My Story: It all started in October... - Advanced Prostate...

Advanced Prostate Cancer
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My Story

It all started in October 2017 with a regular visit to my PCP for prescription refills. Once the check up was completed and I was leaving he called out to me and said "Hey, you're due for your annual blood work" sure I got some time and they drew the blood. 12 hours later I get the results online. Normal stuff I was being treated for showed up, high blood pressure and cholesterol. But there was a new test, psa. Doc said it was elevated and not to worry as this was not a diagnosis for cancer and scheduled me for a urologist.

Ok, what the heck is a PSA, so I looked it up, and found it was a test for prostate cancer. Well I am nervous now so I look up my results because I dont know what a normal range is. Well I quickly learned 60 was not good. So I started crying at the table. My wife was doing dishes next to me and said "What's wrong?" I could only point to the results.

Well as suspected the follow up did not go well. The "finger" indicated bi-lateral and he said yep, you got have prostate cancer. Obviously the talk was much more compassionate than that. He scheduled me for 2 days later for a biopsy. I show up but my already high blood pressure was way up there. He did not feel comfortable doing it in house and scheduled me a surgery room for the just in case it went south protection. That week I had a bone scan and cat scan. Things were moving very quickly for me. Bones showed clear but a lymph node looked suspicious. I went in 2 days later for a biopsy. Yep it was positive, crap!

The urologist at that point said there was no need in poking around the prostate since there was proof of metastasis.

Oncology scheduled me for 40 rounds of radiation which was the time of my life, and yes that is sarcasm!

Well to shorten this up, I am on Lupron and casodex. My t level is 7 and my psa is <0.02.

Now it is the daily mental struggle, fatigue, hot flashes (about 10 a day) and pain.

Well that is my introduction feel free to comment or ask questions and I will continue reading the forum and praying for others.

Thanks for listening,

Tim

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Greetings!!!

Yup, that’s about how it goes!!

SE’s to ADT can be a pushover or a kick in the face (brain, balls, a$$, back, legs.......) and it doesn’t make you a tough guy or a wimp!!! There are things that can be done!!!

The best advice I can give you is eat well and exercise your body, sole AND MIND! Even if it doesn’t help, it won’t hurt!!

Sometime I feel like a pest but I found that reading, talking, venting on this forum has been very helpful!!!

Best of luck

Jc

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Welcome! Is that a Scarlet Macaw? We saw some down in Costa Rica a few years back. What's the bird's name?

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That's Margie and she is a green wing macaw which is the second largest of the macaws. I also have a blue and gold macaw

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Sorry you’ve had to join a club that no one wants a membership for...

I was diagnosed with a PSA of 571 and 7 major bone metastases. Started on a drug trial ( Zytiga and Prednisone) with Zoladex. PSA dropped to immeasurable within 12 weeks.

That was 7.5 years ago. Still immeasurable and doing well. Most side effects have subsided apart from severe muscle wastage. So what, still here enjoying life. No diet changes or supplements, just medication. I’ve recently added Statins as apparently helps the ADT.

Stay positive, love life, it’s a beautiful world.

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👏

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Well that is encouraging news. My main issues are the fatigue and pain. The mental side of this is also kicking my arse! Do many of you suffer from cognitive affects? Tasks that I was able to complete without issue seem daunting now now. Heck I cannot even remember to take the meds, my wife has to call me daily to remind me...I have even lost my credit card and the keys to my mini cooper, THE ONLY SET I HAD.

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Yep...it's called brain fogginess from the Lupron... very common...went to Walmart yesterday to get paint and mulch--got the mulch--forgot the paint chip for the paint...Thank goodness it is not a 30 minute drive... back for paint today after work...oh well...

Fish

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Don’t get me started!!! My line is that the list of my SE’s was written by Stephen King!!!! I messaged you about talking about it more!!!! I am living in hell on earth so I’m hopeful you won’t have to!!!! Key word is LIVING!

Jc

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I used to lose things all the time even before I started the meds. On the hand, after 2 years I may be able to get a bit part in the next Dumb and Dumber movie. Relax. I have yet to forget something really important.

