Les's 15th year!: Just needed to share... - Advanced Prostate...

Advanced Prostate Cancer
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Les's 15th year!

bluepacifica
bluepacifica
95 Replies

Just needed to share. My husband went for his 6 month Lupron shot, 15 years straight. His doctor stood in front of us with a big grin on his face saying, "It's so great to have a Gleason 10 sitting here and doing so well!" Yes, diagnosed in 2004, Gleason 10, dismal prognosis, but he's still here, leading a normal life for a 70 year old. No weight gain and no obvious side effects other than a sore tush for a few days after the shot and still going strong. I think doctors will be having this experience more and more. Good health to all of you warriors and keep fighting the good fight! Aloha blessings. Joy and Les

95 Replies
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Schwah

Did he take anything besides the Lupron! Congratulations!!

Schwah

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bluepacifica
bluepacifica
in reply to Schwah

Thanks. Casodex, Zometa infusions, surgery, 7 weeks of radiation. Lupron was given in Feb. 2005. He was 54, Gleason 10, psa 16.9, metastasized up the neck of the bladder and tailbone. His diet stinks, he doesn't care for food, takes no supplements except a probiotic and I insist he takes Lexapro. (that's to keep me sane) Other than that, he's very active, still takes his motorcycle out for a spin, has his projects and just lives.

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Myriammole

Congratulations! Is he still on Casodex and Zometa or since 2005 just Lupron?

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bluepacifica

Just Lupron.

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whatsinaname

Could you please explain "his diet stinks, he doesn't care for food".

Thanks much in advance.

Your husband has done remarkably well for a Gleason 10 whose "diet stinks".

May he continue to do equally well in future.

I wish you both all the very best.

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bluepacifica

I'm just describing his situation. Please, guys, take your supplements, eat healthy, but for my husband who hasn't had a vegetable in a long time, lives on sandwiches, etc. it obviously doesn't make a difference. His blood test showed everything in the normal range. PSA remains at zero.

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whatsinaname

Yes, for some strange reason (good for them though), it just doesn't seem to affect some people.

Warren Buffett, for instance, drinks only Cherry Coke, no water. He pigs out on steaks, hamburgers, hot dogs, bacon, ham, sausages, ice cream, chocolates, etc, etc, etc, etc. He doesn't have a diabetes or a cholesterol (triglycerides) problem. He will be completing 89 tomorrow.

Thank you, bluepacifica, for your reply.

May your husband continue to eat what he likes yet remain healthy.

All the very best to you too.

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bluepacifica

How kind of you! My father broke every health law in the book, had very low cholesterol, loved to eat the fat on the side of a steak, smoked until he was 68, and lived until 94. Sharp until the end. Never sick. A bladder infection got him in the end. Oh, and no grey hair on a full head of sable hair. It's all genetic.

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whatsinaname

I too had a full head of hair, 80% black, 20% grey till 30 days back. But, after radiation to the skull, my hair kept falling out. I have now shaved my head totally :-) If anyone were to ask, I would tell them that it is the fashion of the day :-)

Yup, its genetic, no question at all.

All the very best to you, bluepacifica !!

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bluepacifica

Bet you look great and certainly in fashion! All the best to you, too. Joy (my name)

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whatsinaname

Thanks, Joy.

Carlos.

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Marc_ee

Very nice to read your post first thing this morning! Maybe the motorcycle has something to do with it?

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bluepacifica

That's probably what he'd say!

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Myriammole

Amazing!!!

Which side effects (if) does he have from lupron? Does he lots of sport?

Do scans show anything? How do you know he still needs lupron?

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bluepacifica

Back in 2008 and 2009, he'd delay getting his Lupron shot by 2 months. His psa would rise and testosterone would as well. No more of that!!! Normally, a man doesn't have his testosterone bounce back after being on Lupron for a long time, but not Les! His doctor didn't want to risk anything so he's gotten his Lupron shot right on schedule since then, No side effects from Lupron. He never gained weight, he never had hot flashes, but did get cranky. Lexapro has taken care of that.

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Myriammole

Lexapro is a Selective serotonin reuptake inhibitor and there are studies on their antitumor effects. Who knows, maybe it helped among others?

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bluepacifica

He hasn't been on Lexapro for the 15 years. It's been a battle for him to stay on it regularly. Interesting that it has anti-tumor properties.

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LearnAll

That's a great outcome. Research is needed about why some people are able to live

very long with met PCA...what are the factors which are positive in such individuals ?

