In 2015, I quit ADT 12 months into a 24 month sentence because I couldn't stand it any longer. PSA rising 4 years later. Terrified. Looking for advice.
To elaborate:
The side effects: fatigue, hot flashes, sexlessness, mental fog, aches, and depression became overwhelming at about the 8 month mark. It was as if the ADT had chemically neutralized my capacity to enjoy any aspect of life, and misery was all that was left. I'd sit around and cry throughout the day, hoping for a lethal car accident or to die in my sleep.
I quit 12 months into a 24 month sentence, because I couldn't stand it any longer; I felt like I was being tortured.
11 months after I quit I was finally able to get on antidepressants, and I felt much better, though I'm not sure this was due to the drugs or the recovery of my T.
I'm willing to take a huge risk to avoid having to repeat this experience, especially because a recurrence is normally met with a life sentence of ADT. I will not kill myself, because I would never do that to my loved ones, but I'm terrified of living the rest of my life in complete misery, knowing that I will never feel good again; I can't imagine that hopelessness.
I've heard that transdermal estradiol is an alternative to Lupron, but my medical onc says it's dangerous. Can anyone weigh in on that?
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Horse12888
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Sorry; I should have been more specific. I'll try to copy what I'm about to say and add it to the original post.
The side effects: fatigue, hot flashes, sexlessness, mental fog, aches, and depression became overwhelming at about the 8 month mark. It was as if the ADT had chemically neutralized my capacity to enjoy any aspect of life, and misery was all that was left. I'd sit around and cry throughout the day, hoping for a lethal car accident or to die in my sleep.
I quit 12 months into a 24 month sentence, because I couldn't stand it any longer; I felt like I was being tortured.
11 months after I quit I was finally able to get on antidepressants, and I felt much better, though I'm not sure this was due to the drugs or the recovery of my T.
I'm willing to take a huge risk to avoid having to repeat this experience, especially because a recurrence is normally met with a life sentence of ADT. I will not kill myself, because I would never do that to my loved ones, but I'm terrified of living the rest of my life in complete misery, knowing that I will never feel good again; I can't imagine that hopelessness.
As someone who has already experienced depression, this is exactly what I fear and why I have delayed ADT. They want to make me feel even WORSE than what I've already experienced? Uh... no thanks. I almost feel like I'd stand a better chance with the untreated PC.
I have been on ADT for almost 5- 1/2 years and still <0.02 psa in other words undetectable. Yes, the first couple of years were tough but now I hardly notice it's side effects. I work out and are full of energy and most importantly I am STILL ALIVE. Don't be afraid, it will become the new normal. The alternative is much worse
It's dangerous? You may grow breasts. In certain bars, that could prove dangerous, I guess..
As well as an alternative to ADT, transdermal estradiol is an alternative to ORAL estradiol, and THAT is proven dangerous. I don't know where transdermal estradiol has been proven dangerous in studies.... ask your MO for those studies, and ask if he is familiar with all the studies related to the PATCH arm of the STAMPEDE trials in the UK.
The PATCH data has been coming in for over a decade and is overwhelmingly positive. You might remind your MO that ADT itself has been PROVEN dangerous with regard to bone health and other issues related to low T and low E2. The fact that it is the preferred standard of care does NOT mean it is superior beyond doubt in terms of safety OR of effectiveness. All it means is that it is preferred, by consensus.
(Consider that RP surgery itself became the "gold standard" without true scientific proof, much in the same way that certain knee surgeries became the standard of care, only later to be shown no more effective that fake placebo surgeries.)
The other alternative to Lupron that should have fewer side effects is to do an anti-androgen (like Casodex) as monotherapy. Also possible is a return to ADT but with a low-dose estrogen patch to help reduce symptoms.
If you find an MO (either your current one or a new one) that agrees to try transdermal estradiol as a monotherapy, please let me know!
I thought it was just me ? I’ve been on constant adt 5 yrs this month. It was a tuff transition . The first two years were the worst for me. Because I had tubes and a foley and couldn’t really lift weights . Only ten pounds. I lost muscle , then bone .. my MO doesn’t know what to do with me now. He says” no one does” I chopped off my nuts . Dreaming to return to t is just that for me right now. So I take 4 little pink pills per day that stop adrenal production of t and keep me at zero.. I understand the dislike for adt ....but it can keep us alive...However , it can’t eat our souls up. Unless we let it .. there is not a medical solution for us. It’s about extending life with alterations .... Might I ask how old you are ? I started at 53 now 58 .. I don’t know if you recall the movie “ The man called horse” ? That man was a bad ass. Swung from talons in his flesh .. I admired that as a boy..true manly suffering comes with the turf of apc ..for me adt is a trade off and proves how much that I want to live .. I pray for different approach or a cure in the future. But we’ve got to be here in order to see it ..
