Advanced Prostate Cancer
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Severity of side effects from ADT. Do well all feel the same?

After reading so many posts here about ADT and its "consequences," I am beginning to think that the side effects vary much by individual. I was terrified to start Lupron nearly six months ago, fearing I would be reduced to counting hot flashes, watching my testicles shrink--along with my penis--trying to fit my bloated body into my old clothes. Oh, not to leave out zero interest in sex and staggering fatigue.(Note: I also added Zytiga to the mix shortly after starting Lupron.) Am I miserable now? Can't say so. My partner/husband has been most understanding about my loss of libido but we are so much closer now. I still get an echo of arousement. Best thing: we touch each other more now. Hot flashes, you bet. But not devastating. I am also not as tired as my internist and urologist said I would be. That really makes me a much happier man. And following the posts here is very helpful. Would I prefer not to have advanced prostate cancer? Absolutely! But life is really about staying connected and living as large as one can. Stay strong all of you. P.S. Perhaps the side effects worsen over time.

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My side effects from Lupron have actually gotten better in the 16 months I've been on it, with the exception of my hot flashes. I grew and ungrew breasts and my energy level has gotten more normal. As far as a libido, I found life is a lot easier without one.

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Bill, Good to hear that reductions in side effects are possible. My breasts have moved up--not full cup size; and I do find that a much lightened libido is rather liberating.

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Your mindset is excellent and suggests the maturity of a true adult. In the absence of the important pathological factors of your PCa, I have no idea as to how aggressive it is going to be. Keep your focus on the main treatment regimens as advised by your 'good' doctors, pay serious attention to your diet ( heart/Pca healthy type ) and regular exercise. Learn as much as possible on PCa and the treatments under various conditions to be the Manager of your own case and a well informed patient. You should do well.

My best wishes!

Sisira

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Sisira, It's men like you who keep us centered the "right" stuff. I do find that the answers I've gotten here have really helped. I am nor assertive about questioning tests and drugs. I was prostate-cancer free for nearly ten years after radiotherapy. My PSA rise and bone scan persuaded me to start ADT. I had one pelvic lesion and suspicions about two more. Yes, I have learned , as one our members put: To LIVE with cancer.

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Actually side effects from Lupron are inconsequential. Yes loss of libido after three months, loss of erection after four months. Hot flashes and growth in breasts over 52 months, which subsided after halting Lupron. Loss of muscle mass and strength. Energy levels and fatigue seemed more related to the Enzalutimide, I received over 33 months. The real side effects are due to the Chemo, Docetaxel and Carboplatin. Incapacitation for 2 to 21/2 weeks after chemo, nausea, stomach pains/cramps, flu like symptoms. 3 weeks between symptoms. Dry cough lasting for three weeks. Finger Nails beds are dying, neuropathy and cramps in hands. Sharp sustaining cramps/pains to legs, arms, scrotum, feet, hands lasting for 5 to 10 minutes. Given ten different prescriptions for nausea and stomach discomfort, none worked remotely. Pickled Ginger and Peppermint gum help reduce those effects somewhat. Fortunately minimal diarrhea or constipation. Constantly hunger pains which can be only be reduced by overeating. Exercise is a laugh, I can barely walk 30 feet without being overcome by lightheadness or dizziness, I must use a cane to walk. If I do walk 30 feet and am not dizzy, I have to stop and catch my breath for several minutes. Our state will not issue Handicapped plates, unless you are in a wheelchair.

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bb, I am chastened by your reply. I certainly hope you get relief soon. Get better. Thanks for taking the time to reply.

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If it helps, you try to deal with it, Yesterday I was in bed or alternated in front of laptop. I was up until 5AM, couldn't fall asleep. Today, I got up at 1000, had 2mg of methadexasone, a bagel & cream cheese for breakfast, took shower and got dressed. Kind of forced myself, grabbed a sub and went to Amer Legion, watched NE Patriots blow up and went home around three. Rested for a while, ate supper. I still felt poorly, but made myself get up and out. Been snacking to control my stomach upset, and chewing peppermint gum right now. I will take a sleeping pill soon, hope it will let me fall asleep, didn't last night. Maybe resting all day yesterday, interferes with my sleep pattern, Sleeping pills (ambien) usually work 4 out of 5 times.

