Was diagnosed about a year and a half ago, psa 11 gleason. 9. Been on a vegan diet, cannabis oil every night, my psa went up to 23 stayed there till a month ago the started to go up, at 135 now so went to RWJ Cancer Center, going to be taking casadex, then lupron and Zytiga, predgnisone, have had an active sex life all year, guess that's the end of that! Lost 40lbs on the diet, still drink moderately, weigh150 , used to ride my bike 40 miles a week, always been active in shape till my diagnosis, depression, sleep a lot , lost my photo business to technology six years ago after 40 years in one year! I'll be 69 in July, though most people think I'm in my 50's. Writing a novel, afraid the drugs will screw with that, also a musician. Just fearful of the side effects and muy quality of life, if my sell by date is only a year away I'd be thinking not to do anything, have some metatsis but not much physical pain, more mental. Ok open to anyone's thoughts, critiques, opinions.
PCA stage 4. : Was diagnosed about a... - Advanced Prostate...
PCA stage 4.
Keep going as long as you can! You have a great head start.
Thanks Yost! Was thinking I let it go too long without drugs!
Past doesn’t matter now. No looking back. You can do a lot to improve.
Thanks Yost! Was afraid I let it go without drugs too long!
If your psa is at 135, I would begin treatment ASAP. You have a lot of years ahead of you but sadly it's treatment time.
It’s time. Don’t F around
You can do this. You can find ways to make your partner and yourself happy even while on hormone therapy.
Get back on the bicycle. Cycling is a great form of exercise especially as we age. Plus exercise is supposed to help with depression.
There is a lot good support here on this forum. The guys here know a lot about the medical advances for prostate cancer as well as tons of information about different supplements and foods that can help.
Does the cannabis oil help with the pain ? My husband found that the Sota magnetic pulser helped him some with bone met pain. He also takes about 6 Bosmeric-SR a day - I think this has also helped.. other curcumin supplements may help as well..RevGenetics has a good one too.
Keep playing the music! When my dad was in the ICU .. he thrilled the nurses by playing his harmonica for them. After that how could they not give him a defibulating pacemaker!
Lots of hugs..and prayers too.
Softwaremom
Thank you, appreciate your support,trying to got my novel done, so usually need to take a break from writing, but love this site, and will be more active when I have the energy!
Let me have some of that energy when you find it..
I shouldn’t be offering advice here. I’m one still looking for advice, but please don’t let the depression take hold. Esp being a man with many talents. My dad lost years of any productive life because he wouldn’t accept help.
I’d also like to know how the cannabis oil is working?
Everyone has equal rights to offer thoughts and advice. I like as many different points of view as possible. I’m More like to find a good path by trying many.. Some trial and error. No different than the rest of life . We learn as we go. Or not. Acceptance is the most crucial . Accept help and our lot with APC albeit twisted and at times torturous . It s all we have.. there is beauty beyond damed treatments..
Well all I can say is that using it for a full year it kept my psa steady at 23 which is high but when I ran out of my supply, I was making my own, my psa doubled in a month. So I think the stuff has some validity to it’s worth especially if you are in the very early stages of non advanced PC. But I don’t think it’s a curealll until they do further research, it’s uncharter territory. The FDA did put a patent on it back I believe in the eighties! I was making suppositories, but then read that it couldn’t be absorbed into the Prostate without hemisuccinate, but mine was already outside of my prostate the first month I used it it did drop my psa from 24 to 17! But then a steady 23 for a year as I began eating it every night before I went to sleep. I think hemissucinate is not readlly available to the public. Damn the torpedoes. Full speed ahead!
Exercise exercise exercise. Especially weight lifting while on lupron. Huge difference in the way you will look and feel. But you need to force yourself to work out hard. Good luck my friend. You will come out ok on the other end.
Schwah
Weightlifting on Lupron. We should make that work -out video. Frieghtenly funny and scarey at the same time. The Trouble is that we might be able to sell a million copies at the rate of expansion with APC in modern man.
