What they don't tell you about Androgen Deprivation Therapy (ADT, hormone therapy)
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- Опубліковано 19 чер 2024
- What do you want to know about Androgen Deprivation Therapy (ADT, hormone therapy)? Learn from this interview with the massively knowledgeable researcher Richard Wassersug, Ph. D., and his colleague and coauthor, Lauren Walker, Ph.D.
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Good discussion. I started this journey stage 4, psa of 1230. First oncologist explained nothing. Had no idea what to expect. Second was useless too. Third is great. Malecare's APC page is where I learned the most. Eligard and Abiraterone expected for life but 5-1/2 years later I'm still going. Some days are hard but hey, I'm still here.
Thank you for your post. I assume you also take 5 mg prednisone. Keep going, it is totally doable. I've completed 2 years of the same, currently taking a break. It is important to exercise.
Keep going strong 💪 friend u are not alone enjoy life and remember ur love ones need u take care ❤️
Amen, brother, I'm just beginning my journey of cancer stage 4. My psa was 40, and they freaking out. 5 1/2 years later, you're still here that gives me hope, brother
I am coming up 7 years since diagnosed with numerous bone nets, lymph nodes and psa 9000. Response to Zoladex and Casodex was immediate after 4 months psa
Amazing result.
Great reply! Thank you!
How old are you?
Amazing. I thought my 525 PSA was high! Like you, I consider diet and exercise paramount.
You were clearly metastatic. Are you still on ADT's or any drugs? I'm one year on Nubeqa and Orgovyx. Also had 6 infusions (Lutetium trial). PSA now .4.
Awesome, and congrats! Do you have hot flashes or night sweats? After 2 years off adt I'm still having both
Totally agree with the cognitive effects and short term memory impairment I’m on ABI + Pred
Been dealing with prostate cancer for 3 years now. The only thing I can say with certainty is this: Base your decision on what type of cancer you have. How aggressive is it, how soft is it, how is it likely to behave, how deformed is it etc,,,. Now there are numerous ways to find out these questions, you may need to force certain kinds of test from your doctors. Of course the insurance you have/don't have will play a large part in treatment. 😢
Dr. Walker's point at minute 13 is spot-on. It was tough for me hearing that I had choices and that I had to decide. I would rather have been a passive patient and been told "This is your plan" but am now glad I wasn't. I'm making better choices because my radiation oncologist really made sure I understood the choices and that he wasn't making them for me. I chose 1 year ADT (lupron & zytiga) along with 28 doses of radiation to my prostate and 5 to my L1 vertebrae. Stage 4b with met to spine. Diagnosed in June at age of 52. Gleason 7 (4+3).
How is Lupron working for you now? Let us know. Best Wishes
As expected. The fatigue, especially after the shot, from about day 4 until week 4, is rough. I can barely keep my eyes open and I've had a hard time staying motivated to do anything. But, as with anything else, we have the ability to drag ourselves out. I've started some light exercise which seems to be helping.@@robertrosanelli444
What was your PSA when you were diagnosed?
@@schmingusssMy PSA was 4.29 when I had symptoms that indicated it had broken out of the prostate and attacked some nerves. It had risen to just over 6 a couple months later when I was diagnosed with a biopsy.
@@robertrosanelli444It's a rough ride. The fatigue and loss of strength is tough. But, it's working. An MRI a few weeks ago on my spine showed that the tumor on my L1 vertebrae has shrunk to 1/10th it's original size! So that's good news.
Very interesting video. I'm going through all of this.
Was diagnosed with metastatic prostate cancer in March. I'm 61. PSA was 525. Went on Orgivyx and Nubeqa plus Lutetium trial. Two more Lutetium infusions left.
Now PSA is 2.3 and still dropping.
I exercise a lot every day (walking, weights, intermittent sprinting, climbing). I've had no libido loss at all. Still achieving erection, although takes a little longer. Still very sexually active. Younger partner.
Total vegetable-based diet plus nuts, green tea, white tea, black tea, some beans, limited fruit, AMLA powder, tumeric, white button mushroom powder, vinegars, flax seed, milk thistle. No direct carbs like rice or pasta or flour-based foods. No simple sugars. Have lost weight (now at 169 lbs down from 194) due to not eating anything that will add weight. Am maintaining quite a bit of muscle and have built new stomach muscle, although it takes a lot to get results since T is 2.
