I've learned so much from this forum and the brave guys fighting this horrible disease.
I've been dealing with it just short of 3 years and wondering, should I just let it go and put it in god's hands. Done a lot, all the way to SRT with ADT.
I'm not a quitter but when is enough enough? I know so many on the forum have been battling for years but I would assume at a cost to their quality of life. I'm 68 in good health until this blow.
MO said to me 4 months ago had a 15 yr C S S - between 72 and 64 % - could be minimally better since I had SRT. Not sure if that meant with additional treatment or not - will ask next week.
Average male life expectancy is 79 yrs - heck, I'd take that ina min if some decent QOL went with it. Not ever sure what 15 yrs C S S really means.
Thoughts, ideas and experiences greatly appreciated.
thanks
Written by
ken12491
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I always take the saying "God helps those who helps themselves" and I live by that. I take that meaning as the only help that I'm going to get is through my actions, the actions of others, and either good or bad luck.
My father is going on 9 months now on zytiga, prednisone and lupron. Does he have some symptoms such as fatigue and hot flashes? Yea. But that didn't stop him from working in the backyard yesterday for 10 hours, pouring concrete, making a garden, and then coming in the house and making dinner. Did he have some aches and pains? Of course. But he was happy doing it and the alternative to stopping the medications is much worse in his view.
So what I'm getting at is that life is different for him, it's tougher, but he still loves life and enjoys life. I still love going out with him to auctions, and to get food to eat. He still laughs, loves, and enjoys life. Still days of depression, but he works through it. He is getting used to his "new normal".
Some guys would rather be in the ground than have their peepee stop working. I'm of the mindset that this life is all we have, so I'm going to roll with the punches and continue to find happiness and strength in the small things. It's amazing how resilient the body and mind are and how you can adapt to any crappy situation - it just takes time.
nothing now - last lupron shot was on 2/18, a 3-month dose. met with the MO about 3 months ago and he said ADT could be back in my future. He also said new meds are in the pipeline that might be more tolerable than Lupron but did not mention the names of them. txs..
trying hard not to google my self nuts but have been for the past few days in anticipation of my MO appt next week --- but I m under the care of MSK and should be happy about that --- their slogan ' less fear and more science ' hope it's true.. thanks.. I now see why they call it ' practicing medicine ' so many options and we re all different.
When the treatments threaten to bankrupt you or your family or the side-effects degrade QOL to the point the extra time gained is simply not worth it, it's time to let nature run its course..A good MO or PCP will let you know when to start getting your affairs in order and stop chasing after cures that don't exist...
Nalakrats, with less than 2 years on the clock, now would be a good time to do the supplements post and the things that do not require drugs. Intraductal with liver mets PSA .01, T less than 10, 2.5 months since 2nd three month Eligard refusal, cgA 218. You are the only one I am following. I feel like Eligard did some permanent damage. I am frigging hopeless.
You are struggling with the same dilemma as many, balancing out the QOL issues with the understandable goal of living longer. The calculus is a bit different at your age from mine (75).
The men in my support group struggle with this, too.
Everyone's situation is unique. Age, general health, aggressiveness of the individual PCa, goals, definition of "the good life."
Everyone's decision tree is different too. I find the MO not to be helpful in this decision because they are about one metric only: survival-months. I find them dismissive to the point of untruthfulness about the profound effects of the medications they promote. "Well you can make a few lifestyle changes to overcome those side effects" seems to be the sermon. A few lifestyle changes do not reverse neuropathy, do not reverse growing breasts, do not reverse loss of muscle mass, do not reverse loss of bone mass, do not reverse mental fogging, do not reverse memory loss, do not reverse coronary artery disease, do not reverse dementia. [to name a few]
So you have to make that lonely decision and then try to help your friends and relatives understand your reasons--whichever way the decision goes. Good luck in whichever path you choose.
It saddened me to hear of your obvious lack of interest in life. There must be an underlying reason beyond the prostate cancer and treatment as I have gone through ten years of Pc treatments, the last five on Zoladex on and off.
At 87 years old I still have zest for life and take up new interests and challenges, let me tell you what I do, and have done, then perhaps you can see a way of improving your outlook.
For four years I had kept my PSA around 90 with supplements, Cancell then Paw Paw extract, no other treatment then my wife died suddenly and within months I had a shut-down of bladder function, a night in ER that I would rather forget, and a Foley Catheter plus leg bag.