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Keep taking the Ambien. And do make yourself move. It was hard for me at first but then...well, not so tired now.

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Which state? Most states follow the recommendation from a licensed physician. In Texas one simply downloads the appropriate form, take the form to your treating physician, and after his signature, take the form to the County Tax office and pay $5 for the placard.

GD

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Massachusetts makes it difficult

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Take a look again my friend, your state is exactly like Texas. mass.gov/service-details/le...

Heal well

GD

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BB I hear you on the differing side effects of chemo and adt. I feel your pain as well, and I hope you can get some relief. It is absolutely ridiculous that you can not get handicapped plates, I would speak to the oncologist about this.We aree all here for you.

Dan

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Dan, Thank and best wishes for yout, too!

BB

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You are going thru hell right now..I’m sorry for the suffering. We do learn how to suffer with this dusey of auto immune disease. I’ll pray for relief.Sometimes that’s all that we can do..Best wishes!

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I am also one of the lucky ones who doesn’t really suffer much from ADT. Hot flushes and loss of libido are the most obvious.

Have not suffered fatigue and can still hit my golf ball as far as I ever could - though I do think older age is starting to have some effect. Cetainly don't have any of the depression or brain fog that many others complain about. Was aware that weight gain could be a problem, so started to monitor my diet carefully and so far so good.

Guess I am one of the lucky ones.

Chas

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We are all lucky in some ways. You and I caught a break with ADT--so far. I've also monitored diet, exercise. Brain fog the first month. Keep hitting those golf balls far.

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You are a”lucky dog” so to speak. I myself am plagued with side effects and symptoms. But as I read our compadres stories here ,I can’t help to be grateful that iI’m as well as I am. I’m not downplaying the seriousness of our PC counterpart rather grateful for the 53 yrs of almost perfect health that I had. That was a blessing.Life is short,thank god for the good days ...

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Glad that you are doing well. Yes, Lupron and Zytiga have some pain in the ass side effects. However, I am glad that you are experiencing the one good side effect, time. Time to be with the ones you love.

Take care!

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Dr. Who, Yes, yes, yes. Time is pleasant side effect!

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Right on Dr. Who.......

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Hi Ron,

How does that saying go: Don't count your eggs until you're done breakfast.

The reality is that six months is not enough time to get the full effects of this crap. As for me, I had one at the start, one at three months, and then one every six months. It took about three and a half years for me to get the worst of them, and I had to quit working. I don't buy the story of growing and then losing boobs, but I can say that I blew up to a 38" waist from a 32, and am now at 36, almost. Gynecomastia just doesn't go away, it's a solid mass, it has to be removed, but that belly ain't. It's been 7 1/2 years for me now, and I'm trying to find a way off it. Only because 'it is' that bad.

Good Luck, Joe

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Joe, Perhaps I am being premature. I did not mean to sound glib. I just meant to point out the variety an severity of ADT side effects. I will certainly post as mine change. Thanks.

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I just want to make sure no one decides that, "well is that all there is"?

An easy way to check what a normal man's breast tissue is, is to raise your arm above your head, and look in the mirror and look to see if your pec lays flat. It should. Those of us with Gynecomastia, have a visible lump. I actually had a mammogram on each. With that said, I could have the lumps removed via liposuction, but they're not so bad. As long as they don't get any bigger, which I doubt will happen. And, one more thing, they will be of the utmost tenderness as they change. And change they will. Into little girly boobs.

Joe

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There is always Seinfeld's "The Bro." Loved that episode and thought Jerry Stiller was so brave to reveal all.

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Ain’t no wrong replies here only us .seeking knowledge!!

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I agree on the gynecomastia -- I can't imagine something solid going away. You've all probably heard me gripe about there being preventive treatment that I never learned about until too late.

