Guys, I can’t put into words how supportive this group of warriors has been on this journey. After 40 months of being sick and tired of being tired I’m searching for a new path for an improved quality of life. I’m a young 66 year old who loves to hike, golf and ride my motorcycle. I’m contemplating having a discussion with my care team on ending my dependency on zytiga, prednisone and lupron. My thought process is I’d rather feel like the my of 3 years ago for whatever time I could than living with the continuous ups and downs of the adt regiment. My question is does anyone know of anyone else who’s chosen this route and what their experience was? Thanks in advance for your consideration of response.
A Return To Normal?: Guys, I can’t put... - Advanced Prostate...
A Return To Normal?
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3putt
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67 Replies
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Are your treatments working?
3putt• in reply to
Depends on what you define as “working”. My psa is in check. I’m not in any pain. But, quality of life? Not how I want to ride into the sunset.
• in reply to3putt
I can certainly understand how a person would get tired of the side effects of this treatment. I have lots of experience wth that as well.
What I also have experience with is what it's like to live through untreated, symptomatic stage 4 prostate cancer. That is orders of magnitude worse than any side effects of treatment that I've experienced. I would describe that as pure hell.
The choice to stop treatment is everyone's right of course, but I don't think it's realistic to expect quality of life to improve. And another problem may be that it's not possible to get back to where you are now if you stop treatment and then decide later to go back to treating your cancer.
Wishing you the best in whatever you decide.
• in reply to
Thats what gets me. Do ADT and you might get cured. Whoops sorry. Plus even if you quit you’ll never have T again. Double sorry
• in reply to
It sucks no matter how you slice it. I don't like ADT either, but it's keeping me alive. I guess I have a different perspective than many.
I was in excruciating pain when I was a diagnosed and barely had enough energy to get out of a chair. I was quite sure whatever was wrong with me would kill me. They put me on Casodex for the T flare before my first Lupron shot and after 3 days on Casodex I could already feel an improvement. I was essentially pain free in 3 weeks, it felt like a miracle.
I don't have an illusions about what this disease can do to me because I've experienced it first hand.
Unfortunately, it's a choice between bad and worse.
3putt• in reply to
Truer words never spoken.
• in reply to3putt
We're all with you on how much it sucks.
dhccpa• in reply to
You have stated the dilemma very well.
• in reply to3putt
Nobody wished for this.
Have you thought of a regular exercise regimen. It seems to work for a lot of us
Indeed. Daily regiment of 25000 steps and an hour of yoga. I’ve been blessed with a wife who loves to hike as much as I do and is a yoga teacher to boot. I agree 100% that exercise is a critical component in fighting the side effects plus I enjoy it. Unfortunately, it does very little to counter the fog , fatigue and the funks that seem to increase with each passing month. Thanks for the suggestions.
Thanks! While a returned sex drive certainly would be a added plus, it’s more important to be a little more human, if that makes sense. Looking for a return to a more normal lifestyle, if that’s in the cards. Fatigue, moodiness and other adt side effects have taken a toll. I’m more interested in quality than quantity. My life has been nothing but awesome over most of this 66 year spiritual journey. I really want to enjoy what years my human experience has left equally so. I plan on documenting this new chapter for those who’d care to read it. Thanks again for being you.
• in reply to3putt
Count me in as a reader
Your post captures the quote I have in my office. "We are not human beings going through a temporary spiritual experience. We are spiritual beings going through a temporary human experience." Husbs and I will be following your journey and wishing you the best.
I am one step behind you, brother. With the same philosophy. I am also a believe unafraid of the prospecto of seeing the face of my beloved creator.
• in reply toCountryJoe
Way to go Country Joe🙏
Unfortunately, you don't get the choices you imagine you have. The cancer takes its toll and runs you down, makes you fatigued, and puts pain in all your bones. Then comes crippling fractures. Wonder drugs like docetaxel, Zytiga and Xtandi not only extend life, but postpone the pain. Unfortunately, their effects do not last forever.
When they stop working, there are some hopeful trials of bipolar androgen therapy (BAT), which alternates periods of high testosterone (in which you feel good) with periods where the ADT predominates (in which you may feel fatigued). Unfortunately, T alone cannot be given - it makes the cancer progress more quickly. But BAT after Zytiga makes subsequent Xtandi last a lot longer (even if there is no net improvement in survival). You can read about all this here:
prostatecancer.news/2016/09...