Most prominent side effects are fatigue, amplified emotional reactions, some depression, and sporadic feelings of hopelessness. Try to push past. Exercise always helps overcome any fatigue or cognitive negativity. I experience almost immediate turn-around of emotions once I'm exercising.
Fantasy/goal is to eventually go off ADT's and "manage" with diet or less invasive alternate therapies/drugs. I can dream, right?
I appreciate the discussion very much . Great advice to talk to yourself during walking.
Thank u for such a positive report. Since I’ve always maintained from working out (well I’m no gym rat the way I use to be when I was younger and building muscle) I still have weights and a band plus regular exercises I do daily at 68. I’ll be starting ADT once my insurance clears and soon after getting ready for 40 days of radiation. I chose this over surgery after going through continuous research and videos. I liked the RO better than the Surgeon for he talked to me heads up and gave me much more hope with continuing on with my life. I’ll add onto what I’m doing already and get my diet a big shake up. God bless you as you continue on.
@@Vincent50 Like you, I maintain and achieve a great deal working out. In fact, working out usually kills the depression for me (from the ADT's). Extremely strict about what I eat, too, as outlined above. All the best with your therapy and journey, Vincent.
Thank u all keep fighting will live longer never give up 🙏❤️
Do a cardiac and benchmark bone density check before starting. Use Relugolix instead of Lupron to lower cardiac risk...lift weights and do cardio...we need to exercise anyway to stave off sarcopenia...
Absolutely corr!
Correct!
I'm on relugolix,just started this month going on a week now. Exercise.walk, weights..getting a bone density test done may 3rd this friday.
I found the exercise discussion to resonate with my experience. My background is diagnosed with leukemia in 2006 and oligometastatic PC (Gleason 4x4) Jan 2018 - on Lupron only since Feb. 2018. I am now 80 and am very active. I walk daily for about 1 hour and cut firewood for our heat that involves weight lifting of heavier sections in moving, stacking and feeding the fire all winter. I am bothered by increasing hot-flashes and short term memory loss but in general life is good .
Great discussion ... lot's of decisions to make ... ADT's therapeutic value vs lifestyle and long term side affects ... including insulin resistance , bone density, muscle loss, cardio vascular, etc ...
Destroying my mind, thank you now i can be a single idiot
Thank you for the wealth of knowledge. I want to exclaim that thinking about your body and self is not an asocial activity; our minds, our inward being is full of others. I do not believe that music affects our thinking negatively but helps us to move in a rhythmical manner. The obstacle to exercise is social: there are the “get out of here” boys at the fitness center which prompts the necessity for earbuds.
This video was real helpful. It answered many questions, It cleared some of the interactions I’ve had with my DR. And how there was so much more I needed to know beforehand. Dr. Only advice to me was to lose weight and exercise. That’s it.
When i met with my RO 2 1/2 years ago to plan my SBRT treatment part of his recommendation was that we start with a 3 month course of ADT. i was 81 at the time and especially since i have heart disease and Type 2 Diabetes I declined the ADT. He readily agreed and put no pressure on me to change my decision. Since then...July 2021, my post treatment PSA has decreased from 19.3 before treatment to 5.1 and gradually now to .87. I am scheduled for my next PSA test in December, but I noticed that when i had my last PSA test in July, they included a Testosterone test which had never happened before. The test result was 300. I dont really know what that means since it was my first Testosterone but im wondering what my RO will say in January when we meet. Maybe he isnt happy with my PSA still being as high as it it after 2 plus years? Just wondering if he might now raise the issue of ADT again. I dont have any symptoms other than ED but at my age i dont worry about that very much. I doubt i would agree to ADT now but not sure how i should be thinking about it . .
This information is so spot on in my experience. My husband age 64 diagnosis stage 4 prostate to bone psa level 2100. In hospital began radiation Kyphoplasty surgery chemo and lupron injection. Psa no in 4 range. Newly diagnosed hbp hot flashes no libido ed ( button as described below in comments), now mci and alzheimers dementia 😢
And doctors get about $4,000 per month profit from androgen deprivation injections (ADT) with lupron or eligard and they profit $4,000 per month if its 1 or 3 or 4 or 6 month injection ). So if its a 6 month injection doctors have a nurse give the injection and the doctor gets about 6 times $4k equals $24,000 profit.
👀Billed insurance for lupron as chemo meds---a little over $3,200. One 6 month injection
Pickleball is the answer. Works for me
it was racquetball for me. But now the knees are gone!! AND I'M OLD!!
