Lupron + abi/pred 9 months and PSA<.04 throughout - - consider dropping abi and monitor it?

[jackwfrench]

I am a recurrence case and PSA went to 2.2 last year; multiple possible sites. After 9 months in now, PSA <.04 and TT <10 the whole time. Hopkins MO says he would not risk stopping the abi despite the immeasurable PSA whereas Moffitt MO says he would stop the abi since it "seems" not so needed and that long term abi causes bodily harm. Neither would stop Lupron. Looking for insights or experiences.

[Tall_Allen]

What long-term bodily harm is that, if you are on ADT anyway?

[jackwfrench in reply to Tall_Allen]

Check out the serious side effects section of medicalnewstoday.com/articl...

Yes Lupron has its list of SE too but Moffitt MO just thinks there is more wear and tear with dual therapy if one is not needed - says his patients are typically "okay" with dropping it. He admits though, there is no real data on this, which is why I am sharing the topic here. Muscle demise is getting me down.

[Tall_Allen in reply to jackwfrench]

But what makes him think there is a dangerfor you of long-term side effects? After all, you are getting regular bloodwork and BP. He is certainly wrong that his patients who drop it are OK- it's been proven that Zytiga improves survival. It makes no sense to me to drop something that lengthens survival and has no current adverse effects for you, You can always drop it if you experience adverse effects. It won't keep working forever - why get rid of it while it's working?

[jackwfrench]

Zhang is excellent. He was only referring to patients that are under excellent PSA control like me. Abi only suppresses the adrenal component of testosterone or like 15% whereas Lupron does like 85%. Dual therapy strategy is still SOC excellent w Lup and Abi/pred if the PSA is climbing as mine was in the beginning. So then if PSA starts rising again after subtracting abi, can add abi back in - kind of a hybrid adaptive or intermittent just with the smaller component of testosterone suppression. My Hopkins MO gets the thought too - he just cautions that we have no data on trying this. I am probably going to wait until I've been dual for a full year with no rise before considering it in September.

[Tall_Allen in reply to jackwfrench]

Depending on PSA to make such decisions is certainly a mistake. Remember, both abi+ADT and ADT-alone suppress PSA, often completely. What was discovered, however, is that progression was delayed and survival increased by the combo. What we learned from this, and similar trials, is that reducing the the amount of cancer has a bigger effect than the evolutionary selective pressure toward resistance. What you are proposing almost guarantees that the evolutionary selective pressure will dominate. Also, the resistant cancer cells may be a low PSA subtype.

Think of it like bacterial resistance to antibiotics. The one thing you are cautioned never to do is to stop and restart antibiotics. Stopping too soon would assure that the most resistant bacteria will grow and dominate. Then, by restarting the same antibiotic, you kill off only the susceptible bacteria, leaving more space and nutrients for the resistant bacteria. You would thus make the bacterial infection worse than if you never tried the antibiotic. You are proposing a similar strategy with Zytiga. It may be very dangerous.

[jackwfrench in reply to Tall_Allen]

I see the pro dual stats, but no explanatory conversation of this nature. But I do agree it may be dangerous. Thx

[Tall_Allen in reply to jackwfrench]

The "explanatory conversation of this nature" are the hypotheses explored by researchers going into those trials.

[dhccpa in reply to Tall_Allen]

As you can see, though, individual doctors seem to struggle with some of these studies as we patients do.

After all, he has one doc at Hopkins and one at Moffitt offering different degrees of support for continued Abi. Seems surprising at these "centers of excellence."

[jackwfrench in reply to Tall_Allen]

I shared your description/analogy with my Hopkins MO, and granted that we are talking theory, he likes it. More credit to you. Thanks.

[JohnInTheMiddle]

I have been on Abiraterone for 2 years no problems. Also for ADT it's the androgen antagonist Firmagon / Degarelix. (Also did Docetaxel chemo). Fatigue yes. And regular blood work. No big problems. The big list of side effects??? - I have not run into anything - but it's hard to say how I would know. The side effect of cancer progression is my concern - and resistance. But you don't seem to be talking about that. What about switching from Lupron?

