Thinking about forgoing all treatment. (Hormone vacation)

Hi Todd. I can somewhat relate as I was on Lupron for three plus years. Eighteen months later I am undetectable, but I didn't start with stats like yours. So far my recovery is very slow so I don't feel any better, though the hot flashes have stopped.

As a rock star, I bet you could pose the question to the top medical oncologists like Myers, Sartor, Scholz, etc. I bet one of them would give you a serious answer.

Thanks Jack but I am pretty sue Meyers and the like have no idea who I am. You guys are the only ones who hold me in such high esteem

Todd,
It's your life, but I'd talk to Mandy(?) about it.
Reading your blog, hasn't she been a huge part in your fight against the beast?
I know you will, but that's a decision I couldn't make alone. So I had to suggest it.

I've only been with the beast a few years.
You have earned a rest from it.
My best Brother!

It would certainly be an interesting case study but not one without great risk. You are doing very well on your treatment plan and seem to be tolerating it well. If that is true why would you want to stop?

I was told I would be on it 2 to 3 years and I don't want to stay on it that long. So I know where you're coming from. I thought I read that some doctors advocate taking a break.

Todd, my friend I have no advise to give on this. You have had such great response we are all in awe of you and your treatments.

Sounds like you have he ached one of those moments where you are just looking to see if the options are there.

Know that we will support the decision that you and Mandy decide. Remember we all walk together in this battle.

Cajun Jeff

Todd

I hope you find some good information on this topic before pulling the trigger. That said, like you, not a day goes by where I don't wish I could be done with Lupron. I set a date with my docs to take a vacation 2 years after the completion of my radiation treatments. That date for me is in late 2016. Now I just have to stay clean with scans, labs & PSA so that date doesn't get pushed out further.

Jerry L. seems to be doing well on his vacation. Hope you get yours, too!

Is there a benchmark like that that you can target and plan for? You certainly have done your time and deserve a break. Thats a long time on Lupron & Zytiga.

Todd, I did what you are thinking about in late 2011. I was feeling really crappy from all of the medications the doctors had me on not just the PCa treatment. I decided (on my own) to just stop all of it. I went back to the gym and over a three month period lost 30 lbs, (198 to 168), regained some sexual function but not enough to do anything with, and felt great. I also relocated to another area of the country at that time so some of this was imposed by the constraints of finding new doctors. After about six months I began to cough and bring up bloody sputum. No mystery here.. I knew what it was. Xray, CT scan and lung biopsy confirmed metastatic disease. I got back on lupron and other meds and felt crappy again. PSA was rising rapidly. Peaked at around 17.

The lupron, which had already shown signs of failure prior to my holiday, reduced it to a low of 4. Stayed there a few rounds and started back up. Scans and Xray showed lung mets not advancing to a great degree and a few were actually dissolving. But bloody cough still there.

A few months ago my onco said time for Xtandi or second line measures. I entered a trial that uses Xtandi because the cost of the meds exceeded my income. After three rounds on the Xtandi I am down from 15 to .88 on the PSA and the doctor says lung nodules are reduced in size by about 10% and bloody cough resilved after first two weeks on Xtandi.

Was the holiday worth it? He!! yes. Did the lung mets get a foot hold because of the holiday? Really don't know but I think not as the lupron was failing anyway. Currently all I take is lupron, Xtandi and Avodart. Oddly enough I have been able to stave off the weight gain and have a pretty good energy level. Still not as strong as I used to be but that could just be age too. The downside and downer in all this was restarting the meds and knowing that I would soon feel like crap again. So, what it the right thing to do? Only you can decide. You have had amazing results with just medication. Why risk giving this stuff a break and letting it get a foot hold again?

Either way I wish you continued good results.

Don

Todd, its your life entirely.

The older I have become, and the more I fight with my own issues and even personal demons, the more convinced I am, its all about Quality of Life, not quantity.

This is something my wife and I both strongly agree upon, for each of us.

I would trade quality for quantity any day of the week. I am also not enjoying my 88 year old mother going into a deep downhill spiral at this point in her life, as dementia has really accelerated in her, and she has become even more non-compliant with any of her own serious medical issues. Living to be old isn't always the blessings some think it is. Just my take.

You have to do and decide what is best and right for you, no one can help on that one, life is all about trade-offs. Sometimes it's a question of the lesser of evils. You have done great so far, for years, but only you know what you can take, or are even willing to take and do long term, if long term is your ultimate goal.

David

David,
FYI, the quality of my life is amazing. Despite a reduced libido due to 9 years of h/t I have full sexual function without the use of E.D. Medication. Mandy and I have shared intimacy in some of the most romantic places in the Western Hemisphere. I am in no pain and I live life with my beautiful wife to the fullest. This is about maximizing the quantity of quality. I want my bones to be strong and my mind to stay sharp. When my time comes I want to ride off into the sunset rather than be carried. When life becomes unlivable we die and we are ready to go. That's just my take on things.

Todd,
As I approached my 3 year mark on Lupron, after initial radiation, second radiation when a met was found, Provenge treatment, and months of undetectable PSA, I asked my Medical Oncologist about the possibility of intermittent vs continuous ADT (over my wife's objections) .

We (all 3 of us) discussed the studies that have been done, and he stated that the studies that have set a lower 'restart' PSA (4.0) have shown intermittent to be equal to continuous, while those setting a higher 'restart' PSA (12.0) have shown some inferiority. We agreed to try intermittent with a restart point of 4.0. He stated that the break would do me good, both physically and emotionally, and could lead to a longer overall period before the cancer became independent (this is what finally convinced my wife).

I asked if there was any chance that we could be 'starting a fire we couldn't put out', and he stated no, we'd just restart Lupron and it would knock it back down quickly. He said that I would probably restart in 9-12 months.

Both my wife and I were quite nervous about the way this would go. I have been having PSA and T tested monthly, so we felt that we could see any changes that developed rather quickly.

So far, it's been a success! At almost 7 months off Lupron, my PSA has only risen from <0.02 to a current 0.14 (it actually was 0.15 last month, but went down this month!) My testosterone levels have risen to the lower end of the normal scale, from a low of 7 to a current 279. And I feel pretty darn good! My energy level is rising, muscle mass is improving, and I don't feel as 'fuzzy minded' as I did while on Lupron. Even my body hair has returned - it's like a second puberty (without the voice change).

I can't speak to your individual situation, we all react differently. But if your oncologist feels that you could try intermittent without losing ground, I'd be inclined to try it.

Best of luck with your continuing journey!
Bob