Been noticing that there appears to be quite an individual response to ADT...my biggest fear has to do with the loss of physical strength and stamina as the bulk of my life is about physical pursuits.... I've gone for 7 yrs untreated post RT and psa is not moving fast but the time will come when I will have no choice if I don't want to die.... Any folks here been fortunate enough to have NOT lost too much muscle mass and physical stamina... If so how have you managed it... extra exercise?? Luck of the draw?? I have rather severe arthritis which already limits my abilities... Kidney sensitivity to NSAIDS so I can't medicate the pain away and ADT would possibly be the final nail in the coffin..... Realize that I am lucky to even BE at a point where I am _considering_ ADT ( of course it has been recommended multiple times) when so many here are more advanced than I am.... but putting it out there with that proviso....
Any Highly athletic folks here still ... - Advanced Prostate...
Any Highly athletic folks here still able to continue their pursuits??
In a randomized trial at USC of a program of resistance training and protein supplementation among men on ADT, they found that their 12-week program improved sarcopenia, body fat %, strength and quality of life. (Protein supplementation had no effect)
ncbi.nlm.nih.gov/pmc/articl...
I know 2 men who participated, and they both have had no deterioration.
Burnett1948. Tall_Allen. I have been told by Radiation Oncologist that exercise will "reduce"? my Prostate Cancer? So I got a referral from my GP and started on a exercise program with a physiologists who also works with other cancer patients and told him what I have been told. He responded saying that he has not seen cancer reduce from his work in his patients. What are you thoughts about this as well as your thoughts on Prostate Cancer patients increasing their exercising, i.e. how important is exercising for us?
Exercise will improve QOL. If you're asking if it will improve survival in men with metastatic PC, a highly qualified maybe as in these low quality studies:
jamanetwork.com/journals/ja...
academic.oup.com/annonc/art...
But other low quality studies found no survival effect:
europeanurology.com/article...
As for radiation, it may improve outcomes of radiation.
There are other things that can 'get us' besides prostate cancer. Diabetes, heart attack, stroke, etc. Exercise can ward off these threats.
Yes... and from looking at the side effect profile for ADT ALL of these are made more likely by hormone therapy.... I have kidney issues that don't allow me to take any kind of NSAIDS so exercise ( to the degree I would like to do weight bearing) is not nearly so inviting as it once was due to extensive arthritis.... ADT is simply a choice of the lesser of evils potentially ( though I am beginning to wonder, in my case, if I am not simply buying myself problems in the area of QOL and not extending my lifespan....... I've read posts here that dispute whether these treatments actually DO extend lifespan ( statistically)...... Clearly they appear to have for a number of posters..... I am NOT going gentle into that " good night" but..likely will
Hi Tommyj2,
This may be coming from left field, so to speak, but I noticed you have mentioned that a major part of your current LIFE seems to revolve around physical sports and activities.
What if you engaged with some of the people you know from that part of your world and simply talked with them about how you may have to go on life-extending drug(s) soon that may affect your ability to do some of the more physical things you've shared up until now?
You may get some mixed responses, but might it be better to do so a bit sooner, rather than later?
All of us have our former "strengths" and "roles" and "capabilities" that can/will change as we either age naturally, or face more sudden changes due to disease or treatments side effects. Just pondering the possibility of those losses is often sad and stressful. It's normal. I know I've certainly needed to take time to be sad and to grieve those kinds of losses since my initial diagnosis. In my experience, talking about it has helped.
In the meantime, .... as Tall Allen and several other cyclists and gym rats here can attest, exercising can still help maintain your overall quality of life as you continue to Live your life with your own unique personal quality and gusto.
Just some thoughts...
Charles
(Still way too much of a couch potato, myself, since adding Xtandi almost 2 1/2 years ago.)
.
Thank you charles....
I see you have noted my preoccupation : )
This would be a loss of enormous magnitude to me... and, yes, you are right that talking about it helps ( those of the folks that are friends already understand.... but those who are acquaintances know only that Bob can't keep up... and can no longer be entrusted with certain jobs.... I freely admit that it is an " ego thing". As I get older and it becomes that much more difficult to maintain strength and stamina losing it to drugs is , quite simply, too hard to accept as yet.... The emotional aspects as well present challenges as I have had to make my peace with depression since my adolescent years ( this is how exercise became so important to me.... it kept the depression at bay and having a toned body was a point of pride... ) I take no issue with what you say.... matters are what they are... but to the degree that some folks have been fortunate enough to maintain strength and stamina ( lord knows there are more than enough side effects to go around with these drugs beyond strength and stamina) I'm interested in whatever steps they have taken ( beyond luck) to maintain themselves...... Needless to say the whole matter is , initially, very depressing.... I am not a "life is beautiful" kind of guy...never have been....so it will be a very significant challenge to find replacements for the activities that gave me a measure of fulfillment...... we all manage to muddle through when our backs are against the wall..... : ) Thanks again for the reply.