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Are you still on your meds or did you take a “vacation” along the way?

Schwah

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As I’m on a drug trial (STAMPEDE) it is a requirement to stay on medication. The results so far for the 1900 of us in the U.K. on this trial have been extremely positive. At the three year point, there was a 40% higher survival rate, and it is becoming the gold standard of first line treatment for stage 4 PCa.

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Tommy...

Were you a particularly active person prior to prostate cancer. Taken any particular steps to avoid loss of muscle?? I refused hormone tx because my whole LIFE is about physical activity... PSA has been rising for 7 years and last Bone Scan was negative.... I'm 67yrs old and wondering how much longer I can last untreated with hormones ( untreated my PSA has gone from .2 in 2012 ( post radiation) to 5.9 this March...... Hoping that there are some on this list that have been able to maintain their physical abilities while on Hormone Tx.... I'm both saddened and heartened at your situation.... how did it manage to progress so much prior to initial Dx?? had no one suggested psa testing to you?... Glad that you are able to afford the treatment ( I can't possibly afford the drugs that you are on)....

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Welcome to the forum. Ask questions, seek guidance... You are not alone. It's gonna be ok. Do not read the American Cancer Society's statistics on survival. I did that initially and freaked out. Found out they were outdated by 5 years and need to be updated. There have been multiple new drugs approved since then and currently 269 clinical trials in the US for prostate cancer.. So breathe....relax...

My other issue initially was sleeping and I found that taking melatonin 5 mg helped a lot--over time I have upped the dose to 15 mg--sleeping well and sleep is important... Best of luck, my man.... Give Polly a cracker for me...LOL...

Fish

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Melatonin never worked for me and I have suffered from no sleep for years. Currently i am on 200mg of Trazadone.

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Ever try restoril ?? Could add that at 7.5 mg in with the trazadone....it is a benzodiazepine so you will need an Rx

Fish

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My wife and I always slept poorly. Melatonin and unisom and various prescriptions helped but o began to read how they were all associated with earlier death and Alzheimer’s. So about a month ago we both began to try indica pot. 10 mg thc and 0.1 mg CBD. We were both blown away by how much it helps. 7 or 8 good hours a night and est to fall back asleep if you have to wake up to pee or.... anyway for the first time in years for both of us nod other sleep aids.

Schwah

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gimme, gimme, gimme

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Welcome to the jungle baby. You’ve survived the first round with in great form .. Now it’s about keeping the pc away and the Psa undetectable ..Four yrs ago I too was#4 ..I did 8wks imrt And double By some miracle I’ve had no signs for 31/2 out of four years. We are told that is always comes back . Fortify yourself anyway that you ca; and you will be here for possibly decades. This is just the beginning. Nothing nice for us with T .. Wor’ out eat well and find joy everyday . That’s the point, slapped with a bat wake up call .. Ask anything ! Someone has been there.. Take care young man . This ain’t the end for you . Just a new way of living. Peace..

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Welcome to the forum. That's a great response to the radiation treatment and ADT!

Please know that you do NOT need to suffer with all those ADT-induced hot flashes. Some of the guys here use over the counter stuff (black cohash). I've been taking 75-mg once a day venlafaxine. Stopped 90% of my sweats and hot flashes. Also "adjusted my attitude," says the missus!

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The fatigue and flashes will subside in time. You have a nice response to the treatments. Rejoice.

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Hi PlacidTick

Welcome to a comforting forum where people make others feel welcome and a abate anxiety

I have learned more reading these guys than I have with internet or DRS

I know the shock must be terrible but don’t lose hope

My husband has this dreaded disease, and I come here for comfort and information

Good luck

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Hate to hear the monster has attacked another brother. But sounds like they caught it pretty quick . Fight the good Fight 🙏🙏🙏🙏

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Be sure to exercise to help with some of the side effects. Your results are tremendous and you have a wife for your journey. Life is beautiful so enjoy it!

