Diagnosed on by 46 birthday Gleason 9/10 stage 4; enlarged lymph; masses near the base of my penis. (That pissed me off). Started on Lupron and cassodex; quit cassodex after I developed an allergy. Got FIVE second opinions- found my team, got a plan and went to work: 30
Days of radiation concurrent with 4 chemo infusion cycles pulled out all the tricks and knocked it on its ass. I returned to the mountains of Alaska and moose hunting with my Daughter.
About a year later a slight PSA signal and scan showed a spot on one rib. Bring the guns. 5 days high dose radiation on that spot to knock it OUT! I returned to the wilds of Alaska in time for silver season and it was awesome!! Started Zytiga and 5mg prednisone after the touch up radiation months passed PSA drifting closer to 0 every month, .. until it didn’t
About a Year later my PSA is creeping up again from 0.1 to 1.0 over several months. I climbed a big mountain yesterday chasing mountain goats with my young son, burning memories into his mind - No luck but a great adventure 14
Mile day, slept well
I’ve got a young family that I Love intensely. I’ve got dreams and plans that I don’t want all ruined. The odds are long but I’m playing to win.
I’m seeking advice, looking for the A-team problem solvers, those that are on the edge of discovery searching for a cure. Give me their names and the hospitals they work at and I’ll do my research on those who are driven for a cure.
Thanks for your advice!
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Chugach
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Whatever you do, however efficiently you do it after assembling the best possible team, do not rule out the role of LUCK (highly underrated on this board, I feel).
There are some things beyond ones control, I feel.
Good luck brother! I was 49 at diagnosis G9, No Distant Metastasis. PSA went to 0 after RP, 2.5 yrs later SRT due to rising PSA. Changed diet primarily plant based, intense workout regime in gym, running and biking. Most importantly stay positive and stay after it. My PSA is undetectable 5 yrs later. No ADT. Most importantly I am an archery sheep hunter as well as other mountain game. We are a different breed with a mindset and determination of very few. Stay strong hope you find what your looking for. Odds are I will have to take the next step in taming this monster, when? Who knows? How? There continues to be new drugs and treatments released that will extend our lives. As someone else mentioned we all need hope and luck to find that “cure”. Don’t forget live every day like its your first! “Never give up. Never, ever give up.” - Vince Lombardi. Hope to see you on the mountain someday!
Thanks for the reply post. I tried to go plant based diet but it doesn’t work in rural Alaska where vegetables are sparse. Gotta get your food from the Forest whenever possible. Then I figured ... animals eat plants so it is plant-based! So I suppose I’m on a plant-based-meat diet. I’ve read the papers on diet. But I suspect those folks are eating fatty beef and pork, greasy chicken, nothing at all like this pure lean organic wild meat and fresh bright salmon we have. I know it’s not a science study - but I seriously think lean wild game is cannot be a problem, (particularly if your hauling it off the mountain on your back). Keep climbing those mountains and chasing those rams! I’ll do the same!
Yes I definitely agree with your thoughts about diet. I eat fish or wild game 3x per week otherwise I stay primarily organic plant based. Here in CA its quite easy to find organic veggies year around and grains. I stay away from the over the counter beef, pork, chicken etc.. I do believe its important to have some protein and other amino acids that come from the meat in one’s diet. Purely my opinion based on some research. Wish you the best!
I love your attitude! People with HIV learned that HIV was a disease they could live with without curing. I suggest you think of your metastasized prostate cancer that way. I don't know any great doctors in Alaska - the closest would be Celestia Higano at the Cancer Care Alliance in Seattle. She is on the leading edge of innovations for prostate cancer diagnostics and treatment and is lead investigator on many clinical trials.
