Hi my name is Barry and I'm 58 yrs old with stage 4 metastatic prostate cancer... Involvement of the spine and rib.... 3 lumbar, 1thoracic and right medial rib.... I'm presently on eligard and my oncologist at the VA wants to add taxotere.... I however have decided to discontinue treatment altogether..... After much soul searching and talks with my loved ones I have come to the conclusion that quality of life is much more important to me than longevity..... I find (for me personally) that the physical, emotional and mental changes brought about due to the hormone therapy is simply unacceptable.... I would like to know what other's who have made similar decisions feel. Thanks, Barry
My introduction and my decision - Advanced Prostate...
My introduction and my decision
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Barry123456
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Hello, I was 49 years old at my first diagnosis in 2015.
PSA was 1016, Gl=8, stage 3, mets in bones and lymphs. In addition to the hormone treatment with lupron I had 6 cycles of taxotere. All the side effects were bearable. I would do it that way again.
Best wishes !
Thank you.... I'm glad that things are going well for you.... I certainly don't advocate for anyone to not get treatment.... It's just me and my intrinsic nature to a great degree. The things that are most important to me as an individual just happen to be the ones that the hormone therapy affects the most..... My sex life what's left of it after the surgery.... My ability to concentrate and focus.... And the loss of control over my emotions..... I deeply respect the courage and will of people like yourself who can conquer the things I'm incapable or unwilling to.... I hope you continue to have success in your battles with this disease.
Skip the chemo and do other standard care. You will be the same person for many years. Find private doctor and get away from VA. They are too depressing sometimes, unless you get a good VA center.
Mine is the Atlanta VA.... Known locally as house of horror... Unfortunately I have no other insurance, so I'm stuck
Also in Atlanta. I thought va uses Emory doctors.
They do but not exclusively
I have searched for alternatives and will continue to do so but I'm not likely to adjust to my testacles shrinking to nothing, my loss of focus, among others.... My makeup is very much one that makes these things intolerable to me personally....I am now and have always been a non comformist in many ways and anything that alters me on a fundamental level is something I will just naturally resist... It's simply my nature.... I do wish you the best and keep on the good fight.
ITCandy is right. Once you adjust to “the new” you it’s not too bad. Get some Caillis from the doc so you retain penis size and after a while you’ll find yourself getting aroused. Not as much as before but once you are it’s just as enjoyable. I have two kids and I’m determined to see them grow up so I’m prepared to put up with it. I’ve had much the same thoughts as you have. Ie chuck it all in and get back to being me but in the end I’ve stuck with it mainly for the kids. I’m now over two years in and I’ve adjusted to the new me and all in all life’s good. Just my experiences.
You may be confusing the affects of taxotere with hormone therapy. The effects of xtandi, zytiga and other drugs have fewer affects. Don't dismiss them without trying them.
I'm referring to the effects that I've already been experiencing with the hormone therapy.... Depending on what the oncologist (assuming I even see him) says on Wed. next I will decide if I will consider chemo if offered. I come from a family whose history with cancer is long and prevalent.... I actually feel a sense of relief since deciding to stop treatment. I live in a rural area and have to drive approximately 2 hrs to even get to the hospital for treatment. So it's very trying from a logistical standpoint not to mention the fact that I take care of my 80 yr old father... But that said it's secondary to the fact that for me hormone therapy is a non-starter. I'll keep my nose to the grind stone searching for alternatives that do not affect the things in my life that I hold most sacred... Death is not what I fear the most.... Living a life that for me is not life is what I fear.... Again, that is just me and I realize most probably consider me mentally deficient or at least stubborn beyond reason.... They may be correct, but I know me and I know what is and isn't acceptable to me and I would much rather have a couple good years enjoying my life... Than 5,10 or more going through constant struggles... Again, that is simply me..... Who knows perhaps a treatment will come out soon that renders this all a moot point... Until then I will continue to search for what's the best for me.... Thank you for your suggestions and I hope you think me too insane!....
Hello, wondering if you should look at the Care Oncology Clinic UK website, who are using repurposed drugs such as metformin, antistatin, antibiotic and parasite treatments in combination and reportedly have had success with a number of cancers that have been unresponsive to standard treatments - some at late stage apparently, but of course no guarantees. If you're not keen to pursue standard courses, this might be ok - well tolerated it seems. Currently clinical trials underway in UK and US, good anecdotal positives. What's to lose? You'll probably need to work with a medico prepared to have a look at it and be prepared to prescribe the drugs to you 'off label'. My husband has advanced cancer of another kind that is being treated with prostrate cancer drugs - they do tire him, but still he enjoys a good quality of life. If/when he needs, the Care Oncology Clinic approach we will pursue. Here's rhe link if you want to have a look:
best wishes.
I had my first consultation with care oncology a few weeks ago and am starting the protocol while having radiotherapy and ADT with the blessing of my oncologist. Next step is probably chemo.
Good luck brother... Hoping only the best for you
Hi Barry,
I'm 58 years old, diagnosed 6 months ago (PSA 1000+) and I hear you. I've hit bottom, became a couch potato, gained 15 pounds in record time. Although, my dog, an aussie, does limit my couch time. 
The brain got lost in the heavy fog, my passion as a software developer is over, cannot focus on the details, my company has assigned me to simple tasks, this makes it all worst.
The trappings of needing to work for the insurance, $10k average monthly claims just to float...
It's disappointment, PCa treatment is still based on 40 year old discovery, current treatments are just a facade for Orchiectomy...
So, what's my point, I'm a romantic, need to fight with what we have, is our time to be warriors, all the best...
Barry123456 in reply to
Thank you brother.... I truly feel your struggle and loss... I do hope things get better for you.... We fight I suppose in different ways and I'm for everybody's.... I saw my psa rise after my prostate was removed in 2014 from .01 to. 27 in 2016...that's when my pcp decided to stop testing my psa.... Until June of 2018 when it had risen to 6.97...in July it was 9.26 and steadily rising to where by Nov. it was 20.97...my only real issues physically were extreme sweating and fatigue... I've always had back pain anyway and my left had been numb within 6mths of surgery.... Now I have a host of others that are effects caused by meds.... And the original symptoms I was experiencing have only been magnified.... I also do not trust the VA any further than I could throw the hospital they are in....
in reply to Barry123456
Ha, I've worked on many projects for the government, CDC, State public health departments, CMS, cancer institutes, all just to pump money into nothing, it's just a society agency necessity to subsidise nothing...
Not trying to talk you into treatment, I respect everyone's decision. However, I don't think it's realistic to expect a couple of good years with untreated advanced prostate cancer.
I agree that the side effetcs of ADT and chemo suck, but my quality of life is much, much better than it was when I was living without treatment with very advanced PCa. That was pure hell. Nothing I've done for treatments has come close to that.
Sure, life is different and you have to adjust to that, but life is so much worth living. My wife is constantly telling me that she is so glad I am still here. Just something to think about. Again, the choice is yours and we all respect that.
Thank you... I'm glad things are going your way... I hope they always do.... I'm resolute however in my decision and if it's 2 years, 2 months or the time it takes to tap this response out.... I'll be OK with it..... I will adjust....but not to something that changes me to something that's alien to me.... That others are happy with it is wonderful and I do wish everyone the best....thanks again for sharing with me your experiences....
You could consider other options....stereotactic radiation to the met lesions....there is a clinical trial that if accepted, would be free...as long as you are not ductal or intraductal, should be ok---.I had one met lesion removed, and so have others had mets removed without loss of QOL--see page 4:
cancer.gov/about-cancer/tre...
after getting that you could try itraconazole with hydroxychloroquine....these are an antifungal drug with an arthritis drug... in clinical trials---should be tolerated ok with no change in QOL... see link below--
9news.com.au/2018/12/26/17/...
You could add a statin drug after that which seems to help OS, and other drugs with limited SE...
If you don't want to do the ADT, then consider other options if you want to be with loved ones a bit longer without giving up QOL...