As previously mentioned there is Bicalutamide monotherapy. Eventually, this drug will start to feed the cancer so you would need to stop then. Enzalutamide (Xtandi) monotherapy has been tried in clinical trials and found to be very effective with hormone sensitive men. This is not how it is normally prescribed though, so might be a challenge to get a prescription. Both of these drugs block the androgen receptors but do not lower testosterone.
Before you do that, look into this --- low dose chemo then continuous super physiologic testosterone with Dr. Bob Leibowitz -- when you are done with the chemo you stop ADT altogether and go on continuous super physiologic testosterone.
I hit a brick wall of anxiety and depression in 2008 when I had my first post surgery recurrence of detectable PSA. Anti-depressant has kept the anxiety and depression under control since then.
My first and only Lupron experience was in 2017 when I had my second recurrence of PSA. My oncologist let me out of that 18 month sentence at 9 months when I pleaded for mercy after finishing my taxotere protocol and my second radiation protocol.
My antidepressant kept me from depression or anxiety throughout my Lupron time, but I had about all of the other symptoms you describe, in addition to picking up 20 lbs of fat that is really difficult to shed.
Maybe I missed it however what is your Gleason score and do you have any distant metastases? I've been using transdermal Estriadol gel for almost a year it has completed and absolutely improved my quality of life. My Psa is down to 0.11 after dx 2017 425. I have just recently decided to stop the Leuprolide injections... (3 monthly ones) I've been 6 months with only the gel now. I didn't grow breasts and none of the awfully debilitating hot flushes, depression, mood swings etc.
He is totally misinformed! Get a new one. Tell him to look at the PATCH trial which has been going on in the U.K. for many years. Estradiol patches are not like DES which was oral Estrogen and did have higher incidence of cardiovascular issues.
I’ve been using the patches for over a year and they’re so much better than Lupron etc. None of the side effects except man boobs and better for bones and heart.
I am so sorry that you've gone through such hell. I can identify with everything you wrote; I experienced it all.
1 month of Firmagon. Three 3 month duration injections of Lupron during IMRT and brachyboost. I thought I'd jump out of my skin with the hot flashes, fatigue, depression, despair and suicidal thoughts. Oh, add in, 12-15lb wt gain, no interest in sex at all, genital atrophy, joint pain, swollen ankles, bone density change, increase BP, weird blood work, and so on.
For whatever it's worth, the only thing that seemed to help me at all was exercise and I'm no gym bunny (more of a gym slug). Machines and elliptical 5 times a wk. I had to drag my sorry ass to the gym. Afterwards, exhaustion and a 2 hr nap. Unfortunately, I cannot see any improvement in body at all; perhaps all I did was make it less bad than without exercise. Dunno. I'm still going hoping that, just perhaps, as the T increases, the exercise will improve my strength and muscle mass. But at 70 yrs of age...
Despite my reading/research, I had no idea of how devastating Lupron would be. And, the return to "normal" pre-treatment T level has taken months and months (my last injection was in May 2019, and in theory, the Lupron should have begun to wear off in August). That's 7 mos ago. Doc said it might take another 3-9 mos. I can feel changes because of the returning T but it's been a hellish experience.
Bottom line: really sorry Horse. Good luck to you.
Yes. As my T returned, I felt better. However, I assumed (stupidly) that, as my T returned, I would lose wt and other side effects - such as genital atrophy - would improve. Nope. It's been 4 yrs and the wt remains, man boobs no less, and joint discomfort continues. Due to getting older? Dunno. But certainly ADT played a part. Btw, my has always been low (225ish). Discussed T replacement therapy with docs. Apparently not worth the risk but the research is limited.
I'm very grateful to you all for your advice, sympathy and support.
I should have added my particulars: In 2014, initial PSA 11, G4+5=9, ECE, seminal invasion. Had RP, IMRT, 12 mos ADT (quit halfway through 24-mo sentence). PSA undetectable until July 2018. Now 0.16
Based on all this, I'm thinking about rolling with the estradiol, because given my G9, I don't want to take risks, and things like bicalutimide monotherapy and high-dose T strike me as risky. If estradiol castrates me without making me wish I didn't have any loved ones so I could blow my brains out, that strikes me as a great plan.
Sorry guys I took a different approach...... knowing full-well if one succumbs to adversity with a “woe is me”, then the battle is lost.
It’s real simple, SOC utilizes the Lupron/Eligard family of hormonal therapy. Without, you will die. That is your choice and I would never criticize your decision. Stay positive; shun negativity. If you can not do that on your, then please seek mental health counseling.
The old adage that misery loves company applies. In this case, it is truly a life or death decision. Your “company” will not be with you at the end........ then all you have left is a love for misery.
Prostate cancer is a disease. Disease does not destroy self-worth, only your mind can take self-worth away. I wear my tits as a badge of honor....... means that 15 years ago I was treated for metastatic prostate cancer. At 73, I enjoy spending time with friends and family; and still take time to remember friendships of fifty years of those who let their minds win over their disease.