Big Lupron Hugs, Bob.
Charles
P.S. The other day I went out and bought some new underwear. The packaging had some pictures of these slim, hunky young men on them, looking like carefree young gods who had just stepped out of the pool on the French Riviera. I showed them to my wife and said, "Look. These guys took a picture of me again while I wasn't looking." There was a second or two of silence, and then we both burst out laughing.
I'm definitely not Highly athletic - I'm a scrawny guy. Restarted ADT on 12/14/2018 as PSA got to 10.8(840 at Dx) after an 18 month hormone holiday. T currently at 18 and PSA at 4.4 and I slog through marathons at least a couple of hours slower than pre Dx. My mission now is to get someone to read my back bib sign, maybe someone will get screened, maybe a life saved. I now have names of men taken by d*mn PCa on it also. My small way to honor those who passed. Scroll thru my previous posts to see pix.
A blog post from 2017:
blog.athlinks.com/2017/05/1...
Fight on - Randy
Dockam and others like him are my inspirations. I've been on Lupron for almost 6 months now, and just finished chemotherapy. I was able to run during most of chemo, though much slower and shorter than before. When unable to run I'd go for walks.
My advice would be to fear metastases and bone pain more than you fear Lupron. What started off as a unexplained pain in my back while running which I though was an overuse injury developed quickly developed into bone pain that made it hard to even sit just before my diagnosis.
For me, Lupron appeared to be helping with the pain, but then chemo caused all manner of aches and pains. Still, I was able to run, shovel snow, and even split a few pieces of firewood. As the effects of chemo wear off I expect to be able to do more and more.
I did okay until chemo. It did a job on me. Until my diagnosis one year ago i was a very active surfer. Lived in Mexico 8 months per year and surfed a great deal. Broke the same rib 3 times and my stamina is just not there for surfing real waves. In the last month I sold 6 of my boards. It is a big fat bummer but I have been finding pleasure in more simple pursuits and I am looking forward to salmon fishing season in the PNW ocean even with beginning another set of chemo this coming Tuesday.
Good luck in chemo 8knots..
I have always been into sports and athletics (high school, college, clubs, etc..), still bike, ski, lift weights, etc... This was one of my biggest concerns too. Not just ED issues, but the strength and stamina since to a large extent we validate ourselves by our athletic abilities and achievements. Well... the good news is that after 15 months of ADT, I only lost a little muscle mass. I was never a body builder like Nalakrats, just a gym rat to stay fit and agile. The bad news is that I definitely lost stamina. I can't do as many pull ups as I used to. I can't run or bike nearly as hard. I start out out slow and get slower, but get there eventually.
So, yes, I think you will notice some changes, and changes like anemia from ADT will slow you down. But if you go in strong and keep working out, you will be just fine. Exercise will minimize the side effects of ADT and is good for the mind. One of the most therapeutic things I do. Stay positive, stay disciplined, stay strong!
Please don’t be afraid of ADT. I am on year 7 of this stuff. I swim laps every other day. I should be doing resistance exercises too. It’s about setting your mind to what your wish to prioritize in your life. I am lucky to be self-employed and set my own hours, which include time for exercise.
I began ADT in 2010 and have paused because a hip has maybe failed.
I had two knee joints in early 2017, and big battle to keep Psa low with ADT, more RT, Casodex, Zytiga, chemo, and now Lu177 + enzalutamide.
During this 9 years I cycled 100,000km with average speed slowly declining.
So exercise as much as you like with Pca and chemicals they pump in. I'm 72, may need a new hip joint, and they'll give that to me if Psa goes low and I'll be back on bike in a couple of months. My docs love to see me arrive for appointments looking good in lycra. Canberra has fabulous cycling facilities, maybe best in world. Riding a bicycle is better for you than sex.
Patrick Turner.
