I started ADT about 33 months ago and have experienced steady weight gain, ( 40 lbs in the first 30+ months) Today, I am a full 6 pounds heavier than I was exactly 1 month ago. Any idea's as to what could trigger such a sudden increase? I asked my MO at my last visit, why my thighs were ballooning, he blamed lack of Testosterone. Is it that simple? My exercise has been limited during the winter months, but that happens every winter and with little to no noticeable effect. A bit about me, I was dx'd with stage 4 pca in May 2019 PSA 629 and Gleason 4+5=9, with widespread bony metastasis, marrow involvement, lymph node involvement, and numerable pulmonary masses, as well as ground glass opacity nodules. I've responded well to treatment psa steady at 0.24-0.29, T less than 20, but the weight gain and chronic bone pain are concerning. Any thoughts on the weight?
Rapid Weight Gain: I started ADT about... - Advanced Prostate...
Rapid Weight Gain
Hi Tommy - my husband was diagnosed at the same time as you. He walks at least 10 miles a day and has kept all of the weight off. We have played many cards as far as drugs and each drug that he is on or each therapy has thrown him a little craziness as far as pain. Still - he gets outside or on some type of machine and drills out the miles. He is also eating whatever he wants. Do you have a treadmill at home or a stationary bike you can ride?? The lack of testosterone, chemo, radiation all play a part in the weight issue. (up down up down) My husband is taking Lenparza right now and I'm noticing that he's eating a lot! He's about 6'2" 185.
Try to keep moving!!!
10 miles!! I haven't been able to walk 10 miles a day for 15 years. Good for him... I think I will walk to the library today. Fair hill and over a mile carrying books both ways..
In your bare feet too? Just kidding. Have at it.
Make sure they're paperbacks. Someone said they bicycled over 3,000 miles last year. I didn't even drive my car 3,000 miles.Of course j-o-h-n could do 3,000 miles on a unicycle and not even sweat IT.
Ten miles?? My lungs won't allow that, nor my bones. I do 30 minutes three times a week weather permitting
He's shoveling snow now. He surprises me everyday! The mets in his spine are horrible. It's not going to keep him down!
Be careful. I landed on my back a couple days ago. Happened in a split second.Luckily just have sore neck muscles. I think I had whiplash as my head bounced on the driveway when I hit. Missed the skull mets luckily and I think the thick stocking cap helped cushion.
Ten miles? I would have been mugged about six times.
Metabolic syndrome is a danger for men on lifelong ADT. Because your metabolism is reduced, your daily caloric intake has to be decreased - probably below 1500 calories/day and your daily exercise has to increase markedly.
Thanks, I've been reducing my calorie consumption gradually. I think I need to really attack it more forcefully.
Me too, and I don't have ADT as an excuse. It's just that metabolism slows with age. I put on a suit yesterday and the pants were too tight. I'm going on alternate day fasting to lose 10 lbs.
Allen - I’ve been ADT for 6 years now and also dealing with weight gain. Can you direct me to more information about metabolic syndrome as related to PC/ADT
Invest in a fitbit. Fitbit Charge5. The battery lasts a full week and it only takes 30 minutes to charge. Get a sense of how much you move each day….and then start making changes to incrementally increase your movement. Besides dedicated exercise time, park far when you go to the store for example. Every hour walk for 5 minutes up and down your street…an easy 750 steps right there each time.
MyFitnessPal is an excellent app and is an easy way to count calories. It opens your eyes to how many calories are in your food. It has a huge database of food with calorie counts. Invest in a digital scale so you know how many ounces/grams of a given food you are eating.
Fit Bit is a great investment. It is 1 pm here and my Fit Bit is showing 5845 steps completed.By bedtime, it will show 11 to 12000 steps and about 5 miles. Everyone needs to buy a fitbit.
My dx is only about 5 months after yours. Maybe 5 months earlier my psa would have been 629 instead of 1621.
I am a full 30 pounds above what had been a good weight for me but it seems to have leveled off there and stayed there. But at times I will have a 4 to 5 pound surge then back down again to the 30 pounds overweight. I have noticed my thighs as well.
I got off on a bad start. Wasn't told about potential weight gain and I had lost my appetite and weight prior to dx. First Lupron shot nurse remarked I didn't have anything to inject into. I figured not eating was a bad thing and I was going into chemo treatment so once the Lupron did its thing and my appetite came back I was eating a lot. It felt like I was going to live after all. Losing one's appetite is scary.
