If you are on ADT or know many men who have been on ADT, you know that there is great variation in how easy it is to tolerate ADT. Some men report few side effects and little bother. Others report being overwhelmed by the side effects and look forward to a time when they might have their testosterone back in the normal range for males.
But what accounts for this diversity in distress from ADT? A dozen researchers, mostly based in the USA, teamed up to find out.
The researchers collected a wealth of psychological data on close to 200 men on ADT at baseline, and again at 6- and 12-month follow-ups.
Three distinct patient profiles emerged from the statistical analyses. Men with “high symptom burden” were younger and exhibited higher “levels of depression, stress, cancer-specific distress, and anxiety” at the start of the study. These men often had more advanced symptomatic disease. They also reported worse hormonal symptoms, such as hot flashes, as well as urinary dysfunction, a high degree of sexual bother, and more physical pain compared to the other two groups.
The second group was labeled as a “high sexual bother” group because their distress was focused foremost on sexual dysfunction. Lastly, about half the men were in a "low symptom burden" category and reported fewer symptoms related to hormonal and urinary symptoms, sexual function and pain.
Men with high symptom burden demonstrated significant reductions in anxiety, depression, and cancer-specific distress as well as increased emotional well-being over time.
The authors suggested that men who had greater social support and self-efficacy had better symptom management.
As proposed by the authors, these patient profiles might be clinically useful for the preemptive identification of the subset of men who are most likely to need psychosocial support to manage ADT side effects.
It is already known that younger men are more likely to be bothered by hot flashes. If they also have urinary problems, such as symptoms related to previous cancer treatments, and have symptomatic metastatic disease, ADT side effects are likely to be particularly burdensome.
Maybe the actual article talks about it, but your T level before starting ADT is likely a big factor. I think older men are (in general) less affected because they likely start with lower testosterone than younger men.
Such as the very few hours doctors spend on the importance of diet during their education. Most are ignorant when nutrition is inquired about---or --as one once told me, the McDonald's menu supplies all the nutrition needed for health. Or---studies show this supplement or herb or food does nothing --of course not! Our diets are composed of many foods for a reason. Synergy is important.
I started ADT at age 63. My T level was 701. Stage 4 now, metastatic to my lungs. ADT for 2 years+ and T level was non existent. ADT just ate me up. Last 2 years on ADT vacation. My last T count 601 (68 years old) Still have incredible issues with pain and neropothy. For me your synopsis of low T relative to age and effect doesn't apply. Either using ADT or not, T-level none or at a high level ADT hasn't been friendly to me..
There’s also some hidden SE’s beyond those noticeable on the surface, such as bone loss, lengthened QT interval, and NAFLD, all of which I had from only 18 months on ADT.
Lengthened QT interval speaks to abnormalities in the cardiac PQRST train …. All the peaks, bumps and valleys in the cardiac electrical signals string have names. Its called the QRS train. On my home blue tooth Kardia ekg device , my wife has a powerful peaks , well defined …textbook QRS train. On the same device, my adt altered QRS train looks nearly unrecognizable … like chicken scratch. And is 1/3 the amplitude of wifey’s signal . Cardiac issues are common with a lot of us ADT guys.
Notice my poorly formed qrs train , low amplitude and a quite noticeable bundle branch block indicated in the avl lead. There are zillions more involved here. In this guys report “ lengthen QT interval “ says the timing space between the Qand T peaks are abnormal …longer than they should be.
Yowzer. Well at least your heart rate was 76 bpm. That's about the only good out of that print out. Hmmmm. Although I have no experience.
The guys I encountered as a Corpsman didnt have cardio issues. Too young. I encountered a guy with a pulse of 47. Have never forgot. Freaked me out. He consulted me. "I'm a runner". lol.
I‘m running since I was 19, also marathons. Today I run 8-12 kilometers. / day. My pulse in the morning is always below 50, sometimes close to 40. I‘m on iADT since 2017 with Lupron with a few side effects. Also include weight lifting and WFPBD (whole food plant based diet) - no sugars, no oils, no alcohol).
