Thought I'd update my post from a month ago [pasted in below], but my situation briefly is that I've had undetectable PSA for 1.5 years, on Lupron for 2+ years.
I finally got to speak with the senior MO at Smilow in New Haven, Dr. Daniel Petrylak, who acknowledged the various ambiguities in treatments for me. His recommendation was not to add Zytiga now but to get a PET scan at the end of the 3rd year of Lupron (which would be in April of 2021) and see what it shows, esp. the lesion in my sacrum. If it's much improved, then I could go on a Lupron "vacation." If it's not, then continue with the Lupron and/or add Zytiga. Monitoring after 3 years would be via PSA tests and PET scans every 6 months. Since my last 6-month Lupron injection "runs out" in February 2021, I would like to get the PET scan then (i. e., 2 months "early").
[My original post from a month ago, without the numerous responses:
Hello, everyone. I’ve gotten different advice from my RO, who did my RT and has been overseeing my Lupron injections for over 2 years, and my MO, to whom my RO referred me when I asked about the possibility/advisability of a Lupron vacation after 3 years (still 7 months off). Basically, the RO doesn’t think it’s worth adding Zytiga to my Lupron now because there isn’t evidence of its usefulness in my kind of case, while the MO thinks it may be useful even if my situation does not correlate with the evidence. Both are at Smilow Cancer Hospital in New Haven, CT.
I’d be grateful for your thoughts and pasted in their comments below. I’ve had undetectable PSA for 1.5 years now (via the ultrasensitive tests that my doctors use), and my Lupron side effects are tolerable. But although I want to be aggressive against the cancer I’m not keen on adding new side effects from Zytiga (I’m also on lifelong Xarelto because of a propensity for pulmonary embolisms).
MEDICAL ONCOLOGIST’S SUMMARY OF MY CASE:
73 y.o. man with recurrent VTE and PEs in 2016 who had prostatectomy in 11/2017 for a T3aN0 (0/36 LN+) Gleason 4+3 (tertiary 5). PSA remained elevated (0.077) after surgery. Fluciclovine PET in 4/2018 showed uptake in sacrum, which was also seen on MRI at the time (S4). Leuprolide was started and he had RT to prostate bed and S4 in 5/2018. PSA became undetectable in 2/2019. Tumor profiling showed somatic but not germline BRCA2 mutation.
At this point he has had 2+ years of ADT. There are 2 questions. His RO is considering continuing for 3 years total and if so, he could have abiraterone added. I explained to the patient that we have no data that 3 years is better than 2 years but we do have data that concurrent abiraterone adds to progression free survival (though in the studies that showed that, abiraterone was given from the beginning, not 2 years into therapy). Furthermore, all of these data are based on treatment for localized disease as opposed to fully treated metastatic disease, which he has.
He feels that he would like to be as aggressive as possible so it is reasonable to do one more year of abirateone/prednisone + ADT though benefit unclear and it could increase risks from ADT side effects. He chose not to start during the early part of the covid pandemic because he was worried about the safety of visits.
Today we discussed these issues again. He will consider going on abiraterone. He will probably continue for 3 full years on ADT. Given that he has oligometastatic disease, it is unclear if stopping treatment at that time is safe; we discussed this as well.
RADIATION ONCOLOGIST’S RESPONSE AND EVALUATION:
I think the bottom line is that there is no randomized trial evidence that I’m aware of that abiraterone acetate and prednisone after radiation and ADT for metastatic castrate sensitive prostate cancer improves survival. There is some evidence that it improves survival if hormone therapy is given alone (i.e. if you had not gotten radiation therapy). There is a randomized study that is accruing now for a similar cohort of patients that is testing abiraterone + prednisone + APALUTAMIDE added to standard hormone therapy vs. the standard hormone therapy alone – so that emphasizes the fact that we don’t know what the role of abiraterone acetate actually is for you. It is MORE aggressive therapy. We DON’T know whether it is helpful or not. We DO know it adds more side effects. IT IS POSSIBLE that someday in the future we WILL know that it is actually overall beneficial. But unfortunately, we simply don’t know the answer. Because randomized studies take years to develop and accrue and report out.
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There are two divergent views about adding second line meds like Zytiga upfront. The sellers want you to start all heavy duty treatments as soon as you get diagnosed with Mets. It works perfectly for sellers because they can dangle a 6 more months of life carrot in front of you and can sell all their New stuff to you and make huge profits. The philosophy is "every ones cancer is aggressive..until proven otherwise." And once you are on their cocktail, you will never be able to know that your cancer was NOT aggressive and you could have done great only with Lupron and /or Bicalutamide. And as time goes by on these heavy treatments ,you become Castrate Resistance and worse you develop "treatment emergent NeuroEndocrine Cancer" Even more profits for them now. You and your family goes bankrupt and they become "Jeffrey Epsteins" and "Madoff's "of the World.
Now, lets talk about what is in your interest. If your PSA is undetectable ..and you do not have objective evidence that you have aggressive variant...tell the seller that for now, my current treatment is working beautifully and I will like to monitor all my biomarkers and scans closely. If needed, I will buy your more aggressive treatments. Let me stay healthy for now . This is what I did precisely inspite of a lot of fearmongering by sellers and their cronies. I am Off Lupron and Zytiga for last 10 months. Only on Bicalutamide and Finasteride. My PSA is 0.6 (intact prostate) MRI and CT all clear of bone mets. Plenty of energy as T has recovered to over 300. Zero hot flashes and good mood most of the time.. Blood pressure back to baseline. Blood sugar normal again. Keeping your general health robust is very important as you might be living for decades with this.
Its your choice what you choose...my suggestion is simple... " Be an informed Consumer..do not get manipulated by fear ."
