I’ve been a cyclist fo over 20 years and used to do ultra distance cycling. (Over 20 double centuries and the Furnace Creek 508)
I’m now taking both Nubeqa and Orgovyx and have mostly been riding an eBike, but today went out on my regular road bike. It was a struggle to finish 37 miles with an average speed of 12 mph 🥵 My FTP was 208 just a few years ago and I would guess it now to be 140ish That plus some weight gain and redistribution has me frustrated
I am very grateful to be alive and still able to ride but I’m curious to hear other cycling PC patients’ stories.
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AllenMarco
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You've been battling the Hydra for a long time. Do you do weight-bearing exercise (cycling does not count)? Are you osteopenic/poretic? You mentioned the symptoms of sarcopenia.
A lot of us are nostalgic about what we used to do and relay it, which is understandable. I definitely do it myself. It’s a well worn habit of older men regardless of presence or absence of disease and its treatments. I was an elite competitive athlete at one time, but one of my goals nowadays to not talk about it anymore. I mostly succeed and sometimes fail. To each his own.
Onward! ADT is an aging accelerator, and one of its prime features is muscle wasting. Specific intervention is necessary to really thrive on it. I’ve known and read of more old guy runners and cyclists than I can count who don’t lift on ADT and pay the price-especially runners. Running and cycling are obviously great, but on ADT it is not enough.
It’s a positive thing that you recognize you are ‘bad’ about resistance training. Do it instead of telling yourself you need to and the improvements will be dramatic.
Strength in the rest of your body will help the cycling. More strength in the legs will help your cycling. Hard intervals on the bike will help your VO2 max, and thus your cycling. Small gains mean everything.
Despite doing all of this, ongoing decline is inevitable of course. But without it it’s FAR more rapid. Worth every ounce of effort. Great luck to you!
Much truth above! I've experienced some serious muscle loss and thought my martial arts workouts would help. It appears serious strength/muscle training is going to be required in the near future. I've lost a lot of muscle mass but I am almost the same weight, lost some there too... And fatigue and lack of stamina is a constant.
Love the "ADT is an Aging Accelerator" lol
I'm still in my 50's and if you examine pics from this year to just 2 years ago, I look 10 years older! Hahahaha, I'm gonna use that term if it's ok, lol.
I thought I should share my experience since it is more positive. I have been on ADT since Jun 19. First I was on Firmagon till Feb 2022. Then I took a holiday as my T level did not rise about 20 till Dec 2022. Since my PSA was increasing and I was non-metastatic I have been on Nubeqa since Jan 2023 and have a Orchiectomy in Dec 22. I have been walking 5 km almost daily except on the 3 days when I play 18 holes of golf (walking) with a golf bag trolley. In addition I have been reasonably regular in exercise with weights in the gym and the machines. Now I am using 3 Kg dumbbells to do 15 minutes of exercise mainly aimed at muscle maintenance. In the past 2 years there is no further degradation in muscle mass. I look exactly the same as I was 4 years ago except for a slight tummy - thanks to ADT. Nubeqa seems to have had no effect so far. I guess it might be too early to infer anything. I have heard enough about exercise helping with muscle mass and fatigue. If you have no testosterone you have to work much, much harder to keep your muscle mass. Not sure I can keep doing that.
Better to be lifting ones bike... Especially a heavy old steel frame bike like mine... The heavier the better. On a more serious note, if cost and space for gear is an issue, get resistance bands/tubes and check out You Tube videos for how to use them for RT.
I just ordered a pair of 5# wrist weights from Wal*mart. I walk a lot and for some time have wanted something to help with upper body resistance work at the same time.
Not a biker, but was an avid long distance runner. Typically 1-2 marathons a year. Typically would run 40 miles a week. Loved long runs. Qualified for Boston, usually ran a 7:30 pace in long distance runs. After one year of ADT, all went downhill. Can’t even run a 5K at 9:00 pace. Very frustrating. Mostly do short runs without a watch. I don’t see any possibility of me ever doing a marathon again. Unfortunately, a new normal. I try to keep moving but realize nothing will be as good as the past.
