I am a wife whose husband was supposed to die several years ago. I used to post on this and other sites in the first few years he was diagnosed with Stage 4 with bone mets on his spine.
*2013 age 65 PSA of 147 Gleason 7 (4 +3), eventual discovery of anterior prostate tumor and bone mets on spine. Prescribed Lupron and Casodex. He declined radiation and prostatectomy (to debulk the tumor) Research suggested he had a 23% shot at surviving 5 years. Drug side effects manageable. We started travelling a LOT more
*2022 age 73 PSA just jumped to 2.6 from 1.3 after the umpteenth drug holiday (if PSA down for a year, he takes a holiday that generally lasts for 6-7 months.)
*Also, Viagra NEVER stopped working (even when one doc said it wouldn’t!) . And on drug holidays, he turns into a 17-year old. It is use it or lose it, for sure.
We are so grateful knowing others have had rougher roads with this pernicious disease
Our path has been to surround ourselves with trusted medical personnel, always putting quality of life FIRST . And make our own decisions, weighing relative risks/rewards of over vs under-treatment.
And we are full-time travellers now, hopping from country to cruise, completely untethered to a place Live your life Live your life
Good luck to all. . .
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Haliday
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We know we are lucky. I lost my home in the 2008 housing crisis and he lost his in a divorce. We just never bought another home and find renting more affordable for traveling. Affordability is key. The cost of living in many of the countries we stay in (generally for 2-3 months at a time) is so much less than California, where my last (and I do mean last!) job was. Take care.
Thank you Haliday. However what to do, if at 80 in addition to my stage 4 prostate cancer, both my wife (68) and I are incurable workaholics, even though being more than comfortably well off.
Just like Haliday and hubby are trying to squeeze every last drop of goodness out of life , as a couple, while they are able …. there is nothing wrong with recreational working as you are doing as well. Obviously you don’t need to work , so at 80 … work for you is more of a hobby or recreation. If that’s what makes your boat float , then more power to you. Personally I’d much prefer Haliday’s wonderful life style …. if I weren’t so disabled by adt - PCa ….. but that’s just my druthers for my own end times QOL.
The kool thing is that it’s all good yayahahahaya yayahahahaya. Some people just like to work ….. whatever …
Definitely recreational for me at 12 hours a day 5 days a week and the wife doing roughly half as much. So literally time flies between weekends when we do our best to enjoy every minute thus leaving virtually no time to harbor dark thoughts. So to all the members of this esteemed club I can only hope that our dearest wishes be granted as we go forth into the great unknown (It's 10 pm and I've had quite a few cocktails with my dinner, hence the poetic mood). So to paraphrase Scarlet in Gone with the Wind: "After all, tomorrow is another day".
Woooooo hoooooo I hear that brother ( cocktails ) …. Yessss yesss yayahahahaya yayahahahaya. That’s one of the ( many ) great things about our group of beautiful souls …. Different as we all may be … still we’re united , all of us , brothers and sisters in a common bond as well. It’s a profound, yet poignant, glue that holds us together. We’ll all set those “ dark thoughts “ ( you mention above ) aside … tie a ribbon around them and put them away in a drawer for now. We’ll focus on those cocktails, traveling to great countries , pursuing our recreational interests to the max and look at the lighter brighter side of things to our best …
🎼” dark thoughts ….. we do’n need no stink’in dark thoughts “ ( as in “ badges … we don need no stink’in badges “ .. Comedy movie … Blazing Saddles ) .
Now I think I’ll follow your lead and ice up my Margaritaville machine brother. Got my Margarita glasses sitting in rim salt, my little paper umbrellas …. put on my Panama hat , Foster Grants , and swim suit and go ruminate in my jacuzzi , in my banana tree jungle , in this fancy 75f flower bloom drenched spring afternoon.
You are right , that line originally was in the 1948 film Treasure of the Sierra Madre. It’s been quoted and parodied many times over the years. My quote was from the 1974 Mel Brooks comedy Blazing Saddles. In the 1948 film it would have been a “ dark “ use of the line … it was a funny uptempo quote in the Mel Brooks movie. I quoted the upbeat funny version …more in context with this post that mentioned dark thoughts. Another movie buff … kewl.