Absolutely. If seller says down the road, you might get your cancer grow again...so let us treat it 3 years in advance...say thank you.. but no thank you. The same logic can be applied more illustratively...when the child is 5 years old, seller can say to parents ..look your child can have cancer when he is 50 years old so let us give him radiation and chemo right now...we need to be really aggressive.
But, I would like to add....Make sure you monitor your PCa closely with biomarkers such as PSA, BALP, LDH etc. and do periodically MRI/CT so you know exactly what is going on inside.
I don't like either of the SE's with either one of them. Neither. Buyer beware. Two huge profitable powerful drug corporations. I also have a cousin retired RN who worked long term with Eli Lily in Indianapolis, another huge profitable powerful drug corporation.
At some point it's time to question the need, necessity for me to continue these meds, or at least question my med onc team face to face.
I'm still leaning towards another Genomic liquid blood test.
Keep taking Lupron and run with it, don't add Zytiga for a hypothetical benefit when your PSA is n/d. If you are indeed oligometastatic, it would best to treat the sacral met when/if your PSA climbs to around 0.2, provided it could be imaged with a PSMA scan. The key here is not to overtreat your known condition, i.e. oligometastatic, with a 2nd-line drug that's meant for systemic tx.
I may have mentioned before, but for five months, I was on adjunctive Lupron/Zytiga to BT/IMRT prescribed by an aggressive MO, but at my own behest, dropped Zytiga during IMRT due to high BP. A couple months later I advised my local Uro that I dropped Zytiga, and he tried to talk me into restarting it citing Stampede. I didn't restart and PSA fell to <0.01 anyway, and stayed there. So I doubt Zytiga would have done anything other than possibly decrease the time to CR.
I'm a bit confused and that's not unusual for a 68.5yo on Lupron/Abiraterone/pred for 12 months after 1st ADT Lupron/Bicalutimide 2008-2013 treatment failed; that was after my 442 IMRT rad zaps late 2005 failed in 2008.
Should i consider asking telling my newest Med Onc i'm seeing on Dec 18th why continue my Abiraterone? Yes my PSA is not at a non-detectable level yet. Not yet. June it was 0.745 and Sept 0.475. That all depends if when my PSA hits "undetectable". That may not be till early 2021 or ?
Could you explain when i should really cease Abiraterone?
Hi Doug, it appears you became resistant to Lupron/Bicalutimide and then started abiraterone with good results— falling PSA. It seems you should continue this path until you become resistant to abiraterone (and it can be rechallenged with dexamethasone substituted for prednisone ). Even if you don’t reach n/d PSA, your ADT is working. If you have three consecutive rises in PSA or PSA > 2.0, ask your MO about substituting dexamethasone.
Thanks timotur. Next up are PSA/T-level tests plus CT pelvis/chest/abs and NM bone scans Dec 17th! Results will be interesting. Last same scans June 8/9 showed nothing nada, non-detect of any cancer tumors. A lot better than my 68Ga-PSMA-11 PET scan 08/011/2019. That showed prostate gland avid cance, plus pelvic and abdominal lymph node avid hot areas.
Maybe i should get an early PSA lab done say mid Nov, on my own request.?
All good news, especially the recent n/d tests in June! Since your PSA dropped so much, by a half, from June to Sept, I think you’ll be pleasantly surprised in the Dec test-- the trajectory is exponentially decreasing-- so I wouldn’t worry about testing in Nov. Just relax and enjoy Thanksgiving. 😊
I am younger than you and on first line treatment, unlike Learnall I am on the kitchen sink treatment schedule. Lupron, Aberiterone+Pred, 80gy radiation finished in March 2020. Unfortunately I found this forum late into my treatment decisions and my learning curve wasn't quick enough to make alternate decisions so I am stuck with what I have for better or worse. Hoping the curative intent wasn't just a sales pitch but only time will tell, it's clear others think so. That being said as I am younger than many here I am very active and I have not had a terrible experience on these meds. My blood work concerned me for some time but me and my Dr. finally came to the agreement if it was bad we would know by now. I have the loss of muscle in areas not used regularly, loss of body hair and my family jewels went from 50 carots to 25 other than that no fatigue, no hot flashes, no brain fog so far. Just hope I am not using up all my luck on side effects. My dx was LN only based on Bone Scan,CT, MRI and attempted LN biopsy so pretty sure that makes me oligometastatic. Based on comment above I guess since I started with this I fall into that area the MO mentioned for improved PFS, so with that and an undetectable PSA for 7 months so far gets me.......? Time will tell, its the long game that counts. Best of luck with your treatment whatever you choose, sorry for blathering on.
I tend to agree with those 'members' who suggest you NOT try to overtreat your condition.
There are the probable cumulative side effects from an aggressive approach - while there is no indication that you would actually benefit from that aggressive approach. It's like rolling the dice, never knowing why you had to roll in the first place. I would try to minimize the treatment(s) - if a milder form of ADT could deliver the same NET results. Of course, I'm making some assumptions, but I've read about enough cases in these forums, where you have to question the net benefits to the patients - wondering WHY they are being advised to do something that isn't clearly indicated as the MOST beneficial or logical choice to make, in terms of progression of the disease.
In my case, we went full thrust into an aggressive treatment plan. I reacted very badly to that approach and QUIT treatment altogether - then went on an ADT vacation - that has lasted about 2 1/2 years. I've had a BCR, but we caught it VERY early and I got a few years of feeling like my old self again. IF I had stayed on the original path and plan, I'd be burnt out by now AND lost an invaluable time frame, in terms of quality of life.
I don't know if this is possible, but could you get a second opinion - that might be worth it's weight in gold.
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