Whatever you decide, it is your choice... just wanted to throw out some options... good luck
All the best,
Fish
Hi Fish, I'm oligo also and my RO has just submitted pre-authorization for SRT to the bone. He doesn't see authorization to be a problem. Your note to Barry was for him to consider the option of SRT as long as he isn't ductal or intraductal. My pathology report states I have prostatic duct carcinoma with associated prostatic ancinar carcinoma. What is the reasoning for not considering SRT for ductal or intraductal? Thanks Bob
Nalakrats has some papers on this issue....contact him....he gave me this info--ductal is more common in older and Asian populations and when tumors were radiated, it seemed to upset the cancer--more aggresive...see what he can offer you in research....talk to your RO, and decide....depending on where your tumor is at, there are other ways to bludgeon the beast / skin the cat.....thermal ablation is what I may chose if I have to look at this again and insurance refuses radiation...
Like I said, Nalakrats is the contact for this....I have Acinar Adenocarcinoma also but on the line that said Ductal: Not Present...The article I found advises aggressive radiation therapy for Ductal...:
ncbi.nlm.nih.gov/pmc/articl...
All the best,
Don Pescado
Fish, A big thank you for doing that research. I'll be seeing the RO Thursday.
Bob
the beauty of this forum...knowledgeable people willing to help... when anyone escapes this hell ship, or even gets a long remission.....the spirits of the crew are lifted... may we all find a way to escape someday while we yet live and breathe....good luck...
Fish
Hi Fish and Barry
I’m on ADT and Zytiga (oral tablets). This is standard of care for me in Canada. I am 57 and quality of life is important to me. I am going skiiing this afternoon, playing soccer Thursday and going hiking when the weather warms up here in Canada!
I am choosing stereotactic radiation to nuke a 2cm tumour in my neck which is causing me increasing neck pain.
I am happy staying away from chemo until I am sure Zytiga is no longer working on the rest of my body. 6 cycles of chemo could spoil my summer soI will likely only do it if progression occurs in rest of my body. .I get the hormone therapy and stereotactic paid for so lucky I live in Canada. I try to lead a pretty normal life with advanced prostate cancer. People who I have not told have no idea I have cancer.
Fish, I can’t open the link to the stereotactic stuff.?! Can u write it out again in full.
You should just click on the blue link in my reply and it should open regarding ductal adenocarcinoma of the prostate and stereotactic radiation... I do have replies where I put out info regarding oligometastatic disease and stereotactic radiation... try this post about SABR-COMET-10 trial---has reference to several studies/info and George71, another provider of solid info, added to it in replies with other studies--look at his replies and mine--also, TWTJr, a poster and retired Radiologist added his story--using radiation on 6 tumors 6 years ago...a warrior who has fought almost 20 years...
healthunlocked.com/advanced...
Agree with you about Chemo, because in the Checkmate 650 trial, only 10% responded who had been exposed to chemo vs 25% for chemo naïve... If I have to do chemo, I will try and get into MM-310 trial--liposomal docetaxol--more tumor specific than releasing poison into the system to drift aimlessly until it hits the target or kills good tissues... I prefer targeted therapy...
Hope this helps...
Fish
Man I can't thank you folks enough for giving me so many more avenues to explore and helping me see a light in the darkness.... I'm going to have to take a break from this thread tonight and concentrate on visiting theses sites, gathering and putting all this wonderful info into context so that 2 days from now when I go back to oncology I can be armed and prepared to ask the right questions and answer them as well..... Grateful doesn't begin to describe how much I appreciate what you all are doing for me.... Thanks to each and every one of you
Great brother... Keep on hiking and living... P. S..... Met some wonderful folks from Canada while I was doing a job in Montana a few years back.... They were on vacation and a treasure to be around....
I very much appreciate the options you have given to.... They are exactly the type of thing I'm looking for.... I don't feel as I'm throwing in the towel by refusing to take a therapy I detest, but I see where others would.... Again thank you and I will follow up on this.
Hi Barry,
I am a S.O of someone diagnosed with PC stage 4 in October 2018 (age 82) Initial PSA was in the 900. He had one month of Firmagon than switched to 3 month Lupron and Xgeva. Last month, Zytiga and prednisone were added. He only had the initial sweating at night but no other side effects. 58 years old is so young. I hope you will try hormonal therapy and for awhile longer. I will be praying for you along with the rest of your brothers here.
Barry123456 in reply to
Thanks
in reply to Barry123456
Same as HPurpule, with same side effects. But life is very bearable. No more long hikes for the great photo shot but surprise, fine shots from a car seat of a few steps into the woods. Try for a few months and let your body adapt.
Good luck and (reasonably) long life!
Barry123456 in reply to
Thanks bro... Hope you will bless us with some photos....
It is a common myth that docetaxel decreases the quality of life - data show the opposite is true. The QOL improvement diminishes the longer one waits.
I may try chemo... I will not do anymore hormone suppression though.....
Have you considered Casodex or estrogen patches instead?
I've read about both.....my options are limited to what the VA chooses... I will just have to see what they will approve.... Where I go for treatment gets a 1 star rating and the Doctor I was seeing in radiation was leaving to go to a another hospital because the VA was more concerned with properly filling out forms than patient care.
in reply to Barry123456
I was going to suggest Casodex monotherapy which I see that TA has already suggested. Casodex is a fairly inexpensive drug that blocks the hormone receptors on the cancer, but does not lower testosterone. A better choice would be Enzalutamide monotherapy, but it's much more expensive and very unlikely to be approved by the VA as a monotherapy. Many people have used Casodex alone successfully, it should work, at least for a while. The VA might go for that as an option since it's not really expensive, probably cheaper than Eligard. The side effects would be minimal or none at all.
I'm also a VA patient and am getting excellent care at a different facility. You can change VA facilities if you are getting bad care.
Barry123456 in reply to
I am glad you are getting proper care... I have uncles in other states that receive really great care. I do want people to know that the VA is for the most part great.... It's like most anything else.... It has some places not so good... I'll definitely ask about it..... As for changing facilities.... I'll check into that as well.... Though geographically speaking it could be undo able.... Thank you for the info.
in reply to Barry123456
I do feel that I am getting great care although I also realize they are not that flexible about treatments. You are going to get the Standard of Care which it does sound like they are offering you. I doubt I would have any better luck at my VA if I wanted to do something a bit less conventional. When considering the geographic considerations of a different VA, keep in mind how often you need to go. Generally, I only need to go in every 3 months so it wouldn't be that much of a burden for me to switch. If you were getting chemo, you'd be going in every 3 weeks and that would be more of a hassle although after 18 weeks it's over.
Estrogen patches are prescribed for hot flashes, but it was the first drug ever used for PC. It was abandoned for anti-androgens because of high rates of blood clots from the pills. However, now with transdermal estrogens that seems to be less of a problem. It (or Casodex) can be taken with tamoxifen to prevent breast effects. Aside from suppressing hot flashes, it maintains bone density and lean muscle mass.
I was taking a bone med because I am osteoperinal and 30 yrs of periodontal disease have destroyed my teeth and gums.... I'm not eligible for dental through the VA and pull my own teeth... I was sent to VA dentist who put in for an outside dental surgeon to remove my remaining teeth prior to taking bone meds... I have yet to hear back and I was sent bone meds a week after the consult... I took the meds once per week... 70 milligrams for about 6 weeks and stopped because I had to pull another tooth and I figure I won't get the surgery to remove my teeth or cut out the roots left behind by my own self administered dental work....
I feel I'm in a dammed if I do or damned if I don't position.... So I just do what I feel I have to to get by....
in reply to Tall_Allen
I agree with this based on actual experience. I had the side effects of chemo on the one side, but the improvement of less pain, more energy and improvement in PSA on the other.
I realize my situation is different from many in that I was in an extreme amount of pain along with fever, night sweats, loss of appetite and overall feeling like I was dying (which I was) I was so happy for anything that worked and brought me out that hell. I suppose that biases my opinion somewhat.
NPfisherman is right, stereotactic radiation is a great option that can eliminate much cancer and reset the process for years. Also consider BAT -- alternating high dose testosterone which improves overall outlook and offsets the effects of ADT as well as stops cancer progression in and of itself.
Thank you... These are the types of treatment options that I'm interested in..
You provide solid information and another great idea.... BAT Appreciate your info and input George71... keep it up, buddy.....