Besides the adt side effects, at 85 I’m finding that just getting out of a chair is a major effort, but I can still walk, so that and rebounding on a mini trampoline are better than nothing.
No Doc ever mentioned dick-shrink or memory problems at the beginning of Lupron. I could not consider other treatments at the time as I was actively declining into an organ failure event in March of 2019 in which I spent 29 days in a cancer hospital from heart & kidney failure not expected to walk out after needing to be put on dialysis which lasted 7 months. Heart failure and kidney failure did stabilize but dialysis left me with weak leg bones. Diet, fasting and exercise have left my leukemia and prostate oncologists not to leave out my nephrologist scratching their heads that I am still alive let alone thriving. PSA rising slowly now @ .28 and PSMA from Feb. 2023 showing NO bone mets that were bright as tactical flashlights at diagnosis in 2018. Don't give up as you might well beat the odds.
After radiation treatment and hormone therapy my PSA came out good. I was told to continue the hormone therapy for another year and a half.
After 3 months I have canceled the treatment and am hoping the side effects disappear.
To date I have no sex drive,I still have hot flashes and I now deal with loss of muscle mass,I am tired and stressed out.
How long until.these side last?
Amazing Richard & Lauren. Thankyou
My hot flashes disappears after some years. You can have sex or live longer with ADT. It's up to the patient. I was stage 4 but now is undetectable. It's been 12 years since my cancer was detected. I chose to live longer so I took ADT for 10 years. 🙂
My balls shrank and after almost 2 years being off ADT they still have not come back very scary and depressing
Sorry to read your comment. I am a prostate cancer survivor...well should say prostate cancer treatment survivor ...myself. ADT is dangerous.
DOCTORS ARE HEARTLESS
No one ever said anything about penis shrinkage…with urination being difficult finding the button I am left with after 2 years on Lupron. It is a cruel drug.
Of course I’m asking for my spouse.
Use a vacuum pump daily along with cialis to keep the blood flowing
Thanks for your comment. Men need to know (as well as their spouses).
I have watched many professional presentations like this and they all talk pretty much completely in generalities. Some may, sometimes, a few, occasionally, once in a while. Very, very frustrating.
I get the impression that to these professionals the side effects are just an after thought and they'd rather not talk about them at all, especially the sexual side effects.
I totally agree. My husband was diagnosed with stage 4 in May at 58. No mets but a suspicious lymph node in his chest. Doc put him on Firmagon and Nubeqa right away. Didn't really discuss side effects, just handed us an info sheet that said stuff about fatigue and hot flashes. Imagine our shock when we investigated this treatment and found out about bone loss, heart damage, liver damage, brain damage, diabetes, depression... not to mention penile and testicle shrinkage, ED, loss of body hair, complete loss of libido and growing breasts. When we tried to bring up these side effects and discuss ways to mitigate them (tamoxifen, zoloft, pumps, low dose cialis, etc) they brushed us off and didn't want to discuss it - he later got most of those meds from his PCP. The only thing the oncologist was interested in is getting rid of the cancer... which hey, is great... but ADT won't be of any benefit to my husband if he's a 60 year old man in an 80 year old body. He plans to transition to intermittent ADT when he finishes his treatments to preserve some quality of life - especially if this has to be a long-term treatment. My advice is to educate yourself because most of the medical professionals will NOT be honest with you or will just brush off any concerns that you have that don't stick to their model. If I have to hear some unempathetic doc say "oh, yes, some people do that but you are different" one more time, I'll probably pop.
DOCTORS NEED THE MONEY
The biggest problem I've encountered in the decision whether to agree to ADT is that there is little to no QUANTIFICATION of the benefit of ADT. Doctors are chomping at the bit to tell you there IS a benefit, just not how much. To the best of my ability to research the issue I conclude that the benefit is pretty marginal and at great cost, both financial and physical. Ask your doctor how much longer you're going to live by adding ADT, and you're likely to get a lot of hemming and hawing.
What about Gynocomastia and what can you do before-hand to prevent?
I am going to do the radiation treatment for Gynecomastia. I already have some Gynecomastia & radiation will not reverse but it will stop it. The other option is Tamoxifen but that has some pretty hefty side effects which I do not need on top of ADT (Orgovyx).
What about ,(Femara also known as Letrozole along with radiation?
