I don’t post hugely here but occasionally. However I read many many posts and I want to thank everyone for their posts of knowledge and wisdom. Along those lines I would like to get a few opinions on taking an ADT break.
Gleason 9 in 2012. RP 2012. Mets to bone (femur, spine, frontal bone,etc) and many abdominal lymph’s affected. Solid Xtandi and Lupron for over three years now.
Undetectable PSA and clean scans every three months. I think they call it progression free survival. However, I feel like shit. Bad back pain in spite of lots of physical therapy, joint pain, muscle pain, terrible fatigue, weight gain, not to mention the anxiety/depressive factors as well. Along with brain fog and just general mental acuity this thing is really starting to get the best of me.
I’m not overlooking the fact I’m very lucky, or blessed, depending on your stance. But if I get clean scans/PSA again next month, April 22, considering taking a break from Lupron and Xtandi. Just want to feel good for a few months and get my head back, just maybe feel normal for a while. Thinking a 3/6 month break. I know my Onc at Mayo will not like it but will go along with it because he knows what us guys are going thru.
Thoughts on continuing or discontinuing? Am I crazy to do this? Take my medicine like a big boy or what ya think? BTW, I’m 54 years young, married for 30 years, started this at 46.
Many thanks, Johnny
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Survivor1965
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I certainly understand the frustration with long-term ADT. I'm experiencing most of what you are talking about.
And I don't think you are crazy for thinking about stopping it. But I think your expectations about feeling better are unrealistic. Most likely, your pain will get worse and any slow improvement from more testosterone will be offset by acceleration of the disease progression and then some.
You're right about your MO not going along with it. That's because he knows what's going to happen. I'm not sure what kind of quality of life you will have going forward, but I wouldn't being doing anything to make it worse.
I was fortunate to experience the hell of symptomatic, untreated PCa so I have a diiferent prospective than many others. There is no treatment side effects that I have experienced that even come close to how bad that was for me.
There seems to be a myth out there that stopping treatment will improve quality of life. I would be trying to figure out what is going on and possibly adding treatments, not stopping them. If i was in your situation, I would be looking to see if the cancer is progressing, then consider starting chemotherapy. I've been through it already and again, it nothing compared to cancer You would probably have a reduction in pain that would offset the side effects.
Hoping the best for you and good luck with your decision.
Thanks Greg. All great advice. I think I’ve had a few weak moments of self pity lately. Not even sure if I’m thinking right these days. I think I’m going to talk to Onc about palliative care.
I also want to respond to your comment on self-pity. It's not a virtue, and it's not productive, but it's hard for for most people to avoid, and ADT makes that almost impossible, because it's vicious spiral. You're crying for no good reason, so you look for something to cry about.
Next thing (this is what happened to me) you're sitting in front of your oncologist who asks you, "How are you doing?" I responded, "How the f*** do you think I'm doing? I just got the same punishment we inflict on rapists and child molesters, and I didn't do anything wrong. I feel like shit every second of every day. The ACLU is trying to ban chemical castration because it's tantamount to torture."
Jesus, you should have seen the look on his face as he scrambled (unsuccessfully for several seconds) to find words to frame a reply. If you've ever seen a dog choke on his food, that was close.
I've long since learned not to do that to myself, but, early-on, when it came to self-pity, I was an Olympic champion.
Most people hate ADT. I can certainly understand why.
But I love ADT because it rescued me from the pure hell I was in. Before I started treatment, I didn't know what was wrong with me, but I was 100% certain that whatever it was, it was killing me.
After my first Lupron shot, I could feel myself literally coming back to life, a little more each day. It felt like a miracle when I was essentially pain free after 3 weeks.
Yes it's been difficult, I won't lie. I really try to keep things in perspective and not complain. That's why I say I was fortunate to have that experience.
Oh, I totally understand, and your message was sobering. This is what makes ADT such an often-talked-about topic.
For asymptomatic men, it's often a life ruiner; it's the (at least temporary) end of their feeling good, mentally and physically, their sex lives, and in many cases their marriages. For symptomatic men, it's a Godsend. I completely get that.
I learned a lot in just a few seconds reading your post.
My journey has not been as long "yet" as yours so not sure how in 4 more years I will handle this disease and the treatments but I must second the most recent comment by gregg57. Unfortunately the 4-6 month time line will not change many of the treatment/cancer related issues. I would look for a very good palliative care doc to help with some of the pain and this (removing pain) just may help with some of the stress related issues. Asking for help is never easy for us guys but please continue to do just that... even if at times the information returned is not what you are looking for.... sorry your having to deal with this disease!
Max, I agree with the general consensus of the group. Stay the course,l in spite of the side effects, it’s still better than the monster. I have some difficult conversations ahead of me with my Onc next month.
3-6 months may not be long enough for your T levels to recover after 3 years of ADT to the point that you might notice a difference. Also this may not be the best time:
Your right TA, I probably wouldn’t notice much if any change in a few short months, considering how long I’ve been on the ADT. But it’s a fine line some days between living and living in pain. I think I’m starting to feel sorry for myself and I hate it.
I appreciate your reply, this time and every other post I’ve read from you. I tell my wife some of the guys on here, like you, seem more knowledgeable than the drs.
I've had orchiectomy, so zero T. Xtandi may be the culprit. Once I cut to half dose I got to undetectable with QOL back. Full Xtandi (160 mg) made me an invalid.