[timotur]

I dropped Abi six months into an 18-month ADT regimen and stayed on Lupron for the duration. I dropped it due to consistently high BP of around 150/98, up from 110/70. My PSA at the time was <0.01 after HDR-BT + IMRT. Target T of <12 was maintained throughout. When I stopped Lupron in Oct’20, PSA never got over 0.04 and has been undetectable now for about 3.5 years, thus so far, it doesn't seem to have mattered that I dropped Abi. Also, be aware there's some studies showing an association between long-term 2nd-level ADT and treatment-emergent small cell PCa.

[PELHA in reply to timotur]

Are you still on the Lupron alone?

[timotur in reply to PELHA]

I've been off Lupron since Oct 2020, so about 3.5 years.

[jgsdone in reply to timotur]

Good conversation here and really struggling with the Abi decision myself, been on it for 8 months, PSA undetectable but blood pressure and blood sugar seem to be uncontrollable by meds.

150/75 average on 2 BP meds and 120 glucose tested this week, on 1000mg Metformin.

Very tempting to go off it to see, but serious pros and cons.

[timotur in reply to jgsdone]

My Uro didn't approve going off Abi, it was a self-made decision based on my thought that there just wasn't that much there to treat with undetectible PSA, GL-7, and target T < 12 (remained so on Lupron)... same reason I didn't do early chemo. It's a very individualistic decision.

[jackwfrench in reply to timotur]

It sounds like we have similar mindsets on this - I also did not do early chemo. Though I also take Valsartan, my BP is considered high 140-160. If you come across any of those studies of showing an association between long-term 2nd-level ADT and treatment-emergent small cell PCa I'd like to read one. Thx

[timotur in reply to jackwfrench]

Aagarwahl has been involved quite a bit.

pubmed.ncbi.nlm.nih.gov/248...

[Concerned-wife]

thanks for sharing and initiating Important discussion

[jfoesq]

I have been on Abi, Pred and Lupron for 12 years except for the 3 “vacations I took during the first 5 yrs, each one of shorter duration than the previous one. Of course, there are side effects that I don’t enjoy (I.e. loss of sex drive, muscle wasting, “manboobs”….) but I feel the trade off of living longer to be well worth it.

[j-o-h-n]

Get yourself a buffalo nickel and flip it for heads or tails......Always choose heads and you'll always win..... Reasoning: Indian head on one side or the head of the buffalo on the other side.

Stay the course Boss.....

Good Luck, Good Health and Good Humor.

j-o-h-n

[chefjlu]

I just ended 2 years on Abi/Pred + Lupron. I have a maternal family history of diabetes that does not impact me. I also have a Mitral Regurgitation and periodically undergo testing to measure e-fraction and heart issues. I also have a tendency (since birth) to run anemic. Throughout the ADT run of 2 years I was regularly having doctor's visits (PCP, MO, RO, Cardiologist, Dietitian), blood tests, adjusting exercise/activity and diet if and as needed. My heart has seen no impact, diabetes - zero, Blood Pressure (I take 1 medication) - no impact, Kidney health - excellent, Liver tests - excellent. My main side effects - mild hot flashes, bit of fatigue in the final 3 months or so, bit of soreness in lower back in final 3 months or so. I have bounced in and out of anemia, but dietary changes corrected. I believe regular conversation with my doctors helped tremendously, awareness and adjustments as well. ---- Yes, we all react differently, but I can add that I have helped several men in a support group to adjust their diet and activity levels as well as stay in contact with their doctors in between visits if needed. Everything I have read, every doctor (including cancer center doctors) have agreement in the importance to 2 years. If you have medical issues then yes consultation with your doctors and alternative treatment methods are called for. Has 2 years been a wonderful piece of cake? Not always, but a positive attitude, good support, and a great team of doctors have smoothed it out.

[jackwfrench in reply to chefjlu]

Unfortunately I have been told I will be on ADT rest of life due to multiple small tumors external to the pelvis.

[jackwfrench]

So you simply stopped abi and Lupron? what went into that decision? Thx

[chefjlu in reply to jackwfrench]

Fully in conjunction with my MO and in consultation with other Drs. at Roswell Park Cancer Institute. I had an RP in Feb 2019 and then almost 3 years no treatment. Small up in PSA led to PET Scan where 1 spot found in the pelvic area. Radiation w/ADT and things are looking good. Of course having had 1 lymph node positive following surgery there is still a risk that I will have a recurrence at some point in the future. I was lucky as no other metastasis has been found.

[Steel67]

have you considered switching to Nubeqa - better SE profile?

[jackwfrench]

Thanks for the idea, will probe!