I have been on lupron and Zytega now for 19 months. .02 PSA. My MO and his two partners do nothing but PC. They literally sees thousands of PC patients over the years. He told me that the ones on ADT that do resistantance training do far better than those who do not. I went to a local weight training guy and took off my shirt and said “I don’t want to look worse than this a year from now on Lupron”. He said if I looked like that after a year training with him he’d close his doors lol. So I hired him and I do very hard weight training workouts 3 times a week for 1 hour twenty. Numerous reps on all muscle groups to exhaustion. I feel great. I’ve lost 10 pounds, gained muscle mass and reduced my % of body fat. (Private message me and I’ll send before and after pictures if you want). I am shocked actually. But it is hard work and I’ve missed only two session in two years. I actually have muscles now that I never did and I feel great. My MO says that people in his practice that have lower body fat and lower BMI without question do much better and survive longer. Golf is my passion. I still play but clearly not as well. But participate in the things you love and do resistance training. You won’t regret it.
Schwah
Thank you S. !!!!
I can not tell you how much it helps to hear positive stories from people who are keeping up " appearances" : ) All I want to do is maintain ...don't need to build muscle or lose weight.... can deal with _ some_ but the horror stories I hear here scare me..... so it's extremely helpful to hear your story.....
Hi
I had RP in 2010, followed by Radiation therapy a year later then 6 years taking Bicalutamide until February last year when I had to commence taking Aberaterone and 6 monthly injections of Deceptyl.
I am still running up to 4 miles twice weekly usually, Cycling up to 25 miles three times a week at least. My wife and I also do a daily 2-3 mile walk, I garden do a lot of strenuous DIY around the house and a regular advanced session of Pilates weekly.
I am 67 next week while I can say I am in good shape i think a lot is down to regular exercise and a strong will not to let this illness take over the normal lifestyle i have always enjoyed.
I weigh in at 74 Kilos my normal body weight and have never increased my weight.
Regular exercise is the best drug available for fighting this menace!!! do not let it beat you
Hi, I am 66 and started Lupron 2yrs ago...I probably fueled the flames with Testosterone injections and HGH injections...I was really strong....Then came the diagnosis...and everything changed...12 cores of Gleason 9. I read all of the heartache of Lupron and where it effects some people so bad they just want to live without it....Did not know about this site where we have a lot of good people who participate..Well I have a gym in my home and kept hitting it....I did lose strength because I was off of the juice..but I have never had fatigue and I live a really full schedule...I am an Angel Flight Pilot , and run a small flying charity. I get a few hot flashes at night maybe 1 or 2 during the day....otherwise I feel great...Lift , jog, paddle board and a lot of other stuff...Now I have had Xtandi added to my regiment which there is a high report of fatigue...into my 3rd month and feel no effects at all....I did read one post similar to the one I am writing and not sure where I found it but it was the only positive post at that time that I found that fit me...I hope this helps.....I was a football sideline doc for years and we would yell out to the kids....JUST GIT YOU SOME!!!!! you had to be there....anyway keep up what you are doing and keep us up to date......Blue Skies Sky King.......off to the airport.....
I did 18 months of ADT, did not change my exercise routine a bit, played full court basketball at lunch, lifted weights 3-5 times a week, went skiing in Steamboat Springs, hiked in Rocky Mountain National Park, swam, used the elliptical, walked my dog, did the yard work, home repairs (fencing and decking)...
That was me, other did experience SEs such as fatigue, weight gain, loss of muscle mass.
Things to keep in mind, diet, exercise and attitude may help you, it did me, but that was me and no guarantee somebody else will be able to get through ADT like I did.
Yes, I did experience mild fatigue and muscle and joint stiffness, the exercise helped me counteract both.
What a ski season, eh? We used to live in Colorado and skied all the mountains. Now I live in Maine, but we still go out west every year to ski. This year we skied big Big Sky,Montana. Skied hard for seven days and had a great trip. I almost forgot I was on ADT 😎. Just gotta do it.
Half the battle with ADT is the emotional and psychological toll. Don’t let it slow you down.
Thanks Hawk...
It appears from the many responses that I have, fortunately, gotten that some folks DO many to escape the worst side effects of ADT with a combination of luck AND perseverence.... How the ADT reacts with each individuals body chemistry is doubtless a " crapshoot" but it does appear that plowing through and maintaining and exercise regime does quite a bit of good....
I’ll tell you in about 6 months. Just started Lupron 3 weeks ago and radiation begins next week. I am a moderate cyclist and use some weights. I signed up for a 100 mile ride for August and amping up to that. I am planning on no issues from the treatment.