Fish
I want to take the opposite view of most replies. I would encourage you to minimize treatment and try to enjoy the time you have left with your loved ones. My husband had PCa in 2011, treated successfully with radiation, and in 2018 it recurred with a vengeance. We tried casodex, prednisone, xgeva, xtandi and zytiga--all to no avail. He passed away just 3 months after bone mets. were found. In retrospect I often think it would have been better to spend those last 3 months at home together enjoying our memories, treating the pain, and avoiding all the expense, hospitalizations, rehab for PT, etc. during that time. This is a very personal decision. Let your faith be your guide and know that God's grace is sufficient, whatever path you choose. Best wishes to you in making this awful journey.
I appreciate your view point and I truly am sorry for your loss... I've lost many relatives to cancer from my grandfather and uncles to cousins and one of my aunts.... I do feel very much as you do..... I don't want to die anymore than most...but I also promised my children that I will not be a burden to them..... Hard choices seem to be all that's left.... And I know many if not most people will not understand that things important to them aren't necessarily important to me and vice versa.... I'm not much... But I'm all I got..... I want to leave here that way...
in reply to Barry123456
Most of us here can relate to the difficulty you are facing in making these treatment decisions. We understand because we are in the same boat as you are. We are all here to help and support each other, regardless of the very personal decisions that we all have to make. No one can judge the treatment decisions of another. I think the best we can do is to try to help each other make those decisions by providing our knowledge and experience.
Barry123456 in reply to
I agree with you 100 percent.... I don't mean to come off as contrary or asinine... I truly haven't been myself as of late and grappling with all this.... Different perspectives are a good thing.
in reply to Barry123456
To me, you come across as someone who is very thoughtful and trying hard to work through these tough decisions. It's not easy.
But something else to remember, your decisions on treatment are not permanent. You are not locking yourself into anything by what you decide now. You are making your decisions for this point in time only. You can change them at any time you feel you need to.
Barry123456 in reply to
You're right.... I will always be on the lookout and consider other treatment options... But not adt.... Thank you for everything... All of you are wonderful and a great boon to me.
Didn't like ADT shots for life idea so had Orchiectomy. Great for me...Chemo, every 3 week for 18 weeks put my PSA to 0.140. Xtandi through VA keeping it there with half dose. All the above available through VA veterans choice acct nearest VA hosp. over 40 miles away. Went to drs. of choice. Maybe drive the other direction and find MO you can use without going to VA hosp. I don't know how rural you are but the Veterans Choice program has worked wonders for me. Been over two years, in remission and planing for many years to go. New normal does leave me more tired and less strong, but still cut, split and stack wood. No brain fog for me, maybe just lucky don't know. Good luck to you and your dad. Hope you go with chemo.,. Not that long a sacrifice for years of decent though different life.
Well I don't know your situation but one of the reasons I will not take adt is because I still have my sex drive and sensation... I can't see myself opting to have my testes surgically removed.... But I will ask about going to another facility... Glad everything is good with you and keep chopping wood.
Then your sex drive is going to trump any other type of things that you can gain value out of life. Like just being able to wake up in the morning and enjoying the sunlight and breeze. Or going outside and enjoying the smell of the air and being able to get in your car and still enjoy life and do so many other things. If sex is more important than life extension, then you are right, that is 100 percent your decision.
It's a shame that you said you "promised your children that you won't be burden to them". What a fkd up society and mindset you must have. That if someone becomes a "burden" they must just be discarded. I would assume that there were times in your life that they felt like a burden to you, but you persisted because you love them. My Dad has this disease now, but I love him with all my heart and I've known the times that he had help carry me through some hard times, and I will always be indebted to him. At the end of his life If i have to drag him to and from the bathroom every 10 minutes, I will gladly do it. Because he is my father and he supported me throughout my life and has given me love. I will respond with love and understanding back.
Man. I really hope whatever your decision is, you know that it is not reversible. Once you get so far in the disease, you can't say "damn. I really wish that i actually did take hormone treatment and just adapted my life". But to each their own.
Dude..... I'm trying really hard to ignore your ignorance and let this pass... Your use of expletives is enough to show that you have the depth of a pot hole.... Yes sex is important to me and if you had bothered to read more than the one reply you might have seen that it wasn't or isn't the only factor.... I understand that doing so might not allow you your little tirade.... Talk to your doctor if you wish to take hormone therapy.... Considering everything perhaps some femine traits are just what you need...I have no doubt my children would do whatever.... By all means you take all the meds in the world..... And hopefully it goes as you envision.... But not everyone has sight or able to walk that apparently you think... And some people are broken on the inside and the rising of the sun signals only another day of misery...so not everyone has as rosey and positive outlook on life..... I for one will not admonish or criticise another's choice even if I strongly disagree....perhaps someday you will too.... Until then.... Adapt on..
I completely do understand that everyone has their own mindset and reason to live etc. I know we don't have hive mind. As I said, I really hope you do find peace in whatever decision you do make. If everyday is a misery to you, I hope that it gets better and you find reason to keep moving forward.
Once you take hormone treatment, you don't turn into a woman. My father is no less a man than when he started taking the zytiga, lupron, prednisone combination a little over 4 months ago.
We just have completely different mindsets when it comes to outlook on life etc. I can tell. That's fine too. I'm not here to upset you or start anything with you in this tough time of your life. This is a support website. I was just upset that you said you didn't want to be a "burden". You are not a burden if you have this disease and you are no more or less a man in whatever treatment you decide for or against. I just wish you well on your journey.
Thank you for understanding.... I apologize for my own rash response..... I have not been myself lately but you have no way of knowing that and I have to take more time in processing other people's comments.... Sometimes the hardest thing to do is to try to understand someone else's view point... Especially if it is so opposite our own.... Again I hope you'll accept my apology and I do wish only the best outcomes for you and everyone affected by cancer.
in reply to BarronS
Barron S,
I see things the way you do, but not everyone does. Others should have the freedom to use their own values, not someone else's to determine their course of treatment.
He also does have some time for his treatment choices to change if that's what he wants.
BarronS in reply to
You're right, gregg. Everyone needs to decide on their own what treatments and how to live life. It's not my place to make that judgement call as I'm not the person that has to live with the consequences. I put a bit too much emotion into my last response which I shouldn't have done. These are emotional times for everyone that is going through this or is a loved one watching family go through this.
in reply to BarronS
I completely understand. This whole thing is really hard on all of us. It is emotional, dealing with these decisions, many of which are choices between the lesser of evils.
When I first was diagnosed, I didn't want to do any treatments. I was in total shock over the "news". My doctor was pushing me do chemo at every visit, but I was still in so much pain it was difficult to think. I was angry, just wanted to say F everything. It took me a while to process everything, but at the same time I really knew I was dying. I wanted more time to adjust to the new reality, but that little voice inside starting saying things that sound a lot like your post. I had to start dying in order to know how much I really wanted to live. That was the first of many lessons. We are all so lucky to be here reading and writing these posts.
NPfisherman in reply to
Very well said....PCa is an emotional rollercoaster... anger, sadness, fear, pain--emotional and physical, hope, ... It's like being a kid on the merry go round and going faster and faster till you fall off or throw up... never knowing what happens next... I hate this damnedable disease... God have mercy on us all.....
Don Pescado...
When you get an orchiectomy do the put in artificial testicles for psychological reasons like I've heard about?
in reply to Kevinski65
yes, you get empty sacs to fill in, they are designed to feel real...
Must have left out fact that I had Robotic RP so sex life was a non issue. Pathology showed all neuro/veinous bundles out of Prostate area were Gleason 9/10 so dr said I could maybe survive 12-18 mo. with treatment. Over 2 years ago now and in remission planing on 10 years or more at this pt. Blessing VA for picking up cost of $12,000 Xtandi.
Are u on Lupron too? Do u take the 4 pills every nite?
4 pills a day made me an invalid. Cut back 4 times, now at average 86 mg/day and have a life. 2 pills every day plus one extra on Sunday. Not on Lupon for life. No sex possible and 2 jelly beans in my sack. Removed May 1, Hand rebuilt on May2. Drs not happy with 2 surgeries in 2 days but needed concurrent recovery time. PSA holding at 0.122 for last 6 mo. and 0.140 for 6 mo. before that. Steady enough for now. No falsies for me. Gold Bond keeps things from sticking together (no hair grew back)
I hate the side effects 😭 too. Joint aches, nausea, fatigue, sweats, the works can rear up on u anytime. I can't say I blame you getting neutered. That Lupron shot is another kick in the pants Does all this help ameliorate symptoms?