I am a little more concerned about your bone pain. Your PSA would indicate no issues nonetheless how have your other blood markers been such as ALP.
And when last did you have scans.
After chemo my PSA never got as low as yours is. It hovered around 8 to 9 for months. I was having bone pains and thought it was the so called arthritic effects of ADT. In retrospect it was my cancer festering. Since starting Zytiga about 5 months ago and getting PSA down to 1.4 hardly any bone pain. I can cross my legs again.
Finger trigger lock went away about a month after starting celebrex but I don't know if it is coincidence or effect.
The trigger finger lock is brutal at times. I play the guitar and at times I find myself in excruciating pain in my grip. Also get it in feet and toes. Bone pain may be related to ankylosing spondalitus. I know I'm spelling that wrong. lol
Yep your name stuck with me as the guy who plays guitar.I am a wannabe still at my age. Guitar and amp collecting dust. My son though excels at it. Here's a link to him playing on the porch lol.
youtube.com/watch?v=3f10S4v...
The treatment has left me with tender thin skin.
Are you able to maintain the calluses on your finger tips?
Check with your Dr. but Celebrex might be a good one for trigger finger. I think it helped me. I was prescribed Prilosec with it to lessen effects on stomach.
Celebrex was also found to extend survival for us. It was coincidently discovered to do so during a trial unrelated to celebrex. (Charter or Stampede trial)
That thing you couldn't spell lol. I can't either. It was mentioned in my imaging along with the many bone mets. Almost an age degeneration of the spine.
I assume you are on a bone med. like Zometa or Prolia.
XGEVA for the bones, guitar and O'douls for the soul youtube.com/watch?v=U08mLBB...
Excellent. That's what I'm talkin bout.
Guitar work is excellent! Rock on TommyCarz!
Very nice. Maybe I should dust off my strat. What amp and pedals are you using? I liked that tone and sustain.
Nice.
The study you reference showed Celebrex snd zometa tighter (but neither Alone) reduced deaths about 20%
Schwah
Pick that guitar back up, brother. Excellent therapy for the mind
He's got some talent, I love the effects especially the looper
Cool. Thanks I'll tell him.
Kinda wish he would put on you tube when he lets loose with blues rock jamming.
We met up with members of a circuit blues band in Chicago when we lived there quite a few years ago and one of the band members said sure I will give you some lessons. After he heard my son he said I don't really have much to show you. Your doing great keep it up.....
He started studying guitar more a few years ago and is going for more technique and multiple styles these days.
Your playing is exactly what I listen to and yearn to play like. Really good.
Thanks Tommy and CampSoups and those recommending Fitbits. I've taken my eye off of the ball regarding weight. I cut right back on carbs at diagnosis. Friends and family were all really concerned by my weight loss. So now I have started to carb up. Wholemeal breads and mainly sweet potatoes and oats but also rubbish like apple pie etc. My weight gain is around my middle. I'm what you would call skinny-fat. I will cut back and exercise more. You guys are on a very similar time trajectory as me. Feeling disheartened today but will bounce back. Good luck to you all.
You are in the same boat as women who go through menopause. Weight gains of 30 pounds or more are very common- ask any woman! Hormonal changes do this. Unfortunately, you need to change your eating habits and eat less-- you are simply not using the calories as efficiently as you used to. Look into intermittent fasting / reduce empty calories / cut fried oods and empty carbs...this is a lifelong change.
I have struggled with this for years as always had a problem managing my weight. With ADT it made the situation worse. I started putting on weight mostly on the waist. Cut down on calories through carbs reduction. Not just less but drastic reduction though not totally keto. I take 40 to 50 gms carbs daily. Increased exercise and now my weight is under control and I've lost most of my waistline.
I see Tall Allen does i termittent fasting also. Do you just not eat one day and the next hold to 1500 calories?
Only 5 months into Lupron but have only gained 5 pounds, plant based diet , very few grains. Free weights and or indoor bike every day 30-50 minutes. none of the common side effects.
If you are a regular reader here it should be crystal clear that those who stay fit have a better chance of a better outcome, not a cure but a potentially better outcome.