For me, diagnosed with PCa at 57 was tough, but metastatic at 58...... the numbers back then were simple, get palliative treatment and expect 2-4 years, maybe five to live. If I went down, it would not be because I rolled over feeling sorry for myself. I had my first Lupron injection and immediate undertook chemotherapy along with the Lupron/Eligard.
Our Creator did not promise a life of party, but instead provided you with a brain and the will to fight and overcome adversity. To me, there was no difference, Praying during “incomings” during war or Praying during disease in later life, they were both hazardous to my life and the effect on my family.
Please re-adjust your priories in life, or, you will not be around to enjoy your grandchildren.
I write this sitting on my patio with a second cup of coffee and my Lab, Luke; both awaiting the arrival of my grand daughter. Keep killing the bastards.
Sometimes hard to stay positive, but have youngest grand son (4) staying with us for next 4 months and middle grand daughter (10) from different daughter down for the day. Crazy 8's and slapjack at table after school numbers lesson. Feeding the fire after hauling firewood to porch yesterday for todays snow and cold.
Felling sorry for myself, not since first Lupron shot and talking to my 3 brothers. They stay more worried than me. We are in our 70's except for youngest and doing well.
I was on triple blockade ADT (Lupron, Casodex and Avodart) for 18 months. At around 8--12 months, I begged by treatment clinic for help with the fatigue and cognitive issues. I knew that the sex thing was gone for a while. They, and members here advised me to get on a resistance training (weights) and aerobic exercise regimen. I did that, and there was a huge improvement. You need to do that, especially when you feel the crappiest. Also, you can take creatine, .5g twice a day, to help with the cognitive and energy stuff. That, and a heart healthy diet with de dcent sleep and rest is likely the best you can do.
Hi, I was diagnosed in Nov 2014, locally advanced, px 2 years ADT with radiotherapy x37. I quit ADT in Nov 15 with oncologist agreement because of side effects. My PSA has slowly risen but PET scan last July found nothing. I'm happy with my QOL and live for today. Que sera sera.
G9 diagnosis 2005. No local therapy nor systemic therapy of any kind until PSA and scans got away from me in mid2017.
Refused ADT and chemo. Was able to get a script for Xtandi monotherapy. PSA fell from about 375 to 3 in very few months. Stayed there to where I had 15 months invested in this strategy and began to climb. Major SE was fatigue. All sexual systems were normal. T climbed from 400 to mid nine hundreds.
Tried chemo(both Taxotere and cabazitaxal) to zero success,,,,both to response at all. A complete waste of time with a raft of misery as a bonus.
Finally submitted to 1/2 monthly dose of Lupron. T fell to 8 over next couple of months. However PSA continued to rapidly climb. Refused any more injections. PSA back to mid-300’s
A couple of months of mono casodex,,,PSA fell by 70 percent instead of continuing to climb. Then it began climb again
Tried 3 sessions of SBRT to find any complimentary abscopal effect. Have had no follow up scans so do not know if any effect. However as noted below, ALK continues its relentless climb
Currently on a third(third is a typo error, edited to read 2nd generation)Anti-androgen inhibitor with daily dose of Indomethicin to reset resistance. So far is working,,,last test PSA down by 25 percent instead of rising by Normal 50 percent.
Incidentally am also thru 4th infusion of Keytruda. So is it the anti-androgen/Indomethicin or is Keytruda that is giving the response??? However first 2 months on Keytruda alone PSA continued rapid climb. Only with current both treatments am I witnessing a substantial decline in PSA.
Blood counts for hemoglobin and red blood cells are still below normal. ALK is very high at 370. Anemia caused fatigue likely from low blood counts is only major PITA.
MO’s have no ideas as what is going on. 😴. Just taking one day at a time. No bone pains out of normal for a man due to turn 80 in 3 months. 😇
Your post has meant the world to me because it is exactly why I have never agreed to having the Lupron injection (4 months)---I do not want the side effects, any of them, since my life has been relatively decent without Lupron. Diagnosed in 2005 age 70, radiation 2008 and each year since two docs have wanted me on it. PSA in December 10.1 same as in March 2019--next appointment April 13. Lost my wife 3 years ago; live alone whether in FL or ME. No daughters, two remaining sons each of whom have busy lives and I only want to bother them when I think I really should. I do not recall how I found this site, but it has been a revelation for me---so much APC and treatments. I wish you the best of luck for whatever decision you make. God Bless.
I have come to believe that there is no good answer to this. I certainly don't want to dissuade people from getting a treatment that could save their lives. In particular, people with recurrences and escalating PSA who deny all forms of treatment are very likely to regret it deeply.
For reason no one quite understands, my PSA is still under 0.2 almost 2 full years after it became detectable again after RP and IMRT. If it starts accelerating and the Axumin scan/radiation doesn't work, I'm going to try ADT via high-dose transdermal estradiol, which, while it's not FDA approved, is very well accepted elsewhere in the world, and is said to have a far better SE profile.
I hated my life on ADT via Lupron, but that level of suffering is a piece of cake compared to symptomatic metastatic PCa. There's a difference between simple misery and searing pain.
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