I’m the same way. Fairly hardcore runner. 40 miles/week at about 7 min/mile. Ran everything from marathons to 5ks. Now I can barely run a single 10 min mile. Legs feel like concrete. I’ve even resorted to walking to just stay moving. The whole thing just pisses me off! I know I’m slowing with age but this is way beyond that. As you say it’s the new normal. I know I’ll never get close to what I was. I need to accept it and just keep moving as best I can.
interesting.... "just walking". Studies have shown great benefit to just doing that....and more than most folks of any age do nowadays. Since discovery of high BP MANY years ago, walking has been modus operandi for MANY years...but another of those who are challenged re resistance training !!! I plan to start.......next week????
I know walking is a very good exercise, in some regards better than running in the long term. I enjoy walking. The ‘just walking’ comment is just my frustration showing at not being able to run as I would like.
got it....my frustration is now being unable to walk for long at 4 MPH, the speed at which supposedly indicates good condition. younf skinny guys leave me in the dust nowadays!!! Sometimes, they serve as my pace cars...but a struggle!!
Hello, I wanted to let you know that in your post you are describing me too. I am down to 'only' walking but I do it a lot and as fast as I can, although I get irritated because seems like all other walkers pass me by, it is frustrating my legs just won't move any faster. I had a outrageous weight gain as SE of my prior treatment combination in two months, it has been almost four months and I am still working hard trying to loose the extra weight. Walk if it is all you can endure now, still better than not doing anything.
loss of testosterone, thru ADT can make us tired and lose a lot of energy. Even in everyday life , it can get pretty debilitating. Part of the staying alive game.
Runner/tennis player with the same experience on 18 months ADT with T < 12, lost both muscle mass and strength. Noticed it took twice as long to warmup and peak performance was down 15-20%. What did help was more interval training and HIIT workouts hitting VoMax. Tried to do something different every day to keep motivation up as low T really took away that initial spark to get moving.
I haven't seen my siblings in the 3 1/2 years since diagnosis. I think about what their going to think when they do see me. Big belly, skinny, flabby arms. Need to use both my arms and legs with effort and a couple attempts to get out or even in car.
Although I was never a true exerciser like most in this post ( no one likes to hear that someone's job kept them fit but I'll say it anyway mine did and my eating habits) you guys who had/have that regimented exercise have pretty specific metrics to compare before and after ADT treatment physical abilities.
This is a good post to share with my siblings to show what happens when what I tell them about my muscle wasting, lack of strength, stamina, doesn't quite register with them.
I’m a bike commuter and road biker but not long distance. Usually 25 miles rides. I’ve worked out with weights since I was 13 (70 this year!). Been lifting ever since. Still working full time.
I was enrolled in a 6 month study by the VA. Completed in May 2023. Results show a big decrease in body fat percentage and an increase in muscle mass percentage. See results. I started Lupron/Abi/Prednisone just prior to the start of the study.
During these 6 months I increased my cardio (swim, bike, walk), increased my daily lifting regime, and changed my diet to low carb. My goal was to stay fit and not lose muscle mass. I was stunned by the results! And so were the docs.
I’ve had no surgery or RT. Some bone mets and numerous lymph node mets. PSA now 0.1
I will continue my daily regime. I do enjoy my workouts and I know it’s not for everyone. I feel it has minimized all SE’s and I feel much healthier once I started the ADT. I was feeling pretty miserable overall prior to diagnosis, not knowing I had mPCa.
DaVinci Prostatectomy 2007, EBRT 2009, clinical trial at NIH receiving Xtandi and a vaccine (fowl pox & smallpox) that was effective for 4 years. Darolutamide sole agent for another 2 years before finally starting Orgovyx + darolutamide this year. Was Gleason 8.
I have restricted added sugar for many years. Use Splenda instead for my sweet tooth
Typical meals: Breakfast: 2 cups coffee with 1% milk & sweetner 1/2 cup oatmeal with walnuts & flaxseed. Sometimes make a veggie omelette instead.
After workout: protein & fruit smoothie
Lunch: very large salad, lettuce, spinach, cucumber, apple, strawberries,flaxseed, a little feta cheese, oil & vinegar, a little ranch dressing
Snack: celery and snap peas
Dinner: small sized chicken breast (curb palm size or smaller), cooked with vegetables. Season with oil & vinegar & Franks hot sauce. Add flaxseed.