Never had a regular workout schedule till now, I do it because I believe my life depends on it.
You can do it Tommy!
So freaking true. And the best is weight training. It will take the weight off even when you’re done working out.
Schwah
I have managed to keep my weight in check by lifting heavy 5 times a week, then light cardio and leg work on weekends. I haven't seen the need for a fit bit as I am pretty regimented or obsessed as my friends say with my weight and health. I am finding great success with 1400 calories mostly proteins when I am building muscle and about 1000 calories when I am dropping weight, on the average of about every 6 weeks. I also find intermittent fasting to be a great weight loss tool in 24-36 hour intervals. I only have red meat once a month as a treat and never eat potatoes or bread. My beer is now Ultra or seltzers and only when I am low on my daily calories, has taken a lot of experimenting to get my formula right but is works for me. Good luck with your fight
Funny you said that, I went to a Doctor that was a nutritionist as her specialty. She couldn't help me because she couldn't conceive of my caloric needs being so low with Lupron and Zytiga. Finally gave up on her
You mention Lymph node involvement. Did you have lymphadenectomy? I had 29 removed 2 years after my original prostectomy. I have lymphedema in my left leg and wear a compression sock to my upper thigh. Doesn't sound like your issue but throwing it out there.
A app helped me lose weight after dx, approx 45 pounds at my absolute lowest. I used a free app called MyFitnessPal. It retains your info so it gets really easy if you eat a lot of the same stuff. It has a barcode scanner built in so you can scan packages for quick entry. It also keeps track of carbs, fats and proteins as well as some vitamins. The paid version offers more but I never felt the need for more. I always gain some back in late fall when my eating stays consistent but excerise levels drop. I dropped 5 pounds in a couple weeks, right before the holidays, using the app but I do exercise quite a bit when the weather holds. I gained it back over the holidays due to too many sweets and lack of exercise. It helped a bunch and if I need to get serious I will start using it again. Now with things back to normal as far as weather and my diet I have stopped eating breakfast lunch and dinner and am focusing on one good brunch meal and a dinner meal. I get some snacks in as well and that seems to be exactly what I need to lose weight gradually. At least the pound and a half I lost last week would make it seem so. If the weather improves I will start cycling more and then it will drop off quicker.
Good luck.
Hi Tommy - I put on extra weight as well since starting ADT. I tried the keto diet this fall and dropped 20 lbs. There’s an app that makes it pretty easy. I know it’s probably not a good long term strategy, but you’ll see almost immediate results
What's nuts with ADT weight gain is we lose a lot of muscle mass, and our weight gain is totally fat. I knew all this was going to happen at my diagnosis 3+ years ago. I was about 175 at diagnosis, and today I am about 150. Based on my strength, I think I’ve lost about 25 pounds of muscle. I am very susceptible to foggy thinking, but I’ve come to believe that it’s totally the carbs that cause weight gain. If you eat excess carbs that cause your blood glucose to go above 120, then the insulin kicks in and your cells accept the glucose, hence fat gain. Above all though, are you enjoying your life? Whatever it takes to be happy, do that.
You know what, I am enjoying life. Thank yoy
I also dabble in guitar… your son plays very well…
I gave gained weight over the 4 years, from 159 to 200, try to Eat more veggies and fruit and exercise, I do alot of walking and not near food. It will be a constant battle but just watch you BP, mine won't up now on more mods. Smaller meals help with healthy snacks inbetween , lots of stuff on the internet.
I sometimes walk to Taco Bell.
Lots of good advice here Tommy. I would only add to the comment that the scale lies. Again, it’s not a quality barometer because of the simultaneous fat gain and muscle loss.
It’s not a fair fight, as you know! Our metabolism is already slowing with age and then these drugs are gas on the fire. But try to turn it around if you can, it will only get harder to do it later.
The irony is that for our present day health and well being the exercise is so important, but without caloric restriction we don’t really stand a chance at significant fat loss. We just have to do BOTH, tough though it is.
I’m a regular gigging pro guitar player and I feel you on the joint impairment. I don’t have pain outright but I do have advanced basal joint arthritis in both thumbs which is plenty uncomfortable once in a while.
Thankfully classical guitar is the only thing I’ve more or less had to give up-just too many demanding voicings and relentless bars and half-bars. Everything else I’m fine.