Probably so. It is hard to choose a one "best" when there are so many rock stars. In Chicago, Maha Hussain is at Northwestern; Elsewhere in the US, there's Oliver Sartor at Tulane, Eleni Efstathiou at MD Anderson, Emmanuel Antonarakis at Johns Hopkins, Michael Morris and Philip Kantoff at MSKCC,... they are all heavily into translational medicine -- bringing innovative treatments from the lab into clinical practice. All the top medical oncologists at teaching hospitals know one another, collaborate on research projects, and are well-informed about what the others are working on (they are professors at universities).
Thanks Tall- I head south bound for my quarterly anyway. Air travel is just part of the routine. Not tied to Ak for medical- just for solace and adventure. I’ll research the names you have listed and pay some visits!!
I would certainly throw in, at the top of the lower 48 group .. Dr. Daniel George, Duke university hospital, Durham,North Carolina PC Group . You meet with four doctors including MO, RO, surgeon. I moved to North Carolina so that I could be in their program!
With your mindset you will run a long and good race . Best of luck on forging through .
You will find a way to push APC back and live a long time... you’re going to be here to see your boy and family grow.. I love to hear about your lifestyle up there in the northland... looks like fish smoking ..?..in your photo... send me a box???? Mmmmm..You’ve come to a great site for info and help. I used all means to kick pc down .. you can too. Untreated it will surely mow us down ... So live healthy and do what makes you happy.... Welcome to the “Club” that no-man ever wished to join.. Good luck from Az🌵
I'd consider Celestia Higano at Fred Hutchinson Cancer Center in Seattle. Closer and in the same group, or at least aware of the research of those suggested by Tall Allen. She's big on treating the person and pays close attention to side effects and markers that suggest where and when the cancer will appear next.
Hi Chugach, I was also diagnosed G10 at age 49. I think a cure is a long-shot. Like Allen said, the way they dealt with AIDS was to stop trying to cure it, but to try to keep people alive. That's what I hope for PCa. All the best, Paul from Perth.
Here's what another poster on this blog site had to say about his recent search for the best and his experience with Dr Luke Nordquist in Omaha:
"I had a busy weekend meeting with a Radiologist and and Oncologist at the Buffet Cancer center. I was impressed with Dr Benjamin Taply the Oncologist, Harvard, John Hopkins trained. And in a short story, agreed to get 2nd shot of Firmagon and start Docetaxel on the 30th of this month
I then met with Dr Luke Nordquist an Oncologist focused on immunology (he trained under Dr Scher at Sloan Kettering) at his private practice. He spent 2 hours with my wife and I and explained the historical, current and perceived future of treating and possibly curing advanced stage prostate cancer. We also spoke about his onsite research center that has more current trials going on that any other location including Mayo and Sloan. (I would guess has nothing to do with quality but the many less "hoops" to jump through outside of a teaching hospital setting). I have a PhD in Human Physiology and My wife a Doctorate in nursing and we still felt his every word had value and purpose. I was impressed enough with his expertise, general approach and willingness to collaborate with Dr Kwon at Mayo that we cancelled the Buffet Cancer Center appointment and started Taxotere Chemo that afternoon and will get a Lupron shot with next Chemo in 3 weeks. I feel Dr Norquist coupled with Dr Kwon will cover as many of the bases I know of at this point in the exploration expedition we all are forced into. I truly thank all of you that have commented on my questions in my posts because I would not be where I am today or have my current sense of calm without all you brothers out there. Brent"
You sure are unlucky to get "an old man's disease at 46" and most docs are not likely to agree there is ever a cure for "young man's Pca" that is often considered to be more aggressive than old man's Pca.
I was diagnosed at 62 in 2009, but probably the Pca started at age 57 and 2004, and it generated a low Psa so docs were not alarmed, so no examinations were done until 2009, and by then Psa was only 6 and in following year docs tried to operate with RP but there was too much Pca wrapping around PG so they assigned me to ADT and RT.