There’s a part in my novel, quite a major part of the character dealing withAPC and ADT therapy.
I’d like to read that..
I can send you pieces of my novel if you wish to critique, but I don’t believe that would be allowed on this site, so I don’t know how to get them to yo besides email which I would gladly do and appreciate an honest critique.
I'm interested in your triglycerides & HDL cholesterol on your vegan diet. Is it low fat?
Most on the Dean Ornish low-fat vegan diet see triglycerides increase. The HDL-C:Triglycerides ratio is a surrogate for insulin resistance, & IMO, the latter is something that has to be dealt with to slow proliferation.
-Patrick
I thought the low fat bugaboo was gone- they killed Ike with that. Fat does not make you fat.
When they remove fat they add calories and sugar. We have never had such big people in this country as we do since the government started pushing low-fat eating. If the FDA is for something- go the opposite way.
Actually my bad cholesterol after a year on a very strict vegan diet dropped from 185 to around 160. Tryclycerides went down too, and I still was drinking a few cocktails a day. Now after two years on the vegan diet I’ve gone more to vegetarian diet, still no red meat, processed foods, white flour, etc. just some fish or chicken once in a while and make pizza using chick pea flour and minimal amount of mozzarella cheese made with skim milk and sometimes with humus instead of cheese, no other dairy except once in a while a little goat cheese that made with a vegetarian rennet .
My bad cholesterol was 285 Not 185 sorry for the typo!
I agree with others that its time fortreatment. ADT for sure. Get help for depression and force yourself to get back on the bike.
You will soon ind the new normal we all live. Putting up with side effects that to some of us are almost debilitating. You will probably look at your music in a different way and write your novel with a different outlook but be happy you have those talents to keep youself busy. Its all sucks with the treatments we endure but we have to go on. We have no other choice. It may be that you side effects may be nil. For you i sure hope so. Best of luck going on!
Thomas
to: Captsquid2u 68 years old? Hmmmmm I've got dandruff older than you. Come on now don't give up all those activities that make you look in your 50s. Side effects smide effects, you'll learn to live with them. j-o-h-n2u.
Good Luck and Good Health.
j-o-h-n Tuesday 05/08/2018 11:47 AM EDT
Sadly too many put sex above living. At a Support Group meeting years ago I met an 82 year old guy who refused all meds because he didn't want to give up sex. The Stones got it right- you can't always get what you want. I made getting rid of the cancer #1 and that was 15 years ago. Mine wasn't as advanced as many people posting here but it was a Gleason 8.
Awesome alderman , great success in your history. Hope this can continue for you. The mantra was there is no life after 3o.. better to burn out than fade away. They tried to burn out. You’ve seen Keith R . He probably has a transfusion machine at home. A lot of smack. Not tha easy to burn out eithe4 for an6 of us. We fade away with APC. We are here I’m 57 mick and the boys in their 70’s.. take what I can get..
Captsquid2u, I’ve been on Zytiga for 2 yrs, 8 months, and for the most part I can’t say I have any side effects that I can attribute to the Zytiga. I’ve been on Triple Androgen Deprivation Therapy for 17 years, 14 on Casodex and almost 3 on Zytiga, I’ve lost significant muscle mass and strength but I’m sure it’s because of the 17 yrs on ADT. Every month when I request my next 30 day supply of Zytiga the pharmacist ask if I have any new side affects and each time I make a special effort think back and every time I’m very happy to answer NO.. Since being on Zytia from day 1 my PSA as been < 0.01 every month
Daily Zytiga 1000 Mg (4–250Mg)
Prednisone 10 Mg
Lupron – every 3 months
Any additional questions, just ask.
Wishing all of us NOTHING BUT THE BEST I’m 73 and 0.0 PSA
Spitzz
You HAVE TO GO to the Prostate Cancer Conference, Sept. in LA
Yes, Gleason 9 is nothing to be trifled with or complacent about. I think someone's been thinking with their small head rather than their big head, if you catch my drift.