Its encouraging to all of us and so, thanks for sharing this story.

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bluepacifica

I'm still convinced his dna mutated, as described in that article that I still cannot find!!!

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paige20180

Pray that’s us. Thank you for hope. So happy your husband is healthy!

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bluepacifica

Me, too!

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Magnus1964

That's great, I have a Gleason score of 9 and I am still here 27 years later. My congratulations to his doctor. He is doing a great job.

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bluepacifica

Fantastic!!!

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jfoesq
jfoesq
in reply to Magnus1964

Magnus- Would you mind providing more details about your dx and treatment. I am at 7 yrs, but 27- WOW!!! That's awesome.

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Magnus1964
Magnus1964
in reply to jfoesq

I was stage 4 at diagnosis and had an orchiectomy. 4 years later I had radiation to the prostate. That kept my PSA low 3 years. Then I went on casodex which lasted for 5 years. After a couple of minor ADT drugs that had bad side effects I tried a re marketed drug (DCA) which kept my PSA low for 3 1/2 years. After that I went on a drug trial with zytiga that lasted another 3 1/2 years. Then i went on the Provenge treatment for some nodules in my lungs. And then some salvage radiation to my hip. I am now on a second drug trial with xtandi. Its been 3 1/2 years on that and my PSA is rising.

Its been a journey

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bluepacifica

Yes, it's a journey but you're facing it with determination!

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jfoesq
jfoesq
in reply to Magnus1964

Thx for the info, Magnus.

All the best to you

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GranPaSmurf

Fantastic! I'm 79 and just getting started on this journey.

His story inspires me.

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pjoshea13

I know how that feels, having hit 15 six months ago. It's a bit unreal. I was only a Gleason 4+3, but with mets the odds aren't good for 10 years, let alone 15. At 71, I would like another 10 years. That seems greedy, but Magnus is at 27 years, so why not?

Best, -Patrick

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bluepacifica

I have to mention that we don't mention cancer except when his appointment comes close for his shot and blood work. We've pretty much ignored it. If you think you're sick you'll be sick. Simplistic, I know, but for us it has worked.

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Myriammole

Makes sense, less stress. So you are here on forum but don't speak about to him. I must learn from you!

How often does he get lupron shot and do blood work? How is his cholesterol?

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bluepacifica

He's been on the 6 month Lupron since it was offered, prior it was the 4 month shot. He gets blood work a week before we see the doctor and get the shot. Les doesn't even know about the forum. His cholesterol is 140. Everything is in normal range.

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Myriammole

you are fantastic! I research so much and sometimes get also down from news. I thought it would be important for my husband to know to make his choice and did not understand why he wasn't interested (since he is a physicist and knows lots more than I do), but now I think I also should stop talking about it.... I was about 1,5 years doing only research all the time, my own work I did automatically and even stopped playing my violin (I am a musician). Well, I will try to change!

Are you still often here on the forum? how did you manage this at beginning? I read he had lots of side effects on Zometa, was it against bone mets or osteoporosis? and you stopped because of side effects?

Sorry for all those questions, my husband did not begin any standard treatment, Gleason 9, 1,5 years from diagnosis, but now will probably begin radiation and ADT.

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bluepacifica

Because my husband was considered young for his diagnosis, they threw everything at him but the kitchen sink. He had a Lupron shot in Feb. 2005, a month after surgery. I should also explain that the tests showed the cancer was contained in the gland, no big deal, robotic surgery was scheduled. Well, the surgeon was shocked when he saw the cancer spread all over the place. He opened him up to do a radical and spent a few hours scraping as much cancer as he could find. During his radiation treatments, began in March 2005, they discovered the cancer was also in his tailbone. It lit up during a bone scan. So, his last 2 weeks of radiation were on the tailbone as well. Radiation works, I saw it with my own eyes.

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Ratech
Ratech
in reply to bluepacifica

I can relate. My husband is almost at the 1 year mark of this journey. only RP done. He's 52. PSA staying at zero. We never talk about it until his every 3 month PSA. His diet stinks, he smokes and drinks too much on the weekend. I don't force him to talk about it. I come here and read what I can and if he ever wants to talk, I feel better equipped because of this forum. Thanks for sharing your remarkable story!

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bluepacifica
bluepacifica
in reply to Ratech

He's going through emotional upheaval that women have a hard time understanding. My husband said that he lost his identity at first. Depression hit him like a ton of bricks, hence the Lexapro. A doctor said after his Lupron, "Picture a car speeding down the highway at 90 mph and suddenly it's slammed into reverse. That's what happened to Les".

