When I was on Lupron, I had no sex drive and lost almost all my body hair south of my navel.
When the hot flashes stopped as my testosterone came back, I was expecting my body hair to come back too. But that hasn't happened. I have very light hair on my legs and my pubic hair is very thin and doesn't grow much. I (being science oriented) decided to shave part of it to see how quickly it would grow back and it was almost a year to get back to the same height as the rest.
Also, one of my testicles really shrunk during this process. My penis lost about 1 inch of length, but one of my testicles almost faded away. Also, it didn't hang as low as the other one, and the chords which suspend it seem to have shrunk also, because it is right at the level of my body cavity now.
I'm 66m, and I know that there are changes that happen as men age, but I'm curious about other guy's experience with EBRT and Lupron.
Loss or severe reduction of body hair?
Shrinkage of testicles?
Hanging height shorter?
Thanks.
Written by
daguro
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Welcome to the club brother .... imagine trying to find two brass BBs folded up in a bath face cloth ...... partially stuffed up into your abdomen fighting for real estate with your PCa lymph nodes and tumors ......
If you’ve had the pleasure of the added adt belly fat , a pair of mink lined long handled tweezers is very handy too ...
Just say’in 😂😂😂😂😂😂🙀🙀🙀🙀
Sometimes it’s hard to keep your eye on the prize ... months , maybe a couple years , or more, added to your life .. to spend with your loving wife and caring family. It’s a “ small “ ( get it ) price to pay.
What is EBR ? There are at least five common side effects of taking Lupron. You have a couple of them. You should read an e-book called “anti deprivation therapy”.
External Beam Radiation Therapy (EBRT) refers to the delivery of tightly targeted radiation beams from outside the body. A course of EBRT involves several daily treatments (fractions) over a few days to a few weeks.
Someone has already answered the beam radiation part , here. There are a few side effects I don’t have , so far .... I haven’t experienced spinal compression, heart attack or stroke .... maybe a minor stroke but not very serious . I’m taking Lupron Xtandi Zometa and it has pretty close put me in a wheelchair. I have nearly all the other SEs on the list I guess..... my medical team is giddy with my results considering my initial first DX .... “ DX to inpatient hospice “. I’ve escaped death for 25 months thanks to adt. I joke a lot about it but I know it’s given me two years of unexpected life and I’m hoping for more. I have adt induced diabetes, very poor bp regulation, it jumps to 215/110 with very little exertion, and my cardiac QRS train looks like a pong game . Still , like my wife likes to say that it’s better than the alternative.... frankly “ I can learn to live with it “ ... literally. Yayahahaha yayahahaha
I have all the above, facial hair is going strong, The girls at work love my hairless legs and often times we compare whose are softer. Take it for what it is and have fun with it. Thanks goodness no man bobs for me
Yes, to all of the things you mentioned (funny how my docs glossed over the ADT side effects). Some more: wt increased. BP increased. Penis shrank (even with the use of a penis
pump). Testicles shrank. Depression. Sadness. Loss. Hot flashes
galore. Joint pain. Zip, zilch, zero sex drive. Muscle mass (what there was of it) turned to mush. I hired a personal trainer and did high impact exercises, treadmill/elliptical, and walks. Made me feel better emotionally but minimal impact upon physical self. So, all in all, a real bummer for 2 yrs (actually 9 mos of ADT but it's taken 16 mos+ to return to some kind of pre-treatment "normal.")
And, no, body hair has not returned.
Suggest: "Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones." Easy to read book that describes ADT, its side effects, and suggestions for dealing with them.
I can see that I am not alone. I have decided to do something about the weight gain over the coming year. I will not go quietly into that long dark good night.
Hello, I am 73 y.o. with Lymphoma LNH and with a G(4+3=7) Grade 3 which with a special CT-Scan became G(4+4=8) Grade 4. Had Eligard 45 mg on April 4th 2020 which was screw up by the clinician nurse then got Lupron Depot 22.5 mg/12 weeks X 2 on May 29th 2020 + August 24th 2020. Officialy my ADT finished on Nov 16th 2020 but no relief yet. How long for a 6 months on ADT to have no more SE???
PSA went from 22.4µg/L to 0.03µg/L and Testosterone from 18 nmol/L to <0.2 nmol/L or 0.0577µg/L.