Hi I am interested in what you do. I was had a base PSA of 130.4 in 2005. I used zoladex first, but Lupron works the same. I also used casodex. My Psa dropped quickly and with 5 months was undetectable. Hang in there the drugs can do amazing things for you, 13 years later I am still here. Who is your DR at RWJ ? Thanks
Hi Friend, we are in this together. No two people are alike when it comes to PC.I like you am afraid of all the side effects of all these drugs.I am going to my doctor as I need a CAT scan & a bone scan. I guess I'm most fortunate as my PSA has finally reached the tipping point. I'm at 0.29. It sounds miniscule to most & this is after a RP in 2000.I feel fine, I'm 66 now & we all get some pains ... I worked hard physically all my life...High pressure welder & Industrial Mechanic, so my pains are justified.So what do I do if everything comes back negative? Keeps me awake at night. Good luck. DON'T EVER GIVE UP!!! Hugs to you .
I'd recommend adding juicing to the vegan diet. It seems to work for me. Lost a lot of weight like you.
Remember your "sell by" date is not the same as your "use by" date.
Nothing better than a photo on film.
Joe
Hey Captsquid2u, I’ve done the oil everyday for three Years now. . I wouldn’t stop it no matter what . If you like it. Advanc3d Prostate C is an emotional and mental whirlwind. Sometimes my blood boils . I spent funds with a lot of naturalpathic and traditional med cost the first 3yrs. I had an emergency fund. Didn’t expect disability at 53 and peeking at the poor house. You might really get some fuel for the blues music the longer you’re run without T . So what once made us the “Man” that prowess now will be the end of us. Time to get in touch with our feminine side. , . Sleeping , depression , it’s all normal . Some how dig as deep as possible and stay active. Take care, if I can do it , you can too. Persistently heal your mind body and soul altogether. This is a test. There will be a quiz later., no really , we do our best, no magic bullets. Archaic treatments and side effects are the norm until one can get on the back of APC instead of being completely trampled by it..Then it dealing with side effects and their symptoms . Sooner or later APC is going to do the tango on all of us if something else doesn’t get us first. The lesson is life is short. Don’t waste it all on gloom .. Things should get better. We should consider ourselves very very lucky to have small physical pains now.. GOOD LUCK ON THIS ROAD...ITS BUMPY! As hell...
Hey Captsquid2u: Don't give up! I'm getting chemo now and have the usual side effects of fatigue and shortness of breath, but I keep my spirits positive because my Oncologist says I might still go into remission, plus there are other options in the pipeline....many people have illnesses and disease worse than us....don't "die a thousand deaths" by being depressed every day....someday you will die, I will die, we all will die, but don't experience the impact every day by worrying about everything....keep pursuing treatments, and any day that you can still see, talk, walk, laugh, go outside, ride in a car......you are doing better than a lot other people.....Ron in Connecticut
Thank you all for you’re reply’s , I have been heavily involved in writing my novel and helping a lost dog rescue site,, have been trying to not dwell on my Cancer have changed my oncologist, still on a Lupron shot every three months, Zytiga, and prednisone after 6 months my psa is at 16 still high but it had gone up past 350! My oncologist says the Mets to the bones have stopped and the cancer is receding, so I’ll keep fighting the battle. No sex drive testosterone went from I believe around 800 to now 20! I get depressed and tired a lot but bounce back, yeah the roller coaster ride. Feel much love here and feel guilty for not staying more involved, I m just exhausted after working on my novel. Will be more active now. Thanks for all your support, I didn’t know I had so many responses! Luck and love to you all, “damn the torpedoes !”
Captsquid2u
Welcome back.. hang in there! The roller coaster proceeds..