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LearnAll

You long timers need to disclose if anything you did or suspect you did ...that kept PCA in remission for these many years …...for the benefit of newcomers to the game ...like myself.

You might not know with certainty but you may have some clue what were the factors which helped you.

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whatsinaname

My guess, LearnAll------- LUCK, pure and simple.

Some have it, some don't. Nothing to feel bad about.

If one thinks its unfair, well, life is not supposed to be fair.

Of course, its also true that one makes ones own luck.

To the extent one can research and learn what to do better, the better for one.

LIVE AND LEARN.

Cheers, LearnAll !!!

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LearnAll

Growing older and wiser, I started to accept that luck (destiny) is a major factor in life. Its luck which determines the biggest things,, such as what country we are born in, what family we are born in...whether born smart or dumb. .beautiful or ugly and so on.

In my case ,not having a single risk factor and suddenly getting diagnosed with PSA can not anything except pure luck. In eastern cultures, role of destiny is emphasized a lot and that keeps people humble.

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whatsinaname

Exactly, LearnAll.

You are 100% on the ball.

Thanks and Cheers !!

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Rocketman1960

I prefer providence over luck. I'd like to believe the Almighty plays a role in our life. Be humble and faithful.

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bluepacifica

Not a clue, neither do any of the doctors over the years. About 3 years ago, I saw an article about dna mutating as an explanation for men living for a number of years on Lupron, beating the odds. I continually search for additional information and come up empty. My husband's father and uncle both died of the disease so it's probably familial. Les doesn't drink but has a lousy diet. He's naturally thin and never cared about food. (I do) He has led an idyllic life since we both retired in 2007. We lived on a remote island in the Puget Sound for 7 years and now on Kauai, north shore, most gorgeous spot on the planet. No stress at all.

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Myriammole

Does he take a lot of sunbathing? Ever measured vitamin D? Any supplements?

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bluepacifica

We were living in the Pacific Northwest, not known for sunshine, but have lived on Kauai for 5 years. He's in the sun everyday. He's not had his vitamin D tested.

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mjbach

And you’ve always only had the one same doctor directing things?

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bluepacifica
bluepacifica
in reply to mjbach

No. His first doctor died of prostate cancer, his second one retired, his third moved and retired, and now he's on his fourth.

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bluepacifica
bluepacifica
in reply to mjbach

A substitute doctor came in after #3 and said, "You don't need Lupron, your psa has been at zero". I uncorked and explained that he would be getting his shot! I won. #4 believes in staying the course. I agree.

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mjbach
mjbach
in reply to bluepacifica

My husband didn’t have Lupron for his first 14 years of diagnosis. Didn’t want it.

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bluepacifica
bluepacifica
in reply to mjbach

What was his Gleason score? Had it metastasized yet?

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mjbach
mjbach
in reply to bluepacifica

4 + 3 Gleason 7; Mets to lungs when he started Lupron became CR after 2 years or so.

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bluepacifica
bluepacifica
in reply to mjbach

I just read your bio. You both have sure seen your share. But, you've survived. Tomorrow is another day.

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bluepacifica

Right after Les was diagnosed, I dealt with my fears by going on a website, no longer in existence, that listed men fighting the disease by age of diagnosis, psa, gleason score, treatments. I followed the lives of many men in similar situations and was uplifted by their continued survival. I know how having hope can help a loved one cope with it. It was a lifesaver for me. Just reading all your comments has been wonderful!

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mjbach
mjbach
in reply to bluepacifica

I still need to learn to deal with my fears. That’s an ongoing battle for me.

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bluepacifica
bluepacifica
in reply to mjbach

I completely understand. I literally took it one day at a time. When Les was diagnosed I told him we were buying time, everyday could bring a cure or successful treatment. It has taken me 15 years to get over expecting the other shoe to drop. For some reason, I didn't dread his psa test like I normally do. But, I'm also superstitious and don't want to get too cocky. Doing research helped me cope. Do what you need to do.

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henukit

From the bio: "Still rides his motorcycle, still goes down to the beach, kayaks, picks shells, makes jewelry, hits a few golf balls, still walks and rides his bicycle in the area." And all this while living with the loving supportive woman on the islands of Hawai. That's your answer right there, gents! :)

Seriously, sincere congrats and good health for many more years!

