Question, this is something know one has mentioned to me. Is it normal for your testicles to shrink significantly, on Hormone Therapy?
Absolutely--and your Penis gets smaller from non use.
Sounds great! Beats the alternative. Anything else I should pay attention to?
Visceral fat in the belly area--watch sugar and anything made with Flour.
Sorry to be so naive but, what happens if I don’t?
to not do what?
Sugar and flour
Yep watch those carbs!
Nal — to not watch sugar and flour intake.
My take on it — you will look like you’re 7-8 months pregnant with a 10lb baby that’s growing faster than you can eat.
Diet matters with this stuff, it just does.
I think even the healthiest diet will still fall to the belly...but not as big. I could be wrong.
Correct--anything with added sugar, or any carbohydrate[Bread, Pizza] that is quickly converted to sugar in the body---will become Visceral fat for the most part, and be deposited along the mid-drift area, as well as cause development of man breasts, while on ADT.
Many people do not understand the nature of Visceral Fat Deposition---it gets not only in the upper layer of the body under the top skin layers, but it develops in the internal organs where the fat raps around your internal organs, intestines, etc. So if you are lucky enough to come off your ADT meds---fat reduction, can be accomplished for the outer fat layers, but the internal fat deposits, they are near impossible to get rid of.
So my suggestion as to diet---has been and I have advocated for it going back 30 months ago--is a very high Protein Diet--early/Breakfast going to later in the day to a smaller meal dominated about 60/40 by protein/ veggies, and salads--and at night eat like a pauper--low protein fat--big 15 ingredient Salads/cooked Veggies. Eating fruits the dark one are good for Pca, will add sugar--but you cannot avoid the liver creating the glycogen---->Sugar reaction, if the body get too low on sugar, the body will make from fat stores.
So the best defense for the adding of Visceral fat on ADT is what I suggest as to diet--IMO only--as well as Adkins. And hard workouts in the gym, doing Chest Presses, with weights, and lots of AB crunches--along with a Elliptical Workout/Stair Stepper/Raised Tread Mill.
If you see my picture post in Nalakrats Exposes Himself --I was on ADT for 22 months--before vacation--there is no belly on me and you are looking at 17 inch Biceps, 47 inch Chest and a 35 inch waist---I did have a gain of an inch in my waist--actually got up 2 inches, during ADT, but no 10 lb. baby--got the waist down after ADT--and I am 75 years old. So it can be managed---maybe my wife is only 28 years old--and I had an incentive---OR, I was not going to give into this disease's side effects.
P.S. Breakfast today was 4 ounces of 90% lean Chopped Meat Naked Hamburger, 4 ounces of Fresh Caught Salmon, 2 scoops of Cottage Cheese. If I do not eat like this for Breakfast, I substitute Muscletech's Whey Isolate Protein--32 Grams--with a 18 Gram Protein Bar--also using Whey Isolate--and of course all my supplements with it. Tonight is what I call an Alexander Salad--you can find a basic recipe--I already had my 60 grams of protein for the day--Diet and exercise will offset a lot of side effects. I have not been on ADT for 11 months now---and I still maintain a strong diet profile--I have had one slice of Pizza, in 35 months. Eat to live!!!!!
I sort of agree with Nalakrats but the body can not make glucose from fat stores.
Glucose can only be made from glycogen (in the liver and muscles) if there is no carb. intake.. The brain needs about 60 gm of glucose a day and cannot function on fat. Muscles love using fat but not neurons.
If you have zero carbs and use up your glycogen then you will break down protein (muscle) to make the small but essential amount of glucose you need.
The rest of your body is happy with fat (fatty acids) and ketones.
My weight has gone up on the ADT/Abiraterone dexamethasone but I am keeping reasonably fit with a rule that I must exercise every day.
I have 2 to 3 bike rides a week (150 to 220 km per week) and 3 gym sessions per week and 1 or two 1 km swims per week.
I think if I could stop all alcohol I might loose weight but I love my big luscious Aussie reds.
I think I indicated the Glycogen----> to Glucose metabolic---action, upon reduction of glucose in the body--I guess I did not say where it would come from---Thanks for adding more knowledge to the topic. And yes keep that exercising going--the benefit besides holding back some of the Visceral fat, is the obvious reduction of the menopause side effects. I can say from experience--that when I came out of the gym, while on ADT---I was invigorated. I purposely found the best time for me---which was 5-7 PM, for my Gym workouts--as it cut the hunger response, and let me get to bed with some nights, with not even a hint of hot flashes, There was always some afternoon fatigue---and I would do a power nap an hour before going to the gym. Being retired--I could do this. Pray all men can find their way thru the brain fog----crossword puzzles, and playing Bridge--with some experts, kept my mind sharp.