You know how it is-once the show starts you don’t feel any of it😀
I had a phase of Lupron-induced trigger finger and still get cramping in my fretting hand and both feet when I perform, but serious hydration, stretching and some ibuprofen gets me through.
Nice playing! Never stop❤️🎵
One other suggestion. Add Metformin. Many here believe it helps fight the PC plus it’s know to help reduce weight.
Schwah
Hi Sorry to hear this. Apart from the addition of exercise, DO try for 4 weeks high fibre whole foods plant based diet - low fat, no sugar (refined/added) & low salt. See if you start to lose weight. My husband has been doing this since diagnosis, still loves his food and there is a huge variation in his diet and he does not have to fast. Food preparation takes time but we both do it together. He would gain weight on ADT if he ate like he used to.
I've been applying E2 gel as my only ADT therapy for almost four years and can't gain a pound...wish I could put on a couple. My boobs may be responsible for a few ounces, but that's it!
Once I made it thru chemo and was on Adt , I also started the weight gain. I went from 145 to now 187. Not to mention man boobs, lack of man hair. My doctor put me on ms cotin and dilatin for the bone pain. Just saying. Keep up the battle fellow warrior. 🙏🙏
I'm 80 years old, 6' 2", 255. I practice intermittent fasting, having one meal at noon and another at7 pm. Then nothing till noon the next day. You get used to it. I also cut waaay back on carbs.
I do Nordic Walking (with poles like cross country skiing) about a mile every day, two thirty minute sessions on a stationary recumbent bike (while watching TV), and two workout sessions with 8 lb dumbbells (also watching TV).
So far no weight gain, but I started out 25-30 pounds overweight.
Good luck.
Considering your fasting and exercise I think you meant that you are 155 lbs not 255 lbs ?
On ADT for 9months. After Chemo had problems with water retention on lower back and hips. Take Furosemide PRN and it gets better. Per Nalakrats take Pectasol (good fiber) and also intermittent fasting. Exercise every day and so far weight is stable. Is part of your weight gain water retention?Good Luck.
Can you share that to more than one? I do struggle with weight and after starting on Xtandi it is more difficult.
It's a tough problem. Everyone has to eat. I'll just make the observation that the battle is won or lost at the grocery store. If you bring it home, you'll eat it. I'm talking all the sugary junk food. Even stuff that might seem healthy like juices can have a ton of sugar. Exercise is always recommended but tough if your health is severely compromised.
Do you encourage day fasting?
Some (or all?) ADT med make you less sensitive to insulin. Weight gain is a early sign but this can turn into diabetes. I exercise the same way all year round so exercise doesn't play a factor in my weight. Diet and drugs do.
My "perfect weight is at around 160lbs-165lbs.
I began Lupro on Jan 20 2021 and Zytiga some time in April 2021. In January of 2021 I was a little below my usual weight because I tried out Bicalutamide/Casodex in the fall of 2020 and I had an adverse reaction to that drug and my weight fell down to 147lbs!!! So stopped the drug on Dec 27 2020 when it sent me to the hospital because I could barely breathe (not Covid related).
As can be seen in the graph, my weight went up to its normal range in the first quarter of the year. But once I began Zytiga in April, you see my weight climb not stop until I hit 193lbs in late August. Then I decided to fight back against the insulin resistance caused by the ADT and began to eat the Keto way (no carbs) and you can see that my weight has gone down and been more stable since. I hover at around 177lbs for the past 3-4 months.
Will keep this short as you have so much input.Ketogenic diet worked magic for me. Puts the body into its “hunter” mode. Burning body fat for energy needs and the fat drops away. Unlimited energy and no hunger pangs! You need to learn about it and it takes some days of adjustment to get into ketosis. Dropped from 190 to 144 in about 6 months. Now maintain it with low carbs (not fully keto) and intermittent fasting 18:6 most days and eat ALL that I want for dinners.
Good resources are the free portions of DietDoctor.com or The Ketogenic Bible on Kindle or print.
The FitBit is a great idea for motivation and monitoring. Metformin helps regulate insulin and also decreases appetite. I take just 1000mg/day as I’m not diabetic.
Since you are low carb, do you actually mean "...eat ALL that I want for dinners." and not "...eat AS MUCH as I want for dinners." ?