1974. That helps me place where. I was visiting a cousin in Atlanta and we saw Blazing Saddles at the theatre. Line waiting to get in must have been over a block and half long. Atlanta must be pretty hip. J's were being passed thru the waiting line back then.I still love B saddles and Dr. Strangelove are still high on my list.
Then again so many movies.
Another I don't mind pulling up once a year is Deadman. Mainly for the train scene as the main character notices the countryside and people getting on the train change as he travels from east to west coast and of course the Neil Young soundtrack that goes with it.
Yep I’m well familiar with Atlanta … back in the ‘60s at least. Yayahahahaya parts of it were a bastion for the ‘ movement “ … Peachtree street, Piedmont Park … places like that. I had a crash pad just a few houses off Peachtree , near the park. Piedmont Pig ( a famous lady personality of the era ) crashed at my place. I could tell stories for months about Atlanta. Atlanta was a strong mob town too … businessmen with many desirable products to sell and even loan you the money to buy the products yayahahahaya. Scary really , but a thrill at the same time. Those great movies like Rocky Horror Movie Show, Blazing Saddles, Yellow Submarine etc . Were very popular in Berkeley ( my home town ) and in the movie houses on Hollywood Boulevard in L.A. ( Laguna and Big Sur, Tujunga Canyon… my homes away from home ) … everyone would dress up like a character and mouth your parts during the movies. I dressed like a vaquero and wore twin cap guns, the BIG hat , vest , fuzzy leggings, boots Yayahahahaya. Great fun. A whole lot more than joints was passed around at those movies . Lots.
Hard to believe that was more than 50 years … half a century ago. Yikes ….
Sometimes we all need to stop and smell the roses, before you can't any more. Life is good. Don't let it slip away. You can't take your money with you. Live rich and die poor.
Be rest assured it's not about money and we find time for roses and more,. If anything its about keeping one's mind active and fit like any other muscle in one's body. Fortunately both my wife and I have professions requiring short and long memories as well as mental agility so this keeps us young in mind.
We adapt to everywhere. But this past Sept- November in Laglio, Italy on Lake Como with side overnight trips via train and bus to Monza (and the Italian Grand Prix), St. Moritz, Tirano, Lugano, Como, Bellagio, Bologna, Milan and Lucca is right up there. Here’s the view from our little apartment.
Yayahahahaya yayahahahaya I dunno about the peels .. I do grate them into food and drinks for “ zest “. Central California has what seems , sometimes, like endless miles of citrus groves. We even have a local tourist attraction called “ orange blossom trail” . Guess I get pretty jaded about citrus due to the over abundance. For the most part ,they won’t be in bloom for a month or two … they bloom late compared to stone fruit trees. You can Google: orange blossom trail, Fresno …to see more about it.
We are unsure. A new batch of scans happening this Friday. We declined radiation. Or there and not growing? Or? His PSA jumped from 1.2 to 2.4 in two months so suspect this latest drug holiday is coming to a close.
Update. Scans show small tumor on spine has not grown. He starts Lupron again, now, as his PSA has doubled up 2.6 in 2 months. Here’s to the NEXT holiday in 2023.
Thanks Haliday for this uplifting message. Quality of life should be included in first line of SOC. Wish you enjoy company of your life partner for another 20 years.
No medical advice … but congratulations on your great recreational QOL lifestyle … I’m envious yayahahahaya yayahahahaya. Good for the both of you , …. No matter what comes ahead .. you’se guys are in the grove … no wasting your lives setting around wringing your hands feeling sorry for yourselves. Great …
My doctor yelled to young female intern, "Hey, come here, I want you to feel what a large prostate is like!" I don't know who was more embarrassed. Think he was in next room giving himself a DRE. Nothing embarrasses me anymore.
😱 😁 Sounds like my urologist. During a routine visit from a referral in November of Covid19 Year One, he did a DRE and told me my prostate felt perfectly normal. Good news, I thought to myself. Three weeks later I had to have a biopsy done because of the psa test he ordered during the visit, and the attending biopsy doc immediately said he could feel a large nodule on my prostate, before even doing the biopsy or ultrasound. It didn't sound perfectly normal to me. Can't say much for the urologist's bedside manner, either. After the biopsy I was in the exam room waiting to hear the results, which I suspected would be bad. The urologist walks in, says "Hi.", sits down, and immediately says "Well, it's cancer, and it's the aggressive kind. You are at a fork in the road, you need to decide either to have your prostate surgically removed or start radiation treatments." I'm sitting there thinking "Wait, what?! Slow down, doc! You had me at "it's the aggressive kind!" Let me wrap my mind around this a while before I decide on what course to take." He must have seen my reaction because he then said that I had some time to decide what to do and that they would give me some literature to read, which was pretty much also shock and awe and not very comforting. But hey. it is what it is. It could have been worse.
