Feeling sore and tired: I am a 51-year... - Advanced Prostate...

Advanced Prostate Cancer

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Feeling sore and tired

Oct18 profile image
17 Replies

I am a 51-year-old that is closing in on five years dealing with this.. a quick history, I was diagnosed October 2018, Gleason nine and had four spots showing in the scans and my bones. I have been on Lupron since the beginning, I had radiation to my prostate as well as the other four spots back in 2019. I took Xtandi for three years. After being undetectable my PSA rose slightly for about a year and a half and I had a few more spots zapped with radiation. A year and a half ago I did a provenge and stopped taking Xtandi and started a clinical trial. CC94696 at Duke. I responded well for about six months, but my PSA has started to rise again for the last six months. My scans in July showed one spot on my L3 with a PSA of 9.9 my doctor hit that with radiation and will assess where I am at in October with my next scans. my question is, for the last three months or so I have had several days where I just feel sore and achy. Very similar to the feelings you get when I get my every six month Lupron shot. I know exercise is a benefit, and I have been fortunate for almost 5 years exercising and living a very good quality of life routine. I run a few miles every other day I lift weights every other day. In the summers I go to the beach and ride my body board with all the surfers. But these last three months have been a struggle. It seems like whenever I feel well enough to exercise I try and then I go back again to not feeling well for about a week. It’s a catch 22, trying to stay , strong and exercise but every time it seems to it knocks me back. I have scaled back my exercise routine to running a few miles or doing the elliptical at a pretty moderate pace. 10 minutes a mile nothing special. Has anybody else experienced this? Maybe it’s just the cancer progressing and my body fighting it but it is very deflating to start to lose the ability to exercise as often as I have.

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Oct18 profile image
Oct18
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17 Replies
Oct18 profile image
Oct18

The trial is CC-94676

Gearhead profile image
Gearhead

"It seems like whenever I feel well enough to exercise I try and then I go back again to not feeling well for about a week." After about 3 years of regular gym exercising with good recovery while on ADT, I started having similar experiences. To avoid a 1- or 2-day long wiped-out feeling, my exercise routine is now much lighter than I would like it to be. So I'll be alert to other responses to your post.

85745 profile image
85745

Meds overtime can wear on a person not to subtract from that, I at one point years ago was a runner never felt better , then the reverse set in. I just wore my body down , Seen a lot of runners switch to cycling due to the pounding abuse on the body. I don't think cycling would be good on the prostate. I was 50 when I hit the wall with running. Now I walk and throw in steep hills when I feel up to it. Try not to let it get ya down. stay well

WhatHump profile image
WhatHump

You're past the age I gave up running. (Didn't get PCa til 62 tho). I had an RP and bike 18 miles a day. Low impact. Biking is OK even after losing your prostate (and I'm assuming you did w radiation.). On good days, I even try my Kegels while standing on the pedals. And, standing on the pedals and really speeding up for short bursts is a nice way to get some anaerobic work in. Helps for when I go to CO, my red blood cell count is already elevated due to the anaerobic stimulus. I figure doing Kegels while standing also helps to train my brain for the odd movements that sometimes trigger a drop or two of leakage. Hope that helps. Getting PCa at 62 was bad enough. I can only imagine getting it younger. Good luck to you.

babawinter profile image
babawinter

Similar progression and frustration for me, it's a tough adaptation progression; here's what I've learned since 2015 diagnosis & RP @ age 66... a lifetime of endurance sports (or any level of regular exercise) prepares you well for the rigors of PC both physically & emotionally. As age and high level marathon running began to take a toll, I transitions to triathlons to run a bit less. A couple of top world championship finishes were followed by continued progression of joint and muscle issues, so migrated to mostly biking, swimming and cross country skiing. Ski racing became an outlet for competitive juices and the low impact nature sustained me until the diagnosis. From that point on, it has been an 8 year journey of frustration and adaptation. ADT and no testosterone leads to fat gain, muscle/bone loss, and in my case, significant joint pain and muscle soreness when I workout too much. We live in a small mountain town in the Rockies and everyone here is an uber athlete and we all thrive on mountain biking, back country skiing, climbing and more; I have a great group of friends and we absolutely love getting out and playing in the mountains. I'm 76 and most of my friends are 60's... tough crowd but so much fun. So, I've been on an 8 year degradation of fitness that's been difficult to deal with and these have helped me deal with it... I bought an e-bike so I can keep up with my buddies; I hike with poles rather than run mountain trails; I lift lighter weights less often and do more stretching; and, I have developed other, less active hobbies. My MO made three comments over the past several years that resonated and helped... Yes the ADT is effecting your usual activities but have you also considered you're in your 70's? ADT may, for some, can be like aging 2-3 years every year. And, maybe you should find older friends!