My answer has been to reduce calories and increase exercise.
I was gaining weight and colesterol and BP were inching up until I went to a more plant based Whole Foods diet with 3 days per week swimming and 3 days per week walking.
Consolation eating - especially during these pandemic times drove my weight up while on Eligard. Once I realized what was happening, I found that the best way to stop weight gain was to bar the front (or back) door to empty calories - don't let them in the house. Nobody needs sugar in their beverages. Chips are a health threat. Raw carrots and celery will help with the cravings. You're lucky that your guitar playing provides an outlet to keep your mind and hands busy. A daily weigh-in helped me see if I needed the combination of more workouts or less food. I'm still about 20 lbs over my ideal weight of 175 but it's coming down slowly but surely.
At diagnosis (Sept 2020), I was already overweight. I was really concerned about putting on more weight due to treatment. For the first 10 months after diagnosis I walked every day - despite weather conditions (just like the old time mail carriers). After a pitiful start I built up to an average of 4 miles a day. I have had knee problems my entire adult life due to a misspent youth, so I wore knee braces, and paced myself by how I felt after the first ½ mile. One thing I found was that the ADT often made me feel fatigued and too drained to walk, but once I pushed through the initial fatigue I would feel much better and be able to enjoy my walk. The only caution was that that first year I would sometimes hit the wall, where if I overdid it I would just be wiped out the rest of the day.
Following my diagnosis I also switched to a primarily plant based diet. During that time I lost about 40 pounds, but I was very concerned about muscle loss. After reading the posts here about weight lifting, I started walking every other day (average of 5 very hilly miles), and lifting weights on the in between days. I also changed my eating to follow a modified fast schedule. I now eat a light breakfast at 10AM, vegies during midday, and my dinner before 6PM. Dinner is usually either; wild salmon, beans/lentils, vegetable soup, veg curry, or a big stir fry with tofu. On Jan 1 I hit my goal of losing a total of 60 pounds since my diagnosis.
This weight loss has made a significant difference in how good I feel, my sex life, and in my energy. My only recommendation is to find what works for you and then dedicate yourself to keeping your body strong for the battle.
Sex life! Who has that! Just kidding some do.
Your walking experience reminds me of myself although I haven't been religious about it this winter (Moved to the twin cities a year ago and yes colder here than Chicago ha).
The 1/2 mile decision point lol. I still have to decide if it's time to turn back for fear of not making it back if I walk too far sometimes.
Don’t know how much walking I would be getting in during a Minnesota winter either. I’ve spent some time in upstate MN during the winter, and we had to stop work one day because it was 30 below. Too cold for me!
Here in Oregon I’ve walked in up to 10” of snow, but it was only the low 20’s, and I warmed up and tired out fast.
I think one of the biggest surprises for me was how deceptive the fatigue is when I first started exercising. In the first few weeks following a Lupron injection I feel cruddy and lethargic. However, I’ve found if I can make myself pick up a weight, or start my walk, the fatigue slips away once I’m warmed up. I have had a couple of harsh lessons where I ignored my body telling me to stop, that I was getting too tired. In those cases I’ve gotten slightly disoriented, totally wiped out and had to take a rest day the next day. The good news is that I’ve always been fine the second day afterwards.
As for the sex, it has had to change due to my loss of most of my penis. But we’ve had fun learning new stuff, and we have been going at it like teenagers. It’s a pandemic, and I have Stage 4 cancer, so sex sounds like a good way to go.
Keep the faith!
I can relate to all you said. Yep I have gone thru the dizziness, short of breath, and all and been totally wiped out the day after excercise. My excercise is mostly task related aside from walks. Have 2 sets of stairways that due to working from home I traverse many times a day. Good for now but I fear towards the end how stairways will fit into my compromised condition.We've discussed a "lift" installed if necessary.
Great for you on the "sex" end of things. I like that.
Yes stage 4 plus pandemic has been a secluded life with my wife and I really loving our time together.
What do you want to know?
I switched to whole food planted based (WFPB) diet and am now 33-35 pounds lower than when I started ADT (Lupron). Blood pressure, cholesterol, glucose all improved over time. Now I eat all I want without worrying. Works gradually but steadily.
It’s simply stated, though perhaps not so easily done: Eat Less, Exercise More.