My husband is on a therapeutic Ketogenic diet getting about 20 carbs per day, but the visceral fat on the belly is still real...even off the Lupron. We both were watching it grow like the hair on a chia pet. None of it made sense to us until I began looking at side effects.
He’s 6’2” and now weighs 184lbs. from his former 178lbs. So his weight is climbing but not as bad if he were on the typical western standard diet.
The cardiologist looked at his belly and told him he needed to lose weight. sigh. I’ll have to fill her in about ADT.
When the carbs get too low the body will take glycogen stores, and makes glucose. I never had total control of the visceral fat--but when I got of ADT--I got most of it gone.
I have little knowledge about the state of ketosis.
The limited knowledge I have is something like this:
"The body saves up for the future in two ways:
Glycogenesis. During this process, excess glucose is converted to glycogen (the body’s stored form of sugar) and stored in the liver and muscles. Researchers estimate that the body stores approximately 2000 calories in the form of muscle and liver glycogen. Depending on the person, this means that glycogen levels will be depleted within 6-24 hours when no other calories are consumed. Luckily, we have an alternative method of energy storage that can help sustain us when glycogen levels are low — lipogenesis.
Lipogenesis. If there’s already enough glycogen in your muscles and liver, any extra glucose will be converted into fats and stored via a process called lipogenesis. In contrast to our limited glycogen stores, our fat stores are virtually unlimited. They provide us with the ability to sustain ourselves for weeks to months without adequate food.
When food carbohydrates or calories are restricted, glycogenesis and lipogenesis are no longer active. Instead, glycogenolysis and lipolysis take their place, freeing energy from glycogen and fat stores.
However, something unexpected happens to you once your body has no more glucose or glycogen? Yes, fat is still used as fuel, but an alternative fuel source called ketones is produced as well. As a result, ketosis happens." Craig Clarke
Ketosis is a disease symptom--can be detected on one's breath--my Lab in the 60's always smelled like Ketones, as I used so many in my work--that I can recognize it on someone's breath--and then you look to diet to correct. Let's face it, the extra fat, we obtain from our drugs, we have to live with--we just can minimize the result.
Even when one comes off their ADT--the Visceral fat that got deposited around the internal organs---only some will dissipate with extreme AB crunches. My Dr. says you cannot get rid of it all. So far he is right.
Hubs isn’t on the diet to lose the Lupron belly but to keep from some of the metabolic issues it causes and QoL.
Is it possible you are confusing Ketoacidosis (like diabetic) with Ketosis?
Yes I did.
He only uses pure organic stevia.
Boy , I don’t like that stuff. Better organic honey... Manuka..costly be healing potential. I hear bad things about stevia and other sugar subs tricking you system in a bad way. I’m no expert. Fresh organic turmeric ginger garlic onions and an alkaline diet is recommended for all cancer .You have a natural path so you must know this. I envy the hyperbaric . I believe in that too.. mistletoe I was to try if things went south ..My pleasure to banter with you.
I agree with what you have to say. My breakfast consists of smothies made with frozen fruit two eggs (raw ) whey protein and Greek yogurt and a glass of milk and a scoop of chia seed. Nexus all in a blender it will keep you full most of the day.
My husband’s breakfast is coconut milk, flax meal, chia seed, hemp seed, cauliflower rice, raspberries or strawberries, vanilla, cinnamon and salt. It’s Keto porridge, very similar to your breakfast but it doesn’t keep him full for most of th day.
That’s awesome. I want want one right now. What some people don’t understand until they try it is once you switch to the natural diet you crave it and don’t want to go back.. I cheat sometimes..I’m a sinner , but I get right back too it.. I’m sure that is why my blood work is so great. 4 yrs of holistic eating..
Wow! Raw eggs , you are a bad ass. I love the chia..take care
This may be helpful info for what you may or may not experience : mayoclinic.org/tests-proced...
The individual medication insert can be found online if you’re interested in knowing more, some are not.
My husband’s oncologist did not explain the Hormone treatment to us except for “a little fatigue” off/on. I wonder if this is how they are instructed in what to tell the patient.
We still like our oncologist but he could have been a little more forthcoming with the number of side effects most men experience.
It ‘s the unspoken truth.. Docs know patients are ravaged by ADT.. It’s the price that we pay to stay alive ...
Your briefs will fit better.