Desert: one apple with peanut butter. Still hungry? Then bowl of bran flakes with walnuts and a few raisins added (Raisin Bran has too much added sugar)
I eliminated added salt once on ADT. I was getting a puffy face & jowls. I read all you can do is drink water and reduce salt intake
I could live on good fresh bread and butter. But no bread or chips in the house. My wife is supportive and no longer buys these. Too tempting. No pasta.
I used to eat a giant smoked ham sandwich at lunch every day. Now no cured meats. Little to no red meats .
I was always a meat and potatoes man. Loved hamburgers. Not much for salads. But now I enjoy the big salad every day.
This diet change was a big deal for me, but the PC diagnosis got me motivated along with info on how diet can affect PC.
Good question dhccpa. There are strong opinions on this. Mainly that modern wheat grain has been genetically altered to grow greater yields per acre. Look at how the corn yield increased from 26 bushels in 1899 to 174 bushels in 2021. Wheat yield has not had that large of an increase but more than tripled per acre.
You hear of a lot more people being gluten intolerant or gluten sensitive these days. Look at all the gluten free products out there now. Some attribute this to the genetic modification of wheat over the years. Other ailments like psoriasis are often attributed to gluten sensitivity.
From personal experience I can tell you that I ate regular bread my entire life up to age 65. I started getting itchy red bumps on my arms and legs suddenly. I swear we had bed bugs and freaked out cleaning and spraying! Went to the doc and dermatologist who said I may be sensitive to soaps and detergents. Switched to special soaps. No change.
On my own I read that it could be related to gluten and a form of celiac (dermatitis herpetiformis). Stopped gluten for 30 days and all symptoms went away! Later found out that soy sauce is full of gluten when I broke out after eating it.
After I started taking prednisone steroid at age 69 for PC I found out that I was now gluten tolerant again. I think gluten sensitivity is tied into the immune system.
Bottom line, if eating modern gluten doesn’t bother you then there should be no issue.
Thanks, that's the best answer I've ever seen to that question. I do eat some of the ancient wheat, like Kamut and Spelt. I have never eaten the regular wheat groats (I only eat the actual whole grains, almost never bread), so maybe I just haven't put those symptoms together. But it makes sense about our crappy food products.
Hell, they're even causing us health problems on our attempts at healthy eating!
I live in the mountains and until ADT had no problem getting up my very steep 1.5 mile driveway and of course no problem with distance riding on the gentle slopes. Now I cant even get up the first grade without an e-assist bike. I have also "graduated" from the lowest of three levels to the middle level of assist. Not feeling great about it or the flab but better than not biking at all.
This is a disease that changes your life in ways you can't know until you hit each obstacle. However, it then provides an opportunity to try new things and create a new life that has a whole new set of possibilities.
Initially, it can be jarring and upsetting. We grieve for the life that we had and a life that is no longer within our grasp the way it once was but there is more out there. It is the emotional and mental transition that takes time.
Hello Allen, I do not do cycling, only stationary for warmups, but I run and play tennis and had similar issues after 5 years on intermitent ADT and a 6 month bout of XTANDI, had RP in 1/2028 and SBRT for hip and lymph node met, and found that a supplement, some kind of dervative of leucine, aminoacid, is helping me recover muscle and loose morbid fat. Oncologist ands cardiologist told me there was no harm in taking it and its working for me, I feel my muscles when I run now. Its Hidroxy methil butirate and it sells as HMB. The calcium based , the cheap one is enough. I am 75 and everytime I have some kind of mishap, medical or sportwise, recovery is a pain, and I find that with this stuff I come back much faster. Thought I'd share
I've been a avid gravel road biker and have had to resort to an e bike over last 3 years. Stamina was the issue when riding the mountainess area I live in Vt. I do resistantance and cardio twice a week at a gym which has kept my condition stable. Nutrition helps. I'm 79 and have 3000 gravel road miles on my bike and did 760 last year. My goal is 1000 miles this year and hope my bike makes it through the summer. Good luck with no T.