CAMPSOUPS wrote --- " Yowzer. Well at least your heart rate was 76 bpm. That's about the only good out of that print out. Hmmmm. Although I have no experience.
The guys I encountered as a Corpsman didnt have cardio issues. Too young. I encountered a guy with a pulse of 47. Have never forgot. Freaked me out. He consulted me. "I'm a runner". lol."
2015 - GL10 - an almost 65yo endurance cyclist said NO to ADT and went with the bilateral Orchiectomy. Had to have a pre-Op check over and got hooked up to the ECG my pulse was 32bpm. Nurse said "Get up and move around because we need a higher pulse for the recording."
my “ at rest “ heart rate is generally in the high 50s, or low 60s ( 63 bpm right now ) … but my low rate isn’t from being well conditioned. Its from all the cardiac drugs I take to counteract the effects of ADT and other medical issues like high BP.
it’s called a Kardia , they are on Amazon… $80 for a single channel and about $13O for the one you see here.
You can go to your walk in hospital care provider ekg clinic and get a ekg test done and they will read it for your record. Then go home and run your Kardia, it stores all your tests. Check your ekg from time to time for changes from the ADT drugs or other reasons and keep out ahead of potential problems or have some idea of the direction cancer is headed.
If something changes you can send a photo of the screen to your GP to ask about it.
Darned Xtandi alone (well I had and orchi) made me complete invalid.... Half dose , 80 mg let me get my life back.. also held aPca back for over 3 years. Now half way through # 6 and about out of treatments. BAT under way....
I don't really have to tell you I'm with treedown on that.
Glad this post came along so you could let that out. Its been a couple years since you spelled it out (I was in a rabbit hole looking for something on the forum and ran into some old post/replies of yours a week or so ago lol).
I think guys newer to here that havent heard that from you kinda need to.
I agree with all the comments and would add that the best way to stave off cognitive impairment from ADT is through mental exercise, specifically reading. Set aside several hours a day to read, and not just internet research. Read books...novels, non-fiction, biographies...whatever you’re into.
I agree, Coco and I will read to each other at breakfast ( non-Fiction) on weekends and when ever she has the time. We have a shared curiosity, we have both been Life Long Learners.
I haven’t met many other ppl who were dx stage 4 in their 40’s, but I can confirm those results from my own experience for sure. My MO said I was an outlier and most patients tolerate ADT very well. They never baselined my T at dx, so I don’t know how much of a fall off I undertook. Now age 50, I still get life stopping hot flashes every hour. The psychological affects almost did me in, thankfully I found an antidepressant that worked. (Zoloft). My second opinion oncologist said my body is screaming for testosterone and eventually it will give up and adjust. 2 years in and I’m losing patience with waiting so I just started estrogen gel (suggested from this group). Praying that this will finally give me some QOL.
I’ve always been a gym rat, so ramping up the exercise wasn’t a big leap for me. The first year I put on 20lbs. I fell into a pretty impactful depression and didn’t eat much. I went from 225 to 180lb. I got as low as 167lb, muscle mass seamed to disintegrate overnight. I follow a DASH diet (cardiovascular diet) and I consider myself in the best shape of my life. Despite all this, my ADT symptoms remain. I’m no longer on lupron, just zytiga/prednisone. My T is still undetectable (been off luprin now for 5mo) The only thing I can testify to is the degree of the hot flashes are less. (No nausea). The overload of sweat remains the same and I don’t notice much a difference in duration. (3-5min on avg.).
I’ve noticed that stress is the biggest factor/trigger and I’ve concentrated the majority of my effort on coping techniques, meditation, psychedelics, anything that helps me better embrace these SE’s instead of fighting it. I remind myself if the story of the man who survived the open ocean… when asked how he survived he said: “when the waves went up, so did I, when the waves went down, so did I.”