But by then my monster tumour at my PG had already spread to countless places including many bones. The ADT kept all under suppression until 2016, when Casodex was added, and extra RT, and then Casodex failed in 6 months, then Zytiga gave 8 months, and for last 13 weeks I have had chemo with Docetaxel, and that seems to have not been successful so now Psa is 40+ and bone mets are due to become painful soon and I have booked myself into getting Lu177 theranostic radiation soon.
The game ain't over yet. But all most men can ever achieve is to delay the end stage of the Pca where life becomes impossible with effects of Pca and the side effects of treatments.
The idea of a cure for Pca is for me a silly idea to contemplate. Almost nobody ever gets a Pca cure. Many claims are made for Pca cures by ppl selling alterantive therapies such as cannabis oil or apricot kernels or various herbal concoctions made by tribal indians in some remote tribe. No claim has ever been proven to be true, and all too often the person making a claim dies, and so nobody hears them say how product X or Y really did not work.
The ONLY time any "beats the disease" is by early surgery, and often, in maybe 50% of cases the surgery is still too late because Pca has already spread before the surgery, so treatment can go on and on like mine for year after year and at huge expense to Medicare, maybe $200,000 so far, plus $20,000 from my own pocket, and huge amounts of time getting blood tests, scans, talking to doctors, and I have never known just how long i'd live.
All sex ability was exterminated years ago, except desire to have a partner.
But I was lucky to not have a wife or family who would have been disapointed and upset by me getting what is a long time chronic disease. I am extremely independent, realistic, forthright, and I never get depressed, even though I see my end coming at me at 71.
We don't have moose to hunt here in Australia. I have become a vegetarian, pacifist, and I never hunted anything in my life, and all I wanted was peace, and being able to make others happy with my building work on their houses, and then later as an electronics tech when my knees stopped working properly at 55.
Pca is what I have in common with the 1 in 7 men who get it. I have met many men with very different lifestyles to mine, and become the wiser for it.
I have seen guys who are alive 25 years after their diagnosis and others who have gone from diagnosis to end of chemo in 3 years, when I took 9 years for same journey. The Pca journey is different for every man and what works to slow it down for one man may not work for another.
I much miss never having children or a wife who loved, but its no use being sorry for what life cannot give you.
I much liked my life, regardless of what I didn't get.
I have been a fairly keen cyclist over many years of life, and since 2006 when my knees had recovered after an arthroscopy I began to cycle again after a 12 year break. Since 2006 I have done about 135,000km, chasing after nothing, but taking in the good health that all brings, mainly alone, because few others have any dedication to something oddball such as just cycling around for 220km a week.
So the exercize has my HR low, and waist 99cm, BMI < 25, and during this last chemo cycle of 3 weeks I have cycled 20km every day for first week, and it will increase during next two, and docs like seeing me turn up at hospital dressed in lycra to talk about the disease that is killing me, they see me coping, looking so well, knowing the scans are a true horror story.
At earlier times I tried to contact research establishments to provide researchers one-on-one talk about Pca and maybe be a research subject. The response I got from two universities was negligible, and although these places said they were researching Pca, not one has published exactly what they did, and giving money or time to them was a waste of time. They all "marketed for $$$$" but none ever produced a useful result.
Very few places are making any headway against Pca. Over last 10 years since 2008, I have seen a few Pca suppression drugs become available like abiraterone and enzalutamide and one more chemo, cabazitaxel, but that's all, and guys keep dying. The targeted RT with LU177 and Ra223 and Ac225 all look promising, but they all can only extend life a bit. Some might get an extra 6 months, others 3 years, and I have no idea what Lu177 will bring me.
Immune therapy also looks promising, but Provenge gives only 4 months more, although a few men have had 9 years extra life so far. Some good IT work is being done at Marsden Hospital in UK, ( they gave us abiraterone years ago ) and they are getting benefits with IT to about 15% of patients. IT is just so hard to get right because the complexities of biology is just so extreme.
Thus death rates for cancer is only reducing extremely slowly.
