months. IMRT in 2009. PSA rising in 2011. Lupron, Casodex, Avodart, Cabergoline. PSA <0.1. No visible mets. Provenge treatment in 2014 (I had an apheresis catheter installed). Stopped Lupron in 2016 with PSA still <0.1. Continued other ADT drugs. PSA is still < 0.1. I don't know whether Provenge gets the credit or not. Time will tell. Insurance covered the cost of the Provenge treatment.

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You make a great point. I'm on Lupron, Xstandi and have recently added Pembro. My PSA is still going up but more slowly. I keep hoping something is going to click but statistically most of these extremely expensive drugs are bandaid, not cures.

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Thanks for this post, GreatJohn. I did Provenge 2 1/2 years ago, and no, it was not a particularly enjoyable process. However, it was doable and had no adverse side-effects. Like you, I’m enjoying life, treatments and all. Sometimes tests and scans show improvement, often not. Nobody seems to know exactly what produced which results and I’ve learned not to get too hung up on trying to analyze the situation; that’s why I have a brilliant MO. So hang in there, keep cooking great stuff and stay in touch!

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Thanks...p.s. lunch today of country fried steak with black beans and rice was delicious. Food is one of my greatest Joy's and I love cooking.

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My new motto is, "You can't take it with you. Unless you eat it."

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Hi all, I am 70, and I am in Australia where I have not heard of anyone having Provenge treatment. I might be wrong but last I heard was that it extended life by a median of 4 months so the cost to benefit ratio was just not worth the expense.

I was diagnosed Gleas0n 9+9 in late 2009, Psa 6. I had a low amount of Psa for the amount of cancer present, and they tried oper RP but could not proceed - too much cancer.

So instead of the quick fix, I had EBRT, ADT continuously, more IMRT, then added cosadex, lasted 6 myhs, then Zytiga, lasted 7mths, ADT going on and I have countless bone mets most of which are making Psa so Lu117 is the next step and chemo, and there's no effective immune therapy here. Psa is rapidly rising, is now 7.

But since 2009, I've cycled 90,000km, and this week in very cold weather I have done 250km. I did take denosumab for bone density betterment but stopped because it began to cause lower jaw necrosis which docs say start with saw inner jaw. That's stopped since stopping the deno intake. So far, mets are small, so no bones are crumbling to bits like they are chalk, so no none pain - yet.

My average spped on bike is not much below the national average for guys in cycling clubs with full testosterone. I have excellent diet, no coffee, no alcohol. Resting HR is about 50,

BMI 24, blood tests just fine except for Psa, and BD probably a little lower than "normal" whatever that is.

Life did not grace me with a wife of family, so nobody else is upset by my slow passing on the journey we all have to face.

Loosing all the sexual functions was not had to get used to. I am full continent and have a good lifestyle envied by those less well off. Have worked to please others all my life, so don't mind not working now. Doctors like seeing me turning up in lycra after cycling 20km and they seem more horrified by my scans than I am. OK, Pca is getting worse, and either something slows it, and I can get it, or maybe not, and that's life. Can't say more, I am having early lunch at cafe, then off for 65km cycle ride across town.....

Keep well as you can,

Patrick Turner.

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Keep on keeping on! Great spirit!

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Provenge is a different type of treatment, a year after I had it I started Zytiga with a promise of about 8 months effectiveness. It lasted 6 years. I think that was the Provenge at work

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Fabulous results! I'd definitely love 6 years! Trying my best to make it to 70! which is 9 years away. What was your age / stats...how long Stage 4 when you did Provenge? Without knowing some of these things...it's a bit like comparing apples and tractors...LOL.

John

p.s. and I hope you have many more years ! ! !

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So tell me, how do you make a Homemade chicken? I usually buy one at the local market. As Groucho said Viaduct, Viachicken? I know I'm just Picky Picky Picky, or just Pricky Pricky Pricky.

Good Luck and Good health.

j-o-h-n Sunday 06/24/2018 7:46 PM EDT

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I have actually raised chickens..LOL..but not to eat. The "homemade" here is describing the dish....chicken and dumplings. Now you've made me crave it again....and I made it two days in a row-!