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bluepacifica

I've been the pushy wife. Doctor #2 was a regular hoot. We walked in to see him for Les's shot, he was at his computer with his back to us and said, "So, how are you feeling?" Les answered, "Fine". Doctor said, "I'm not talking to you, I'm talking to her". I laughed so hard, but it was true. I also need to confess that Les didn't know all the gory details of his disease, I did the research, his doctors talked to me while Les sat in the chair looking like a zombie. He had me do all the talking because I had the numbers, dates, and everything related to his treatments in my head. I could rattle them all off. Last year, driving home after his shot, he was curious as to why his doctor was so ecstatic over how he was doing. I told him everything. Now, so much time has passed that he doesn't worry over the disease like he would have had he known how bad it was. I made that call and he was glad I lifted that off his mind. I knew him so well.

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Myriammole

wow, you are my heroe! So he did not know too much, but how did he react during bad times (when he had bad side effects from zometa or because of incontinence)? how did you deal with this period?

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bluepacifica

Oh yeah, forgot to mention Zometa infusions. Because it had already gone into the tailbone, his doctors, urologist and radiation oncologist, decided to try Zometa infusions, once a month for over a year. I was a teacher and had maxed out sick days so I took off the day of his infusion and the following day due to awful side effects. Every month the side effect was different, we never knew if it was from cancer or Zometa. Did they work? Who knows, I think everything worked in tandem.

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NPfisherman

Fabulous response....May it last forever....

Don Pescado

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bluepacifica

Keep fighting the good fight!

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Tall_Allen

Wow - impressive!

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Collarpurple

🎉🎉. Wonderful news. Bet everyone at that office was smiling

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bluepacifica

Yes. His doctor has mentioned this before but never like he did that day.

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Cheerr

Woke up reading to a great news! Hope it continues for many more years ... :)

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bluepacifica

Thank you to all. I'm so pleased to read your comments that contained so much hope for many of you. Feel free to get in touch, either here or a direct message, if you have any questions. I'm very open so please feel free to ask me anything.

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alangeorge

Yahoo Joy and Les and Less... what a great example.

Alan

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Nicnatno

Very inspiring. Gives us all great hope.

Nick

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TNCanuck

Incredible! Keep fighting the good fight and inspiring others, Les and Joy!

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mgrinnell

I do the research for my Gleason score 10 husband, Dave. Gleason 10 information is quite limited. Your information is encouraging and your enthusiasm is contagious. Please continue to share. Thanks!

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Garbonzeaux

Here's a little info. I'm a (perfect?) 10 also, a little over 2 yrs in. You can look at my profile for treatments, but aggressive treatment early seems to have worked well so far. PSA undetectable since about March of last year. My wife is a tremendous help, and staying positive is what I'm good at. Sounds like you're a wonderful wife for Dave, and here's hoping we all live long lives.

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grahaminator63

GREAT NEWS Joy and Les!! You are my inspiration today. Thanks for the booster.

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larry_dammit

That is great news 😀😀🙏🙏🙏

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dadzone43

Huzzah!!!

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tdouds

I just passed my 12th anniversary; dx in 2007 @ age 51; Gleason 9; at RP escaped capsule, up neck of the bladder, in surrounding muscle wall, in seminal vesicles, in 2 of 15 lymph nodes; 6 months of Lupron, then off ADT for 12 months; changed from Urologist to MO; went to Eligard - 1 year, off 18 months, did Salvage Radiation (38 sessions) in summer 2010; back on ADT holiday; in summer 2014, when I thought we were going back on ADT, turned into a lab rat to qualify for a clinical trial - they let it grow (after I hit a 10 PSA)...30 day watching periods; was a 10 in June; 14 in July; 24 in August - went for bone scan - had mets to bi-lateral ribs, left clavicle, right Mid-humerus, back of the skull and L4 in spine - immediately on bicalutamide (6 weeks) before going back to 3 month Eligard shots WITH bicalutamide; ADT continuous since that time (5 years this month) - all mets vanished; PSA dropped to a nadir of .04; currently at .51; PSADT is about 14 months at present; I'm in the standard of care arm of the clinical trial, so only doing bicalutamide and Eligard at present, and my 3 month raise is usually about .04, so no real worries at this time. I feel very lucky, and have managed to do very well over all these years - my big issue is osteoarthritis in my knees - the PCa I can deal with - an occasional hot flash is no big deal to me now. I stay current in my research reading so that my MO and I can have frank talks about where things are going and what we should be looking towards (he's leaning towards Provenge once I'm out of the trial, but we're still a ways away from that)...so I'd agree with the others who say some of it must be genetic, and we got the lucky genes in the pool...I also have Type 2 diabetes, and have been on Metformin for years, so I also think that may have had some effect on the outcome as well. No matter why, I'm thankful to still be on this side of the dirt, and I lurk here daily reading everyone's comments and take in the thoughtful research from PJOShea and Tall Allen - my MO says I'm one of the top 1% in his practice who is knowledgeable about what is happening and what the current research is saying, which makes my quarterly visits fun - he listens to me and my concerns, and he has agreed with things I've asked about doing and adding it to the treatment regimen (like the 500 mg Ginseng Capsules studied in the Mayo trial years ago for helping with energy - I found it helped me a great deal). so, in the long run,, congrats on 15 years, and hoping you'll see at least 15 more! ;-)