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Someone told me you can radiate the breast tissue. Before or after? I can't imagine this being a first-line treatment

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Before, or early after an ADT shot. Not first line treatment of prostate cancer but a first line treatment of a well known ADT side effect. Are doctors treating only the cancer or are they treating the patient, and meeting his quality of life concerns?

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I agree with that sentiment. Most doctors want to treat illness first.

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First and only, too often. Side effects? Doctor doesn't have to live with those.

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Wholly moley!! That wasn’t in the brochure...Something I can look forward to. nightmare that a no PC man could not fathom or comprehend..hormonally flipping in a frying pan..besides that we’re OK !

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I've been on continuous Lupron since January 2012 and there is no doubt that my fatigue and cognitive problems have gotten much worse. But some of that is probably attributable to aging. And, of course, I'm still alive. There are tradeoffs with every PCa treatment, and we will all assess them differently.

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Steve, I just turned 66 and do, indeed, think aging is a factor. I also believe that exercise--if possible--is an aid in keeping side effects minimized. Diet, too. State of mind, for sure. A supportive mate. Yes!

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Steve and Ron,

I'm 58, so I don't think the cognitive issue has to do with age. I'm on Lupron since 4/10, and I had the brain fog, just as many men here are dealing with. I decided I would try BIRM, as it had seemed to help others out. I started on May 1, and can say that it did eliminate any cognitive problems I had. Just saying.

Joe

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Thanks for the info, Joe

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My hot flashes disappeared when I switched from the 3 month injections to 1 month injections.

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I will talk to my oncologist. Thanks, Clint

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Everyone is different and no two people react in the same way to these medications. My side effects have been minable over the last six and a half years on ADT and chemo. I know I'm lucky in the biggest category of all I'm still alive and that what really counts. I have no doubt I would be watching the daisies grow from the wrong side of the ground if I didn't have these meds. We can all complain about our side effects but no one is complaining about still being alive.

I pray you keep a positive attitude through your fight with advanced prostate cancer. Your attitude is a powerful tool to keep you alive.

Live long and prosper.

Dennis

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Dennis, I do appreciate your thoughtful reply. It helps to know that many men can tolerate these treatments--even chemo--and not be sidelined by the side effects. I was not complaining or crowing about my reaction to the drugs, just offering another view. I was diagnosed in 2005 and thought I was cancer free. Well...now I am learning to LIVE with cancer. Quite humbling but also liberating.

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Side effects do vary amongst the particular Leutenizing agent you use, whether it is injected or implanted---how much exercise you do, and what supplemented diets you partake in. One thing that grows on you over time is a loss of muscle mass, an increase in waistline, which Metformin can help with, Joint pains, lowered blood counts---but controllable with diet.

Nalakrats

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Nalakrats, I have been taking b/p and cholesterol meds for two decades. Also and anti-anxiety med. And my internist, who is the doc who urged me to get a biopsy in 2005 when my PSA was 4.5--a very proactive guy--started me on Metformin 6 years ago. I agree with all you say but hope to stay somewhat in shape.

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There is a Calcium Magnesium protocol for B/P---I started it 20 years ago when I was running 150-160 over 90-100. For the last 15 years I am averaging 105 over 65---no drugs--just my supplemental program. And for anxiety, I use L-Tryptophane, the amino acid. Just a thought.

Nalakrats

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Please share the protocal for BP, Nala. I would dearly love to get off med for good! I know nothing about L-Tryptophane either. Over the counter, I assume. More details, please

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I can discuss things on messenger---your issues are not for public consumption.

Nalakrats

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My husband has been on Lupron and Casodex for 4 years now with two 6-month holidays. Loss of body hair, modest man boobs, fatigue, difficulty losing weight, a little brain fuzziness and hot flashes. No change in his happy optimistic self. And though no libido (desire and orgasms returned on the holidays!), Viagra still works, much to his doctor’s surprise. And he works to make me happy:) He is 69 and wrings every ounce of joy out of life. Every blood test that comes back undetectable is a celebration.

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Haliday, This is the best post I have read all day. Bless you and your husband. I will consider Viagra again.