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Best if luck Tim

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Hi Placid, first if all, what a great parrot. I know the feeling and many of us will nod, and say that we went through the same. I am sitting at home in rural Belgium, and didn't sleep at all because of the pain. Even 6 MM Direct did not knock me out enough, so I could sleep. One would think that in this day and age pain management, with quality of life, should be the norm. Sadly it isn't, and we have to live with it. Have you asked your doctor for Durigesic plasters? They a fentanyl based slow release pain medicine, which can be adapted for each person's needs. Patches start at 12.5mcgr. And go up all the way to 100. I was at 150 at one point, but was able to reduce the dosage after chemo. We all live with the same worries, and I hope that this site will help you to get through you lesser days, and that it will inspire you. Good luck

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Nice Macaw! I'll bet when Margie calls out, everyone in a l/2 mile radius hears her. {Pierre est tres beau.)

I was diagnosed in 2012 and I am successfully taking Lupron. I was also on Casodex for more than 3 years at the outset. I struggle with the same SEs but exercise, supplements and my vegan diet have lessened the effects.

The following was posted by me recently and I thought the content, edited a bit, would be a help to you as well:

healthunlocked.com/advanced...

healthunlocked.com/advanced...

nutritionfacts.org/video/ly...

nutritionfacts.org/video/to...

nutritionfacts.org/video/tr...

nutritionfacts.org/video/tr...

nutritionfacts.org/video/ho...

Good luck,

CalBear74

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Since a couple of you have commented on my green wing macaw I thought I would share my other one. These guys help me with the anxiety and depression. I could not find away to edit and add an image so I deleted the original macaw picture and posted one of my little boy, Pierre the blue and gold macaw

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Hello PlacidTick, I was dx March 2017 with a PSA of 415. Now it's 0.5. My Onc did not set a mortality date for me. I feel great and I do the things that was doing before diagnosis. Relax and always follow your doctor's advice.

Nick

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Your side effects are typical. Many of us who underwent similar treatment(s) can relate.

Some experience some SEs at more intense levels. You'll need to think before you act to avoid some of the memory fog. That means focused concentration and IF you are in a fog, recognize it, and think again before taking taking action. I found that helped me avoid some of the 'lost key syndromes'. I found that I needed to be more organized, as opposed to simply dropping things and forgetting where I put them.

Some simple advice - put things in the SAME place and be consistent. Then, as an added bonus, you will find what you seek.

It takes a bit of discipline, but it beats the frustration of constantly hunting for things and getting upset.

Exercise (increased) is a must and modifying your diet should also help.

My story is similar to yours in several ways.

Lastly, I would suggest that you might want to consider looking at alternative / supplementary / natural remedies that assist in your fighting back.

We wish you well .....

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j-o-h-n gave me great advice, and I now have a scissors drawer. My life has been forever changed. Seek and you shall find. Now if I could only remember which drawer is the scissors drawer.

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Use one estradiol patch .1 mg changed twice weekly( because they’re smaller and easier to apply) to stop hot flashes and do resistance training for bone and muscle strength to help mitigate osteoporosis. Monitor T and Psa monthly and get full CBC work up while on ADT. Metformin and a statin are also helpful.

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Hey, Tim,

Sorry that you have joined our unfortunate club.

If you haven't heard of the prostate cancer group Us Too, then I urge you to seeing if there is a group that you can attend.

ustoo.org/Support-Group-Nea...

Also, an Us Too member in Wichita, Kansas, has developed a site with great information, papers and links:

theprostateadvocate.com/obs...

As an eleven year survivor, I can say that his observations have been invaluable in helping me understand this disease. You will become your own best advocate!

Good Luck, Clint

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Sorry that your here, but you have an outstanding group on this forum.

I’m glad I found them. So much knowledge and experiences.

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Tim, Sorry about your situation (obviously), but thanks for the well-written post. I'm a newbie, and it's helpful to hear directly from others dealing with similar circumstances. BTW, I've got you beat; my PSA = 111 a month ago.