Gonna reply in greater detail to all the wonderful reply’s, will take a day to process all of it. Can’t say how much I appreciate the responses. But a quick reply on one question:
The patient is a concerned, pleasant 51-year-old man who returns with his wife and daughters to review recent imaging and labs and discuss plans for his continuing therapy.
Labs from March 23: PSA is less than 0.10, which is a decrease from 0.51 on December 30, 2016. Testosterone is less than 7.0. Liver function labs are within normal limits. Alkaline phosphatase is equal to 67. Potassium is equal to 4.7. CEA is equal to 1.7. LDH is equal to 216. Chromogranin A is equal to 48.
My experience with the ADT vacation is that it was a waste of time. I have the same MO as you (Gleason 9 and RP in 2012, etc., etc.) . All the ADT vacation did was start the beast up once again. My opinion: you should be on ADT "for life." And please live life to it's fullest! You CAN do this.
Thanks for your reply tallguy! I am trying to live life to the fullest and enjoy every day. It’s hard because I feel like I’ve had to reinvent myself and my life. The life I knew is gone and there this new one. And your right, they want me on ADT for the rest of my life. Instead of complaining I should be thankful for the great response to the meds.
You have gone 8 years with your bad diagnosis start. That's pretty incredible. I'm only just past 2 years (RALP, G9 multiple mets). I asked my MO about a vacation. He said with G9 & multiple mets it was a bad idea especially when I am running 28 months of <0.01. In other words, why mess with that? By the way, my lower back was killing me-pain down the leg. MRI showed severe spinal stenosis at L4/5. Physical therapy and exercise have helped immensely. Try Brain HQ for mental practice. Finally try exercise for fighting fatigue and watch comedy for endorphin release. Schitt's Creek for new, Stooges for old.
They’ve done MRIs on my back and so far no issues. But it sure hits like a bitch, every day. Getting worse. I wonder what the scans, mris will show next month. Maybe a change in my back/spine?? I do the gym 3 times a week but it’s more just maintenance I feel. Now of course they’re closed. But when I go I’m so tired for the rest of the day. Ok gonna go watch Three Stooges now 😎
Hey Johnny ! Wow 46 ! That was so young. 54 is still young . You’ve been thru hell. I’ve been clear over four years . You’ve been at this longer than I. I did orch so dreams of t for me would take t shots . My dr is scared to change anything .. On one hand t would be nice and getting back some of what we’ve lost would be great . On the other hand if the pc comes raging for us we would feel like fools. Everything is a trade off as you know. ....That’s such a cute face next to you there. Enjoy the quality time with the family . Be well 🤙🏽
Thanks Whimpy! I think your right, if a vacation costs valuable time I would regret it. My granddaughter is absolutely the Bomb. She lights up our world. Too bad we can’t see her fight now with this craziness but it will be over soon.
I see you are under Kwon at Mayo. He is an advocate of ADT vacations under certain circumstances. If he says absolutely not in your case, then I would defer to his greater knowledge.
I saw Eugene Kwon for four years in Rochester. We moved to Phoenix two years ago so now I see Dr. Alan Bryce at Phoenix Mayo. Kwon was a real character.
I understand that antidepressants don't work for everyone, but I think that's because certain drugs are useless to people with certain genetic make-ups. There's a DNA test available that will tell you which will work and which won't.
In the UK, they use high-dose transdermal estradiol to achieve castration, and it carries a far more tolerable profile of SEs. My MO strongly recommends against it, and says it's associated with heart attacks and blood clots, but I haven't been able to verify this, and, frankly, I don't believe it.
Even if I did, and the number is 5% (as he claims), I'd roll the dice and take a 1:20 chance every day of the week if it meant not feeling like shit for the rest of my life. Ironically, I was HOPING for a heart attack when I was on ADT.
Doctors, in general, see their job as keeping you alive, and care very little about what that live is like; they see QoL as someone else's concern. That's certainly the case with this particular MO.
You always have funny things to say! Great sense of humor. My granddaughter really is a gem. Funny she came along for me during this time when I/we needed something extra in our lives.
Thanks for your reply and many blessings to you John!
Thank you for your kind words.. As you know I fight the beast with laughter.... 1965 is a memorable year for me because of my 65 Corvette.... Unfortunately it didn't survive since it was stolen and never recovered. Your granddaughter looks very precious and may you hang around to see her children... Bless you all and give her the biggest hug and kiss just from me..... I love kids.... (hate grownups).....
Today, today. We only have today right Mr Survivor 1965? No one needs to tell us that, or where we'd be if the termites had gotten into us 40 or 50 years ago (dead in a short time)...still it's hard to address the ADT without facing down the risk of the famous intermittent thing.
Side effects! Some of us do well, like myself- I lift weights and otherwise exercise FAR more than I care to and it really helps I'm sure.
However, some like Mr Horse 12888 and yourself don't do as great. Do you lift? It's the best way to fight the sides I promise you.
I am hopeful-not expectant or confident that I will stay undetectable during and after my Lupron course is completed next year. Instead of expectations I try to prepare myself emotionally and spiritually for whatever happens if I get the dreaded BCR.
But in the end that's an impossible job. I can only get as close to that state of acceptance as I get. I won't truly know how well I'm doing at this until...the future arrives. And worrying about that can really mess with the present.
I'M NOT INVESTED IN ANYTHING THAT MESSES WITH THE PRESENT!
I hope you are able to take a nice long uneventful ADT vacation. But what I want for you every bit as much is to continue to roll with the punches expertly as you've been doing.
How do I know you've been doing that? The kid in the picture gave it away.
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