John

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Your in my prayers! Wishing you a PSA of 0.00000 😊

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From your lips(literally) to God's ears....😁

Thanks

John

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Sorry, but I have to add my 2 cents worth....for all posters:

1 - Please don't waste time and space talking about food...or other stupid hobbies and activities....most of us here don't really care....it's distracting for those of us who are looking for medical info.....life and death decisions are happening here...it seems every week a spouse or loved one posts here for the first time, desperately looking for help to save a life....I can't imagine they want to scroll thru 20 posts about chicken, or other dumb stuff....

2 - Everyone here, please remember that every prostate cancer patient is different....what works for one, might not work or happen for others, regarding treatments....

3 - It's clear that doctors haven't agreed upon a standard treatment plan for our cancer....sadly, it may take many more years to determine when the best time or sequence is for chemo, or other drugs....

4 - I spend time reading and posting here to learn from others, and to share my story so that it may help others....all of us should make that the objective....

5 - To that end, here is a short version of my story: diagnosed in 2008, had CYBERKNIFE focused beam radiation, looked like it worked, but cancer came back because had gotten into bloodstream...between 2010 and today, have had LUPRON injections (to reduce testosterone, which prostate cancer thrives on), CASODEX pills, XTANDI pills, ZYTIGA pills, then in April 2017 first metasteses detected in lymph nodes and bones, started XGEVA injections to help bones, then had PROVENGE in Fall of 2017, then started chemo in January 2018, first with TAXOTERE, then JEVTANA in April 2018, (both didn't work), and now getting chemo drugs CARBOPLATIN and TAXOL.....Google for more info....meanwhile have been suffering extreme fatigue and shortness of breath and neuropathy (tingling feelings) from chemo....PSA went from 30 back in April 2017 to 2700 two weeks ago....if current chemo doesn't work, as determined by another cat scan soon, will probably switch to a clinical trial...am 71 years old, have had a good life, everything set for my demise regarding will, funeral service etc..so I am ready to go if my time is up....call me anytime for more info: Ron Pavluvcik, Shelton, CT 201-767-1123.....good luck to all......

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to you Ron and to the two people who "liked" what you said...who care about ANYTHING as far as that's concerned....and as to "fighting to stay alive"...YOU ARE GOING TO LOSE"... you should TAKE UP A HOBBY AND LEARN TO DO SOMETHING CONSTRUCTIVE LIKE MAKE A MEAL THAT PEOPLE WILL ENJOY...OR PLANT A TREE..or work in the garden....THE REASON I MENTIONED THE CHICKEN & DUMPLINGS WAS TO SHOW I AM NOT JUST MY CANCER...I'M STILL, A REALLY COOL, VIBRANT...AND BUSY PERSON....CANCER HAS BECOME A BIG PART OF MY LIFE...BUT IT'S NOT ALL OF MY LIFE. I THOUGHT A SUPPORT GROUP WAS FOR SUPPORT...

sorry my "interests" aren't interesting to you....

P.S. this reply is coming after reading this just before going through 4 hours of being strapped down in a chair with my arms strapped not being able to move...doing my first Provenge blood removal and separation....AND I still, although they told me I would be exhausted..JUST finished making home-made chicken, vegetable and wonton soup for dinner...doing things for other people makes me forget to feel sorry for myself.

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There you go again...posting useless information...take it offline so those of us looking for medical info don't have to read about your hobbies...also: my correct phone number is 203-767-1123.....made a typo in my original post earlier today....

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Ron....I read some of your posts...and I was put to sleep reading about YOUR hobby...GOLF....who cares that you did a couple of holes...or whatever? don't you see it's the same thing?... you're interested in golf/I like to create amazing dishes (I'm in a foodie group which is why I had the photo of the bowl of chicken and dumplings)

....your "golfing"...another person's "biking"....another person's "holiday trips"....are what make most of us "care" about the person they are reading about. They become "human". It's (another of my interests) like reading a book where the characters are so flat you don't care what they are doing or if they get killed.....you have to build "interest" in the character to create a worthwhile story. By the way, I do not golf...but live in a golfing community and I "act" interested in the golfers when I chat with them about their game. It's called "being polite"...

I really think we all need to put out "love" and "compassion". I once said I'm tired of the old people on here who are on Lupron (been castrated) complaining that they "can't get it up". Duh, you've been castrated...but I've learned to let their (what I see as) crazy unimportant concerns go....and not complain. I started this journey at 57 and sex and erections...have been of zero interest to me. Living and enjoying life has been my main consideration. I got a LOT of positive feedback from the food pic, by the way, if you read through the earlier replies..AND a lot of good feed back about both Provenge AND Xtandi.