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Holy chit.... at first look I thought your Id was PlacidDick and I said OMG, that's me.... Then I re-read it.... Greetings PT don't let this Pca get you down. Ok here come my standard lines.... age? location? treatment center? doctors? all info voluntary but it helps us help you and it helps us too. If you respond do it on a future post and NOT to me. Thanks. It's late at night right now so I just skimmed read the above. So you may have answered this question already but here it goes "where are you having pain?" We all went through the crying jag and some of still do... but you've read that Pca is slow growing so take deep breaths and laugh laugh laugh. Until we meet again - p.s. If those birds were mine I would name one TRUCK and the other one AND CHEESE.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/06/2019 10:57 PM DST

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As the kids would say, j-o-h-n: OMG, LOL. Grade A+ groaner.

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I know but it's the best I could do....cause I'm being held hostage in a Chinese fortune cookie factory and i"m busy, spending all day trying to come up with fortunes/notes and the lotto numbers. How's this one? "THAT WASN'T CHICKEN 18 38 14 01 17 36."

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 04/08/2019 12:27 PM DST

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HA!!! I finally put my finger on it last week, j-o-h-n.....you are so Rowan & Martin's "Laugh In".... and when the light bulb went off, I introduced my wife to "Laugh-in" over the weekend - I was literally just a baby when it started, but I swear I remembered it when it was live before it ended in 1973.... To you, j-o-h-n....

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SOCK IT TO ME..... SOCK IT TO ME.....

THANK YOU....

1973 a baby? Geezamacripe I've got dandruff older than you...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 04/08/2019 12:44 PM DST

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...and probably smarter than me, too!.... ;)

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Only "smart" ass humor....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 04/08/2019 12:54 PM DST

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14 months ago (67 years old) I started with an alkaline phosphatase of 3000. PSA at 800 plus 3 days in the hospital getting blood to say alive. Never knew or had a PSA test. Surgery was not an option with mets everywhere, bones, lymph nodes and organs. A month later was on Zytiga, prednisone with Lupron shots every 3 months plus Zometa infusions every month (to keep bones strong). Got better every month. Now 14 months later, leading a normal life. A lot of adjusting you know, but what's out there now is amazing. This forum eases a lot of anguish and worry. One fellow told me last week, I've been going at this for 20 years. My way to fight this is only one proven way to slow this beast. There are many other proven ways you'll find on this forum. And yes it was scary at first. My poor wife didn't know what to do. We feel your pain and worry. Hang in there, things will get better.

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PlacidDick, now that is funny, you made me laugh! PlacidTick was an auto generated gamer tag from when Xbox live first started how many years ago.

So in reply to your standard questions, I live in Springboro Ohio which is in between Dayton and Cincinnati. I work for an absolutely wonderful and supporting company, Procter & Gamble. My urologist is Dy Key works in the Dayton Physicians Group which is also where my oncologist Dr. Ditzel works.

My age is 53, I was diagnosed at 51 so I told the docs to hit me with everything like a shotgun! I have 4 children ages 26, 16, 13 and 10. So yes, I have no choice but to fight! I'm stingy, dont want my kids to call anyone else dad.

I have not worked from the time I was diagnosed, thanks to a great insurance plan and company. I am luckily debt free and own my house. My absutely wonderful wife, friend and advocate has decided no matter the life span God has determined for me she wants me at home being the worlds greatest dad versus giving my unknown length of time to the job. I have alot yet to teach my children and a wonderful daughter to walk down the aisle.

I have went through some very low times and it seems my biggest monster is mental health now. I even hit a point where I wanted to end it all. Thankfully I am on meds now and my wife basically slapped some sense in me. I have developed a great support group now.

After reading through the responses I fell like a wimp compared to what some of you are going through.

And you mentioned pain, I always feel like i have the start of a flu and after a workout or walking around my pelvic area hurts along with the upper portion of my legs and lower back. I have had scans to verify the bones are still clear. It seems like whenever I mention the pain it falls on deft ears. I am on Naproxen which is useless. PCP gave me some Tramidal but still didn't really help. So I have not been working out because it produces pain that feels like arthritis not muscular feel good pain from a workout and then the fatigue kicks my arse and I sleep.

I hope this fills in some of the gaps for you. Also thanks to all who have responded my prayers go out to all and their families who also suffer along with us.