Not really, but black cohosh root 560 mg 3 times a day and 40 mg megace 4 times a day and narry a hot flash/sweats in many months. Also cardiovascular problems in 5-10 years from lupron not a worry. Joint pains left with reduced Xtandi, no nausea but fatigue stays.
Hi Barry,
I'm 67, have had prostate problems since 2001, with needle biopsy in 8/2015 with 7 of 12 cores 100% cancer, and some cancer in the other 5. Had retropubic radical prostatectomy 10/2015 - pT3b M1 N0. Margins were positive, cancer present at nerves, vesicles, bladder neck and urethra reattachment point, so I awoke from the surgery with a permanent supra-pubic catheter. My PSA was never zero, and the doubling time is roughly 4 months, with the latest PSA test in 01/2019 showing 8.23. I paid out of pocket for lots of alternative treatments beginning in 2001. I slowed the cancer down, but waited too long for the surgery.
During my visits to various clinics for treatment I spoke with dozens of cancer patients who regretted their stints of chemo, radiation, etc, and I decided then that I wasn't going to do any of that stuff.
Many years later, here I am at the decision point, and I find the decision not as easy as I thought. My next PSA is scheduled for 4/2019 and I expect it to be over 10.0, the magic cutoff point where my doctor says I'll need to decide what to do next. I'm torn between doing nothing and letting the disease run its course, or beginning the various treatments available to me.
I worked until my health crashed in May of 2015, but was forced into medical retirement at 63. Our only income now is Medicare, as I have used all of my retirement funds to combat my cancer, and all we have left of value is our house, our home for the last 18 years. If I begin treatment we will lose our home to the medical costs, copays and the like. My wife, who is 78, is very supportive and would do whatever I choose, but I don't want to lose the house, and have to relocate to an apartment. This is our home, and it is where we belong.
Choices about treatment are not trivial. I don't believe in survival at any cost, as some seem to do. I've elected to have quality of life, rather than longevity. I made this decision after careful consideration and research, but as my health slowly deteriorates, and the PSA continues to double, It requires a steady resolve, which comes under fire with each new PSA test. Having a conviction of right and correct action is one thing, committing to the logical conclusion of letting cancer grow unchecked, is something else entirely.
I continue to have PSA tests done so I can track progression, but if I'm really not going to do what the doctor wants, is there actually a point in doing the PSA tests?
FYI: I did find that diet can affect PSA progression. I stopped eating and only drank freshly squeezed vegetable juice for 3 months, and my PSA dropped from 5.78 to 4.11, but as soon as I began eating normally again, it began to climb, albeit not as fast.
When I made my decision to not treat my cancer, the median survival overall (SO) for stage 4 prostate cancer was 2.9 years. That has extended a bit with newer treatments, to about 5 years, and climbing. I have already survived about 4.5 years since my surgery while doing none of the treatments offered by my MDs. My health has been generally very good. I am physically active, we have even bought, refurbished, and flipped three houses using equity from our home. It wasn't easy, but I was able to do it, using myself as a project manager, and hiring professionals to do the work.
If I continue to not treat my cancer, can I expect another 5 years of good health? Probably not. I likely will live those 5 years slowly debilitated by the disease, which will kill me in the end.
If I decide to treat my cancer, will I survive longer than those 5 years? Yes, likely I will. Some are living 10, 12, even 15 years longer, until the cancer becomes castrate resistant, and it takes you anyway. But what is the quality of life for these guys?
It comes down to a decision, as always: What do I want from life? Currently, the decision of QoL over longevity still makes sense to me, so I will continue how I have been, using diet and exercise to stay strong and as healthy as I can be.
I suspect my resolve will be challenged along the way, especially when my health begins to fail. Will my wife truly be okay with my decision, or will she try to change my mind at some point in the future? I've always said that if something is found to cure my cancer I would do it. How about something which doesn't cure it, but gives you an extra 15 years, at diminished capacity? How does that fit into the equation of treat / don't treat?
In the end, we all die. With cancer it is a nasty death, whether we choose to treat, or not. I'm more concerned about the living experience, right now. I intend to make pleasant memories. We traveled extensively before I got sick, and have no real desire to do that again, but hikes, day trips, happy days spent in nature are goals I can achieve.
Ray
You have said more eloquently than I ever could the very real decisions that must be made.... And the unholy choices we have to make... I'm not ashamed to tell you that my eyes are full of tears at what you have written and how unfair life can be..... I hope that whatever you eventually decide you and your wife are at peace with it.... I hope to find half the courage and dignity that you obviously possess in my journey to the clearing at the end of the path to borrow from Stephen King... Please stay in touch if you have the inclination to do so.... I feel privileged that you shared with me your struggle..... Bless you sir!
Death is easy. Its living that is so darn hard. I too considered my QOL with the option of 3 month Lupron shots and 6 cycles of chemo. It really boiled down to how much change to my physical and personal self would my family tolerate by my going through treatments and possibly being here longer. So far it has worked out, but if my QOL and personality does suffer to the point of me no longer being me then I stop. It's a tough choice. I have one friend who made that choice 20 months ago. He is still here and still very much himself. May you find the peace you desire!
Thank you.... I've discussed with both my sons who are in their 30's and my daughter who is 28....they aren't thrilled with my decision but understand and I have a durable power of attorney in place....I and my wife have been estranged for almost 20 yrs and we're closer now than at any time since the year 2000, she is understanding as well... They all know how my life has been over the past 20 years and the cancer just seems to be perhaps a justified inanition... I actually feel emotionally better perhaps because I feel empowered to some degree. Paint me foolish but that's me... Again my thanks.
Some men who have serious medical/emotional issues get a referral from the VA to a psychological counselor who specializes in such things. Anybody qualified to help soldiers who may have literally had their man-junk blown off in someplace like Afghanistan might be of at least some help for a prostate cancer patient in the context of Androgen Deprivation Therapy.
I've been on Lupron for over 5 years, starting at age 65. In my experience, it took away my severe pain, kept me mobile, and delayed some really, really serious potential stuff that could happen with advanced, untreated disease. At the same time, I keenly remember the sadness and mourning of the loss of my former body and sex life that I felt during the 1st year or two after starting treatment. The treatments were trying (pretty successfully) to change my body from an adult male into an 11 year old boy again, or a 205 pound Peter Pan. One thing that has helped me and my wife has been the continuance of intentional communication and mutual support. We used to "do it" like bunnies when we first met. As she went through menopause our sex life transitioned to more "outercourse" than traditional intercourse. After I was diagnosed with advanced prostate cancer, our love and intimacy increased to make up for the constraints of my disease and bodily changes that come with the treatments. I have been sad and in grief about some of it, but I've also been one Lucky Guy to live and love and be loved as we continue to go through this together.
Good Luck to you in whatever your own path ahead may be.
Charles
Thank you sir.... I'm happy that you and your wife have been able to navigate this road together and as successfully as you have and are in a good place... I want to get to a good place as well.... But by the path less taken.... My refusing to take anymore hormone therapy just means I will have to work harder to find something better and already folks on here have provided me with many possibilities... And those are where my energy will lie... Thank you again for sharing with me..
Thanks for the support bro... I'm not giving up as much as taking control of what little I can.... I'm going to see what if any options I have as to different treatments...it may be that I'm the miracle man and beat this in a different way...
I was 54 at a similiar situation. Do at stage 4 with severe back pain and too many spine Mets to count. It was a rough start with immediate surgery to reduce spinal pressure, etc. But I started chemo as soon as I could - did 10 tough (but tolerable) rounds. The result is that (while still on Lipton) my PSA has been undetectable for a year, no visible Mets, and I feel completely normal. I know it will come back - but no reason for me to throw in the towel before chemo which was really “easy” .
I feel the same way for different reasons. I applaud you! Only problem is without treatment you will start to deteriorate and the time you have left will not be pleasant. Good luck my friend!
Thank you... Hoping for the best for you
Barry, I am having great success using transdermal estradiol gel. Tall_Allen suggested patches which are basically the same kind of therapy. No side effects other than some little boobs. I have posted considerable info on my journey with this old, inexpensive, but effective therapy. It would certainly be worth giving it a try. Also read some of Richard Wassersug's posts/papers regarding this natural hormonal therapy.