I was lucky enough to visit many wonderful locations as part of my working career. Now I can still go to anywhere I want for free. I just crank up the tunes, strap on my headphones, close my eyes, and let the music carry me.
That is great news, it brings so much hope to those on this site, 5 years in, ADT with chemo in 2018. It shows that you cannot give a time table on this disease, as one put it on a prostate news - never give up and never give in- that is my new model.
That sounds like such a great lifestyle and so much fun. Hopefully the scans are good and you get many more years travelling like this. If you get to Ireland look me up sister.. the wives and warriors all family now… that’s how I feel. We all understand each other.
What a wonderful story! I'm so happy for the both of you.
My hubby is in his 5th year of the battle (war).
He's been thru Casodex and gets Lupron every 6 months. He started with Taxotere, then Zytiga, then Xtandi and now Jevtana every 3 weeks. He's on his 14th round now. His PSA is pretty firmly set in the 20's.
I was wondering what medication your hubby has a "holiday" from?
Again, so happy you're traveling and loving... that is living life!
A combo of a 3-month Lupron (or more recently Eligard) along with a daily Casodex pill. That has been it so far. . . Since we are headed for 5 months of consecutive travel before are back at our home base, the doctor suggested a 6-month injection this go-round.
So he had no Radiation at all?I'm only asking because my husband is unable to have the SOC Radiation treatment for a variety of reasons.
Also, did he make drastic changes to his diet? Also only asking because I'm having trouble getting my husband to cut out beef. He does eat massive amounts of vegetables, nearly no sugar and zero "junk food" or fast food.
Anyway, thank you for an incredibly wonderful post and positive energy your way for the week ahead.
No. We looked into side effects and declined radiation which his doc at the time was fine with.
We have not altered our diet dramatically but we DID commit to more regular exercise and walking. We try to walk 2-4 miles at least 3 times a week, and use resistance bands or weights for 30-45 minutes another 3 days a week. We were already keeping track of sugar (I am working to keep my glucose down) and he tracks every calorie with a goal of 1900.
We don’t keep junk food in the house unless we have houseguests. We eat meat 5 days out of 7 because we love it BUT we keep portions smaller (and share entrees in restarants) than we used to. We buy the thin pork chops and steaks. I make a lot of stir-frys. There are 2 Manhattan nights. We have kept our weights within a 10 lb window this past year. Tuesdays before weigh-in Wednesdays tend to be salad-only days😍😜
I have a deep resentment around “shoulds” and too many rules so we just take a moderate approach to most things and allow ourselves indulgences without stressing. Chili and cornbread for Superbowl Sunday! And beer. Yes.
Thank you for sharing your experience! Really appreciate it. Might help things if I quit trying to micro manage every aspect of his day and just let him live his life 😉. He had HDR Brachy to the prostate, but they're probably not going to do the few nodes or suspicious bone met. He stays very active because we have some cattle and a few horses.
Anyway, love your story and philosophy of living!!!
And I'm certain your current lifestyle is as "economical " as living in California. We are hoping to leave the state eventually as it's just become too expensive to live here. We own our property, but still hard to make it.
You hit the nail on the head! We left California for a small town in Washington State in August 2020. We laugh about fancy restaurants here and overseas. Clearly they have never eaten at high-end restaurants in SF! We could never have afforded to stay there. We haven’t owned a home since 2012.
The less I try to manage Nick’s life, the happier we both are. . .it is just a matter of lip-biting practice, I promise you.
LoL !! And YOU just hit the bullseye for me...practice practice practice.Jim will appreciate your post when I share it with him 😉
I think your post really gave a lot of people a boost and a dose of "what's possible " and I'm not just talking about the cancer survival part of it, I'm talking Living!