While this significant change in lifestyle has been frustrating, I've also learned it is part of the PC deal. Rather than compete, I volunteer at races & coach a top level youth ski team; I volunteer at a few important non-profits; I have a much better veggie garden; Janie & I travel more often; and, grandchildren are an incredible source of fun and love!

Adjust, adapt, stay active & engaged and, keeping working at rolling with the punches.

Oct18 profile image
Oct18 in reply to babawinter

Thank you! You are much more active than myself. I was a good athlete my whole life but there are that "next level" athletes who do marathons etc... For me it's just going out for a nice 2 or 3 mile run followed by some lifting, heading to the beach for some body boarding and still working my job. You are right though, it is frustrating to see our abilities diminish. Stubbornly we press on.

Blueribbon63 profile image
Blueribbon63

Hi, I completely understand your frustration. I am 60 y/o and got diagnosed in 2018 with advanced stage 4 PC. I was put in Lupron right away and also had a round of 38 radiation treatment. I started running when I was 40 and never stopped, even after getting the diagnosis. I continued to run long distance and I even did my last half marathon last year in July. In November I got a PSMA PET scan (MO had off Lupron late 2022) it showed innumerable Mets all over my body, from head to toe! MO had back on a three medication treatment; Lupron, Zytiga and Prednisone. The SE for the last two were unbearable and discontinued. Currently on Lupron shots every three months. Lupron has made my testosterone undetectable, PSA on the rise, fatigued, gained 40 lbs, legs muscles loss. Lost my fitness, can't run anymore but I do walk from three to four miles a day. I always thought I will be running for no reason (pun intended) until I can't no more. Frightening that time is now. Wishing you the endurance you are familiar with.

Oct18 profile image
Oct18 in reply to Blueribbon63

Thank you and also wishing you better days ahead!

j-o-h-n profile image
j-o-h-n

to Myself.....

We all have an unforgiving Dad...... he's called Father Time.......... I worked out vigorously between the ages of 43 and 53 and got married again and then took up the exercise we call couch French fry. Except for my exercising on my keyboard, I haven't done shit for the last 34 years (birthday in 3 weeks to hit 87). So don't sweat it (pun intended) if you can't hike or bike cause you'll make it to the day your supposed to make it.........Live, Laugh (and work out if you don't have a comfortable couch)......

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/15/2023 1:47 PM DST

Oct18 profile image
Oct18 in reply to j-o-h-n

That's encouraging. I like my couch and I like French fries.... I'll keep that in mind. Maybe a lot of us are trying to continue to be active because we fear the inability to be active one day.

Oct18 profile image
Oct18 in reply to Oct18

But it has certainly worked for you so thanks for the humor and encouragement.

Oct18 profile image
Oct18 in reply to Oct18

so after my latest scans, it appears that the soreness and achiness I have been feeling isn’t just from the treatments, but there is some progression. My PSA is at 13.58 which is the highest it has been since before my diagnosis only one new spot showed up on my femur, but several spots that have been treated with radiation show up but don’t seem to be active. But a lot of the soreness is probably coming from the spots treated by radiation all in my hips and my L3 vertebrae. Long story short, it’s time for docetaxel. A few years ago I would’ve been petrified of that, but not that I’m looking forward to it. I’m ready to kick this with something hard and get back out there and start running again God willing. They are also going to start giving me Xgeva shots.

cancerfox profile image
cancerfox

I only got Eligard shots for 13 months, but what you are describing sounds pretty typical of ADT side effects. One has to just do what one can to battle against them, which you seem to be doing. Hang in there! 🦊

Bodysculpture profile image
Bodysculpture

Oct18 We have to fight the effects of what our treatment does to us exercise is the best counter action

I find running takes way much more that weight training

For 2 reasons running is ballistic and cardio based

Weight training is much less so

I would cut back on the runs and do a more intense resistance training

Maintain muscle and bone mass

When I am training I visualize my body fighting back

I visualize with those last few forced reps I am pushing cancer away

And bringing hope freedom and choice to the equation

You are having a marvelous run buddy let's go

And stop moaning 😆

Love you too

Oct18 profile image
Oct18 in reply to Bodysculpture

Good advice, Thank you! I have cut back on my running but it is also therapeutic for me to run. I have noticed a slow jog now seems better

Bodysculpture profile image
Bodysculpture in reply to Oct18

Well done buddy How are you feeling today?

Had a crazy session with my son yesterday my oldest he is 37

He is here for 3 weeks from Barbados 🇧🇧

Feeling like superman this morning a lasting pump

DECAPEPTIL SHOT THIS AFTERNOON

Let's go

agnut profile image
agnut

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