I really don't miss the sex anymore...I now have time to do the things that I should have been doing for the past 30 years! I can now concentrate on what's important without being distracted by the 'little guy'! He interfered with my businesses, relationships, made countless stupid decisions, curtailed productivity, plus ruined my chances of ever being a Supreme Court Judge! IMO loss of libido is not such a bad thing. I tell my friends that it's like I just had great pasta dinner and someone puts a steak in front of me; do I want it? Perhaps had I lost my prostate and libido many years ago, I would have been a far more successful guy. I can honestly say that I am currently enjoying my life as much as I ever did. Some Christians may take offense at a belief that I have long maintained: 'Two things that God should have never given man...Free Will and Testosterone'.
Curtailed productivity...hahaha...
Great "Old Joke"! You must be doing something right...we are the same age and my 'little guy' has been sleeping for quite some time. They won't have any trouble closing my coffin! I enjoy following your posts.
One of these days I too will "expose" myself; however, there is no way that I can compete with your ability to “still take 300 lbs in the gym”…but I can ’still take' 9 reps of 15 kilo dumbbells!
I have been working out since I was 14 and never stopped for any length of time; however, I have always had a problem keeping my body weight up. My max was 165 lbs and I am now down to 152 and eat like every meal like it is my last. I was a gymnast in college and drank a gallon of milk/day along with ~200 grams of 'Joe Weider' protein powder, plus finished all the food leftover by the four skinny girls that I dined with. It is currently 3:00 AM here in Thailand and I'm just finishing two tunafish sandwiches and a small salad...this is in addition to the large meal that I finished about five hours ago at the 'Sizzler'.
"House of Horizontal Refreshments"...love it!
You guys are right up my alley! Went out with
Y 29 year old GF, she took me out for sushi, we’ve been friends for 6 years now And this was out first date with no sex! Kind of weird, but she didn’t mind her sex drive was not on, she was having a fight with her GF. She’s Bi or how she likes to call it pansexual. We still love each other and was havin those dry orgasms too, unto the ADT stuff started turning me into a women going through menopause! Hope to take adt vacation with her, though I’m low on funds after my photography studio crash Ed after 40 years due to cell phones. I’m 69 got stage 4 metastasis to the bone, it took me to go to a rheumatologist with my latest bone scan to fin out my cancer had metastasized! After numerous pet, ct, bone scans, was on can I use.cannibus koil for a year my psa was steady at 23. Had it checked all th e time, then it doubled Dr. told me if I didn’t start adt I’’d be dead in a year! So now on Lupron 3 month injection, zytiga 3 a day And prednisone 10mg. Will keep in touch, love the humor
Hey Bro, Sorry to hear about the crap you’re dealing with; however, ‘hanging out' with 29 year olds, having an “active sex life” until 68, possessing musical talent, novel writing, etc., puts you in a class many guys could only dream of! I lost my prostate at 60, hang out with women my age and older, have zero rhythm (I’m a Catholic and that’s how I ended up with two kids), and my writing ability sucks! We are happy that you decided to join us even though we wish that it was for a reason other than PCa. There are some very knowledgable guys here that will ‘hold your hand’ during this journey until something that ‘really kicks prostate cancer’s butt’ comes along.
Nalakrats appears to have found his panacea; however, I’m a little worried about him. At 75 with a T level of 759, still experiencing “damn good---and available daily” orgasms, chasing 300 pound “Babes in the Gym, in their tights while he body builds”...'oops', I meant to say, “Still taking 300 lbs in the gym”, no telling when he just might ‘meet his maker’ with a smile on his face!
Anyway, hang in there, read everything that you can on PCa, try some of the suggestions on this forum, and most of all, try to limit thinking about this sh*t!
I had been taking prescription sleeping meds for 25 years until someone sent me an email about a year ago which enabled me to immediately stop. It read: "Worrying about tomorrow, spoils the peace of today.”
We’re here for you!
Ron and the rest of the gang.
Thanks Ron! I needed that! But just wish inhad more energy, hope you’re doing wall!
Welcome to the club! 69 , I’m 57 we are all in the same leaky ship.. trying to stay up-right .. Everyone with an I-phone is a photographer now.. I collected fine art photography in 1990. -Digital , as you know has changed everything. Keep flying !
His face rang the bell.
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