I will... Than you
I feel your pain. After 14 months of hormone therapy, Zytiga, Lupron, prednisone etc. I understand how you feel. My worries are for my wife and how she'll cope when I'm gone. I do believe that we all have our time. Nobody can dodge that. Zytiga can be now purchased online from India for about $100 a month. Sex life? It goes for many of us despite what you hear. I always joked that "yes, older women like sex, just with a young man, not an old one". Just kidding. Your family might like having you around for a while you know. You might learn to enjoy simple things in life too. Mine is doing nothing, watching TV, sitting outside and enjoying a nice bowl of ice cream. No kidding. That is what a lot of us old people do. Life can be overwhelming and I just try to adjust. Like you, I feel you must halve a quality of life that suits you. I chose to cope and be as strong as I can for as long as I can. You being Ex-military are inherently strong. You know it. All said, you have to do what you believe is right for you.
Hi Barry
Everybody respects your decision
I wish you all the best
Lots of quality and memories made
Thank you so very much.... Alas not everyone but that's to be expected in a free society and as it should be.
I am one such decider. Offered ADT + RT at time of diagnosis last August. Read the effects of hormonal treatments and said that was not acceptable. I respect my oncologists but recognize that they are about survival-months. Important. But living without fatigue/brain fog/depression and all that more important. For me. And for thee, it seems. Blessings and honor for your deciding what is best for you.
Please let me know if you don't mind how you are doing on journey from time to time.... I sure hope it is years of happiness in the making
Your a braver man than I , Stage 4 here with Mets in spine,ribs and lymph nodes. I went thru chemo taxotere and adt treatment starting 32 months ago. The first few months were rough but now I pretty much do anything I want except sex. Good luck with the monster 🙏🙏🙏
Thanks, nothing brave about me.... Probably more cowardly than anything.... Men such as yourself are braver than I'll ever be... Good luck to you
Barry, wishing you the best for whatever you decide.
Barry123456 in reply to
Thank you
Barry123456 in reply to
Thanks bro and best to you as well
To each his own.
It's not in my nature to take your approach; if I fall off the ship & somebody throws me one of those big donuts, I guarantee you I'd grab it. Your decision sounds like slow, tortuous suicide, to me.
As far as sex-my Wife and I didn't base our matrimony on it, so, I just wait until ADT breaks.
Wish I could say I admire you, but, frankly, I think it's just a way to garner sympathy and attention, but I'm no shrink.
Heck of a way to go out, man. Whew.
Nous Defions
Crabcrusher
Well I hope that's not what I'm doing... Sorry if it seems that way to you... Sex isn't my only issue with this, and I regret now even mentioning it since it's dominated everything now.... That you are happy with your situation is great..... I'm happy for you..... I hope you never fall off the ship and the waters are always calm.
Thanks
You can reject traditional oncology and all its negative effects. However, that does not mean you have no non-toxic options (most importantly IP6) available to you as you as a basis for a complementary medicine program.
healthunlocked.com/advanced...
healthunlocked.com/advanced...
Thank you.... I will look into....
Hello, Barry.
Thank you for sharing your decision not to pursue treatment. If you change your mind, people are responding here with excellent advice and support and will always welcome your input based on whatever course you take.
We had friends who asked at the beginning five years ago: "What if you do nothing?" That option, your current choice, wasn't under consideration, but in our research my husband and I haven't found much information on men who decided to "do nothing." Please stay in touch with the folks on this board as you go along. It's a great group of knowledgeable, caring people. We all wish you well on your journey and hope to hear from you again.
Husband 70 yrs (74 now) pacemaker; Agent Orange
9/14: blood in urine; DRE suspicious
11/14: biopsy G 9 (4+5), PSA: 3.32 high Gleason, low PSA, PNI involved
Lupron taken for 33 mos (currently on Lupron again after a year hiatus.)
6/15: 9 wks IMRT
9/15= .14
1/16= .093
4/16= .079
11/16=.05 (nadir)
2/17-5/17=.05
1/17= .08
2/18= .20
4/18=0.98
6/18= 3-4 bone mets seen on CT scan
7/18= 3.29
8/28= 9.0
Lupron re-started with a month of Casodex
11/27/18=7.0
Zytiga/Prednisone started with ongoing Lupron 2/9/19=4.02
I will.... I read an article about the late great British actor Peter Cushing who was diagnosed with prostate cancer and refused any treatment..... He lived 8 years afterward apparently in fair health and continued to act... That's about all I've found so far.....
I have no problem saying that this is your journey, B, and I can relate - if I wasn't 48 with kids when I was diagnosed 30 months ago with multiple spine, pelvic, and femur mets (including a significantly compromised C2 vertebrae), my preference would be to seek the fringe/experimental treatments like High Testosterone Dose therapy...if only to become a "test pilot" and provide another valid data point for the treatment.
However, I've also stated here that I strongly believe that our loved ones have a vote - if they say fight, we fight the good fight...even if that means ADT. Basically taking my ego out of the equation has helped immensely...not that I don't struggle with the thought that I simply want to pop up out of the trench and run across no-man's-land firing away (I sort of envision HTD therapy as this...).
That being said, if you are going the alternative route and are literally pulling your own teeth (tough, brother!), look into Nalakrats' posts for suggestions like BIRM.
Good luck - I'll be rooting for you as you run across the mud....! - Joe M.
Yes. Fight the good fight. And yes, chemo should be nothing for someone who pulls their own teeth. Reminds me of my childhood and my dad with his pliers. Talk about "Here's Johnny!"
Pliers? You were a lucky sob, my father used an acetylene torch. Nothing left for the tooth fairy...'HERE'S DADDY"...
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 03/18/2019 5:02 PM DST
Ah, but secondary infection rates go way down with acetylene!
Yep you're right,
But he didn't use the torch portion he knocked them out by swinging the tank.
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 03/18/2019 6:21 PM DST
Ahhhhh...... I see, said the blind man.
As he picked up his hammer and saw...
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 03/18/2019 8:01 PM DST
Barry, Your body your choice.
I'm 76 and on Leupron after PSA over 1300 over a year ago, body scan reported too many lesions to count, one doc said go home and die. Lost 55lbs from normal 215.
I tried Alkaline Therapy, (tsp baking soda tsp pure maple syrup in a cup water), taken one hr before first meal and one hr after last meal. By it self reduced initial PSA from 1300+ down to 362 in just 12 days and less pain.
Then started Leupron and still on It. PSA below 2 for last 6 months.
For daily Pain have added 4 Norco, 95mg CBD, and 20mg THC spread over every 6 hours a day to reduce pain to tolerable.
Made some major diet changes just for grins. Weight back up to 175.
Standard ADT side effects. Sleeping a lot and harder to do stuff you like but seeing the sun and watching things grow still enjoyable.
For me its all about whether I can control the extreme pain or not. At DX given maybe 6mos, that was about 10 mos ago. I feel positive now like it could be much more but this is a cyclic disease.
Good luck with your decision.
2Dee
Similar situation but I’m 66 and had RALP surgery a few years ago to start. On Firmagon (like eligard but better for people with heart issues) for 6 months and the side effects are difficult to take - but it stopped the bone pain I had -
I was told to start taxotere ASAP and declined to maintain a better quality of life for now
I would see if you can better tolerate the eligard - there are techniques on this site you can read about to help with this - but my suggestion is to at least keep that going at present as it works well
Thanks
I have applied... Not through the compassionate allowance though.... I have to upcoming appt with their doctors... Hopefully I'll get something.
Jeez, Mr. Samuel. I did not realize you were only 58 years old. You show wisdom far beyond your years. The Mark Twain emoji is almost as scary as Here's Johnny! I would like to see Einstein sticking out his tongue. When my wife was sick for two years and couldn't have sex I didn't throw her out with the trash. I can't have sex now and I'm not going to throw myself out with the trash. We all fear the dying and being a burden part far more than we do death. Most of us have probably considered suicide. But someone on this site said that suicide was just putting everything on the shoulders of the loved ones you left behind. Choosing suicide or slow suicide is selfish. Get busy living, or get busy dying. And that's all I got to say about that.
Greetings Barry you left off 7 8 9 10 11 12 and etc. "I would like to know what other's who have made similar decisions feel".
