Hi all. I’d love some opinions from all the smart participants on this site, on taking a “vacation” from lupron/Zytega . My situation. 6 years after focal chryo I had an increase in my PSA and went to Arizona to have an acetate c-11 imaging test with dr Almeida. Both he and UCLA looked at the imaging and agreed it was “highly suspicious for 3 small mets (2 pelvis and one rib). My doctor , Dr scholz called it ogliometastisis. On his advise I hit it hard. I did 4 cycles of taxotere and have been on lupron/Zytega and prednisone now for almost 15 months. I also did radiation on the 3 “mets” which new studies seem to indicate helps. For 8 months now my PSA is down to .02.
Anyway, my question is Dr Scholz is suggesting I take a “vacation” after month 15-18 from the Zytega and lupron. While I’d love to do that, do you think stopping will A). Help my long term survival because it delays me becoming castrate resistance allowing me to go back to Zytega/Lupron if need be plus stopping now mitigates all the long term health side affects of lupron or B). It hurts my long term survival because stopping now allows the cancer to come back. I can not find any definitive literature or clinical studies either way. Another factor is that because I still have a prostate I’m afraid I won’t know if an increase in PSA after my “vacation” is related to normal prostate PSA or the cancer coming back
You should know that I have Very little QOL issues other than occasional stomach problems and a reduced (but not to zero) sex drive. So if it’s life prolonging, I can definitely live with more lupron.
By the way, I know I'm doing so well because I weight train. I was so scared about everything I heard about lupron I was determined to beat the game. I went to a trainer. I’ve actually lost weight and gained muscle mass. I have before and after pictures to prove it if anyone cares to see. it’s hard work for sure. I hope I can convince some of you on lupron that weight training can save your QOL too.
Anyway thanks for all your time and looking forward to knowing your thoughts.
Schwah
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Schwah
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Dr. Freedland has said that the "vacation" phase often turns out to be a continuation of ADT. T recovery is very slow. A minimum of 6 months can be expected. And T often never reaches the previous high. And the previous high is often not very high anyway.
As T recovers, expect PSA to rise. PSA will settle down when T reaches Morgentaler's saturation point (~250). i.e. you can't begin to calculate the PSADT until you are saturated. Dr Myers has said that all of his patients reach that point by the time they are no longer hypogonadal (>350).
My view is that if one is stopping ADT, there is no point in being timid about the T increase. Best to immediately jump to normal T. One can use >350 or a BAT approach (>1,000), but there is no point in languishing in a state where T is low & estrogen is dominant (my view).
If the PSADT is long, you might have a long vacation. If short, you can quickly resume ADT.
Post the before and after pics! You deserve bragging rights.
As for iADT - neither scenario A nor B seems to be true for non-metastatic men - for the most part, the diminished selective pressure of ADT is balanced by the accelerated growth of cancer. All studies in non-metastatic men show no significant difference in survival between continuous ADT (cADT) and iADT. However, there is also almost no difference in QOL.
But you, being oligometastatic, are in a different case. The Hussain study found that they could not rule out that iADT was not inferior to cADT in men with metastases. In other words, cADT may be better than iADT. In a subgroup analysis, they found that there seemed to be an advantage to cADT especially in minimally metastatic men.
Since you seem to be flourishing in spite of ADT, and there is a risk of iADT for you, I can't think of a good reason to take a vacation.
I have had discussions on this exact topic with top oncs from MD Anderson, Hopkins, and Mayo. These are not “evidence based” multi-institutional phase 3 views but the hypothesis of some aggressive pioneers - bottom line is this: it is becoming more common (or perhaps less unheard of) to take oligo patients off adt if their PSA reaches undetectable levels following intense multi-modal treatment. They remain castration sensitive, though to be fair, it’s a bit of a gamble when you consider some men go many years on adt.
That was the backbone of Scher’s study at Memorial, as well as a trial currently going at Hopkins.
The rationale stated above- that you still have front line tools to hit it with if the PSA creeps back up, makes sense. As well, you’re less likely to see neuroendocrine differentiation sooner, and your QOL is arguably better. The whole idea of oligo being curative is predicated on results these pioneering centres are seeing internally - guys going 3, 4, 5 years plus without biochemical recurrence. This is the gist of why words like “curative” for oligo men are being slowly introduced into the conversation.
This type of approach (notwithstanding Myers’ pioneering work, where he seems to have figured a lot of this out way back) seems to have only been around for a few years tops at the centres above so no one knows what percentage of men will cruise at NED / undetectable PSA, or for how long.
I have bumped into some oligo studies that mention, prognostically, that the men who seem to be doing the best were the ones with the lowest PSAs post systemic and the lowest CTCs on liquid biopsy. It makes sense to me. One other consideration I would add to the equation is PSMa keeps getting better - if you could cruise for a few years without your cancer morphing into non-PSMa expressive, then you’ll have an even better whack at next line treatment once they tweak which tracers - actinium, lutetium, Evans blue, work the best.
Thanks so much for your detailed and thoughtful response. My MO also says that his patients that go under .1 PSA (I’m .02) day best. In those discussions with some of the experts, did a continuance of Zytega also come up and if so would they vacation that also? By the way what are “CTCs on liquid biopsy “? My lesions on my pelvis and rib too small for a biopsy but I did a biopsy 8 years ago from my prostate. That was the Gleason 9. I do not recall a CTC score. Were those standard back then ? Can I still check for that now ? Thx again are2yvr (by the way what’s that name mean?).
The question of going off Zytiga splits folks down the middle, it’s such a gamble - I suppose one of the benefits of making it through phase 3 is that it’s “tried, tested and true” - as opposed to trials and hypotheses.
Thank you for posting this paper. I am taking it to my appointment with my radiation oncologist next week. With zero circulating tumor cells there's a chance to slow down this beast considerably...
