Please reply with your helpful hints and suggestions for a better quality of life while on Androgen Deprivation Therapy (hormone therapy)
It's OK to re-post replies you previously made. I want this to be comprehensive. I think it will be great to have a full community response to this...I'll pin the post as a resource for us all. Thanks!
Below are my husband's strategies - 6 years in:
- Exercise of any kind, yoga, weights
- Infrared sauna when he is too low energy for exercise and even when he does, sweating it out really seems to help.
- CBD oil and also marijuana. He has a medical marijuana license for NY but the weed butter a friend's son makes for him works the best for mood and sleep.
- In terms of diet, lots of green juice, a Mediterranean diet more or less
- meditation
Perfect
The best advice I can share is what my urologist continues to prescribe to combat those hot flashes and sweats: 75-mg venlafaxine. This works 90% of the time for me. This is an anti-depressant with nasty withdrawal side effects so either stay on this or be very careful when coming off it.
I'll be on it for life.
Tried it and gave it up. Ineffective and with side effects.
Vivelle estrogen patches
Low dose estrogen replacement patch. I use Climara 0.25 mg/day weekly patches. My MO concurred that they reduce ADT side effects and do not negate the therapeutic effects of ADT. I also discussed with a urologist and he came to the same conclusion.
And of course, exercise, exercise, and then exercise some more. If you can do weight-bearing exercises with heavy weights, great. If you can only walk or move your legs around, do it.
Also, relugolix (Orgovyx) is superior to Lupron. And there is no testosterone flare. Acts much faster also. But my MO said that some guys can handle Lupron better than relugolix. She thinks it is because relugolix acts quicker. Next time I see her I'll ask why they can't just titrate the drug. Titration isn't simple with GnRH agonists/antagonists but on the surface, it seems to me that you could get your testosterone to decrease a little slower by titration or perhaps using drug scheduling.
clinicaltrials.gov/ct2/show...
There are some that I understand use estrogen in the place of ADT for treatment of prostate cancer.
I should have mentioned that. I used 0.3-0.4 mg/day weekly Climara patches for ADT. My T was undetectable for 6 months. Side effects were gyno, loss of muscle, and loss of libido. My bone mass increased a little during ADT and my blood pressure went down some (might have been partly due to the hours of cardio/day that I did).
This isn't mainstream but my MO seems to think it is ok for me: I am currently doing a BAT program. I add 5 mg or so of a SARM into the ADT phase. That stops the muscle loss and doesn't seem to interfere with the PSA reduction. But this is very experimental and risky. I'm still working on which ones help the most and how high of a dose I can use (I used 35 mg/day for a bit to see how it would work with my PSA - PSA stayed at zero).
I've posted many times about my experience with Firmagon and Eligar/Lupron. For me, devastating (although I am getting "use to" it. Who'd da thunk it?) A suggestion for all: read "Androgen Deprivation Therapy: A Guide for Prostate Cancer Patients and their Loved Ones." I found it to be an excellent guide on what to expect (I learned more from this book than I did from any of the docs I saw) and it provides some great coping strategies for what can be an awful experience (it was for me).
My only suggestion is to exercise as much as you can (gym, walks, bike, whatever you can do.) I'm hardly a gym rat (more like gym slug) but I keep at it and, although I don't think it's done anything re my physical appearance (I put on more than 10 lbs - god, I hope it disappears after the Lupron wears off), it has helped with mood swings and depression. And, it gives me a sense of control: at least I'm doing SOMETHING to fight back.
Good luck to all.
EdinBaltimore
I have been on Lupron continuously for 9 years - started it after 2nd year "failure" of radical retropubic prostatectomy and then salvage radiation. It has been my constant companion through all subsequent therapies. So much good has happened in these nine years, so much watching children getting established in their lives and careers as well as watching grandchildren grow, so many travels, trips, and laughs with my wife, so much living done. I grumble a bit about ADT and the changes it has slammed on me, but I am grateful as well. It is a minor price for rich life.
I had no idea how much a loss of testosterone would change my relationship with the world. I was never a "jock" or a "macho" kind of guy, but I quickly realized that testosterone must have bathed every cell in my body. Its loss seemed to effect the ways I thought, the ways I felt, the ways I interacted with life. I am still me at center, but some of those testosterone "filters" have been removed.
I have been sadly amazed at how little interest any of my oncologists have shown in Lupron's effects on quality of life. One of them flatly told me that that was not his job; his job was to fight the cancer and I should check with my primary care physician about managing the side effects. While the others have not been as directly crass, they have shown little interest other than insuring that I remained on Lupron.
My hot flashes have been tolerable and have never been debilitating. While there are many each day, I hardly notice them. The waves of heat come, pass over, and go. Sometimes they wake me up at night; my skin can be damp, but I have never soaked the sheets. These are small bothers, for me, but they are not as dangerous as the more subtle side effects.