Extending the effectiveness of second line hormonal agents is the subject of many ongoing clinical trials.
thank you for sharing this info
Hey 3putt! I know of which you’re speaking about. Sick and tired or being sick and tired. Ive been on constant adt six years now . with no balls for the last three . No t no strength stamina or mental edge anymore. I think that there is no returning to normal once we walk down the SOC path. Adt and imrt are why I’m here now .. many days I contemplate jumping off a cliff. I snap out of it . I’m entering a painful phase we’re my ribs fracture and my joints cry out in pain. Besides that I have no signs of pc. That’s all the oncos care about. Side effects and living this is ours to figure out. Hang in there baby!
Turt713171• in reply to
Well said. Our teenage years are long gone
• in reply toTurt713171
I felt that I was a teen for about 53 yrs until
Pc stepped in on me .. ol man now at 60 🥳😂
We are each unique in every way. Our cancer biology etc. So how long before the cancer takes off and ravages and illicits pain etc. would probably vary.
Someday I will note here everything that was going on with me before I saw a doctor and got my diagnosis but I look back on that and it was not only physical but mental also that was declining prior to treatment.
Had same experience as Gregg57 in that soon after initial treatment I felt like a new person. Appetite returned etc. Wife was worried I wasn't taking my cancer seriously as I was quite the happy camper. The difference between active untreated PCA and treated was immense.
I looked back at that month or two prior to diagnosis a few months ago and concluded that if I had been the mythical Native American Indian Chief I would have had the wisdom to go to the mountain and die.
• in reply toCAMPSOUPS
In the rear view it’s all 20/20!
• in reply toCAMPSOUPS
No looking back.🧐
You can reduce the side effects of ADT significantly by adding estrogen. Many side effects are not caused by the lack of testosterone but the lack of estrogen which the male body produces from testosterone. Provided there is a sufficient level of testosterone. By adding estrogen, you will feel much better and get close to "return to normal".
healthunlocked.com/advanced....
Very interesting. Do you know if Dr. Morgantale published his protocol?
Thanks Nal.
I watched a young man in Denver die a fairly fast death and leave a young widow. Can’t say it was easy to watch, but it was his choice. That said stage 4 here since August of 16, I can’t give up myself as I love the time with my wife, kids, grandkids and great grandkids. I’m sitting here right now watching my father who has dementia, great man and my hero, now at 89 he can no longer stand or walk. Don’t know what would be the best way to go but I don’t want to go that way😢😢😢. Good luck which ever way you choose there warrior
Drop your putter and get out your driver.....go get a psma scan, and see if nuclear medicine can be your ticket. Lu-177. Pull up all of the post..Sen in India is using a different protocol that is effective. You are chemo naive which is good. I know India is shut down now but it will open. Take 3 trips...also Clinical trials here are going on..quit putting around and grab that driver....Blue Skies ........Skies King and Penny (woof)
Thanks for suggestion. Played 18 holes yesterday and going out again this morning as the weather in Northern Ohio is starting to transition to Spring. It’s amazing how one can adapt to new techniques to our swing to keep one's score consistent. Trying to apply same discipline to PC. Have a great day
I have found that I get tired very quickly while on ADT. I finished 6 weeks of EBRT just over a week ago and feel the fatigue on top of the fatigue. Now that golf season is here I am shocked at what it’s done to my game. After just 9 holes I am knackered (walking of course). Before PC I would typically hit a 9 iron 150 yards. Now it takes an 8 or even a 7 iron to get the same yardage. The lack of strength in my legs is very noticeable. Lack of sex is manageable, but a changes in my golf game are intolerable. I still pared 4 of 9 holes yesterday but my legs are aching like crazy today. What swing adjustments are you doing to stay consistent? I’ve gone from a 6 handicap to a 16 handicap in one year. This is a disease that keeps on giving, but in a bad way.
Shifted to Moe Norman’s single plain swing. Distance is now a struggle but accuracy has improved despite bone ache and the dreaded fog.
