Wondering if anyone has strong perspective on the benefits of 18 vs 24 months of ADT + Zytiga after locally advanced PCa? My original diagnosis at 53yo was Gleason 4+3, and post RALP surgery T2CN0M0 with 15 clear lymph nodes biopsied. However, persistent PSA and Axumin scan identified 2 avid lymph nodes not identified during surgery. EBRT radiation and ADT+Zytiga brought the PSA to <0.05 right away.
I'm soon approaching the 18 month mark (well, in 4 months still) and had been counting on that being the end. Tired of the fatigue and loss of energy and fitness. However, I've often seen people recommending 24 months. Wondering if the different duration is due to a) different diagnosis or b) different views on the optimal duration of ADT+Zytiga. I haven't been able to find any studies as a guide.
Thanks,
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PGDuan
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No one knows the optimum duration, and there is no data on the use of adjuvant Zytiga, but given your positive lymph nodes, I can see why you might want longer treatment. In the retrospective Touijer study, "When combined with EBRT, the median duration of ADT was 5.9 yr (interquartile range [IQR]: 3.55–8.91), 10% of the patients received ADT for less than 1 yr, 15% for 1–3 yr, and 75% for more than 3 yr."
The ADT+Z certainly isn't intolerable. I'm functioning well and pretty active. My labs continue to be good (e.g, liver is fine and blood pressure and hot flashes are tolerable).
The main downside is the collective cost of HT on my energy, fitness, QoL, etc.
I've had it in my mind (not sure why) that 18 months of ADT+Z was optimal, so I'm just waking up to the fact that an extra 6 months may be wise and necessary.
I just finished listening to my doc tell me if it hasn’t worked in 18 months it isn’t going to. Meaning a cure. I’ve started a monthly psa check and stopped Lupron and Zytiga. So we wait. Still have a prostate so where it stops when it starts moving nobody knows. Starting back up seems ok if it moves. I always wished I would have had a psma pet scan before they drove my psa down. Now I get my chance. You can always go on it forever.
If you can fight through the fatigue stay on Zytiga and milk it for all it's worth. I was on it for 3 1/2 years. the fatigue becomes more tolerable with time.
Hi My dad is 78 and only just on his 3rd month of Abiraterone. The fatigue is bothering him, he has to have a long afternoon nap. And due to his age and knee surgery on both knees there's not much excercise he can do. I've encouraged him to consider swimming or maybe just a gentle bike ride. You say that after awhile the Abiraterone became more tolerable, and you had less fatigue. How long did this take, did you change anything about your daily routine. My dad has a follow-up with his cancer doctor in 10 days so his fatigue is something we want to address. Any feedback on how your tolerance towards drug changed would be appreciated.
Thank you. I will tell him that and hopefully that will give him some hope and a reason to stay on it.
I would do the extra 6 months just because it might give you a survival advantage and that would be worth another 6 months of ADT,
You also won't be thinking later that you could have done something and you didn't. That's part of the reason why I did optional early chemotherapy for my stage 4 PCa. I wanted to know that I did everything I could do, especially if my response ended up being poor.
Right - I originally hit it with everything (surgery, EBRT, ADT+Z)...and I'd hate to think I didn't do everything I could when I had the chance (hope) to put this behind me for good. Thanks
As a general rule, the younger you are the more aggressive you should be with treatments. Hopefully you have a lot of years left to recover and an extra 6 months of ADT will be a small percentage of your overall life. It will all be in the rearview mirror soon enough. Wishing the best for you.
For what it's worth, my situation is basically identical to yours. I'm going with 24 months of each, on the advice of my MO at Duke. I was diagnosed at 56
Hi PG, my 2 cents, I had a different condition a while back and had to take some difficult to handle drugs for a year. Having the end in sight actually made it more difficult for me which may sound strange. But now with no end in sight for me with ADT I don’t dwell on it and just push forward. Everyone is different but seems to work for me. Maybe don’t dwell on your endpoint and just focus on your good numbers that will hopefully continue?
Very interesting discussion. Meet with MO tomorrow. He has stated that he wants to go with a 3 month Lupron cycle and see how I respond. We'll have to explore this further.
In your case - I'd share this paper and perhaps some others with your oncologist. He may be pushing the 24 month term of ADT since you've had some spread already. In my case, no spread was found and my PSA has been undetectable - and all 3 of my MD's have agreed that 18 months should be adequate. Good luck, I can understand why you want to get off ADT - I do too.. (another 6 months will be 18 months - so one more shot..)
Similar dx and tx as you, but RRP was a few years earlier. Followed a different timing protocol for the ADT (and now added Zytiga) for a variety of reasons. I think hormonal treatments are especially frustrating for active/competitive athletes. But once you accept the new normal, SEs do seem very tolerable (at least for me, so long as keeping up regular vigorous exercise). Only added SE I have from Zytiga is noticeable tinnitus at night.
Something to note - T does not necessarily recover immediately after stopping ADT. For some like me, it took 6 full months to see ANY return of T after the last Firmagon shot was out of my system; it was not a gradual return. So I was castrate the first ADT Tx protocol (T between 4 and 18) for the full 13 months on ADT, + additional 6 months. Total 19 months w/ only 13 monthly shots.
This time around (whole pelvic and prostate bed EBRT + ADT + Zytiga started 8-2018) stopping ADT/Zytiga combo at 6 months. Expecting T will again take 3-6 months for any recovery. T has been < 7 and PSA <.01 the entire regimen. My RO and MO are ok with this shorter time because Zytiga was added.