Of danger, of course, is the massive change to metabolism. The loss of testosterone seems to change how one uses energy, how one converts calories to energy or stores them as fat. The tendency to visceral fat accumulation multiplies, and that is not a good thing for appearance, for general health, or for stopping CaP's spread. Eat well; eat healthy; eat less. I was very fotunate early on to have a compassionate PCP diagnose me with (pre) metabolic syndrome, which allowed him to Rx me a full dose of METFORMIN. I believe this has helped me metabolically as well as suppressing my cancer in a number of ways. There have been enough articles on this site to encourage its use among men with advanced CaP, and it has kept my body mass below 30 even after 9 years on this life-altering drug.
Exercise is critical: clear the mind, release endorphins, use the muscles, burn calories, pump the blood. I do 60 minutes on a home elliptical machine most every day I am home (level 6 of 10), and I think that has helped to keep me alive.
What annoys me the most is the growth of breasts. T-shirts get caught above them when slipping them on; water drips differently in the shower; they are tender at times and send out little "hurt" signals for no good reason. That's all tolerable. What effects life, however, is my staying away from the beach or local pools; it's in NOT removing my shirt when working in the yard or anywhere else; it's in coming up with excuses to not hot tub with the grandchildren (who don't need to be exposed to this hermaphrodite!). I have a wealthy acquaintance on Lupron who paid for his own mastectomy; I can understand why.
Had I known I would be alive 9 years later I would have seriously considered castration instead of Lupron. While ADT is surgically less invasive, I can only wonder about its constant presence in my system and constant "fooling" of my pituitary gland. My testis have virtually disappeared anyway.
There's more that could be said. ADT is life changing. But I say that in the context of continuing life! We learn to take the bad with the good, to not be passive in this but counter it with living, with living wisely, with enjoying the life we've been given, and with being Grateful.
RJ, very good all round post. You have 9 years experience and I have four months, so I have no idea what the future will hold for me but right now, I think that you are so right when you say that testosterone “bathed every cell”. So true, especially those that create memories in general and those memories (that create “you” in particular). More than 75 years ago Donald Overton, then at McGill University, published papers about “state dependent learning”. Basically what he found was that a response learned in the presence of some chemicals, could not be recalled, in the absence of those chemicals.
Well said! I’m trying
For me, the hot flashes were bad. I am on Venlafaxine, which knocked them down about 50%, but still get quite a few. Exercise helps the general feel of wellness and helps with energy level. I also found a machine called bed jet that blows air between your sheets to help keep you cooler and dryer which helps me stay asleep longer. You can control the volume of air as well as the temperature with the remote or your phone. Leaving the ceiling fan on helps keep my head cool. I was sleeping on a towel and waking up wet and clammy before getting this thing. Now the towel is gone and I wake up dry and comfortable. Still have to get up about three times to pee though. At least I can go right back to sleep now.
Everyone is different, but this is what makes it at least tolerable for me. Good luck and good health to everyone.
Quality of life is in my experience (diagosed 2012 as Gl 8, metastatic, stage 4, only therapy to date is ADT) directly related to feeling I have managed my complementary medicine strategy well, that is, the selected supplements combined with ADT are working to suppress the cancer. I have used Eligard, Casodex, and now Lupron only since 2016.
These two posts convey the important facts of my regimen. Message me with your questions if I can be of help.
Get one of your docs to write a prescription for 20 mg sildenafil every night. It won't stop the testicles from shrinking, and it won't restore libido, but it will restore nocturnal erections, which will keep the penis healthy and prevent leaky scar tissue from causing permanent impotence. Once you get off ADT and testosterone levels return to normal, you can stop the sildenafil.
Sildenafil is off patent in this dose (the usual dose for ED is 50-100 mg) and quite inexpensive. A month's supply shipped to my door is about $23.
Could you tell us the name of the supplier?
There are many, I use HealthWarehouse.com. NFI, just a satisfied customer.
Thank you
Look into new developments in intermittent ADT. Researchers at the Moffitt Cancer Center in Tampa are running several clinical trials that change the strategy of treatment. Instead of taking the maximum dose of e.g. Lupron, abiraterone, or doxetacel chemo, they try to manage the cancer as a chronic disease. In one trial they gave ADT plus abiraterone to men with advanced disease. The drugs would be stopped when PSA had dropped by 50%, the restarted when PSA rose to baseline. 4 of 18 men progressed (stopped responding to the drugs) but 14 men are still cycling. The longest has done 12 cycles in 4 years.
The control group, given ADT+abiraterone continuously, all progressed with an average time of 15 months. The average time to failure of the cycling group can't be determined, but it is at least 34 months.
Most men find that ADT fails, the average is about 2 years even though some go much longer. This strategy has the potential to extend the useful time of ADT, and gives the patient the major quality of life improvements associated with stopping ADT for a while.
See the descriptions of the clinical trials underway at Moffitt
clinicaltrials.gov/ct2/show...
clinicaltrials.gov/ct2/show...
Absolutely attend local support groups for personal experience for your evolving questions. Meet men who have been on ADT successfully for years.
Healthy diet/lifestyle changes allow your system to better cope with ADT changes.
Question everyone about everything.
Have some patience and reasonable expectations.
ADT affect EVERYONE somewhat differently.
2Dee
Are you on Angie's List?
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