I was on ADT for 26 months; I was able to stop it in October 2014 (I was 64 at the time). I bicycled a lot - over 1800 miles in 2014. I felt I stayed in pretty good shape while on ADT - no weight gain, little muscle loss and good aerobic shape. However I did feel the effects accumulated some over time and was feeling some chronic fatigue by the end of my time on it. I don't know if you can cycle or not, but it is a good, low impact aerobic exercise.
I'm reading a lot about the positive effects of cycling..... I think that is the way I am going to go as well as resistance training... currently do a couple hours in the gym 3x a week 45 mins of it on stationary cycle..... Seems a fair number of people here are able to maintain what they had before with exercise... of course that could also be the luck of the draw as well in part ( the way their individual bodies react to the drugs) either way... I am heartened to hear that not EVERYBODY ends up fat and without muscle : )
Cycling is great for cardio and leg strength. Also just a nice way to get out and enjoy a nice day. And with ADT I lost the hair on my legs so I look like a legit cyclist now :-).
Weight/resistance training is also important to keep in the mix so don't forget to add that a couple time a week. Have fun.
I do Archery as a sport, I was 3rd at last world 3D's in 2017 and 4 times world/European champ. I can still compete but not even close to the the skill level I was 18 months ago. The first indication of something wrong was me shooting World Masters in Switzerland last Summer, I struggled to get around the courses (Pain and Fatigued) I was diagnosed in Nov stage 4, PSA 1386, hemoglobin was 59 g/l with extensive bone mets in legs and Lymph nodes.
Just happy than I can still shoot at any level. I do plan to shoot European Fields in Holland in Aug but 5 days shooting will be tough for me. You don't need to be super fit to do Archery but it does require very precise muscle control, I just don't have that at the moment. I finish my Chemo in May so maybe I have a chance to build some fitness and strength back. it's good to have future goals even if they are not quite as ambitious as they used to be
Sorry to hear about your condition..... I've been far luckier so far.
congrats on all your previous accomplishments.... I've spent a few hours in my time target shooting with recurve but by NO means accomplished ( I'm happy if I hit the target itself : ) Best of luck to you
I used to golf 3-4x a week; now just once and really suck. Se la vie!
Hi Tommy, I started ADT+Zytiga in November. I also had robotic surgery in August and 35 rounds of EBRT radiation just in January/February. I am 52 and went into this in great shape, mainly vigorously surfing (shortboard) 4-6 days a week. The surgery and recovery shut me down for a few weeks, but I’ve been back in the water since. I don’t have the same endurance or strength, but not bad...maybe 70-80% of my former self. I know I should be also lifting weights but I don’t enjoy it as much so just keep surfing as hard as I can.
Hoping to finish the meds and get back closer to 100% in another 13 months and 10 days, but who’s counting? To be honest though, I’ll be happy with my current level of athleticism if the PCa stays in remission. Good luck.
Tommy - Exercise has been my “vice” since I was 15 YO. I’ve probably averaged 6 workout a week during the past 46 year including weights, rowing, cycling and more.
Diagnosed with PCa at age 58 I had the same concern as you. The first priority of course is living as long and as well as possible but I have to admit that I looked ahead with apprehension to the day that I couldn’t exercise. Having been through an RP, adjuvant RT, ADT and now dealing with recurrent disease which entails more ADT and another round of RT - I am happy to report that I’ve been able to maintain my exercise regime. I won’t kid you, it’s not easy. But the same determination that you used to build the exercise habit is what will enable you to power through this, and all, hurdles that you face going forward.
Gene
I figure if women ( who have generally far lower T than men) can successfully build muscle I "should" be able to at least maintain mine with continuous workouts..... my biggest worry is the negative effects arthritis is having on my ability to hike...since I can no longer use NSAIDS due to kidney issues.... Will have to spend more time biking and hope for the best..... along with my resistance workouts at the gym..........thanks for your input!
For a couple of months after having my prostate surgically removed I was physically incapacitated, however once I recovered from that I went back to being active again, riding my bike long distances and working out at the gym. Of course it helps to have been physically active most of your life before prostate cancer treatment.
Did 53 triathlons prior to PC, including one Ironman. I was obsessed with exercise. Tried to continue after radiation and ADT. Continued to exercise and lift weights, but cut back. Did three tri's after treatment and was just not competitive in my age group. Shouldn't matter, but it affected my motivation to train. Now, after years, I am getting back into tri and it definitely makes me feel better both physically and mentally. I also play golf and ski.
I need naps, but that could just be age.....