Tim

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Hey, Tim. I, too, am in the "young" group for this crud - diagnosed in August, 2017 at 48; I am 51 now and fighting for my kids and wife (I, too, am "stingy", I guess!). And, like you, I largely found out by (turns out to be happy) accident during and after a long cross-country driving trip from Colorado to Maine with my then 16-y.o. daughter. Made me miss out on all of the great coasters at Sandusky! (But turns out that another coaster ride might've broken my neck, so I got over the disappointment....)

Yes, pain is not a thing that our doctors necessarily care about, but with lots of bone mets, I find it necessary to confront it head on. I strongly recommend trying out medical/athletic massage (true forceful massage and assisted stretching) - I use it twice a month simply to keep from seizing up and to recover from working out. Frankly, I feel weak and helpless during and just afterwards (and, yah, it hurts), but it feels amazing on the rebound. After I got used to it, I used (as use) it as an early-warning system for changes in my body - if something specifically hurts that never hurt before, I check it out.

And, of course, remember how ADT has a lot of insidious effects on our otherwise "healthy" systems. As other people have posted, I suggest looking into appropriate foods and mineral and vitamin supplements to support these weakened systems.

Finally, simply following j-o-h-n and all of his awesomely horrible humor is a form of treatment in itself. What kind of treatment is personally up to you - if it's "laughter is the best medicine" or "what doesn't kill you makes you stronger"....well, it works either way! :)

Good luck, and keep fighting! - Joe M.

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to Tim:

Thank you for your quick and candid reply. Do yourself a favor and copy and paste your response and post it on a future post where most members will read it. This way they can comment on your response and maybe answer or help with your issues. You're very fortunate to have been associated with P&G and to have a great wife who supports you.

We all have thought of offing ourselves so you're not alone. Looks like you have 4 great children who will be making you a granddad (including the 10 year old). It is important to keep your spirits up and enjoy your life with your family, you'll be around for a very long time. As far as giving you some advice on how to control your pain, I think you'll get responses when if you re-post (as follows) your reply to my post above. HANG IN THERE AND TRY TO LAUGH (ALL THE TIME).

...................................................................................................................................................

I live in Springboro Ohio which is in between Dayton and Cincinnati. I work for an absolutely wonderful and supporting company, Procter & Gamble. My urologist is Dy Key works in the Dayton Physicians Group which is also where my oncologist Dr. Ditzel works.

My age is 53, I was diagnosed at 51 so I told the docs to hit me with everything like a shotgun! I have 4 children ages 26, 16, 13 and 10. So yes, I have no choice but to fight! I'm stingy, dont want my kids to call anyone else dad.

I have not worked from the time I was diagnosed, thanks to a great insurance plan and company. I am luckily debt free and own my house. My absutely wonderful wife, friend and advocate has decided no matter the life span God has determined for me she wants me at home being the worlds greatest dad versus giving my unknown length of time to the job. I have alot yet to teach my children and a wonderful daughter to walk down the aisle.

I have went through some very low times and it seems my biggest monster is mental health now. I even hit a point where I wanted to end it all. Thankfully I am on meds now and my wife basically slapped some sense in me. I have developed a great support group now.

After reading through the responses I fell like a wimp compared to what some of you are going through.

And you mentioned pain, I always feel like i have the start of a flu and after a workout or walking around my pelvic area hurts along with the upper portion of my legs and lower back. I have had scans to verify the bones are still clear. It seems like whenever I mention the pain it falls on deft ears. I am on Naproxen which is useless. PCP gave me some Tramidal but still didn't really help. So I have not been working out because it produces pain that feels like arthritis not muscular feel good pain from a workout and then the fatigue kicks my arse and I sleep.

I hope this fills in some of the gaps for you. Also thanks to all who have responded my prayers go out to all and their families who also suffer along with us.

Tim

......................................................................................................................................................

Oh I almost forgot, Regards to "TRUCK" and to "ANDCHEESE".

Good luck, Good Health and Good Humor.

j-o-h-n Sunday 04/07/2019 12:34 PM EDT

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