My husband has been on tamoxifen since a few weeks after starting ADT. It does have possible side effects, as mentioned below. My husband hasn't noticed any and is monitored regularly - he has not developed breasts. Radiation can also be used, but has to be done before as it will not reverse any effects. Just an FYI, this condition, if it occurs, does NOT go away when treatment is stopped. The only solution afterwards is plastic surgery which is not covered by insurance and is very invasive.
I could write a book next years 20 years of having prostate cancer removed in 2006 37 Radiation treatments few years later Clinical trial, after been on intermittent hormone therapy ever since finally found out at by having PET CT SCAN Dec 2023 will a second one next month when Psa gets high get shot Eliguard sucks it down then ok for a while
Its a mistake to think breathing longer is living longer. I am in year 26 starting with prostate cancer 12/98. I've been through everything including radical prostatectomy (biggest mistake of my life) except said NO to chemotherapy (because immediate dysfunction). Tried many alternative treatments. If I had the last 26 years to do over I would not have had surgery or follow MDs/urologists nor oncologists. I would use a herbologist and been better off even if I lived only a few years. Lupron causes major cognitive impairment.
my doctor has discussed all these issues with me at length.
And ????
How is the man able to grow the beard?
Diagnosed w/ prostate cancer in April hormone therapy removes testosterone and you have ED as a result my is can I take penile injections while on treatment? Does someone know?
After only 3-4 months on ADT, nocturnal erections will cease. This means that delicate tissue in there will no longer get regular infusions of blood needed to maintain the health of the tissue. There are treatments that can help - you should discuss getting a daily low-dose cialis or, if that doesn't help, tri-mix injections, with your urologist or PCP. Also, plain old fashion pumps do the same job, but you have to use it regularly. If that blood flow isn't maintained, the tissue will be permanently damaged and the only way to "fix" that is with surgical implants.
@@kellieselwood thank so much for this information
If you have male pattern baldness and become an adult, it will not matter whether or not you take ADT or surgically remove the testicles because you will continue to lose hair. The removal of testosterone would have had to be before you ever gained puberty.
The liberation from libido is the positive. All else is noise
Just had a friend die from p cancer .. thants not a good way to go … either..
Thanks for pointing that out. It’s a fact which seems to get loss as people discuss treatment side effects. I’m not trying to minimize side effects but the alternative is not pleasant either.
ADT based on what I'm hearing here is a real trick bag of side effects. There has to be a better way , I think there just might be, based on testimonies of others . The first rule of medicine should be do no harm. Ironic how when side effects from conventional therapy arise the solution is a more natural modality as a counter action. Spock were are you, lol
I did Orgovyx for 55 weeks and then took a year off. Now back on it. The primary key to dealing with side effects is TONS of exercise with a special emphasis on weight training.
That's good to know thanks. @@edmundpeshall511
One would think a better way of attacking Prostate Cancer would emerge - ADT is almost medieval in its effects. Actually, ADT doesnt really attack PC, it starves PC while creating side serious effects. . Perhaps something along the lines of Lutecium is the fuutre.
I'm on ADT and had very minimal side effects not everyone has a problem so don't put it down
Can you please define minimal? At what age you started?
sounds like taking ADT is NOT worth living longer but in such a miserable existence. Quality over quantity of life.
There is no standard regarding how men react to ADT. Some are horribly miserable...others have little impact. Go into ADT treatment having lost as much fat as possible and in as great a physical shape as possible with an emphasis on muscle development.
Over 10 years past diagnosis, I'm on permanent ADT due to biochemical recurrence of my G9 5+4 case. I also take estradiol to offset the side effects of having no testosterone. I feel GREAT, with an undetectable PSA. I have plenty of energy, a better memory than I have had in quite a while, no hot flashes, bone density that has returned to normal.
Yes, I developed gyno too, but I don't care. Living well, so that minor physical problem is more than acceptable. I am FAR from "miserable"! I'm celebrating the gift of every single day! For some, reframing the problem can help deal with it.
I agree.
I agree as well.
Been fighting stage 4 for about 3 years. I take drug holidays for 1-2 months about every 6 months. For me, life is just not worth living after 3-4 months at zero testosterone. I get all the discussed side effects to the point I'm just waiting for death and hoping it comes soon. After 30 days of testosterone of 250 or more, I'm planing next years garden and vacations. My doctor says " you'll live longer if you stay on the drug". I say, "but I don't want to live longer". We finally came to an agreement: I take the drugs until I yearn for death and stop until want to live.