...I also read that you are/were doing Provenge... Today was the "blood letting" and I do my first "infusion" on this Friday....I was lucky (I read you had to have a port)...that my veins were good but it's still hell sitting there with your arms strapped down and not able to move even an inch without the machine beeping a warning. And they have a blood pressure cuff so tight on your one arm that you keep feeling weird pain in it...

All the best, and Have a GREAT week,

John

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How rude.

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It seems like everyday there is someone new, scared to death just diagnoised with this disease. They make a comment like “I’m new to this site, and have a question. Although any of these posts could find the answers by searching in past topics, it just amazes me how many people respond to these newbies with support and suggestions on how to deal with what we all suffer with. I don’t see you posting to those people to use the search box to locate your answers since this topic has been covered so many times before!!! Like many I’m sure, if it isn’t a subject I’m interested in, I move on to something that does. If this post is wasting so much of your time, why did you spend so much time typing your “Five points of your 2 cents worth”? Much of what you posted has been repeated over and over and over, except for your displeasure with the tasty looking dish. There was no reason to make those comments, hoping your having a better day today because you’ve had your panties in a wad. Get over it, if you don’t like it, don’t read it, move on. You have to admit, it looks delicious, and sometimes just thinking of something else with desire can help to make your day.

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thank you Steve!

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The more I think about this, the more upset I get.... Look for a post from me called: “IS IT OKAY TO GO OFF TOPIC?

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Will you food clowns finally stop wasting bandwidth here and post on some chicken blog? This is a prostate cancer site and I have done my part to convey useful info to help other patients and caregivers....by sharing my experiences....even providing my phone number, and many have called for more info: 203-767-1123......Ron in CT

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Your doc is right in that there is no way to know. Just as there is no way to know if RP extended a man's life or caused distant mets to appear even sooner than they would have.

All we have are statistics on large numbers of men. They are pretty grim; the number needed to treat in the PROTECT trial to keep one man from progressing to metastatic disease after 10 years were 28 and 33 for RP and RT respectively. That means a 3-4% chance that they helped and 100% chance that the men who aren't helped suffered for no benefit, as measured by metastases at 10 years.

You've worked out the risk/reward on Provenge thoughtfully: so many days of downtime, versus the chance of longer life. 3 months is just an average, it might be 0 months or 300 months, there's no way to predict in advance and no way to tell.

Good luck! I look forward to hearing about your experiences -- Provenge may be in my future as well.

I enjoy your posts about food and life. Sometimes we get so focused on the disease that we forget that the purpose of all this suffering and expense is to extend life. What's the point of that if you don't take the time to enjoy life? What better place to celebrate than in a group of peers?

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Thanks FCoffey!

I actually heard from one of the nurses yesterday (and the procedure was not that bad for me...other than my right arms was in really bad pain by hour 3...so the last hour sucked...it was like getting out of prison when the "shackles" were taken off)...when I asked her if anyone had ever done Provenge more than once. She said yes...that they had a client who had done it about 9 years ago during clinical trials and had for 8 years been in remission...he's just now seeing it growing again...and is signed up to do it again ...and I think she said this time at his expense...

So for some people...it IS a miracle (as it described in this one anecdotal case). Hearing about him...did give me super hope! After stopping for a big lunch on the way home...I found I was sleepy (hot gotten only about 4-5 hours sleep the night before because of nerves and having to get up so early....I found that around 2 pm I feel asleep for a whole hour...woke up groggy...had some iced tea...and was bouncing off the walls with energy...NOT supposed to do any vigorous exercise for 24 hours...but will be heading to the gym the morning at 11 am (23 hours) for a light work out and some cardio... All the best on your journey (and your grill).

~~Jojhn

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The trials that were used to get FDA approval of Provenge were crooked. They changed the cohort age limits during the trial - a standard way to do cherry picking. They also took white blood cells from the control group - and didn't put them back! Lo and behold, the controls died faster than expected, which had the effect of making the Provenge arm of the trial more effective.

So I was deeply suspicious. I've talked to several practicing oncologists. They all say that Provenge definitely helps some men, and in some of those men it helps a lot.

The 3 month survival benefit isn't really that well supported by data or very useful. What most of us are interested in is survival benefit after 5 or 10 years. It appears that Provenge gives no benefit in some men and a significant but not well measured benefit in others. The average may be 3 months but very few men actually experience that.

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Life really is a crap shoot!🤔

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