I enjoy riding bikes and usually put in over a 1000 miles a year. One of the rides I like the most is the week long "Michigander" bike ride (~360 miles). Last year I was still recovering from surgery and could only do the weekend two day ride (~70 miles). I have been on Lupron since last June and have really noticed how much muscle mass/tone I have lost.
I have just started to train for the Michigander bike ride and I am a bit dismayed that I can only sit on a spin bike for about 30 minutes before the pain from the seat becomes to grate. I will need to be able to ride for at least seven hours a day to do the bike ride.
My question to the group, can I assume that the Lupron is also making my pelvic floor muscles weaker to the point that a bicycle seat hurts? If so, do you think that I could strengthen them by working out?
I hear you, I have been on testosterone reducing pharmaceuticals for 10.5 years and now after one cycle of chemo with my hair falling out, a few nights ago I was skiing, I almost never fall in a year, but I did, and noticed how very hard it was to get back up with my skis on, certainly a lot weaker than I was, and that's after losing 30 lbs of Lupron fat
Six months on ADT (eligard) and I am up 17 lbs. My six month shot should be wearing off soon. I hope I can find the willpower to put a dent in this added weight.
I have gone from 100 pressups per day to 20. Am so much weaker. But have also had to work hard to take 21 lbs off since Christmas Day. 11 months ago I bathed instead of showering. Wife out at daughter's family party, I wasn't too well. After bathing I stood up to exit bath. Could not! After 2 hours managed to slide my phone to me and my training pants. After call was rescued by neighbour's wife and her 13 year old daughter. (Hence the need to get pants into bath).
Was going to get cycle out is the point. Not sure now. David
Studies I've read say 18 months of ADT is all you need. As far as losing muscle mass there's no doubt about it, you need to do resistance training to help offset the GD Lupron! Aerobics are not enough.
Thats right bob, strength training is tthe key to strong bones, balance immune sys and general health. You can use light weights, your own body squats etc. or dynamic tension ie. flexing your muscels which I intend to do if I ever become bedrridden.
Biking is one of my passions as well. I mostly mountain bike, but also hit the road weekly. Have not noticed any pain from sitting in the saddle but definitely don't have the hill climbing strength from the pre ADT days. Have been doing resistance training and have lost a significant amount of muscle strength. Can no longer do pull ups without assistance and pushups top out at about 20 per whereas pre ADT could easily do 10 pull ups and 100 pushups. The ADT blubber is very aggravating. I spend 5 - 8 hours weekly at the gym and 5 - 10 hours doing some form of cardio (mostly bike riding) and eat a 2,400 calorie plant based diet. I don't drink alcohol either, yet I have a few extra pounds that hang around my middle waist. Love handles and belly paunch. Did not have this issue pre ADT. Have experienced with changing the calorie input and if I drop below 2,000 per day for a few days some of the middle waist weight seems to shrink, however, my appetite is never satisfied at this low calorie count diet. I'm 5' 7" and 152lbs and my fit bit says I burn about 3,000 calories a day. Not true while on ADT. Will definintely put on weight if I eat more than 2,400 calories per day. Not a scientific study to back me up, but in my experience the loss of Testosterone changes how my body metabolizes food and I need about 20% fewer calories as a result. Kind of a bummer because I love food too!
I had a 32" waist when it bit me. Seven years later, I now have 34", 36", and 38" Levi's. Today, I wear 36" with a belt. Why don't they make a 35" waist? One always needs several sizes, amirite?
I hit the gym faithfully. I can still do 3 pullups despite my added ADT weight. I only do one set of each exercise. My appetite is never satisfied regardless of how much I eat or overeat. I am still hungry after a meal. I know, I should cut out the carbs, but easier said than done.
in reply to
Well, not REALLY. Ya just throw out the ones in your home and stop buying them. If you don't have access to them, ya can't eat them. After several days without them, you become ketogenic don't miss them. I haven't eaten a donut in over 30 years, for example, because one dose of trans fats harms us for weeks to months. OTOH, I ate no bacon or chickenskin for 20 years ... until I educated myself mo bettah, went ketogenic, and found out that moderate amounts of bacon and chicken skin are good for us.
All the exercise we can do won't, by itself, manage our weight. What we eat ... and that does NOT mean just how many calories we eat -- is the key.
Considering the nasty side effects of our cancer treatments, it amazes me that so many people have the will power to takes these drugs, but not to eat healthy foods. I eat all I can comfortably hold as often as I want ... and my boot camp uniform is loose on me simply because I quit eating $#!+ like grains, sweets, and potatoes. There are even Type II DIABETICS, for God's sake, who still eat those (for them) poisons.
There are physical therapists who specialize in training of the pelvic floor muscles
Joel
All excellent comments, Dr-WHO. Back when I was Dx'd, I didn't have this support group, and was quite naive. I did little research. I put on fifty, but lost thirty of it. I didn't exercise, I thought I got enough in a days work. Then the day came when I couldn't do it. Now I'm top creampuff in these parts.
I too ride. I had brachi therapy in March, 26 Radiation treatments in June and 6 months of lupron ending in Sept. I ride 60 to 80 miles weekly but used to be 100. I have no bike pain from seat but the Lipton seems to still give me fatigue. My first thought was not Lupron but given these comments, I now think my reduction in stamina is from that. They took me off at 6 months due to weight gain( 30lbs). I have lost weight but have issues with stairs, long walks and rides. How long does this last post Lupron treatment. My Dr advised resistance on bike but I just am too weak. Is this the new normal? I am 65. I too have trouble standing from floor. This feels like an early old age I am resisting and appreciate this thread.
Also, my testosterone is non existent. Can Dr look at safely boosting with injections or is that too risky. Honestly may be will to take some risk to get some vitality back.
