MO recommendations at Mayo, Moffitt?

[jackwfrench]

Hello - After 7 months of ADT (Lupron/abi) my MOs are not offering anything but continuation until my PSA fails, so I'd like to network more; so please let me know whom you think are the best at these two places. Thanks in advance.

[Derf4223]

@jack You and I are in similar boats, except my ADT/ABI course will run 2 years and I am about 6 months from the end. CRPC is not inevitable. And even if it comes it is likely to be 10 years +/- your actual mileage, whence the treatment option landscape will be quite different.

So researching today's CRPC options is kind of a waste of time. Besides that, we are told to exercise a lot, the best medicine for all kinds of conditions including PCA. That will not change 10 years hence.

[JohnInTheMiddle in reply to Derf4223]

Derf and Jack - you have both hit on an important question. Which is sort of the how long can you stay on therapy before resistance hits? From a different angle I raised the same question in a thread with Max One (see below).

I'm coming up to my 2-year anniversary on Abiraterone and ADT (Firmagon/Degarelix). I also did the Docetaxel chemo, because chemo. In the context of living with chronic metastatic prostate cancer, I have a bunch of review meetings coming up now. I'm raising exactly this question which is "what can we do to put off resistance?" So far not so much engagement. And for sure I'm trying to push the exercise.

Derf, you mentioned you think this chronic-style metastatic prostate cancer might last 10 years. I know the stats are improving because people aren't reaching any kind of endpoint. But may I ask if you have some pointers to research on 10 years? 10 years before resistance? That would be very good news.

healthunlocked.com/advanced...

[jackwfrench in reply to Derf4223]

Hi Derf, what happens after 2 years for you? Well my hope is that something can come out that helps an HS guy push out the timeline because a year ago I was told HS lasts just 2-4 years. One MO -after I had a good reading - said, "5 years OS TOTAL". My Hopkins MO says "I stopped forecasting OS a long time ago because I too often ended up way wrong!" Yeah we are HS but there is seemingly no attention to true individual prognoses of CR and beyond as such because its too difficult, seems more like the world is saying "you're HS and thats good because ADT is good, duo is better, and if you need it, triple is better - but don't come back for any therapy adjustment until you are CRPC, and for OS assume you will last anywhere from 6 months to 10 years, or a few go 20. Extinction or Adaptive could be started in HS - a few guys are thrilled with adaptive for CRPC, but the stats and trials for starting during HS are nil. I just want to talk to key players and keep learning now.

[Concerned-wife in reply to jackwfrench]

You have a Hopkins MO…sounds like you are in great hands

[Derf4223 in reply to jackwfrench]

Its possible to be HS on ADT for say 2 years, then stop until PSA rises, and resume ADT while still being HS. I'm told much depends on your PSA while on ADT+Abi. If undetectable the whole time, the prognosis is very good.

[Still_in_shock]

If Lupron/abi is working, then MOs will keep you on it until castrate resistance.

Exercise, and proper nutrition will absolutely push the wall further.

[hopefull99]

I was diagnosed with metastasized PC June of 2022 and put on Lupron and abi. MO classified my treatment as palliative and his strategy was to keep the course until ADT failed, then try the next treatment.... etc

I was not happy with the strategy so got 2nd opinion. New MO offered radiation and after a while indicated that I might get of ADT. I went through radiation (prostate + 3 mets) and looking forward to get off ADT in June, the 2 yr mark.

MO also empasized exercize as very imporant, particularly resistance exercise.

I realize everyone is at least slightly different, but moral of the story ... get a second opinion.

[RoseDoc]

Hi;

I have been seeing Dr. Kwon for several years now. I have the highest opinion of him.

Dr. Sartor is also a good choice though I have not seen him. Both are at Mayo in MN.

[jackwfrench in reply to RoseDoc]

Thanks - I have watched a few videos and like Dr Kwon and I am sure he is just fine for many, but my Hopkins MO claims that as he is a urologist and not an oncologist, he is likely not right for me.

[RoseDoc in reply to jackwfrench]

It makes no difference, in this case. He only deals with PCa, does not operate. He is considered one of the world’s top experts.

I have seen others on this forum say the same thing. They aren’t physicians so, perhaps, don’t understand and just generalize.

[jackwfrench in reply to RoseDoc]

Good point, but how does he help you then, does he point you to other specialists to execute therapy? Jack

[RoseDoc in reply to jackwfrench]

He executes most himself, unless you need interventional radiology, surgeon, Rad Onc. He does as much, or more, as an oncologist. Chemo can be arranges at a site close to your home.

[RCR38 in reply to jackwfrench]

He had an entire team he works with. They don't follown the typical standard of care programs that are palliative based. They attack the genetic side and concentrate on eradication from every angle.

[lowT163 in reply to jackwfrench]

He is a urologist but treatment for pc is drugs so he knows as much as anyone

[maley2711]

so, there is a group who say chemo earlier, not later! Discuss with MO...and chemo better the younger you are. The kitchen sink approach.

[jackwfrench in reply to maley2711]

Yes in the beginning Hopkins MO was more pushing the chemo, but if PSA returns (been <.1) he will likely push that again, he thinks my double CHEK2 gene variant is a significant weakness. However as far as right now, he says "no value" - but Moffitt (Zhang) thinks it could be used in an "extinction" effort now - again no results data. Thx

[Cali3 in reply to jackwfrench]

Who is your MO at Hopkins?