I too went from a 6 handicap to 18. The driver used to be the best club in my bag, I just cannot hit it anymore or for that matter most of my woods either. I am confined to using irons, which makes every par 4 a 3-shot hole. The insides of my legs feel weak. Almost always I used to carry my bag and walk the 18-holes, now I can barely walk 9 with the bag on a pushcart. I so miss the old days, which was just 2-year ago. ADT has taken a lot out of me.
You da King of the blue sky. Woof!
10 years after my husband’s prostate surgery, he was 5 months ago diagnosed with Metastatic cancer and they found cancer on one of his vertebrae.He got a 6 months Lupron shot, radiation, Xtandi, Xgeva and got so ill with some infection and rash etc that he was 5 days in the hospital with some infection and they pumped more medication in him. He was in bad shape.
He finally just said he is going home. We discontinued with all medication and went after a week on vacation where my husband recuperated in the sun.
You are only in the 60th and have lots to live. My husband is 80 but he was very healthy - no medication and has a hobby of sporting clays etc.
We decided that quality of life is paramount. I did research on homeopathy for metastatic cancer and we are giving it a try.
Unfortunately my husband just started the regime and I can not inform yet on experience and results. But it is a personal choice and we are a lot happier. Please let me know if you decide to go this route and we could exchange some knowledge and experience.
3putt• in reply to
God bless and best of luck on his journey.
• in reply to
Hello Enail. I understand the thinking. Peace to you both. 🙏
First off: what is your motorcycle of choice?Second: good going on the 25,000 steps and yoga. ( My wife and I are hikers too. Trying to train for a JMT thru hike this summer. But way laid by spine surgery from a disc collapse, now slowly recovering. Which leads me to Third: I could not tolerate standard ADT. Tried estradiol patches per PATCH protocol and found it to be much better. ( with tamoxifen to keep boobies away). Switched to firmagon with low dose estradiol patch (one instead of four) and found that was just as acceptable. Worked just fine.
Except the loss of testosterone was robbing my body of all musculature (in spite of intense exercise) and ultimately lost core spinal support etc. Causing my current need for spine surgery.
So I decided to do a personal test of intermittent high testosterone (SPT). My PSA is low and steady and I have no symptomatic mets so my MO finally agreed to allow it. I took 200 mg of T-cypionate IM weekly for 4 weeks. My PSA only rose from 0.08 to 0.18, then came back down to 0.12 after a month with no T and also not on anyADT. And BTW I felt and feel wonderful and am regaining strength.
My conclusion is that , for myself, it is reasonable for me to use intermittent periods of SPT such as one month out of every 3 or 4 months or so. Ultimately I will add back in some form of ADT ( with estradiol) during the off periods when PC control requires it. Getting a PSMA scan again next month to see where I’m at.
Note: I believe Morgantale’s patients on 3 months SPT / one month enzalutamide are also on baseline ADT throughout. Not published yet.
Good luck. Paul ( an Africa Twin AS rider)
You got an awesome bike my friend. I work one or two days as a floor plan auditor doing surprise visits to motorcycle dealerships. I hadn’t ridden since college and kids until I started doing these audits after I retired a few years back. The it became the deal of the day as I’m on my fifth bike in 3 years. First was small Honda to just buzz around on, ext came a Boulevard M90 and then. triumph street scrambler. Last fall I fell in love with a new Indian Scout, I have a sneaking suspicion that the new 2021 Twin is in my future. Nothing tales one’s mind off their mortality than zipping along the backroads on a sunny Saturday. Also, it appears your other decisions our equally well thought out. Much appreciated.
Stage IV prostate, in my experience, has been a very humbling disease. I was originally in excruciating morphine level pain in Nov 2013 at age 65 with a bone scan that lighted up like a Christmas Tree, lots of affected lymph nodes, and a ridiculous PSA of 5,006. Treatments for PCa have kept that level of pain away for over 7 1/2 years now. I did experience progressive fatigue over the years, particularly after adding Xtandi over 3 years ago. But it was nothing compared to that pain, and the prospect of broken, ravaged bones.
