Thinking about forgoing all treatment. (Hormone vacation)

Todd,

I am OK with your plan if that's what you want to do, but I don't like the title of your thread very much. "Forgoing all treatment" doesn't sound like a vacation, it sounds like moving into a cave and putting your faith in some sort of pine needle smoothie miracle cure. It was a relief to open your thread and find out you are just talking about a "vacation" from treatment.

Interesting that you would post this, my Charlie asked his Dr this past week about taking a break from his treatment as well- lupron and xtandi. The answer was a big No, not a good move! His PSA this week was 2 which is the lowest it has ever been since this nightmare began almost two years ago. I think he is feeling the same as you Todd-tired of feeling crappy and unfortunately, unlike you, his libido and erectile function is null which plays a vital part of his wanting to get off the meds. I honestly think he could deal with the crappy feeling if his libido and function was better:-/ Like the others have said its for you and Mandy to decide. For us, I'm actually relieved that the Dr was rather blunt in saying no...I miss my old 'horny' Charlie but I love him, want him, and need him more than what he may or may not achieve from going off these meds. I know I would support him whatever he would decide-he knows better than I do how he feels. I'm just not ready to risk things getting worse:-/

Hi Todd,
I write this to you with your picture on a cd next to me. My bestfriend (husband) starts his Provenge journey on May 29. in Sacramento. Since joining Healingwell I have always looked for your posts. I have read your blog completely. I have been so interested in what you have to say and add because you started with such a high PSA like my husband, Rich. You also seem very knowledgable, and also have a love of life, just like Rich. He never complains, he just fights. His PSA went from 2.9 in Nov. 2011, to 790 in early 2014. My understanding is that once you have Stage IV you don't ever stop taking Lupron. I took it as a given. I would be interested in what anyone else has to say about this.

I too have wondered about Rich stopping treatments. He feels good right now, but his PSA is once again in double digits, and has been told it is time to do something else, so Friday morning he started Xtandi and like I said, Provenge the end of the month. My concern is that nothing seems to give that many more months to life expectancy, and I wonder if it is worth the side effects and time it takes out of each day. I am probably doing wishful thinking, because I am pretty certain, that without treatments he wouldn't be feeling as good as he does at this moment.

Todd, you have had some great success getting your PSA way down. What IF (btw, Rich hates what if's), but WHAT IF you success is tied to the Lupron, or one of the other treatments? If you choose to forgo treatment for awhile, do you think you will be stressed to constantly test for PSA? Would you lose sleep? What part of your success do you think came from the Provenge?

You Todd, are like a rockstar of the prostate cancer peeps here, and I think your success's are all our success's. I really want the best for you, and any thoughts you have on the above. I love my husband more than anything in this world, I love that his urologist is a quality of life doctor, but I don't like playing chess with my husband's life, and get so confused about all the treatments, but still feel like it would be irresponsible to not do them. I will be interested in what you decide, and more importantly how it goes for you.

No one fights alone! I am always sending out love and positive thoughts to everyone here. Deanna

Todd....first off...you are very lucky after 9 years of HT to be able to function sexually without ED Meds...I was good for 2 years of HT but after that I lost most of my function in that area...but I also didn't spare any nerves during IMRT.

I guess my question would be...if your sex life is that good as you say, QOL is amazing as you say and you are in no pain.....why would you want to stop a good thing? I guess you could say a G7 isn't taking as much a risk as G9 but Im not sure I'd be willing to chance that one....unless your treatment was really hindering your QOL but it seems it hasn't. I wanted to stop at least HT about a year ago but both my Drs. recommended against it....then again I was never below a PSA of 4 very long and have always had active cancer in me as I do now. Whatever you decide....best of luck to you.

I'm not understanding the why of your question? Oh I get this and that but its very difficult to change the new normal back to the old normal. the question you have to ask yourself is how bad is the new normal or put another way "are you feeling lucky". I or no one can answer that question. Just you! You want my opinion? If it ain't broke don't fix it. I would dig real hard into myself and brutally ask my self. Where and why has this thought appeared. I think you are looking for something else to conquer. Why not retire like you wanted to do and let faith and life flow from there…. If that worked out for you{it certainly can ,in spite of again this and that} . Id go all in, in that way. The other really doesn't offer as much imo. fwiw.

Hey Todd,
I agree with a couple of the posters that said they understand the process, but for us with advanced , high risk status, we were told by Doctors that we should probably be on HT without vacation the rest of our lives. The side effects on me, thank goodness, are not that bad. Sure hot flashes every day(tolerable) and decreased libido. Every time I get a hot flash, I just remind myself, yep, the medicine is working. You are having a great run with Zytiga, 21 months, I did not realize that. I started 8/1/14, so 10 months for me, still undetectable! The side effect of low energy is a battle, I take mine just before bedtime to lessen the effects.

As some write on HW "I am not a Doctor" so this is just layman's advice, but to me, this important decision might need an expert,well experienced Doctor's advice. Yes, we should be our best advocate, and get to know as much(or even more if we cann than some Doctor's). But for me I trust my particular Onc. Most of all, like you said I trust GOD, He is with us every step of the way, Brother. I especially related to Deannakay's post, who wrote she has been following you closely. (but not like in a stalker kind of way!) She wrote some excellent sentiments, and I concur.

Beside the very most knowledgeable Tall Allen on HW, I get advice from Chuck Maack on advancedcancer.net (a yahoo groups chat site) He has been a honored mentor and patient for many years and keeps a catalog of all the treatment news out there.

So to some up, (my not so sage advice, what do I know) Be in control of you treatment,but trust in some Doctorial advice, even though I know you sometime need to "fire" or change Doctors. Dan on So Cal
By the way LOGO- I love the way you put words together, and Ed-Bar, could I get you e-mail, mine is on my profile, your stats are like mine.

Hi everybody, like I said I have not reached decision on this yet but I've come to the point in my treatment where I believe I have a future. So what is that future going to look like. As my bones shrink, I'm starting to lose sensation in my arms. I have pinched nerves.i'm only 52 years old. I mean 51 years old. Recent studies have shown that testosterone deprivation leads to decreased cognitive ability. If I were 65 or 70, I don't believe it would be an issue. Perhaps, 14 months of hormone vacation will not make a difference. Maybe the risk outweighs the benefits. I just worry that when I get older the problems will worsen. You have all given me much to think about. Whatever Indecide will be what is best for me and based on statistical facts. That is why I love this forum. It keeps me thinking smart. Todd

I spent the weekend pondering options. It appears the adage if it ain't broke don't fix it enters into play. I would like my mind to be sharper and my bones to stay strong but you guys are right. It is not worth the risk. Thank all of you for the posts. Sometimes a guy gets his mind wrapped around an idea and can't see the forest through the trees. You all have helped me. Deannakay, if you need to chat my email is available.

Hey Todd,
Nice talking the other day. As far as this goes I can not find a peer for ya on this and no clinical trial other than Maha Hussains follow up that men who have had mets had a survival benefit with continuous versus intermittent ADT. That stated that data was compiled well before 2010 when many new drugs were made available for PCa. I know you still have Nicks email address, he'll resound.

You have already proven most common knowledge wrong by doing so well for so long. I'm a fan either way. But I'm pretty sure that you will have to make this decision without too many docs that would tell you to go for it.