Here’s what has worked for me:
The eating should be as nutrition-dense as you can handle. Don’t change over quickly from a high-fat low-nutrition diet to a “healthy” one, do it gradually. You need to end up with something resembling a Mediterranean diet. Eat small meals, with more frequency…e.g. 4-5 small meals each day.
Ramp up gradually on exercise also (cardio + resistance), it needs to be a sustainable trajectory so you’re not discouraged. Try to do something every day, ideally minimum 30 minutes. Increase the intensity over time so you’re eventually … impressed with yourself. Then double down and increase it even more. Heart rate needs to be pushed. Go for at least 60%-75% max heart rate where max = 220 - your age. Work up to higher heart rates gradually.
Lifting weights + resistance work with bands + core work is absolutely required for us guys with zero T. LOTS of it. If you do a small amount each day, so it becomes a habit, soon you will want to do more each day, then soon enough you can’t live without it.
Literally, in our context…
I think the lack of testosterone slows down your metabolism, so you need fewer calories to maintain whatever weight you had. I put on 20 pounds in a year despite exercising and eating as I had previously. I'm reducing my calorie intake now to lose the weight, plus continuing to exercise, and you may need to do something similar.
Doctor was giving me Prednisone for some reason??? (I was on Xtandi). Gained 30 pounds. Quit the Prednisone and once again I look like The Wizard of Oz scarecrow.
hi TommyCarz ... weight gain is an ADT side-effect ... doing these really help me: regular exercise and vegan diet and intermittent fasting ... best wishes ... Nous 
Ok will send tonight. Thank you very much and I will follow instructions.
Okay
I have a secret diet where you can eat all you want and never gain weight. The secret is, don't swallow......
(yep, I know that's an old one but it's still a good one)
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 01/25/2022 7:19 PM EST
appreciate your humour j-o-h-n ... always picks-me-up and causes me to smile and laugh ... thanks ! ... appreciate you for doing that ... best wishes ... Nous
Reading your home page I see that you are very busy an perhaps over loaded. For that reason I will go to my dietitian at the cancer center and resolve this problem as I have the others. Thanks for the offer and good fishing.
I must be the odd one out here, LOL. I have lost 50 lbs so far, most of it in the first few months after dx. From the get go I modified my diet / food intake. In general, if it isn't healthy, I don't eat it. Sugar intake is close to zero. I eat a lot of whole grain and beans. Very little meat. Lot of vegetables.
5'8" and wt 195 at dx, now at 145.
My experience is totally different. In 2013, after trying conventional eat less move more to lose weight for 50 years, I tried low carb with great success, even reversing diabetes with normal A1c before I developed prostate cancer, and am now 100 pounds down from when I was practicing medicine. The last fifteen to twenty pounds after I had a ADT w abaratarone , when I restricted vegatable to a Carnivore adjacent diet.When I went on therapy I restarted Metformin 850 t.I.d. Which kept my A1c in normal range.
This therapy elevates blood glucose, and results in elevated insulin. Insulin blocks hormone dependent lipase thus preventing you from using fat as an energy source.
Sugar and wheat stimulate the same pleasure center in the brain as cocaine, and are thus addictive and stimulates overeating.
Metabolic products of vegetable oils stimulate the endocannaboid centers like
Pot, and causes appetite increase. They also cause a sterile inflammation.
I have also adopted time restricted eating with a 8/16 pattern, and gave up wheat and other grains in 2013 and my autoimmune thyroiditis went away.
My preference is for grass finished meat and wild caught fish. Ruminants are superior to pork and chicken as they can hydrogenate the vegatable oils in their food, rendering them harmless.
So, eat lean, and lose the carbs?
What does eat lean mean? To me that means the conventional lean meats. That’s not what I do. I eat unlimited saturated fat and cholesterol. Fatty cuts, fish skin, butter,ghee, tallow.Relatively recent research shows that saturated fat in the blood is not related to how much saturated fat you eat, but how much carbs, as the carbs cause lipogenesis of saturated fat. One study which was higher carbs and 12 grams of sat fat had higher blood levels than those who had 36 grams of saturated fat,
Also detailed research of those with familial hypercholesterenia, I. E. Over 300, showed that those who lived past sixty, had longer life spans than this with normal cholesterol.
So I refuse any treatment to lower my cholesterol.
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