As my absolute abilities declined, I found myself repeatedly going through periods of anger, sadness, and mourning over the loss of my prior capabilities. It was a process that took time. I talked about it in some cancer support groups. Things so easy in my youth that I could no longer do. Roles and responsibiities that I could no longer take for granted, and eventually just could not do. I got to where I couldn't even leisurely walk behind a lawn mower in any heat for more than a few minutes at a time, and had to get a yard service. There have been numerous "adjustments" and "workarounds", too. But I am still alive, and, overall, the PCa treatments and their typical side effects have been better than the alternatives of what might have happened with untreated disease over the past 7 1/2 years,
I hear ya loud & clear. Went through a period where I couldn’t wait for my wife to go to work so I could attend my pity party in private. No doubt this disease messes with our mind and emotions every bit as much as our bodies. During my fatigue breaks I’ve taken to studying Greek philosophy. Doing my best to focus on that which I alone have total control over and leaving the rest up to a higher power. AMORE FATI
• in reply to3putt
Time to be philosophers .. 👍😎
• in reply toctarleton
Bravo 👏🏼
Does your userId describe the sound of your bike? putt putt putt?.... If so get a real bike that goes VROOM VROOM VROOM.....
Keep on..... Keeping on.... (and don't forget S,O.T.)
Just for you:
youtube.com/watch?v=ETz0elh...
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 05/15/2021 10:43 PM DST
I am in a similar situation. I sold my Goldwing years ago, thinking I had to get my affairs in order. WRONG. I have been working with various therapies for 10 years. Most recently, discovered mets in lymph nodes. Switched from just Lupron, to Lupron and Casodex. I was miserable and ended up quitting after a couple of weeks. Spoke with my wife, and said if the meds are going to make me sick, I will be off of them pronto. Switched to Zytiga and prednisone (still on 6 month Lupron). My PSA was knocked down from 32 to .10. No visible side effects, but liver enzymes went through the roof. So, I'm on a break from Zytiiga. MO wants me back on it as soon as the liver enzymes are "normal". But you know what? I think I will enjoy the rest of the summer with no meds. I'll check the PSA and if it starts back up, I'll go back on. Might not be the best long term strategy, but while I can, I'm going to live life to the fullest.
I went off zytiga due to blood count during radiation and restarted with 750mg instead of 1000. My blood counts have remained stable since. Not sure this is an option for liver enzymes, just a thought. I became undetectable during the break and and still undetectable. Next test late June.
• in reply toCharlieBC
I Sold all toys shortly after dx .
• in reply toCharlieBC
Hec yah!👍
I'm 78, with stage 4 metastatic prostate cancer, in bones. I'm on denosumab, adt, and doxetaxal. I exercise every day; 32km walking fast, in last week plus resistance training2×. Have been on adt 6 months. Had 3 infusions of chemo. I feel today, just like my old self ie. very fit. Exercise is the answer, and stay on your treatments. Good luck.
SD BAT consists of the administration of a high dose of androgen—also called testosterone—in an effort to control prostate cancer in men whose tumors are progressing on androgen deprivation therapy (ADT). This causes the levels of testosterone in the blood to alternate between the polar extremes of very high and very low during a treatment cycle (Figure, see pdf).
I hope you realize that what works for you may not work for others.I am in awe of your attempts to find pathways that are novel. Do you have medical training??????
I understand your motives to change your regimen. 40 months is a long time to be at the mercy of side effects from ADT. However do not throw caution to throw to the winds.You are extremely fortunate that ADT works for you. I did it for 18 months but I didnt go nuts with it. I was a little messed up but mainly it was knowing I had the disease that made me depressed and non focused. I would wean off the prednisone and just take a holiday and monitor PSA. Take baby steps and nothing radical...please.You may be able to do IADT or INTERMITTENT ANDROGEN DEPRIVATION THERAPY.
Ok as a wife I will state my husband will fight till(no rose colored glasses) when no more can be done. This disease is mine too, we are a team! No one is promise a carefree life .
• in reply toCollarpurple
We trudge on together. I Thank almighty God above for my sweet wife’s love ..
I am not so confident. I think we need more concrete findings. when I think I know it all is when I find out I m barking up the wrong tree. I get overly enthused when I make a real discovery. And then I say whoa....thats me not him.But a little bit of real experience is worth all science to the contrary.
patients?
i have no issues,dont need to move on..iam here just like you i question to learn because i need answers like you do..whats your problem?
you mentioned you have patients...are you a doctor?
thank you for helping others and I am sorry if I upset you..wishing you well ....my sister is in the hospital dying from breast cancer and there isnt much hope..i hope you understand my state of mind. dom
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