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decision time in 29 days ht holiday or not

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Posted 3/22/2013 7:02 PM (GMT 0)
just got my 6th degaralex shot. my psa is non-existent (0.008). my oncologist had a frank discussion with me letting me know that he was thinking about whether it might be a better idea , if my psa stays at this level next month, to take a holiday. On the one hand, there is a study that shows a small survival benefit for continous over intermittent HT for patients with METS. But those studies involved patients diagnosed with METS on traditional scans. MY METS were found much earlier with a PET scan. I expressed some concern with letting the beast wake up. He pointed out that i needed to consider the damage i was doing to my body from the degarilex, from risks of heart disease, osteoperosis, loss of muscle mass, not to mention the SEs ( I has a mega hot flash as hw was telling me this). he also thought that intermittent might help delay refractory. But on the other hand, he does not want wake the beast either. He wanted to do some more research and take anothe psa next month. then we will decide. He noted that there is no hard and fast rule here. WHAT TO DO11111
Posted 3/22/2013 7:33 PM (GMT 0)
Not an easy decision. My dad has taken 13 mo of HT, which is what most oncologists recommend as a minimum during the "ON" cycle, and February last year was his last Trelstar injection, so he has so far gotten almost a year on an "OFF" cycle. His doctor´s plan is to keep him off all medication until his PSA reaches 4. Our goal now has been to slow down his PSA rise.

Although your PSADT was rather fast before the treatment, it may not stay like this forever. Some oncologists use Avodart during the OFF cycle in order to prolong the time off, although this approach has not been validated in randomized control trials, but there are some smaller trials(one by Dr.Scholz) that indeed show this to be true. Dr.Myers also uses Mediteranean diet in order to slow PSADT. It is a difficult decision, but intermittent therapy, imo, makes a lot of sense. The study you quote by Dr. Hussein, about small survival benefit on continuos HT - I was surprised to see that the patients were kept on HT only 6 mo before the OFF cycle - many experts agree that this was too short.

Good luck with your decision in the coming month.
Posted 3/22/2013 10:51 PM (GMT 0)
I've heard that the study showing an advantage for continuous over intermittent was very flawed, in that they compared continuous to a terrible, irresponsible, no-one-does-it-that-way version of intermittent.

My gut was that continuous was better -- it felt like if you finally get your boot on the cancer's neck, for god's sake, keep it there! However, I've heard much more data-based arguments that counter-intuitive though it may seem, intermittent does have advantages, for both quality and quantity of life. We're a long way from making that decision, but I know our doctor (Snuffy Myers) recommends intermittent.
Posted 3/22/2013 11:03 PM (GMT 0)
I think the doctor's concern about the harm to your body in general is valid and should be considered in any decision.

david
Posted 3/22/2013 11:37 PM (GMT 0)
I was just going to create a post asking if there are any bone met guys who are doing IHT.

My doc, Myers, had a good video about that study, but I can't seem to locate it. But, as indicated above, he feels that it was flawed.

I had a short off season last year this time, but then Myers wanted to zap a debatable spot and put me back on ADT 3. Last Lupron was in October and stopped Casodex like 6-8 weeks ago. I'm still on Avodart as a maintenance drug, do the med. Diet, a few supplements, and exercise often.

I get blood work frequently and see him next month. He checks various markers and will determine when to go back on those fine drugs.

It's a tough call especially for us bone guys. And isn't that quite a conundrum-- To make you feel like a man again and stop all the nasty of HT, we risk PC coming back...what a cruel decision....but I think it is a balancing act where you try to protect your body from the harms of HT, but constantly monitor the PC to keep it in check.

Please don't hesitate to ask me any questions if I can help.

I also rely on the F18 BS.

Jerry L.
Posted 3/23/2013 10:20 AM (GMT 0)
Thanks all for the feedback. Infohound-my initial reaction was with you.....it's taken me 3 years to get the sucker under control, why give it a chance to get started again. But then I wonder about refractory. Average time on HT before refractory is only 3 years. I'm only 52, so 3 years is not enough. I'm also getting sick of the SEs, hot flashes like crazy ( not good for a lawyer when your clients see you sweating). I trust my oncologist (petrylak-Yale) but as he said, this is not a clear or easy decision. Jerry L thanks, let's keep in touch - if Myers and Petrylak both say intermittent, then maybe that's the way to go?
Posted 1/30/2014 5:43 PM (GMT 0)
Would appreciate any input from anyone faced with the decision when to resume ADT after a vacation period. I finished IMRT Salvage on Dec. 2012 and began Degarelix on 11/4/12. Zero psa on 2/5/13, 5/9/13, 8/13/13. Last degarelix 9/15/13 after 12 months. Stopped ADT and began vacation period on 9/15/13. First psa was 0.03 on 1/27/14 while on vacation period; surprisingly my testosterone was 24. What should I do? Observe to see if I have now become CRPC or should I resume Degarelix? Vacation period lasted only 5 months. I have Gleason 9. Somewhat disappointed since I was enjoying the decreased side effects and the frequent psa of zero. Thanks for any input.
Posted 1/30/2014 5:55 PM (GMT 0)
I am at the same crossroads. I do not have Mets. Big PSA test in about a week. Both my doctors, Lam and Hussein, say to go intermittant. Yes, her study ONLY applied to those with Mets.

But I now more deeply understand the deleterious impact of HT on the body. I want to get off it. Otherwise, I can die with cancer, not from it, of heart disease or some other HT induced malady. If that happens, you have effectively died from PC

MEL
Posted 1/30/2014 6:13 PM (GMT 0)
pmikey (and others),

The decision is a tough one. In our case Jim went intermittent to let the PSA rise enough to get a C11 acetate scan which could possibly pick up any local cancer that could be cleaned up with RT. The Scan found nothing which is good but also meant micromets are most likely causing the PSA to rise.
With the rising PSA we did qualify for one of the VERY Few clinical trials for hormone sensitive men. “Phase II of Enzalutamide alone or in combination with PSA-TRICOM (aka Prostvac) in patients with Non-Metastatic Castration Sensitive PC”. Here is the link to our HW post

www.healingwell.com/community/default.aspx?f=35&m=2930892

Thus far we have been quite happy with the lack of SE's from the Xtandi and quite luck to land in the vaccine arm. Yes, it's quite a time commitment to travel to NIH, but we're hoping that early immunotherapy and the possibility of delaying hormone resistance is worth it!

Just another tool in the box that will hopefully finally do us all some good.

Marie and Jim
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