[jackwfrench in reply to Cali3]

Otis Brawley

[RCR38 in reply to maley2711]

At 56 yrs I was Stage IV with mets only visible in pelvic nodes, did RP and they threw the kitchen sink at me with immediate Lupron, Chemo, and Radiation. Did Lupron 2 years was undetectable so asked to take a holiday. 18 mo holiday PSA started rising. At 2 years holiday 7 new mets throughout my body. New MO wanted Lupron and Xtandi. I declined Xtandi and began Lupron. However I do want some other options so flying to Mayo next month. At 5 years in the treatments have caused constant damage, and I felt normal off Lupron. Appreciate your stories!

[jackwfrench in reply to RCR38]

Helpful story! Are you going to see Sartor, or Kwon?

[RCR38 in reply to jackwfrench]

Kwon

[jackwfrench in reply to RCR38]

Nice. Would like to hear more at some point !

[MoonRocket in reply to RCR38]

Curious. Why the avoidance of xtandi? If I had my choice, and we do now since the EMBARK trial, mono Xtandi is superior to Lupron. I am now on mono-Xtandi and I really don't notice a difference. I work FT in a highly competitive group of sw developers and I hold my own. I just turned 58 in Feb so we are nearly the same age.

[jackwfrench in reply to MoonRocket]

In my case, my MO rathered a start on Lupron over Xtandi for 2 reasons - you can go to Xtandi if Lupron fails, but not the reverse. Also I had a Vertigo bout last year (just one in my life) and Xtandi is more prone to balance issues.

[MoonRocket in reply to jackwfrench]

EMBARK showed the mono Lupron is inferior to mono enzalutimide (Xtandi). If you have other conditions that Xtandi could impact, like balance issues in your case, the Xtandi may not be indicated. Ideally ADT+ Xtandi is superior to the mono therapies with slightly more SEs. If choosing a mono-therapy, enzalutimide is superior.

[RCR38 in reply to MoonRocket]

So this is interesting because my first treatment before my holiday was just Lupron after the triplet kitchen sink. My PSA was undetectable for two years on stand alone Lupron. Now seven small metastasis in nodes so time to start treatment again. Howeve this time a new MO wants me to use Lupron and Xtandi. I asked just for Lupron, and she states they must be used together? I started the Lupron but refused the Xtandi. They required me to sign a medical release because I refuse the standard of care.

[MoonRocket in reply to RCR38]

Maybe having a discussion with your MO about switching to mono enzalutimide (reference the EMBARK Trial). Recognizing that mono treatments are inferior to doublet treatments, I choose the superior of the mono treatments, ie mono enzalutimide.

[RCR38 in reply to maley2711]

I was 55 when diagnosed and did the kitchen sink approach. It did not work from a cure standpoint but did make PSA undetectable for 2 years. I will say the sise effects from the radiation have been the most bothersome throughout the last five years. Fistula, bloody stools, urine, burned bladder produces urinary blood clots that block the urinary tract. That seems to be resolved after a surgery and 6 monthnof hyperbaric diving.

[maley2711]

It seems you were oligometastatic before ADT, so RT +ADT has/had the posibility of a cure...not sure how that would work now that the 2 lesions aren't visible on scans> I agree with seeking other opinions....Medicare will pay? Some folks would even still advocate full treatment of the prostate... I guess whynot, since already a victim of ADT? Google or pubmed treatment /study/conclusion for oligometastatic PCa.

[RCR38]

Jack- In my opinion the best Prostate Cancer Dr. is at Mayo on Minnesota. His name is Eugene Kwon, he has several videos on Youtube including the Prostate Cancer Survival Guide which addresses your exact question if palliative care approaches- kicking the can down the road. He works closely with PCRI that also has a great deal of short videos with great info on youtube. You can search and just watch relatable topics.The Dr. Mark Scholz founder of PCRI is also extremely knowledgeable.

[jfoesq]

ADT and abi lasted 9 years (and more) for me. And- it has lasted longer for some who post on this site. I was DXd in June 2022 with PSA in mid-30s or maybe even 40s with about 4-5 bone mets. I spent about 9 years on Lupron and Abi before PSA became measurable (MSKCC in NY doesn't measure below .05).(In addition, my largest tumor was radiated in 2014 and I had my prostate removed in October 2012, a few months after DX.) When my PSA hit .36, my largest tumor was radiated again, which gave me a few more months at below .05. PSA has been rising for about a year now and was at .14 about a month ago. When it reaches .20, I will get another PSMA scan so MO can review tumor growth and decide what steps to take next. I will reach 12 years on June 22nd.

Good luck!

[dhccpa]

I saw Winston Tan at Mayo JAX and Manesh Kholi at Moffitt several years ago, back to back, for second opinions.

Kholi, newly arrived, soon departed Moffitt for Utah. Interestingly, Dr. Tan told me to add chemo OR Zytiga, whereas Kholi said to continue with Lupron only (at that time in 2019, I had been on Lupron only for one year).

After those consults, I stuck with my local MO in Daytona although I'm always looking around for someone promising in this area.

[jackwfrench in reply to dhccpa]

Yes I do think the individual matters despite the firm reputation. Sartor and Kwon seem okay at Mayo for me. I am going to meet withJingsong Zhang at Moffitt as I have been exchanging emails and he and BobGatenby have been working with adaptive. I would have thought Dr Tan would have made a clear recommendation.

[dhccpa in reply to jackwfrench]

Tan was specific but his recommendation differed from Dr. Kholi and my MO. Not right or wrong, just different.