So life goes on until it just does not. I have revised many silly ways of thinking and I conclude there is no God, because God is an invention of collective imagination because every tribe of humans soon felt there was a God around, once their brain evolved to big enough to imagine things. So they started to believe in God ideas, because it led to a better feel-good existence because the tribal ppl battled with each other, predators, parasites, diseases, a short life, and with their rabid ignorance about their worlds. Goodness without involving any God is not a bad idea to practice; think of the 7 virtues, avoid the vices, and maybe you end more peacefully than if you die wanting the afterlife that appears to be yet another silly unsustaining idea. I do love Science a whole lot more than Religion.
Anyway, this spring morning here is turning sunny, and I'll cycle out to a cafe for lunch, then to another for a coffee, and life seems fine to me.
I do not need Farcebook, Twatter, or a mobile phone. I am not in debt, I have low anxiety, and nobody hates me. Compared to millions if not billions of other men on Planet Earth, I am having an extremely good life, because right here where I live there are many ppl with good will, and imbued with trust, and who care, despite what little they might ultimately achieve with cancer.
Well, if my grasp on life is fabulous, then I might be a pop star, but, many of us boring Old Bar Studs can say, pop stars do have fabulosity in their lives, at least for a little while, but so many die so early that whenever a pop star sings one line of any song, or tries to be coherent with an interviewer about something 1/2 serious. Us survivors who prefer classical music will just smile, and think, another slight shooting star, not too bright, and we suspect he's gonna shoot up soon.
So have to humbly suggest that my grip on life is not what it seems, because I am an extremely temporary citizen of this crazy Whirled, ie, that place spinning around as it orbits a sun, with everyone being whirled around in life by themselves, others, or whatever comes along, and tryna figger it all out, and ending up admitting that nobody really knows why Existence exists.
For awhile I thought the meaning of life is that it has no meaning.
The Dalai Lama said MOL was "to be happy, and useful"
Well, most ppl have to be useful or they cannot be happy. Happiness seems to depend on usefulness, and some argue youse gotta be 'appy or youse is useless.....
But in 2012, I officialy retired from the army of self employed minor entrepreneurs who knew he'd soon get a pension after quitting their low paid job. I put a notice at my website index page saying, basically :- "Folks, I am done with werk, OK, and through with fixing up all your old electronic gear for peanut pay, so go away and leave me alone, OK"
I still got asked to fix gear for extremely low pay lower than anyone was earning while they sat with fat arse in Govt office getting $50g a year.
But I did actually stop werk. I accepted the $400 per week old age pension. WOW, seemed like I was filthy rich, and I paid off minor debts and did not have to worry about cost of coffee, or cost of new bicycle tyres, nor take any shit from anyone. So when I became quite useless, I felt FABULOUSLY HAPPY !.
I then figured out the Dalai Lama was quite wrong about life's meaning, I could be useless and extatically happy. I figured out that no matter what I figured out, there were no huge meaningful conclusions which meant very much to me, and nor to anyone else because the world ignores ordinary ppl, especially Old Bar Studs of 70 who are poxed up real bad with some horridly uncool old men's disease. You might figure something out, but all the yung are hell bent on making all the mistakes I avoided making, and they don't wanna be told.
But in a way I am happy not to have had children. I sure was a Reluctant Breeder, happy to marry, but slow to want kids, and I wondered if my progeny might be able to leave the world in a better place than when they arrived.
No easy answer yo that dilemna.
Anyway, you should be very happy I didn't breed, because your kids don't have to scramble against mine to gather up enough resources for themselves to survive into future. My greatest contribution to stop Global Warming was to keep Mr Rodger out of Ms Pussie, and not listen to pop songs. I've done my bit, and besides, I prefer a Cannodale over a Maseratti.