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 11/09/2018 6:30 PM EST
The sad truth... I used to be 7 and pretty girthy, no “John Holmes” but above average... now after Rt , hooo, continued Adt use and double use of adt and T = < 2 for past 4 yrs I’m borderline pencil dick. No balls - pencil dick what a catch ???for my sexy wife.. She loves me to put up with this BS.. and more.. Take Care
I developed ED after RP and then hormone therapy and radiation. Also learned the radiation can cause it a couple years after you finish treatment. Had an injection therapy test with an ultrasound and mine is caused by venous leak. Pills and injections won't fix it, so I'm getting an implant next month. MSKCC in Manhattan has a great sexual health department to deal with this and even if you won't come here to see Dr. Mulhall for treatment their website and videos are worth looking at to figure out how you want to get treated elsewhere.
I use to be two Inches........ from the floor.
j-o-h-n Friday 11/09/2018 6:31 PM EST
Yes. The function of your testicles is to make testosterone (and sperm). When they can no longer do that, they atrophy. They will rebound in size if ADT is stopped.
Well, right now and most likely to my end, that’s not going to happen. What I mean is, there’s no life after ADT. So, this new side affect is prolonging my life. I should have deduced the fact of what the ADT is doing and not being surprised of my newly found discovery. Thank you for the information, I’m just amazed that my Oncologist didn’t at least bring that up. Over a month on ADT, and I’m still discovering things. That one was a little shocking to say the least.
You might want to consider orchiectomy. They fit you with normal sized prosthetics. And no more injections.
So, removal of the testicles could be a helpful thing?
Castration is pretty much the same whether it is chemical or physical.
I get that, I guess the question would be, does it matter if I make it permanent or not. The Cancer is going to adapt eventually with or without my testicles. Removal just means I will never produce testosterone again but, that doesn’t mean that will prevent my Cancer from taking me in the end. Is that about right?
Yes. The hope with castration is that progression will be delayed, but not stopped entirely. As the cancer evolves, it gets super-sensitive to even the smallest amount of testosterone, so it is best to eliminate what you can even after castration-resistance.
Do they take you on and off the ADT throughout this process? Or you stay on them until it stops working all together? Man, I need to really have a better conversation with my MO. They are so vague! It also seems like they all say the same shit with restrictions,
At 68 had mine clipped. Planning on 10 more years and didn't want ADT drug side effects that exceed orchiectomy side effects... Fast growing, aggressive, invasive, and already metastisized. On ADT for life or never again, not a hard choice for me.
A lot to consider for sure. I’m 47, with a young wife. It’s tough knowing that I will never be able to partake in sex if you know what I mean. So, removal stops ADT? Because basically, those drugs are castrating me anyway so my body doesn’t produce testosterone. Maybe saving my liver is worth the “CLIP”? And all other side affects from ADT?
You will also never smell like an old goat again....
Actually, my wife likes goats, not sure about their smell though.
I can relate, I'm 54 and my wife is 45. Yes there are other satisfying ways to be sexual as a couple, but you don't necessarily have to abandon the possibility of having intercourse. You can get a penile implant if your prognosis requires permanent testosterone reduction/ removal. The only issue might be that they would need to leave the scrotum when removing the testicles since the implant leaves the pump part of the device in the scrotum. I get my last radiation treatment today, but will be on lupron/zytiga/dethamexasone for another 5 months or so. I'm scheduled to get an implant next month.
Good suggestion, I will look into it. Did you talk to your oncologist about this?
He knew I was doing the injection therapy test and was fine with that since the meds wouldn't interact with anything related to my treatment. He sent a quick message to the surgeon because the surgery date is only slightly over 30 days from the end of my radiation treatment, but other than that he said it should be no problem.
Some men choose intermittent ADT. But its use in men who are already metastatic is controversial.
Tall_Allen...two questions - why get it done if you still need to have hormone therapy? And
-any recommendation where to go for an orchiectomy?
Orchiectomy REPLACES hormone therapy with a GnRH agonist (like Lupron or zoladex) or antagonist (like Firmagon). It does NOT replace second-line hormonals like Zytiga, Xtandi or Erleada.
I would think any urosurgeon can do it.
They let you find out for yourself.
Mine shrunk to nothing with adt and Rt.. I stopped Lupron shots after orchiectomy 9-16..a great move for me ..no going back on that one.. it was a relief, no more shrunken painful balls or tri-monthly shots for life..I’m still on a pill form of an adt test drug..hopefully it’s checking the “T” produced from the adrenal gland.. I’ve had no visible signs and PSA undetectable for more than three years.. Whoohoo ! Thank God! I m cured! I could be pushing daisies right now.. Big balls, shrunken balls, no balls. No import . Unless someone wants kids. The penis shall shrink also with extended adt. A real party for us men and our partners.. I ‘ m grateful for ever day although I’m severely diminished in almost every way. Finding some happiness in the storm of suffering and emotions is my daily goal All of my symptoms are from
Adt causing no “T” and radiation . therapy for 8 weeks.. The answer to your question is ,Yes . Everyone on adt will experience this.. any many , many side effects of castration.