That sounds wonderful! Did MO suggest chemo/taxotere? I am also surprised VIAGRA didn't mess up with the Lupron/Casodex treatment. Good to know there are alternatives.
I'm not trying to be a smart ass. Just trying to be helpful especially since it's rare for me.Viagra will have no effect on cancer treatment. No effect on testosterone.
Viagra works to enlarge the penile blood vessels to allow more blood to engorge the penis.
Engorged hmmm. I sure miss that come to think of it. ha.
This post is fantastic. Too often folks are ridiculed on this platform for taking holidays from ADT. The way I see it, we're going to die eventually anyway, and right now I'm wondering if living the life of a fat slob because of treatment is really better than cashing in a few years early, and enjoying every day as a MAN again. If the prostate Cancer doesn't get me, the heart disease from obesity surely will. Enjoy your time together, I'm envious
We agree. We looked at the research and holidays didn’t appear to have any relationship to when ADT stops “working”. We look at EVERYTHING thru a quality of life lens.
Chemo nor Taxotere have never been suggested. We are very pleased that Viagra has NEVER stopped working and the doctor was very surprised. I tell every new oncologist we have had because it is a shame to automatically give up that kind of intimacy. We have always had a “whatever it takes” attitude in that department. He doesn’t “feel” it like he used to and when on the drugs doesn’t have any libido. But he does it for me. Now THAT is love🥰🥰
Thank you for your post. It gives the rest of us hope when Doctors have presented nothing but GLOOM AND DOOM from day 1, with no regard for the patient or how they are to cope. Stage 4, Gleason 9....and not one good and uplifting word from my medical team...this after delaying my initial diagnosis biopsy by 18 MONTHS! You just gotta live each day...and forget that you are a Cancer Patient every day. (Easier said than done
It sounds like your husband is following the playbook from Dr Scholz' "Invasion of the Prostate Snatchers". Don't submit to invasive procedures or even radiation. Just knock it down periodically with ADT. I was not a candidate for and would have refused RP after prior TURP surgery. I was steered toward radiation but chose HIFU instead. I've had excellent quality of life in the 5 1/2 years since that surgery. My PSA is slowly climbing. I think I'll go with the intermittent ADT treatments rather than more drastic treatment. It was good to hear your husband's success with this minimalistic treatment approach.
It’s up to us how we define QOL MORE IMPORTANT THAT WE LIVE THAT MOMENT OF SERENITY AND THE DISRUPTION WE ENCOUNTER MAY ALL US BRING CHEERS AND TOAST TO EACH OF US
I think we like each other more because Kalibur and me both are on path to Enlighten ment...only that Kalibur is way ahead of me on this path. His Ya Ha ha ha laughter is the sign of a person who is detaching from worldly world and moving towards an enlightened state . I agree with kalibur, every one is amazing in this forum.. just like various colored and flavored flowers in one flower vase.
Thank you for sharing - Great journey for both of you and may it long continue!
Small minority like your husband with your support choosing QoL over quantity and some of this minority succeeds when others from this minority fail.
The choice is always there.....
Very often family members put pressure and force person with PC to chose treatment options against his will. I'm glad that you supported your husband in his decision.
Each person with PC should be able to chose what is more important to him QoL or quantity... without pressure from doctors and/or family members. People have different values, circumstances and view of life - I understand and respect either of these choices.
When person knows how to make an informed decision without pressure and then knows how to own it -he/she should have no regrets!
Thank you Haliday for sharing. I am pleased to read that your husband has continued to do well with androgen deprivation therapy (Lupron, etc.), even with bone metastasis. I also see that your husbands takes breaks from the ADT. I have been on ADT for over 4 years and I too would take regular breaks from it. Just recently, there has been metastasis to my bone. I believe this metastasis to bone occurred because I took too long of a break from the ADT. I am now back on ADT. I am going to see my physician tomorrow about this new development of metastasis to my bone. Seeing that your husband has done well on ADT, even with bone metastasis, is good news to me. I hope you and your husband continue to have a happy and healthy life. All the best.
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Introduction - 56 years old, stage 4 - bone mets, lymph node and likely lung involvement
Adv stage 4 PC PSA rising!
Stage 4 without symptoms 
Stage 4 Bladder Cancer?
Chemo for an 86-year-old with stage 4 PC.