A nuclear scan the following week showed fast growing tissue in the left ureter, kidney and right hip girdle. My urologist offered a TURP as soon as the Zoladex which I was now on had reduced the size of the prostate. The leg bag was not as bad as I had imagined, I now had a full nights sleep and could still dance at parties.
Six months later at 81 I had the TURP, the urologist said I was his second oldest patient and his quickest in recovery. I put this down to the Dr Johanna Budwig diet that I had been following for those six months, and still do follow.
A follow up Nuclear scan showed no involvement outside the prostate so the diagnosis was reduced to stage 3 Gleason 7. All the side effects from the Zoladex were annoying, particularly the night sweats so I did research on natural therapies compatible with the Budwig diet with a view to reducing the frequency of the 3 monthly shots. From greenmedinfo.com I found a human trial of white button mushroom powder to keep PSA down, which it did for 6 months, then it rose to ~20 by 12 months so then back to the Z.
After that I did Asparagus from a Canadian trial, that worked much the same as the mushrooms, but at least I was only having one Zoladex a year. There are other things I incorporate into the smoothies of the diet, mostly derived from greenmedinfo, a wonderful database of natural remedies and diseases that is searchable and all the papers are published and the abstracts free, some of the paywalls can be sidestepped.
A young acquaintance from meditation class who was suicidal from neck pain, a whiplash injury that his specialist prescribed heavy painkillers for was so inspired by my fitness level at 85 that he saw a Naturopath. She found his pain was muscular, his diet was awful, and he was killing himself with artificial sweeteners. Now he is pain free, goes to Gym, is growing a herb and vegetable garden and has taken on pets.
At 59 I had bad arthritis, shoulders and hands mainly, so gave up sugar and baked goods and took about an ounce of green ginger juice a day for some years. That had stood me well for even though for the next 17 years of my second marriage I smoked a pipe and drank a lot of wine, the arthritis never returned.
Now my diet is mainly fruit and raw and cooked vegetables and the right proportion of quality omega 3 and 6 oils plus olive and coconut oils. As everyone is different I think a visit to an up to date Naturopath would do wonders for wellbeing and mood, as would a regimen of short but intense exercise. I do stationary bike, short burst max. load, skipping, the Canadian Air force 5, bushwalking, plus sauna and swimming once a week. I meet new friends through U3A (university of the third age) which offers 30 courses to choose from, mostly volunteer facilitators and donated venues. My late wife has let me know she is fine but I'm not quite ready to join her yet, still got things to do!
thanks for your story - but you misinterpreted my interest life -- it's strong and I m 20 yrs younger than u ---it was merely a question - u read into the question incorrectly --best of luck to u going forward. My PSA level is 1.25, but on the rise...
Sorry about the misinterpretation ~ but the advice may help if your PSA keeps rising. Mine doubles every 6 weeks if left alone after the Zoladex wears off so by finding alternatives I hope to keep Zoladex effective, usually only 26-36 months,
CSS stands for Cancer Specific Survival. You may or may not die from any other cause either earlier or later than 15 years, but there would be a high probability that your cause of death, if any, within 15 years would NOT be due to your your current type of prostate cancer.
Almost 6 years ago at age 65 I was in great pain due to highly metastatic prostate cancer that had spread to lymph nodes and about 20+ bones, and a PSA above 5,000. The "usual" medical treatments took away all that pain, and - despite some side effects - have given me my Life back and many Good Times along the way. For me, I have been glad to have the chance to live as long as I have, relatively pain free, .... rather than allowing my extensive disease to start running as wild as it originally was before. In my experience, it was possible to be more adaptable to new realities than I first expected it to be. Good, compassionate communications with my spouse/caregiver and in local face-to-face Support Groups has been helpful, too.
In my experience, many of the changes that came with some long term treatments came on slowly, .... giving me some time to adjust to them, in both a physical and mental/emotional sense.
Thanks for reposing Charles - that is an incredible and such a positive story - that helps me so much. I wish the best to u for a very very long time to come. you are truly a figther.. god bless you for sharing with me..ken
I too was dx at 65, regional so I did have it all, RP, SRT with ADT and now am going back on Lupron soon...
I've talked to a few counselors about this and no help at all - u must walk in our shoes to know and help.. you and others here have helped me.
btw - played by all the health rules and never had an issue until I was 64, then had an HA, bypass surgery and one year later get hit with the horrible disease. Looking back only 1 month after the HA I was actually grateful I had it and it was corrected --- never spend a moment thinking about it - but this PC is hanging over my head as it is for thousands other fighters - I get through it with stories I hear from guys like you and this forum.
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