No studies or trials to support what we’re doing of course, but will watch and see what happens!
This is a topic that has become one of my pet peeves, although the term is probably not the right way to state it.
I was faced with this decision myself (duration of ADT treatment) and made a decision that went against 'common sense" because the doctors (research types) couldn't come to a consensus (includes my current oncologist).
I've seen stats that look at SOCs that range from 6 months to 24 months (assuming non-stop is NOT part of this group).
The LACK of consistency and completed clinic trials will make this decision elusive in most cases because the basis for continuation should be proven conclusively (which is not the case).
What I took as the key component for continued use of ADT treatment (Lupron for example) I looked at the point where it is likely that the side effects become permanent.
Based on what I've read to date, that magic number was 2 years. Anything beyond 2 years and your gonads might never recover. Then some other SEs were mentioned at the 24 month mark and I said to myself, I don't want to cross that line.
IF my condition worsens and I have to return to ADT, then so be it, but in the meantime, I am enjoying my recovery in 'T', muscle mass, energy levels and so much more.
In closing, you need to monitor your own situation and if you can go on 'holiday', then perhaps it is worth the attempt.
You might be one of the more fortunate ones who survives with a better outcome as a result of a form of aggressive treatment that ADT offers.
For what it is worth, I quit ADT in July of 2018 - I watch and wait as my numbers climb.
I'm told 'there are no visible signs of a macro (major) cancer event occurring in you at this point in time. We can't say the same about a micro environment."
I have CTCs (circulating tumour cells (via third party test results)) but I can't let that drive the process because it is inconclusive. The raw numbers (CTCs) were low and favourable, indicating that I might have dodged another bullet.
I get tested every 3 months so a timely update will occur in the next few weeks.
I optionally can choose to get CTC testing on an annual basis, but I'll need a reason to do so again.
Thanks - really interesting. I've never had the CTC test - is it expensive and/or covered by insurance? I'm wondering if you were able to use the CTC test as any kind of guide before you stopped ADT?
E.g., if the PSA is undetectable and if CTC test results are good...then stop the ADT+Z, otherwise go the extra 6 months to allow more time to beat it down.
Thanks Nalakrats. Appreciate the comments - my hope is that the surgery/radiation/ADT+Z has killed off the PCa so the "vacation" will be permanent. Of course, even though my PSA has been <0.05 some micrometastatic disease could be hiding somewhere.
Put another way, will 6 more months change the likelihood of needing to go back on ADT+Z down the road? I guess there isn't a much evidence yet to be sure, but 24 months may be better (and or a safer bet) than 18.
Thanks. Did the 22 months decision work out well for you?
Like everyone probably, my case seemed kind of unusual. Everything pointed to intermediate risk except for the persistent PSA. GS 7, PSA ~12, Post-RP with with 0/15 avid nodes, no margins, and nothing detected on ultrasensitive PSMA galladium 68 scan. Just the damn persistent PSA. Have always wondered if the surgeon just missed some of the prostate.
Anyway, my current MD reminds me the above is illogical— the persistent PSA just means the PCa escaped the prostate and was missed in the post-pathology.
Just venting. Thanks for the insight and encouragement.
While you could consider stopping ADT after getting tested for CTCs, the testing reveals much more to consider moving forward.
The group/testing I refer to is called the RGCC Group, based in Switzerland. They do their testing in Greece (they actually fly your blood samples there). You can search for them online. You'll discover that there are resources (doctors) spread around the world who are authorized to collect the samples and act as their agent(s) in the testing protocols.
The North American office is located in Texas. I was tested in Toronto.
The cost at that time (1 year ago) was approx $4,000 Canadian (less in U S $$).
This group is not unique in the world, but I trust them to be credible in their findings.
They have run their own clinical trials related to specific cancer types with the goal of establishing baselines that can be used / compared to annual tests to see where the patient is at, in terms of progression (or cured / lowered risk).
What I really liked about the results (which are extensive) was that they referred to specific drugs or supplements that showed anti-cancer activity based on your own blood samples.
For example, docetaxel, turmeric and quercetin were actually used and documented for their effectiveness in treating the cancerous cells. I also was tested for medical cannabis (THC and CBD to be specific). The report stated that MY type of cancerous cells would NOT be affected by these cannabanoids.
I'm not sure I would advise everyone to get this type of testing, but in my case, I wanted to know how 'grim' things might turn out OR to see if there was hope and reason for some optimism.
Turns out my 'burden' was low (count below 20 where 20 and above is the standard for the burden). Below 20 is good - above 20 bad ....
There were multiple drugs / chemical compositions that could make a difference. In the meantime, the numbers suggested that I might be able to take an ADT holiday and that in fact, there was a chance that my longer term survival was likely (hoping for 7 - 10 yrs +).
Time will tell whether it was the right thing to do, but I do have some assurance that the final outcome isn't as bad as I feared at the outset and that I might go past 10 years - maybe even with a cure as a possibility.
The subsequent annual tests were quoted around $1,000, seeing as the initial baseline testing is comprehensive.
As an update my MD (Stanford) advised 18 months is appropriate in my case. The main reason is that I didn't have PCa that came back after primary treatment, but in my case primary treatment could be considered as both the surgery and EBRT. If it comes back again, then I would need longer.
She referred to the major study that showed 18 months was roughly equivalent to 36 months.
Feeling better about this...
Thanks everyone for the input and ideas.
I should have read down one more post a found you are in tune with my doc. Stopped February 7th.
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