Today I had a very nice little brisk 20km cycle ride after lunch at a cafe where a Japanese waitress and I fell about the place laughing at what each of us said to each other, in broken English. Then I had a nice little inject of Lucrin in the bum at local docs to stop me balls from producing that dreadful testosterone stuff. But truth be known, if I quit the monthly injections, my balls are so withered to nothing that its highly unlikely they'd ever work again. So I'll just dream about Mrs Pussie, while alive. Dream, but no nookie-nookie, its OK, the ladies can't even cycle anywhere with me either.
Not a bad day here, lovely spring flowers everywhere. But of course we might all think flowers are the sort of things that old ladies are very fond of, and sure, they are generally, but I know that when you are looking at flowers on a bush or a tree, you are seeing plants in the middle of having vegetarian intercourse; the plants are going Hard At It, male plants spewing pollen, female plants taking it all in, so, ya just can't get a male human mind off sex for very long. Flowers become obscene when gathered into a bunch after cutting them off the plant..... dismembering......ahh.
So, cool up, ain't really too much wrong with sex providing nobody gets hurt.
But of course sex and its aftermarth keeps teams of police, lawyers, doctors, farmers, builders well employed. A few even manage a bit of happiness. And what is the least said sentence you might never hear anywhere?
"jus lie down 'ere luvvy, it won't costyer anyfink"
Oh yeah? I didn't mind not paying the price. Now it must be clear to all that prostate cancer and its treatment can cause full derangement of a man's mind. Pca attacks a man in the very place he wants to keep in working order.
What cruel humour hath Aunty Destiny? But I hope in my case my lack of seriousness will lead to more smiles than tears, and as my chemo nurse said to me, "Patrick, if youse ain't got a sense of humour, get out...." And there I was, hooked up to a bottle on a pole, and poison was dripping into me...... and I was just lying down as she'd suggested, and it didn't cost anyfink, and Medicare paid for both of us to spend time together.
I am continuing to sit every day upon Puff The Magic Prostate Grenade, and now it is slowly exploding......
Hey Chugach! I was diagnosed with Stage 4, GS 9 at 47. PSA was 500 and the tumor filling huge part of the pelvis. After combined ADT and 6 Docetaxel infusions plus some supplemental regimen the tumor is 100% gone, prostate is normal size, PSA dropped to 0.4 and a few mets I had are in the process of healing. Thus, early and strong approach works. As does the attitude and active lifestyles help with the coping.
I'm being treated at UT Southwestern Dallas, so it's not close to Alaska by any means. The team here is solid - they are researchers and clinicians who work together. I'm also getting a second opinion at Fred Hutch Seattle - another great facility. The MO I met there was Heather Chung.
I had been to Alaska in 2014 going through the Queen Charlotte, Dixon Entrance, Sitka, Gulf of Alaska, Kodiak, Dutch Harbor, Bering Sea, Aleutians, North Pacific while delivering a trawler to Kamchatka, Russia. What a beautiful part of the world! I want to make sure to leave another day to visit it and enjoy the wilderness and grandeur. I also have young sons that I love and want to spend as much time as possible with.
Fight on, chase after that elusive cure like you're hunting a golden deer. Welcome aboard and enjoy the ride
Thanks - appreciate the info. I too have spoken with Heather Chung. She seems great. I was just dropping by different facilities for blood tests and quarterly scans talking with different MOs along the way. Seattle seems like a great west cost option.
Thanks guys- I hear what your saying about living with it rather than curing it, I’ve heard that loud and clear. The first MO I saw told me I would likely die within a year, WRONG answer ... so I found a different doctor! Can’t solve this - find someone smarter!!! The ‘Earth also used to be flat’ until it was round. If you can kill most of it, why can’t we kill all of it? Thanks for the tips and encouragement. Too many mountains left to climb to let this ruin my plans!!
How are your white blood cells holding up to chemo? Are you having any other side effects that we may be able to advise how to mitigate. We are all here for you. I hear sportfishing was pretty good at 7 mile for silvers this year.
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