Thank you for this post. I don’t think your polluting the forum. Keep up the good work. God bless.
well I think I can address one more aspect of ADT side effects that could contribute on the level of the ekg info. This one related , somewhat, to my particular regimen of Lupron Xtandi Zometa.
This part gets iffy because some of this can be directly related to old age. I think I’d say that this is a direct result of ADT but could be natural geriatric issues , possibly exacerbated the strain and cell influence of ADT drugs. In this case Xtandi which can permeate the blood brain barrier.
Anyway , I’ve had the hissing noise in my ears for a couple years , now I have the high pitched metallic ringing ( ? ) that comes and goes …it’s infrequent. More apropos is the occurrence of TIA ( transit ischemic attacks ) which seem - feel like mini strokes but leave no damage in the brain when looked with a cat scan. Neuropathy . Balance issues, trouble with low level cognitive thinking , serious near term memory loss that catches back up fairly quickly … some other things that my NT memory loss prevents me from accessing instantly yayahahahaya.
Pretty much everything mentioned in the above paragraph is attributed to “ small vessel white matter ischemic attack “ which is damage in your brain in the white matter that connects your brain to everything else. This is the iffy part. It’s quite common , ordinary even, for older folks to have small vessel white matter ischemic damage. I think that my ADT has either directly caused all symptoms mentioned above or exacerbated them strongly. Just IMHO but there is very solid medical scientific study that supports this.
I’ve attached a photo of what a cat scan of the small vessel white matter ischemic brain damage ( not mine but nearly identical , don’t have my copy yet ) looks like. Mine would be someplace between the left ( mild ) the middle one ( moderate ) , closer to mild.
Anyway, this is another aspect of ADT cancer treatment , things are far from what they were “ up there “ yayahahahaya.
Photo of cat scan showing small vessel white matter ischemic brain damage
I think your statement should be amplified upon a bit. I think your post was excellent because it provided an opportunity to air out - spell out issues that are almost never talked about in much detail. To other guys on ADT , this info has the potential to be invaluable. Of course everyone is different, but I’ll bet much posted in your thread hit almost everyone on ADT. Lots of other things…like ADT Zombie…for example and others could have been aired but I IMHO , you elicited really great info out of numerous responders. Good work buddy. Both group members and the research data divers will appreciate what you have done.
It was rewarding to see and hear from posters that seldom post, as usual I learned some new things.
Wish you had not taken down your "life" post and your bong/shrooms post as I thought they were important for others to see. It ain't all peaches and cream but it is definitely about one's attitude in the face of hardship.
ooooops about taking down those two posts. Sorry about that.
Sometimes it’s because I feel like there is too much personal stuff and others I do out of respect for Darryl and others here …. Cleaning up some things to make my posts more pure / apropos for the commercial data divers - researchers that comb the site.
Scout, Have you read the entire article ? Thinking about purchasing it if you think it's worth it. I've asked two very good Onco's if there was a way to predict ADT's side effects on a patient base on their biological profile and neither gave me any kind of definitive answer.
Im highly doubtful that "psychosocial support" wouldnt have done squat to mitigate the cardio toxicities and cognitive side effect I have experienced with various ADT drugs..... but its a nice thought
With all due respect, the level of 'health' information and feedback from MO's or MD's in general is disappointing and spartan. This has been frustrated further by the witness of CV19 narratives over last two years, I mean did ANY of the 'health' officials you listened to ever suggest Vitamin D or exercise as a preventative? Just speaks to one being their own advocates for sure, but again ... disappointing. Whole health information from any one medical faction just simply does not exist.
I’m 64 yo and I have recently diagnosed metastatic prostate cancer after RP in January. I’m on triple therapy including Eligard and Nubeqa. Testosterone level now undetectable. The only side effect I am seeing are hot flashes especially at night. I would call this annoying but not horrible. My cancer center suggested black cohosh to help with the hot flashes which I am doing. I also have become skilled at adjusting my HVAC temp, using my ceiling fans, and wearing the right clothing.
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