I read your link thank you. Makes sense. My question is, is there a standardized blood test out there now to measure CTCs? If so I’ll ask for it for sure.
All that makes a lot of sense. Nothing to note in my gene mapping but I only had the original biopsy from 8 years ago to map do possible it’s changed for the worse since. I think yo mentioned that you actually took pills or supplements to increase your testosterone faster after going off. That seems a little scary. Did you also stop Zytega (if you were ever on that). More art than science to all this. Arghhh. Thanks for all you do here my friend. You are a mensch for sure. Shalom.
I am but one data point but...my urologist gave me a hug [and when your urologist touches you one has to be concerned anyway ] after a two year ADT "holiday." During that holiday my testosterone level got back in the normal range and my PSA started to climb, first fairly slowly then accelerated to 2.0 at year 2. A chance MRI on my back revealed abnormal lymph nodes and subsequent PET with Axumin revealed mets to lymph nodes and my spine. I am not convinced that the ADT holiday is beneficial in the long run...someone can provide studies to the contrary if they wish. With availability of drugs like Prolia the osteopenia-to-osteoporosis train can be slowed down considerably.
you'll find out by reading that continuous lupron/eliguard shots will deplete bone mass and as long as u can find more zytiga then i would take a vacation. remember the body/disease will adapt to your treatment and it won't forever. its not like u can be on these for years.
me charlie here have been on treatment for 10 years and who knows if thats common or not.
After failure of a very good surgery in March 14 (GS 8, T2CNoMx, margins, ECE and seminal vesicles negative and only 10% involvement) my PCa came back 18 months later with PSA .2 then .3. We did SRT in Mar 16, that failed, PSA was .7 90 days after then a month later 1.0!
I went to Mayo in Jan 17, had the C11 Choline scan and consulted with Dr. Kwon. The scan found four pelvic lymph nodes...Kwon put me on a combined regimen of six cycle of taxotere, 24 months of Lupron and 25 radiation treatments (45 Gya).
Happy to say that with first two chemotherapy treatments and the first Lupron my PSA dropped from 4.8 to <.1 and stayed there. In February this year Kwon agreed that given my response to treatment he was ok with my stopping ADT at 18 months vice the 24 planned.
My last Lupron was in May (90 days shot), August labs were PSA <.1 and T <3. Oct labs were PSA <.1 and T 135. I have labs and a urology consult every 90 days. We agree that if or when my PCA returns we will get multiple readings to gauge PSADT and PSAV then decide on treatment based on changes in treatment protocols at that time. We also agreed PSA would not go above 4 before resuming treatment, more likely 2 given newer imaging capabilities.
The objective of this regimen was the elusive cure or a longer progression free and overall survival. Too early to tell obviously but I already notice the difference with T at 135, played 75 minutes of full court basketball yesterday without a problem.
Throughout my combined regimen I maintained my normal activities, worked, travelled, exercised - I ski, play basketball, ride my bike, swim, lift weights, hike in the mountains...SEs were mainly hot flashes, intolerance to heat (never ran the heater in my car during the winter, thank goodness for dual climate control in the car or my wife would never travel with me...!).
My medical team and I call this plan the "whack a mole" treatment. It is my decision in consultation and supported by my medical team. Is it the right decision for you, your decision in consultation with your medical team.
I think it's important to have an active monitoring plan if you stop ADT and a plan what you're going to do should your PCA return, labs, imaging, cutoff point to resume treatment...
I had this discussion recently during a visit with Dr. Sartor, we discussed the option of stopping ADT to get some relief from SE’s, my PSA has been undetectable for over 4 years and scans show no sign of active disease despite my original dx of Stage 4 G9 cancer. I’m currently taking Xtandi, Lupron, Avodart, Metformin and Estradiol patches for SE’s and bone health.
He did not seem to be in favor of the idea of stopping and said if PSA starts to rise there’s no guarantee that ADT will be effective again, if I recall correctly I think he said that it is likely it will not. Also he said that T would be very slow to return and sometimes never returns. He recommended to try and mitigate SE’s using various methods and get as much mileage as possible out of ADT, especially Xtandi which will likely fail sooner or later (I’m an outlier having been on it for three and a half years). Frankly that’s the way I was leaning anyway, I’m very fortunate to have dormant PCa and want to keep it there as long as possible. Prior to Sartor, I was a patient of Dr. Myers and he was not a fan of stopping ADT either, he had pretty strict criteria for what he deemed a durable, long term remission.
Just sharing my experience, everyone is different and can make their own decisions by consulting with their doctor.
My Onc took me off of the Zytiga/Lupron 3 days ago. I have been on it for 63 months. My PSA has been >0.01 the entire time. Before stopping I emailed a highly recognized Oncologist friend in Las Vegas for his opinion. He concurred. Time for a break. I am okay with it.
I have been on 3 'vacations' from ADT in my 9 year battle with this dreaded disease. 1st one lasted 30 months. 2nd one lasted 12 months and this current one is on month 13 and likely will last to around 16 months. I usually return to ADT when PSA returns to close to 1.0. Also monitor with scans. T returned to normal during 1st vacation but last 2 T hasn't made it back to normal levels. Vacations have been great and nice getting away from SE.
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] after a two year ADT "holiday." During that holiday my testosterone level got back in the normal range and my PSA started to climb, first fairly slowly then accelerated to 2.0 at year 2. A chance MRI on my back revealed abnormal lymph nodes and subsequent PET with Axumin revealed mets to lymph nodes and my spine. I am not convinced that the ADT holiday is beneficial in the long run...someone can provide studies to the contrary if they wish. With availability of drugs like Prolia the osteopenia-to-osteoporosis train can be slowed down considerably.
Lupron ( ADT ) vacation
lupron vacation