VMAT-RT 3Gy X 20 Fx for 60 Gy from June 8th to July 7th 2020. There is NO hair where they irradiated.
Wt decreased. BP increased. Penis shrank. Testicles shrank and play yo-yo, left one the size of a grape that hide in the inguinal cavity and the right one a little bigger but far from the pre-ADT size.. Severed Depression on Sertraline 100 mg and every 2 weeks meeting a Special Psychologist who deal only with patients that have at least 2 cancers and many other health problems. Sadness. Loss. Lots of Hot flashes. Joint pain. Tingling left arm, hand and in the left leg and foot. No libido. Muscle mass (what there was of it) turned to mush. And I got A cup breast or nice pectorals that I never had.
Then on Oct 1st 2020 got diagnosted Severe Pulmonary Emphysema Gold Grade 3.
I am 6' 1" and weigh 158 lbs.
Chronic Renal Insufficensy Grade 3 on Active Surveillance.
Chronic Acute Lumbalgy since a discoidectomy in 1994, now on Fentanyl Patches 87 µg/hr with no real relief.
I have to use a walker 4 wheels with a seat and force myself to walk 0.75 km morning and afternoon.
I can definitely echo the many side effects (I'm on Eligard) noted above including moodiness, shrinkage and hair loss from most of my body except surprisingly my head where my shiny pate has sprouted hair. I'm still officially bald but for now it's oddly comforting to feel some hair after decades of relative smoothness.
The radiation did a number on my guts and I stupidly had a salad (loaded with green onions) the other day which took an agonizing time to make its way painfully and explosively to the exit. As healing has progressed, my digestive system has become super efficient and I can put on weight with no trouble. Higher blood pressure is another feature that I'm trying to control though breathing and exercise.
Lost most body hair but facial hair seems the same. Penis shrunk but not sure my testicles were affected. Hot flashes have diminished over time but can't get rid of the15 pound weight gain I had during the first 6 weeks of Lupron. (and 20 overall). I have the man-boobs which I am really embarrassed about- I haven't taken my shirt off in public since treatment began 8 years ago. I wish I had known about some of the treatments for man-boobs when I first started treatment, that don't work after a period of time.Muscle loss is quite significant and testosterone loss has made recovery from total knee replacement more difficult. Often suffer minor cramping in lower legs before waking up in the morning. Other side effects too. I don't like any of the above side effects, but am more than willing to "suffer" them and happy to be alive 8+ years post diagnosis.
ADT really is like a deal with the devil. You get to live longer (good) in return you lose much of what made living enjoyable for you (bad).
I had a good friend who refused ADT despite being diagnosed at stage-4. He was a composer who didn't want his mind dulled.. and we talked about his choice. He decided since he was stage-4 with no chance of a cure that it wasn't worth the losses ADT inflicts on the patient when there was no possibility of a cure. He accepted my situation was different (despite being high-risk, I was deemed "curable" with radiation and ADT) and that there was an eventual end to ADT for me - which he was told would not be his situation (ADT for life.)
He paid for Provenge (wasn't easy finding a place that would treat a metastatic patient who wasn't hormone-resistant) and when that didn't help - LU177, which did seem to be helping, but Covid travel restrictions put an end to those treatments. After about 3 years he passed - his last few weeks were agony, but until then he was still productive, and arranging for recordings of his works. I know that he never regretted the choice he'd made.
I think that's a choice that I wouldn't want to have to make.
I took the deal with the devil, and so far it's worked as hoped (undetectable PSA for over a year), but I do greatly suffer from the side-effects, despite my coming off ADT (after 18 months total) at the end of June. My medical oncologist told me it's not uncommon to take as long as a patient was on ADT to be relieved of most of the ADT side-effects, and that over 70 - it's a craps shoot if you'll ever really recover. The weight gain has to be fought just as hard as any - it won't disappear and turn back to muscle as the ADT leaves the body and T hopefully starts to recover. The moobs are for life now, so might as well get used to them. Shrinkage of all sorts isn't going to reverse. A bit of libido might return, but using it still will be a challenge. I've had cardio issues - not all attributable to ADT, but quite likely made worse by ADT (4 stents so far..)