I did not make a similar decision as yours. I'm into humor but I want to get serious now. My first reaction is "if this guy decided he wants to hang up his spikes, why the hell does he care what other's feel?" Remember Nike's motto 'JUST DO IT". I'm sorry but I did Not read all the comments here cause that would not leave me enough time to beat my wife.
So Barry life "sucks and then you die". Well for me and other's here we have all felt the way you have right now. It's easy to give up but it takes character and balls to fight your way to the end. I thought veterans can opt out of the VA and get help privately, I guess I'm wrong. BTW before I thank you for your service I'll thank myself. Thanks myself and Thank you.
So do your children (I can't believe I'm saying this, and your ex-wife) a favor and stick around. Compare your QOL to the people who "lived" in those Nazi concentration camps in the 30's and the 40's. They would have given their eye teeth (pun intended) to be in your shoes instead of their bare feet. If you were my friend I personally would kick your ass so you'd come to your senses. That's all I have to say except:
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 03/18/2019 2:25 PM DST
Great response, thank you... You are right in so many ways.... Dead ass wrong in others.... Apparently prison taught you different lessons than the ones I learned..... But I only did a 5 yr bid.... No true inmate status.... Your right about the if's and why's.... It's looking more and more like the question I should really be asking myself are the ones you have brought to my attention.... It may be that I made a mistake in coming here and placing myself in a place I don't belong... It surely wouldn't be the first time I did some incredibly stupid thing.... I apologize for that... And I will do some soul-searching and ask myself if I, as someone else pointed out seem to seek only sympathy and attention..... The list grows longer of questions I need to ask..... and answer about myself before jumping into waters I know nothing about.... Thanks bro.... Don't beat your wife too hard... It's illegal in most states...
"But what do I know?" is how a member used to end all his posts. He was a retired special forces officer with many years in (a lifer). Nice guy, smart as a whip. Well one time he took offense to one of my silly ass posts. He actually misinterpreted what I meant in my humorous way. Well we went back and forth a few times (with threats). Fast Forward: We received a notice here that he couldn't handle is Pca anymore and decided to end it all in his barn. When I saw the post announcing his passing I cried. Crying because another brother gave up the fight and crying since we never made friends. Do me a favor cause I don't like crying especially when I think of your children so please keep on fighting the good fight like all of us are.
As far as the wife beatings are concerned she's starting to like them and looks forward to them.
j-o-h-n Monday 03/18/2019 5:51 PM DST
in reply to j-o-h-n
Your serious side is as relavent as your humor..
Brother I didn't take offense I'm just pretty crappy these days in responding appropriately to... well everything... I really am glad you and others have brought to my attention things I've either chosen not to see or refused to.... I really do need to work on these things.... I did a 5 yr bid here in GA. for agg. assault.... I'm no bad dude... Wife was running around with another man and he decided to just remove me physically.. I stuck him pretty good in the chest... Out of fear and anger and sorrow I suppose.... I went away for the 5....my daughter was 9 yrs old when I said goodbye.... I did not see her again until she was 14 and a young woman.... I normally don't bring this up for obvious reasons but your a soilder and a fighter so I think you will understand.... I wouldnt let my family visit because I didn't want them to be exposed to that environment.... And have to cross the guard line.... It was the first and only time I ever did time.... But I found out just what I was capable of in such an emotional state and since 2005 when I got out I have taken extreme care to avoid at all costs getting too emotional about anything and everything.... I believe what I did was an isolated thing.... I want to believe that.... But I have my fears and doubts and what's going on inside me now scares me....... I've worked hard.... very hard to show my children and the world that I'm not the person that went away... But someone who is caring, easy going, thoughtful.... Admittedly I've only been on Eligard for 6 months and most say it gets better.... But being in the place I'm in now is not a good one for me and telling you about will only open me up for more criticism and accusations but you seem like maybe you've either been where I'm at or know somebody who has...... I've lived a life full of screw ups.... Not malicious or mean but mostly selfish and unthinking.... So never feel guilt or shed any tears on my account..... But try not to judge me too harshly.... There will be plenty of other's who I'm sure will lower the boom on me... And bless you brother....
i was never in the joint for a long time... Overnight at 16 was enough to set me straight. The past is the past. You can't do anything to change it but you can always change the now and the future. I just hate to see someone give in to this fng Pca because a cure can be right around the corner. It's when I think of your children not having a dad that makes me feel mournful. I lost my Dad at a young age and miss him everyday. So for your kids (not for me) please stick it out. We don't judge men here we help them. So you've come to the right place for help, information, camaraderie and to vent. And God Bless you for joining us.
j-o-h-n Monday 03/18/2019 7:01 PM DST
Thanks bro....
Yes! A grinch emoji. My wife's favorite words for me were "you grinch" and "you cheap bastard". O Captain! my Captain, our fearful trip is done. You are very poetic today. Enjoy.
I have been on Zytiga n Lupron for seven months. Besides some hot flashes and a reduced sex Drive, I am the same guy. Last month I went skiing in Montana for a week n then Colorado for a week. The little blue pills work when we want to have sex. After a really sad first few months, I am now living life to the fullest with a positive attitude. I am planning a week long dirt bike trip to Montana in August with my son n 3 friends. Rock n Roll houchi coo!😬
in reply to Fitzbruce1
Hell yah !
in reply to
Just watch out for that “Cat scratch fever” ...ski on Fitzbruce.. awesome
ITCandy,
Actually I'm doing better with ADT, for me it's hitting the gym hard and boost the sex functions, don't let it atrophy.
ADT, is life changing, nevertheless it has saved my life, from PSA 1000+ with incontinence and burning sensation peeing, to now spending time with my amazing wife and dogs. Oh, have no children, maybe possible one day, not with current ADT/Zytiga way, but, the hope I can take an ADT break and have children is worth the fight.
In the meantime, I love my wife, she loves me, we have so much fun, will fight to make her happy, I'm blessed.
Oh, by the way, we have many dogs and cats, we're all in love...
there is a clinical study open at Duke you should look into. Disulfiram and copper...It is actually Antabuse used for alcoholism....It is easy to get an appointment ...Tian Zhang is the doctor leading the study..Call Duke Cancer and get in to see her...I appears to be promising .
I will, thanks..
Thanks Lulu... I've read your posts here and you are the friend to all. I'm the fiend to all. As far as beating my wife, I have a problem there.... she's starting to like it.👀
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 03/18/2019 4:54 PM DST
You're correct.... she's a sweetheart. (and I know your's is as well) ... now for the ex well that's another story..☠☠☠🤢🤢🤢
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 03/18/2019 5:06 PM DST
Hope it wasn't a mistake for you to come here. I think you've set a record in number of replies I've seen in the year I've been here. Everyone here means you well. Maybe we are a little rough on the exterior sometimes, but we've been beat with bats for years. Welcome. And come back and stir the pot up as much as you like. Make us laugh. Throw a VA hospital at us. Good luck my friend as you juggle all of this. I do recommend the chemo. And now I shall slink away. Enjoy.
Thank you very, very much.... I feel like I'm in Dorothy's house in the middle of the tornado as it spins out of Kansas.... I've shared more here.... Probably too much... than I thought I ever would.... But people here seem real.... I feel like a cartoon.... But life in general seems surreal to these days... Again my thanks.
I thank you sir. One of the greatest pictures of all times. My laugh of the day!!!!
Barry, thank you for your original post. I've read every one of the responses including your gracious thank yous and comments. I have the same thoughts as you because, all of a sudden about a month ago with no prior warning, I learned I'm stage 4. I asked my oncologist for some help in weighing the length of life vs. quality of life question, and he brushed that off. So now I'm on a whole ADT and bone-strengthening drugs. Even though I'm 76 and things have slowed down in the sex department over the years, I can't make myself accept the idea of chemical castration...due to both the sexual and self-esteem implications.
Because I'm so impressed by the sincere and knowledgeable posts to this thread, I hope you don't mind if I ask a few questions and don't regard me as hijacking your thread. In summary, my PSA was 111, Gleason 4+4 for two samples, one cervical bone met confirmed, and no pain yet. Started Casodex + Lupron + Zytiga + Xgeva + Prednisone about a week ago.