Thank you! I think I know what I am going to do.
Hell yah! You’ll do what’s right for you brother and live along time.. this is a little personal but I’ve lost my ego along with my balls. I have not lost erections.. during the day the puppy sleeps But at night all night every night, I m hard and pee seven times a night all with A piss hard on . I’m 57 and was sexually driven for 43 yrs. what is funny is that I never had this much night wood before APC . Crazy sh&&!
Lol, your good my brother! I need to know shit like that! We all need to shout out things we might be going through! That’s how we keep it together!!!
That and a punching bag..
Sorry! I used to be a terrific speller.. I fumble around a lot now . Blame mental de-cognition also on no “T for 4yrs.
Hello Dough47, Yes its normal in Harmonal Therpy. Because Harmonal Therpy majorly involves the process of reduction of Testostrone in the body,resulting in reduction of Testicles.
of course the longer your on treatment to reduce ones psa u loose the function of your penis and all that is connected toit. its called living, especially when your taking lupron/eliguard shots, its full purpose is to reduce ones testosterone and bone mass.
One side effect mentioned earlier about weight gain and watching your flour and sugar intact is spot on. ADT can push you to pre diabetes as well. Also start taking the recommended vitamin D and calcium to protect the bone loss. You might need a bone density scan at some point. Lots of challenging changes to your mind body and soul, but it works to lower the pc. Stay strong!
My respected MO transferred to Jacksonville, FL last December. At my first meeting with her replacement I asked if he could help me manage some of the cardiovascular side effects of 8 years continuous Lupron injections. He told me that was my primary physician's job. His only interest was following the Protocol.
What was your former MO’s name? I need a MO who knows PCa within reasonable distance of me here in Hilton Head Island.
Bob, my former MO was Dr. Roxanna Dronca who is now at Mayo/Jacksonville. Her specialty is blood cancers, but she was part of the CaP team @ Mayo/Rochester and, after having gone through two others there without really clicking, I delighted in our visits. She was the point person in developing Mayo's sipileucel-T clinical trial and then overseeing its implementation once it became FDA-approved. She handled my many ongoing questions well, and I felt we had a great deal of mutual respect. She worked well with staying in the loop once most of my care switched to a clinical trial out of the NIH in Bethesda, MD. Her father was undergoing metastatic CaP in Romania at the same time as me, so that heightened her interest in CaP as well.
I live in Washington/ skagit valley
Sorry break 60, I thought you were asking me
Doug. Men just don’t talk, yes I have a pair of peanuts now. , and small man breasts. But the PSA is .005. So I will take it Fight the good Fight
Yes, your penis also shrinks
It doesn't have to. Try using a pump everyday.
3 years on ADT2 (Lupron + Casodex) during and after IGRT. My little guy lost almost 2" of length from disuse. Even with recovered testosterone now, it's not recovering size though it's at least "working" again. The boys are less than 1/3 of their original size, still kind of mushy, and it's almost like they're not there anymore. Never have to worry about adjusting them, or getting squished by clothing or whatever. Full removal wouldn't be much different.
Long term ADT ends up not being so different from orchiectomy. If I do go back on ADT it will be permanent (G9 5+4, cT3a, not encouraging), and I'm planning on orchiectomy for simplicity, cost, and maybe less of some side effects.
Why does it seem like I just read the wall graffiti in a men's room? All I can remember is the guy pissing in the urinal next to me saying "man is this water cold" and me replying "and deep too".
j-o-h-n Friday 11/09/2018 6:35 PM EST
Size of grapes
Why do we keep them then? The Cancers doesn’t go away.
Had mine loppped off a year ago and don't miss them at all.
Did you get prosthetics
No. Thought that they would get in the way like the real ones.
Lol, I got ya!
Hi Doug 47, nobody here has mentioned the brain fog that goes with hormone treatment. It has been proved I read that long term treatment can lead to Alzheimer desease.
I threw my casodex away & recently had success with lu -177 treatment & there are trials in the states now.
Keep on keeping on!
Has for me. Been treated with Lupton for over 14 years and mine are very small.
reduced from one capsule every other day until he died at age 107 when he was taking one Xtandi capsule...
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