So - we make our bargain with the devil - but the one regret I have is not being told before starting Lupron what the side-effects could be. Doctors are very hesitant to really explain that to patients, and at the time the patient is making that decision, they're probably still in panic mode from the initial diagnosis, and like me thought "Let's do SOMETHING now!"
Would I have made the bargain again? Probably. But at least I'd know to fight against some of the side effects (heavy exercise to avoid the weight gain/transfer), perhaps drugs/radiation to avoid moobs.
Ah well - could'a, would'a, should'a. Saw a mime the other day that I loved: My entire life can be described in one sentence... "Well, that didn't go as planned..."
Hope everyone has a healthy and happier 2021. And good riddance to 2020..
It's not a dire situation for everyone so don't be discouraged. My last Lupron injection to finish off 24 months of ADT was one year ago and I've made a complete recovery with zero lasting effects other than 25 lbs that are a struggle to lose with gyms closed in the USA. My total T was 475 and PSA undetectable the last time I was tested so my ADT vacation continues, hopefully for a long, long time.
I’ll give you my experience with the items you listed! All are on the mark!! I had one nut sucked up inside most of the time. The other not as bad but not hanging normally. They are both hanging like a proud 65yo’s should with my being two years out!!! Hot Flashes and all things chick (mood swings....) ended about a year out, like you, when my T hit 100+/-. Pubic, facial, armpit... hairs virtually stopped during ADT and came back thin and short. I worked construction outside every year and always grew a thick beard quickly. Now I can go without shaving for months and only grow a 1/4” or so.Its hard to get used to but do the penile rehab. I do the Vac every other day and low dose Viagra at night and as humiliating as it is.... it works. I ended up a complete embarrassment down under and that has reversed... not the ED completely but even that is getting better!! I wish I started that earlier!!
The 'signs / symptoms' you describe are similar to what happened to me. I had my Dx in early 2017.
I went on an ADT 'vacation' (not everyone can do that - it is conditional) for about 3 1/2 years - which will be coming to an end SOON - due to a BCR.
Most issues seemed to resolve themselves - with enough TIME to allow for recovery - which took well over 1 year. I felt like my 'old self' again - actually about 85% of me - that was was a vast improvement over the very SICK me at that time when it all first became apparent that something was very wrong with me / my health. (The PCa Dx of course)
Some 'things' will likely NEVER recover / return to 'normal'.
The loss of libido and the 'penis thing' (size loss) may be permanent - although I have recovered SOME libido after about 2 years when my 'T' returned / stabilized.
My 'T' sits in the 'lower/normal' range - meaning I have enough to grow my hair again and have some sensations about being a 'man' again - but it is permanently reduced when I compare the 'before and after'.
I have permanent ED that can only be 'repaired' by surgery - an option that is OFF the table for me.
I am fortunate enough to have a long time - loving wife who accepts me for what I am / have become.
IF your relationship is dependent on sex, you will be in a tough spot. Of course there are treatments and options for many of us - so IF that is an issue - find out what CAN work for you.
I KNOW for a fact that many men can be helped - I went to an ED clinic with one if the best out there - I saw many 'happy' patients come out of there - so I KNOW that there is help out there. I have chosen NOT to go the surgical route - but I COULD have said YES to that - it is a personal thing 4 me .....
Being a PCa patient will involve having a few curve balls thrown at you.
Do some supplemental reading - there's LOTs to learn and some adjustments that will likely need to be made - depends on Staging and how you respond to treatment(s) and some other factors that could be unique for you.
There is no such thing as 'generic' prostate cancer - we are different, although many of us might have some similar experiences.
Predictions are difficult to make and some comparisons might not always be reliable.
Hopefully, you have a good medical team to consult with / manage your treatment options.
Be your own BEST advocate - don't expect that everything will be done for you with ease and on a timely basis - there's a lot of men out there with this disease and the only one who can advocate / make you number one in YOUR case, is you (or your spouse with the right attitude and proper information at hand)
Within these forums, you will find some answers and guidance - do some reading and find out the truth about some of the possibilities that await you - depending on progression and other factors.
And don't PANIC - that will not serve you well - there is enough TIME left to make good decisions without risking your life - when I got my Dx - I was told 'you have advanced aggressive PCa' !
I thought I was a walking dead man - that was nearly 4 years ago - I have learned a lot since then and I expect to be around for many more years to come - so the lesson is - predictions are often a 'fools game'.
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