1. Which cause the most side effects?
2. How soon will I start feeling them?
3. How debilitating will they be?
4. If I stick with it, when will my testicles start to noticeably shrink?
5. If I stick with it, when will it probably be 100% outercourse and 0% intercourse even with blue pill assistance?
To Gearhead, I'll try to be as specific and general enough to answer your questions. First of all we are all different, but there are certain similarities that we all sort of experience.
1. They all do - sometime but not all the time.
2. For me I was lucky cause they came on slowly.
3. Hmmm depends on you - me not at all.
4. Yes they will shrink but slowly (your shorts will fit better however).
5. Intercourse? what's that? Tried the blue pill and I complained about a headache (not my wife).
6. You will grow breasts (my nipples hurt)
7. Memory will fail sometimes.
8. Brain fog sometimes.
9. Hot flashes - i was lucky had just a few and for a short period of time.
10. You will find that ladies shoes are appealing now.
At 76 years old, you should be okay. Take one day at a time and enjoy it. Try to laugh as much as you can.
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 03/18/2019 7:24 PM
You aren't hijacking anything my friend... Until recently I thought threads were what my sheets were measured by.... It's not mine anyway.... I'm just the idiot who inadvertently started a fire.... There are many here that can answer your questions better than I can but I will give you my personal experience... I've only taken Eligard (Lupron).... And only the one time.... So I can't on anything else.... I loath it but most here say you get used to it.... My testicles have shrunk to bad scifi movie levels.... I got the 6 month shot of eligard and hot flashes/night sweats within 2 or 3 weeks.... The shrinking testicles 3 or 4 months..... I can't honestly answer your other questions but others here are a wealth of info.
I hope you get your questions answered to your satisfaction and that everything goes your way
If your dr. ventures to say you will live x amount years at first diagnosis it is just a meaningless statistic. They rarely know, and if honest will brush off the question. Just my take. 6 months until my 2 and a half year expiration date. Wish I had never been told 2 and a half, later amended to many. Takes a while to get your arms around this.
Yes... I was originally diagnosed in 2013 due to rising psa. Biopsy performed at Atlanta VA... PA told me I had Gleason 3 +4...didn't see a surgeon just physician assistants until I was assigned to Augusta VMAC for robotically assisted laproscopy..... After surgery pathological Gleason score 4+3 with a tertiary score of 5....surgical team recommended psa testing every 6 months for 4 years... Primary care physician... A physicians assistant stopped testing my psa after 2 years.... Psa level at that time was 0. 27..... 2 yrs later I was tested again... 6.54....one month later 9.26....next month 10.02...finally 20.96....my pcp didn't know that. 27 is an indicator of biochemical reccurence apparently because I asked him to order a psa test and he told me my test was fine and didn't need one.... Salvage therapy wasn't an option when they finally found the cancer..... Treatment isn't easy and not trusting the people treating you makes it harder.
Thank you Bill it was driving me crazy.... He was a nice guy and I am so sorry I never apologized to him.
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 03/18/2019 7:05 PM
Silicone balls were offered like fake breasts, but I opted to go all natural. Good discussion starter for men who stare at you in the gym shower. Pca is no joke, gets others, even young men thinking about it. Doesn't bother my self esteem and may save someone from this horrible disease.
I just went back to see the last post notifying us of what had happened.
His name was James. I knew he was married and thought about how his wife is doing?
I don't know if he had any children but I do hope they're coping.
I made a mistake he used to say "Of course what do I know?".
Well my condolences to you... and again to his family.
j-o-h-n Monday 03/18/2019 8:00 PM
After my life was taken away, then given back to me, I agreed not to complain about side effects.
Barry, as I read your original posts, others reply’s and yours as well, my heart is so torn over each and every bit of advice, humour and love these men (and women) have provided you.
My admiration for your true grit attitude is also so close to my heart as my late husband and I went through every emotion and thought provoking and agonizing question you and others have brought to our attention on this forum, even if it has brought out a wave of emotional and determined answers we all may or may not like.
I pray you find your inner answers and hope you make the decision “you” are happy with. But bear in mind the feelings of those others you and your ex wife created. You’re personal decision does and will affect them if they aren’t included in your decision making.
Your not too far in to keep on fighting!
Sheri (cheerleader for you all now)
Thank you I actually have discussed this with all my children, wife, father, my brother and sisters and I have an advanced directive filled out where my daughter is the first decision maker, then my oldest son should I become unable to make decisions..... To many I must seem incapable of rational decision making already... Perhaps they're right and reading how some of them have coped/adapted to what amounts to me in my mind as self mutilation is astonishing... I'm just not, at least at this point desperate to go on at all costs.... Maybe if we could live forever I'd feel differently, but we don't... We are finite and probably for the best. I respect greatly those that can live and be happy in those conditions... They are indeed much more courageous than I ever could be.... I am weak...
I am glad that you have discussed it with them all. You have done everything right and no I don’t think you’re being irrational.
You have every right to go for quality of life in any way you see fit and reasonable to your values. Not anyone’s or mine on here or otherwise. I respect that tough decision. A lot of people are not that forward looking.
What you have done on this forum is opened a very lively and healthy debate. No two people will ever be in agreement and that is ok. By opening up here, to complete strangers, that in my heart is courage.
Courage in the face of this disease you are definitely showing here. No weakness shown on your part...ever.
Sheri (cheerleader for you all now)
"I'm just not, at least at this point desperate to go on at all costs.... "
So Barry if I may ask do you have a plan for the end? As one who will die "from" this disease rather than "with" it, what I fear the most is the dread of a slow painful death.... the thought of lying in a Hospice bed with a morphine dip counting out the days is unacceptable to me. Personally I have two plans in place for the end, and in an odd way I find peace and comfort knowing that they are there. Have you seen the movie Paddleton?
"...So I'm thinking before it gets bad I want to end it."
youtube.com/watch?v=rs9YpUk...
I've had a couple of them actually.... I'm hoping to get my disability insurance in the next few months..... Firstly I'm going to prepay for my cremation.... I will use the same outfit that we used for my mom's since they have a nationwide network.... Secondly and the hardest is to time everything out... I want to be healthy enough to travel.... I worked out west years ago and loved the land out there... I have a aunt and uncle in Colorado who informed me that the VA built a huge hospital in Denver and they said I would be welcome to come out and they would see that I get to the hospital for the end..... A good thing about the VA..... I would like to be in a state that has laws in place that allow the doctor to assist patients with end of life issues.... It's still a work in progress at this point
in reply to Tub111
😎
I love you guys, my days are are better now...
What are ya,stupid or something? Just kidding. 😊. My two cents.. I’m doing the drug thing, did chemo, Provenge, doing xgeva, zytiga and lupron. Side effects no big deal except for the absolute disappearance of any semblance of a libido. It is so gone that it doesn’t even bother me that I don’t have sex any more. If you can deal with that reality then the rest is tolerable and you’ll live longer and possibly way longer.
in reply to ewhite999
I don't describe it as a loss of libido at this point. It's more like a loss of sexuality. I feel that I am asexual, as if sexuality is something that is only imagined and exists only for others. I miss it for sure, but there are so many things in life you can enjoy and appreciate. There is nothing to appreciate without life.
ewhite999 in reply to
Nailed it.
Yes, the no sex thing doesn't matter to me. Been so long I hardly remember it. But like I've said before, a pretty girl still turns my head.
LOL, going to bed soon...
in reply to
Oh yah!
in reply to
I'm having a problem of living to die of the cancer, instead of just enjoying life at the fullest. I know it's awful to live this way, why have this way, I don't know brother...
I got knocked for a loop when he left . I was depressed for weeks .. R.I.P.
Don't give up Barry 123456. You are too young (I have a son that old) for that. What is your PSA for you to despair so? At least try Zytiga + Pred. It is also not light on the body, But tolerable. If by quality of life, you mean sex, I am afraid you will have to learn to let it go...PCa is a dreadful malady and claims its pound of flesh.
Thank you sir.... I'm looking into my options
Well you have had a lot of responses! I just want you to know that in 2007 my PSA went up to 72 and I had 42 radiations. All was well until 2011 when they found metastases so I had 30 more radiations and started Lupron every 3 months. Lupron went on for 6 1/2 years and now I am cancer free. I still have all my junk and it has been 1 year since I have had therapy. Have a wonderful life!
Thank you very much and I'm really glad everything is going good for you.... I hope that you and your family always enjoy only the best that life has to offer.