I REALLY get how it can lower your motivation when hard work no longer keeps you competitive.... I'm well past the competitive stage but still very concerned with both aesthetics ( hate carrying a lot of extra weight) and loss of tone and strength..... Helpful to hear that there are a fair number of folks here who have not been as deeply affected by ADT as many..... HOPE I am one of the lucky ones... will certainly do MY part to stay in shape but when hard work does not work it really does lower motivation......have to battle that one already as, at closing in on 67, I already notice that I have to do twice as much for 1/2 the result.... thanks for the reply
Hi tommy
Just went through radiation with a 82 year young man with more life experiences than I’ll ever have.
His advice to me was always choose life.
Hope this helps you to decide to getting going.
Agree. On adt going on 2 years. I have actually gotten leaner. I have gained muscle mass and lost my protruding gut. It comes from HARD work in gym and less complaining If ones heart can tolerate it , do the exercise.
Thank you!!
Great to hear a bit of good news... I've lost so much to age and arthritis already .... like to hear that some folks are doing basically OK on ADT with hard work...
I have been on ADT for 9 months with an excellent response. You are right that it does take a toll on endurance and has some other 'interesting' side effects - BUT - if the response is a good one, much better than disease progression. So - I am upping my game with exercise and work out 4 times a week, and also snow skiing. Once summer hits, I will hop back on my Mtn. bike and hit the forest trails. The deal is you need to keep a positive attitude and attack the side effects of ADT. It would be easy to give up and do nothing which only makes the side effects worse. Good luck no matter how things work out...
Well Tom, and may I call you just Tom? You'll know you've turned the corner when your wife starts beating you and not vice versa.
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 04/07/2019 4:31 PM DST
Just started part one of ADT with Casodex with no major SE’s, maybe a little drowsiness in the early evening. I’m a runner/swimmer/tennis player, active every day of the week. I’m noticing a little muscle fatigue when running that wasn’t there before, so I imagine I won’t be able to push through workouts as hard in the future. Encouraged that PSA dropped 30% in first 3 weeks. Starting Lupron and Zytiga soon, will update effects as I go along. “Keep on keeping on” as my football coach used to say.
Why the Zytiga when you are already having a substantive drop in PSA on the Casodex alone and Lupron planned soon..... I get troubled whenever I see Zytiga added to regimens because I have NO idea how I would afford the drug were it prescribed for me.... does appear that it is reserved for those with bone mets.... is that your situation??.... That said.... I am so glad that you have been able to keep up your regimen even if curtailed a bit....gives hope to those of us who have yet to start the drugs......... Hoping you have the finest results with your Tx...
It's part of a triple-play adjuctive-tx for HDR/EBRT radiation, which includes Casodex, Zytiga, and Lupron for two months before HDR, and continuing for 18 months total... I got pre-approval for Zytiga at $100/mo, but I go on Medicare in four months, so I'm not sure how that's going to play out. I'm T3 N1 M0, still curative hopefully. I wish it were as easy as these four weeks on Casodex, but I'm sure SE's will ramp up on Lupron. One thing I've found is working out first thing in the morning before meds is much easier, I suppose because the T-level is probably highest before taking meds.
Hi Tommy
I now have 2 rods in my back after a spine tumour compressed my spine and stopped me walking. This was Nov 2017. I am now back skiing at similar to previous ( black runs) playing soccer and I went on a 6 hour mountain hike last week my longest since diagnosis. I’m on Abiraterone and Zoladex. I do have a bit of a belly now and would be nice to lose 20lbs. But I still like good beer and good food!
So maybe I am lucky. But I have seen a bunch of people on this site who have been able to continue running ( including marathons) biking and going to the gym.
Thank you for the reply and encouraging news.... a lot of folks appear to be able to keep up either a measure of, or the entirety of their former regimes..... Hope my own biology finds me in the " keep on keepin on" group!!...... Was the spinal tumor r/t the Pca or something else??
I get to the gym 5 days a week. Lift Monday, Wednesday and Friday, aerobics Tuesdays and Thursdays. The ADT eliminated the interval training but I have been keeping up well with my current regimen. Side effects of Lupron and Zytiga have been minimal.
How about weight gain?? Loss of tone? Have you been able to maintain?.... All I want to do is not lose too much ground.. If I can maintain a reasonable waistline and not lose too much muscle tone.. that would be great........ thanks for the response...
Yes, I actually was able to lose some weight intentionally. Muscle tone is very good, I have been able to gain a bit, but not like before. You can do it, but you have to work harder than before.