Well this is what I was told 5 years ago when I started Lupron (now on generic Eligard, same thing as Lupron). I have stage 4 metastatic bone cancer. The Lupron slows way down the reproduction of the cancer cells in my prostate. This happens because there is an area on the cancer cell that recognizes androgen in the area, which then allows to cancer cell to form DNA and multiply. This area is called AR (androgen receptor). So Lupron fools your pituitary gland at the top of your spine in the brain to stop making androgens throughout your body, including the adrenal medullas and testes. However, this system is not perfect and some single cancer cells still leave the prostate. These cells have an affinity for long bones and attach to the inside of the bone. Then the cancer cell sinks into the bone and leaves a pock mark (like a teenager with acne on the face). So it depends on how many cells are doing this, where they attach, and what your current PSA is. The PSA increases when cancer cells in the prostate subdivide releasing an enzyme. Everyone is different so we can not tell if this is your problem. When large numbers of cells sink into the bone they weaken the bone, so my doctor gave me a shot of Xgeva (an osteoporosis drug) twice a year to strengthen the bone. There is an expensive MRI where Doctors can see how many "pock" marks you have and see if it is increasing, the cost is very high for such tests. My Eligard is $144,000. per year without insurance, and it has been 5 years now, so I don't want to loose my insurance. This year my Doctor took me off of Xgeva because he said I m doing so well, my PSA has been 0.00 for 5 years now. So good luck with you and keep biking!
Thanks. So far the bone scans have been negative. They measured my bone density and found it was low (osteopenia). So far they do not want to treat it.
I knew I was a lightweight when it cam to exercise, but the people in this group put me to shame!
We're still recovering from surgeries after two years. Just as our wives have been saying for decades ... we need to think with our heads, not our crotches.
I just finished a crushing, whole-body strength workout, and plan to keep doing so throughout my ADT (and chemo?) even if "crushing" comes to mean pressing matchsticks. Low T virtually dissolves our muscles; only serious strength-building exercise (lifting weights until failure) has a prayer of keeping some of them. Out strength will return after ADT only if our T comes back (the older we are, the less likely that is) and only if we stay with the serious strength-building weights work (100 reps is more aerobics than strength. I wonder how many perfect ones a 100-pushup-guy could do at 20 seconds per pushup.)
I'll have to get back to ya on the fat issue. I have no idea how well proper eating can solve that problem while on cancer drugs.
First, I commend you for keeping on riding while on Lupron. I went through almost two years on Lupron back on 2006-2008 after IMRT. In 2013 I retired and took up road biking, doing 4000+ miles a year. As a few others have said, I doubt it's the Lupron affecting the pelvic floor, but it is a huge cause of fatigue. I'd look at the bike saddles on your road and spin bikes. Are they excellent saddles, made for road cycling? Unfortunately many people think they need a wide and very padded saddle. If that's what you have on your spin bike, I'd change it to a good road saddle. All saddles are not equal and you may want to ask your local bike shop if they have loaner saddles to try before buying one. Many low- to mid-range cost bikes have less than stellar saddles. I bought a fairly high-end bike (Trek Domane) and the saddle didn't work for me. I swapped the saddle out after a few months for a Selle SMP Pro saddle and just recently switched to a SQLabs 612 Ergowave Active Ti. I also hope you are wearing good padded bike shorts, even on the the spin bike. By the way, I'll be 70 in May.
I am also an avid biker. I was on Lupron and Casodex for 26 months (I have been off them for about 28 months now). The last year I was on Lupron I rode over 1850 miles. The seat pressure was not a problem for me, though I never had surgery (I did have external beam radiation). Also, I did not gain any weight while on Lupron.
The surgery may be more the cause of the pelvic floor pain. I would think you could strengthen those muscles with the right exercises, though I have no experience with this.
One thing I do is wear TWO pair of padded cycling inner liner shorts to relieve pelvic pressure when riding. Even though pain was not a problem for me, I was concerned about riding causing prostate inflammation.
I inline skate about 800-1200 miles a year, depending how I feel. I have been on and off Lupron for years. I get off Lupron once my PSA bottoms out and then get back on when my body tells me to. I have been living with metastasized PCa for over six years. Yes, as everyone else has said, lupron is not supportive of muscle development or bone health. Get off it when you can. In my opinion it isn't good to continuously suppress your testosterone. Good luck, and I hope you are able to do the "Michigander" bike ride.
ADT weakens EVERY muscle in your body including the pelvic floor muscles.
If when on ADT you might have some incontinence that may go away when off ADT. And cycling keeps those pelvic floor muscles stronger.
I ride as well, much more than you up to 10,000 miles a year these days.
So I could measure my lost strenght on a computerised indoor training system which can measure watts produced. I lost between 1/4 to 1/3 of my strenght on ADT. Stamina dropped off the charts so to speak. My calves became smaller and crappie skin appeared there.
I gained 30 pounds from when I started this cancer journey. I've lost over 25 of that to date off ADT and still going.
Your arms, back muscles, everything needed for riding gets weaker. You can strain muscles easily.
I bought a Ebike much like the racing bike I normally rode. To ride while on ADT, you can make riding as easy or hard as you want by how you set the power levels.
I went back to my regular racing bike 6 or 7 months after getting off ADT and my testosterone rose back up near normal levels. I keep getting lighter and stronger and I keep increasing my miles to keep all of that happening.
Weight gain or loss shows up all over the body including how you sit on the bike, as there is more or less fat or muscle in that area. Certain things like fistulas in the prostate bed can result after RP as well which can cause pain or discomfort.
E bikes can keep you riding while on ADT, consider them.
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