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bluepacifica
bluepacifica
in reply to tdouds

Congratulations!! You certainly have a handle on everything. You seem to be very upbeat, curious, and determined! That's a winning combination for sure.

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Muffin2019

Gives us all inspiration to keep going and know we could have 15years or maybe even 25 years, congratulations he rocks.

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BobJensen

Great news. Wow.

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Muffin2019

I think attitude is alot, walk alot, work part time, alter diet to healthy. Tried an antidepressant for the hot flashes but just trading 3 problems to solve 1 so I quit before I had to stop and deal with withdrawal symptoms . During the chemo the oncologist would not let me quit my part time job as did the company, no real side effects. I can deal with the hot flashes, lets me know I am alive, a small price to pay. I did kind of freak out when my psa went to 1.9 from being 0.6 but both my PCP and oncologist said it is still low so not going to stress over it and enjoy life. Went to the local State Fair and walked over 6 miles and felt great the next day just like I used to do, feel like I am 50 even though I turn 68 next month. Plan on working till 75 so I can celebrate 25 years with the company. Keep the faith as it is important, my sister died this year from lung cancer (never smoked in her life and ate healthy) and my brother who smoked and drank like a fish is battling bladder cancer for the second time that has spread to the colon and outside of the liver, prognosis not good but not up to us, have put him in God's hands. Faith plays a very big part. Diagnosed in 2017 with psa of 156 with Gleason of 9 and Mets to spine and rib, all are healing now with just arthritis so doing great.

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monte1111

Hero and heroine. Almost sounds like movie material. By the way, we're all moving to Hawaii. See you next week.

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ITCandy
ITCandy
in reply to monte1111

Take me with you! I can hollow out coconuts and serve drinks.

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bluepacifica

Lots of work here in the hospitality industry. It's also perfect for retirees.

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bluepacifica

Make sure you come visit us on the north shore of Kauai. It's the most gorgeous spot on the planet. The local people are kind, compassionate, and gentle. We also get happy tourists so our atmosphere here is conducive to healing!

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Tommyj2

Talk about good fortune amidst bad fortune!!! How many would love to be side effect free on Lupron..... Still keeping my fingers crossed for when my time comes...... 15 yrs!! great!!

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Rizzo52

Great news! Hope for us all. Keep the Aloha Spirit !

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jfoesq

Excellent news that is uplifting to all of us.

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lavis

Great news.

He is an inspiration to so many of us.

Thank you for sharing!

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TomNew62

Any supplements? Wow that’s awesome 😎

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bluepacifica

No, except for a probiotic daily. An occasional aspirin if he gets a headache, but that's rare.

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tceinvestments

Such great news.

What level is this PSA.

Who is his oncologist

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bluepacifica

psa is zero. No oncologist at this point. He did have a radiation oncologist years ago who was brilliant.

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NWLiving

Hey from Port Townsend. That’s great news. Thanks for sharing.

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bluepacifica

We retired to San Juan Island in 2007, moved to Kauai in 2014. We loved SJI but no palm trees or warm water. ;)

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Sunlight12

Congratulations to you both! And thank you for sharing - it's so inspirational! :)

-Sunlight

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j-o-h-n

Thanks for your post... Does your huband use his motorcycle as a surfboard? The secret to long life is "keep breathing"....Laughing is my hobby..

Good Luck, Good Health and Good Humor

j-o-h-n Monday 09/02/2019 10:56 AM DST - Pinnes

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bluepacifica

My husband has a paddle board and kayak if that counts? Yes, breathing is good, so is laughter. It's not easy to be depressed when you live on the north shore of Kauai! Our life is simple but very enjoyable. Best wishes and embrace the Aloha Spirit!

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