I had 27 months of ADT (Lupron and Casodex) starting back in the summer of 2012. Also had radiation therapy to prostate and pelvic lymph nodes. I cycled 2000 to 3300 miles a year for the next 10 years. I felt ok thought was not doing the distances you did (once a year did a 65 - 75 mile ride). The one thing to watch out for from ADT (and RT) is loss of bone density. Two years ago I fell on the bike and fractured my pelvis on the right side right where it forms a socket for the humerus. I have a 12 cm screw in my pelvis and spent two months using a walker (and sleeping in a bed set up in the living room since I could not go up stairs). After the fall my doctors started be on Fosamax to increase bone density. I stopped riding after the fall, though the good news is that I am in a long term prostate cancer remission (since 2014).
I would recommend you have bone density scans done if you have not. My bone density scores were (and are) right on the border between osteopenia (milder reduced bone density) and osteoporosis (more pronounced loss of bone density).
Thanks for the initial post and all the replies. I, too, am a cyclist and lately I have been fearful of these side effects if and when my doctor puts me on hormone therapy. So far, I seem to be dodging that bullet. That can change in a heartbeat. Thanks.
Used to be in the Dojo 4-5x per week, could workout for 2.5hrs per, plus working at the time, usually 50+hrs per week, etc. In addition I was never a sleeper, would get 4-5hrs and be ready to go! High metabolism also made me a bedtime favorite of my wife during winter (body always hot) but not in summer, lol.
Anyways, painting a picture of always having juice in the tank, energizer bunny rabbit kinda guy, lol. Never a gym rat, but was in good shape. Could do finger tip push-ups, down to thumb push-ups, lolz. Again, plenty of stamina, etc. But now...
Can barely get to a dozen push-ups, I've returned to the Dojo because it's something to do and keep me busy, but can fight to get an hour workout in, and it's a light work out compared to the past (everyone there is older too, lol). But it's a great measure as compared to the past, not so distant past by the way. Additionally, I always baby my cars, a gear junkie, built engines, do my own maintenance too, plus take care of detailing the cars. Now, giving the car a full wash and detail is so taxing, man, it takes all the gas outta me. Simple things I used to do, now need to be measured, staged, sometimes broken down into segments whereas before I could just power thru. No longer! But am I my worst own enemy? I don't get up every morning an work out, don't do it daily either. The lack of "wanting" or "desire" to do it, I'm sure also a side effect of the Androgen Therapy, but still... When I do extend myself, the gas runs out pretty quickly. Anyways...
Man oh man... The NEW normal certainly sucks! Hahahaha. But things are certainly better than 2 years ago when I went through Chemo, that knocked me out so bad, is when I decided to retire. Going into the 6 cycles and up to the third, I had a plan to still work another 5yrs at least, but by the 6th cycle, could barely walk .5 mile as an example, without stopping and resting. So there was no way I could return to my industry. Also love to bike, not a roadie, but will hit the trails (paved and paths) and used to be able to ride for hours... No more. Working out (Martial Arts) has increased my stamina somewhat, but not strength. I know the loss of T is the biggest contributing factor, and would love to research some alternatives, I know there were some threads here (no longer) which covered some of that (testosterone replacement) and is a very interesting take on things. I would love to regain muscle mass as I'm sure it will contribute to stamina along with obvious strength, and will probably look into this as a focus soon. Hopefully not too late to regain some
Ultimately, we choose! We decide, to travel this path of abating the PCa, and the trade off is however the drugs will affect our bodies. Loss of libido, testees smaller than almonds, memory loss, stamina, strength, weight gain, breast enlargement... etc., etc., all for us advanced PCa Patients. All for a few more years, or months on this earth! And until they find a way to eradicate the errant cells causing havoc (PCa), this is the best we got, for most. I'm always examining and wondering if BAT would be a fitting venture to explore, but I'm not quite there yet. Would having my T back make a difference? How would it feel? Would I notice a break from the new normal? And I consider those who have ventured this path to be extraordinarily brave souls and applaud their efforts which have now brought this avenue into mainstream consideration, but it is a roll of the dice as they still cannot identify by diagnosis who would benefit, or not. ADT and the process is now over 70 years old, and you would think they'd have come up with something that doesn't have such a profound effect on our bodies, while at the same time having good effect upon the cancer. Alas, we are, where we are...