Thanks!
Barry.
I'm still finding my way around this fantastic site and am stunned by this thread you have allowed us all to share. So much wisdom, experience and support for each other. Most of it not giving in easily and demonstrating an incredible strength to put up a good fight with this bastard. Me: 66 yrs old and Dx of Stage 3. I've been on Zoladex ADT for over 12 months (just had next 3 month shot today) and finished Docetaxel chemo 6 months ago. Throwing everything at it including Vit C and the old drugs Metformin, Doxycycline and Mebendazole through an enlightened Dr. here in New Zealand. Really getting into the exercise and feel great except for the missing libido. Have great memories of what my wife of 20 years and I have shared in that regard and look forward to many more fantastic years in so many other ways. There are so many options but we will be with you all the way in your choice.
Thank you so much and there are a lot of very brave and wise people on this site.... I'm glad to add you to the list of those folks and also that you're doing so well..... I hope you and your wife continue to create wonderful memories together forever.... I've always wanted to visit your country.... From the scenery in the Lord of the Rings movies it must be stunningly beautiful...
Hello. I'm new to this group hoping to get information on how ( or IF) to proceed with Hormonal Therapy given the price tags... Wondering how people are paying for these drugs... Being on a limited budget the price of staying alive is still another reason that I am thinking of bowing out rather than going on Hormone Therapy.... Don't make little enough to get government help.... I'll have to do some real homework re: alternative methods to finance this...
I'm lucky in that I'm covered by the VA and I'm sure many others here probably are as well..... I just don't know other than private insurance.
Hello Barry... I can welll understand why you might want to D/C treatment. I , personally, have ignored increases in PSA post radiation because going on Hormones would have eliminated virtually everything that I enjoy in life.. now I am facing likely Bone Metastasis and will be faced with the difficult decision to proceed toward death or find a way to take myself out prior to the worst of it.
I got 8 years of living the way I wanted to live instead of a greater time period of very compromised existence...... It's a very private decision and there are always going to be those who will say simply being ALIVE is better than death.... Yes..we have that biological imperative to remain alive but quality, to me, far outdistances quantity.... I only wish that the world were more tolerant in terms of providing more available methods of kindly exiting this world when our QOL has diminished to the degree that it no longer makes sense to go on...
It's tough and my heart goes out to you.... In so many ways you and others have it way harder than me.... And your right... We (meaning society) is kinda all over the map on how we dispence both our compassion and to whom we dispence it.... There are some states I think that have laws in place to help in certain situations.... I just don't know the answer.... Hell there's so much I don't know... I do know that there are some doctors who are starting to question whether it's a good thing to extend a man's life no matter the cost to his QoL.... Maybe it has to start there. At any rate.... I truly hope that the disease hasn't made it to your bones and I'm pulling for you..... Everyone on this site is.... And no matter your decision brother.... I stand with you proudly
"Never give in-never, never, never, never....never yield to the apparently overwhelming might of the enemy." Winston Churchill- There are too many options available to fight this cruel disease. The quality of life is often what we create with our own energy. Science and cutting edge medicine makes a difference. Trust it. Believe in yourself. There is no such thing as accepting the inevitable. Having dealt with this issue since 2011 and still going strong, I am convinced that excellent doctors, cutting edge medicine and a commitment to taking care of yourself will give you a quality of life beyond your wildest dreams. I too was a skeptic!!!
I'm not sure how to go about this, but a quick update..... I had appointments at the Atlanta VMAC the 20th of last month.... Palliative pain clinic and Oncology..... I Turned in my Advanced Directive and informed all concerned parties that I would no longer be taking any treatments for the time being but that I would consider chemo in the future but that hormone suppression was a non starter. I also declined any labs or active monitoring by the VA. I do not want to know psa levels or anything else related to my condition at this point. I will base my future decisions on how I feel physically.... The Eligard hopefully will have disapated by June or July.
The way I see it , it's a matter of attitude. I sometimes am glad I'm set free from trying to get my genes out there. It can allow you to do other things. I now have grand children. I've been spoiling them for 6 years now. Retired, I can't wait to see them. If u accept the fact that part of life is losing everything then you stop caring that u don't look like Charles Atlas anymore, and that your labido is history. Doing hobbies with the Grand kids to me is a second child hood. I take anti depressants. I don't want to to kill the party. I hope u can see this side soon. You might find something worth living for...good luck.
Thank you.... I have 2 beautiful grandchildren myself.... Tatum a very precocious little girl is 5 and Nash her impish to the point of being sly 4 yr old brother.... They call me Poppy and we play... and play.... and you know. I lost another grandchild to suicide a few years back.... She was only a week or so from turning 13..so I have known both the greatest of joys and sorrows that grandchildren can bring.... I believe I have accepted most of the things you mentioned and truly sex isn't the overriding factor for me.... Not even close.... I plan on doing a round of taxotere and Casodex sometime in the future if I don't come across something even better.... I'm still active and stay as busy as I can.... But I'm sure you already know how complicated life can be and mine is very complicated at the moment... I hate sounding like a defeatest.... I haven't given up as much as taking my time and making sure as much as possible I'm taking the treatment that best suites me and helps me accomplish my goals... I'm happy that you're happy and you certainly do have the right attitude... Keep on keeping on!
I'm really sorry to hear about your young grandchild. I can't imagine how difficult that is. Good luck to u sir in whatever u decide .
Thank you.... Tragedy finds us all at times.... But the two little hooligans that keep me in line now are beyond words and like your grandchildren are to you, mine somehow make everything in life feel new and innocent... I wish you all the best as well sir.
Hello Barry my name is rob
Hello Rob.... Welcome to the struggle
Well I know this is over 2 years old but I thought I would update my situation.... I filed for disability through the VA and was awarded 100% disabled and I see a non-VA oncologist every 3 months basically for labs... As I stated 2yrs ago I was discontinuing treatment and so far it's worked out. After the 6 month dose of Eligard my psa has remained a steady . 20. I've told the oncologist that as long as it's like that I see no reason to treat it... He knows my feelings on hormone therapy and respects my decision....when the time comes we will do chemo and hopefully that will give me a couple years... The hardest thing on me now is that rheumatoid arthritis came back with the cancer and that is hell but I can't complain...
in reply to Barry123456
Nice results Barry. Seems like you won the pca lottery so keep riding that bull for as long as you can.
Barry123456 in reply to
Thanks.... Yeah riding a bull is absolutely right and I know I can get thrown at any time.... I just hope I haven't jinxed myself posting about it..... And I'm sure as hell not advocating this path for anyone other than myself because you are right.... I got lucky and that's the truth of it... Good luck to you sir
in reply to Barry123456
Hi Barry
Congratulations on doing so well for the last 2 years.
I completely understand why you chose that path because I stopped treatment 4 years ago.
I made that very difficult decision back in early 2017 due to severe side effects and have only been taking Essiac tincture and CBD oil since then.
I still have my prostate and haven't had chemo or radiotherapy.
Four years later I'm doing fine and have never regretted my decision.
I'm not suggesting anyone else should follow my example. We're all grownups capable of making our own decisions. I'm just reporting what I've done and my results so far.
If you click on my avatar picture you’ll be able to read my bio and some posts I started about those supplements and my own cancer journey.
I'm the first to admit that there's no peer reviewed scientific evidence to show that Essiac or CBD oil are effective, but I've been taking Essiac tincture together with CBD oil for almost 4 years and am very happy with my results so far.
When I stopped ADT in early 2017 due to severe side effects my oncologist assured me that my PSA would keep continually rising and my mets would spread further.
However, almost 4 years later my PSA is virtually the same as when I was first diagnosed December 2016 and my 2020 PSMA PET CT scan was better than my December 2016 PSMA PET CT scan.
I still see my oncologist every 3 months so he can keep a track of my progress.
He is amazed how well I'm doing as it's over 4 years since I was first diagnosed. He tells me to just keep doing what I've been doing because it seems to be working for me.
Here's a link to the post I started on this forum about my own cancer journey.
healthunlocked.com/advanced....
Best wishes to all
Dave
Barry123456 in reply to
Thank you Dave, that is awesome news and I sure will check out your site. I wonder if the cbd oil might help with my arthritis as well. At any rate I'm glad to hear that you are doing so well
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