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People also report changes in thinking...paranoia, anger, etc. Has this been your experience?

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Darryl, Actually I have gotten "softer" in every way. I am no confrontive, don't have anger outburts--even my inner thoughts are much more mellow. I don't cry, as some men say they do, and my thinking--according to my spouse--is logical and coherent. P.S. Some anger starts to emerge when I watch D. Trump, but that is easily solved by clicking the TV off.

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This attitude will see you through..

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Attitude helps...but after a couple of years...and you realize that the shots are NOT going to stop...and you're not going to get any stronger...and you're not going to get your libido back(I could care less about this) ....and you're going to have to PUSH to get going to the gym and your brain is NOT going to get more clear...

basically when you realize that the "Lupron"/Castration....is F O R E V E R ...that's when a bit of sadness/(dare I say)Depression starts to set in.

**I am so the opposite of a "depressed" person...and I still keep super busy doing gardening, cleaning, gym, caregiving to my dog, caregiving for a friend who we have move in with us who's on mental disability, reading, etc....

STILL....EVEN I STILL feel this "wet blanket" wrap around me...and I have to fight to shrug it off....it's an overwhelming sense of futility/sadness...which I assume (since it's new to me) is "depression"....I talk about it with my partner...think about what I have to be "thankful" for....and am able to get out from under it quickly. A lot of people don't find it so easy....Hopefully, you'll be one of those who do not get sucked into depression. Read the "side effects" of Lupron....it's the one I would worry about....and all the little losses we face and fears we face from having Stage 4 cancer....help play into the actual (chemical, I suppose) depression that it causes. Good Luck and keep moving and enjoying every day!

~~John

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Thanks, greatjohn, for replying to my much earlier posting (a year ago or so). I have been thinking about you and wondering how you are doing. I only read the postings on a weekly basis (Sunday). And I rarely respond now. That "blanket" you describe so well is kept at bay by moderating the time I spend reading about this disease and the nearly unbearable toll it extracts. I keep informed and take my treatments. How are you managing now without the shots? What treatments ahead? You have always seemed a most generous person and a lover of life. I try to be the same. My husband--of 15 years--is more than supportive. I garden, clean, exercise, decorate, cook and am now thrilled to be able to download library books to my Kindle. Wow! Who says libraries are irrelevant. We have two mini-dachshunds who are 17+, a bro and sis from the same litter that we adopted 5 years ago. No traveling for us for now. They need us at home! So glad you responded as you were one of the men I came to think about often. You must have had that European trip by now. Keep in touch, please.

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thanks for your kind words. Yes, we did our tour of England, Scotland and Ireland in August and first part of September. It was wonderful. Doing a "motor coach" tour was especially good. After a big breakfast in the hotel...we'd get onboard and all be asleep within a few minutes...LOL..and arrive at our mid-morning stop all rested...and then enjoy it...back in bus...back to nappy....then Lunch...and then an afternoon nap. We walked a lot, saw a lot...but napped and rested in between...so it was a great way at this "stage" of my life to see it all!

I'm not sure what you mean about "how I'm managing without the shots"? I'm still on Lupron...I go in next week for my 3 month shot. I find now that I have added Xtandi to the mix...I am MUCH more likely to take an afternoon nap. My energy level is not super high...but we still go to the gym 2 or 3 times a week...and walk our puppy, Sparky...Morning and Late afternoon...(almost a mile each time)....not feeling too bad most of the time...and I have some times during the day that I actually feel great!

All the best,

John

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Don't know why I thought you were not taking shots. My bad! The lupron is still doing its job. Good! We took a train trip through Scotland (Scot Rail/Brit Rail). We overnighted in hotels and took coach excursions to the outer islands: Iona, Mull. Was wonderful and very relaxing, as you say. Does Sparky still have puppy breath? Be well.

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lol...I call him my puppy...but he's 4 1/2 years old...and his breath is testament to it...It used to be so nice. Now...NOT! He'll always be my "baby".

Have a great Christopher Columbus Day ! ! !

~~John

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