So... We do what we can do. We balance what we value, make decisions and calculate risk to our own tolerances, etc. But ultimately, we need to value each and every day. Whatever it is that floats our boat, brings a smile to our face, is what we should be doing, regardless of how long we can do it, etc. Just that we do! And if it does make us smile, do it some more, lol.
I am also a long term cyclist. Have not done any 200 but a couple of full Ironmans and many 100 yard rides. When I started these drugs I started a weight program which included legs. I continued cycling but not the long distances. I have definately slowed down. I used to have an FTP of 240 but now lucky to be 210. On the weights I have not noticed a major drop. I think part of the loss in speed is a lack of competitiveness and drive. If some one goes by me now I don’t care. I used to use my competitiveness to push me to be faster. I also feel a fatigue in my muscles some days especially after weights that I did not feel before. The most important observation is, however, that I feel energetic after every bike ride. If I stop exercising a weird fatigue sets in. Never stop!
I’m a great-grandpa at 70. I workout everyday first thing in the morning after coffee. Weights and cardio every day. Nightly walk with the wife.
I mix up the weight routine with 3 different workouts so muscles are not overtaxed. Abs every day. Important to stretch then warm up with light weights or resistance bands. Work up to heavier weights.
One set = Heavy weight, medium weight, lighter weight. 3 or 4 sets. Mix in resistance bands or abs between sets.
Swim 3x a week. Other days road bike, spin bike, or elliptical.
Can’t do the marathons or long triathlons anymore. Have to walk the running leg due to old knee surgery.
I've never used a power meter, but I see who's passing me in the park. I'm 71, and I have a heart issue. I don't expect to be able to ride like I used to.
(Full disclosure--it's been years since I've done a century ride. I'm NOT on ADT--I'm just older).
I. Certainly commisserate. My story similar. Was competitive Masters road cyclist and XC skier. ADT gave me obese sarcopenia. Terrible. I have and am reversing it with adding high levels of testosterone in my long-cycle BAT regimen along with high intensity weight workouts weekly and lots of hiking and jogging, rucking, etc.
I suggest an assessment of where you are at: A DXA scan that includes full body composition analysis ( fat and muscle scores) and not just BMD.
Then you can find a VO2max test facility for true aerobic fitness. This inevitably goes down but can be trained using intervals HIIT (No more than once per week.)
Peter Attia MD has very much pertinent content and great interviews on his podcast “The Drive”.
I have been riding bikes for about 50 years, since before it became cool, and when I was on ADT in 2021 it was all I could do to make it up some of the hills that I would have considered laughable the year before. And this despite continuing to work out with weights, jogging, walking, etc., in addition to the bicycling. Despite what some people on this website always post when someone mentions the side effects of ADT, it is going to greatly diminish your physical performance, no matter what you do. Other exercising like weight lifting helps, but don't beat yourself up over it. Getting off ADT is the only real solution. Of course, I'm not advising doing that. 🦊
Thank you. I bought a great eBike a couple years ago which keeps me riding. Fairly hilly here and it makes what would now be a very difficult ride doable and enjoyable. But I was discouraged when I had to ride the non-eBike which was clamoring for attention.
I am trying to avoid having to buy an e-bike for as long as possible. I seem to be still having residual testosterone issues after the ADT, and my leg strength feels like it is down at the moment, so I try to do the rides that aren't as hilly as some others that I might normally do. When I was on ADT I had to cut back on the length of my rides, and a couple of times walked parts of hills, which was really demoralizing. And the last time I rode in 2021 I almost fell over getting off my bike at the end of the ride because my legs were so wasted. I decided at that point to quit riding for the year.....it was in late October anyway. 🦊
you’ll get as good a workout as you want on a power assist eBike. It’ll add about 3 mph to your average speed, leave you less wasted at the end, recover fast enough to ride the following day and allow you to ride in groups that you otherwise wouldn’t be able, assuming you can get past the stigma of being on an eBike. Check the Specialized Creo.
I'm 8 years into PCa and in my third year with an e-bike and I am so happy every day I ride it. I have a Specialized Creo that only assists, doesn't have a throttle. Every year I'm a little disappointed by my decline but I am so thrilled to be able to do the mountain rides I used to do on my "manual" bike. My lovely old titanium bike is begging for attention too, but I figure I'll just take it on a short ride one of these days and not even attempt the 37 miles that you did at quite a good pace.
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