MO in Orange County or LA?

[Spaceman210]

I would like to partner with a great MO for this, live in OC but can extend to LA County, UCLA, etc. Finding too many inadequacies or specialty bias with my current providers. Appreciate any recos of top people.

[Spaceman210]

Will check, thanks!

[HOPEFULSPOUSE in reply to Spaceman210]

Yes, do - my husband just had a tele-consult this past Tuesday and we are on a plane Monday heading out there (from NYC) for an in-person consult. They will email you a list of patients (3 pages) who are willing to be contacted to share their story. We have been in touch with several and we so impressed with what we learned.

[Spaceman210 in reply to HOPEFULSPOUSE]

Thank you and best wishes for great success!

[HOPEFULSPOUSE in reply to Spaceman210]

Thank you - will update as we have more info.

[Tall_Allen]

My list of top MOs in the LA area would be Tanya Dorff at City of Hope, Matthew Rettig at UCLA, Richard Lam at Prostate Oncology Specialists, Edwin Posadas at Cedars-Sinai.

[Spaceman210 in reply to Tall_Allen]

Thanks a lot!

[Jim_S_Boston in reply to Spaceman210]

I also highly recommend Tanya Dorff at City of Hope. She is very aware of the latest developments and very patient centered. Thinks ‘out of the box’. She is also active in cutting edge research. You couldn’t go wrong having Dr Dorff on your team.

[Spaceman210 in reply to Jim_S_Boston]

Very much appreciated!

[Schwah in reply to Tall_Allen]

All 3 drs (including Dr Lam) at prostate oncology specialists are great. All 3 are oncologists that do nothing but prostate cancer. And their bedside manner is great too. As a bonus they are almost always on time even tho I’ve never felt rushed asking them questions. They are in marina Del Rey. I also saw a couple of drs for second opinions at ucla and they were all awesome.

Schwah

[Spaceman210 in reply to Schwah]

Thanks!

[Spaceman210 in reply to Tall_Allen]

By the way Tall, as I am about equidistant when considering those experts (all significant traffic), do you know if any differ significantly in approach or access to latest research/meds, or one as good as the other in that regard?

[Tall_Allen in reply to Spaceman210]

They each have their pet clinical trials that they are working on (if you want to see them, enter their name in the clinicaltrial.gov search bar (if they are awaiting IRB approval, it may not be listed there), or go to pubmed to see what they've published about lately). They all know one another and keep up with latest developments (most are professors as well as clinicians) - you could not go wrong with any of them. I've met most of them and they are all impressive to me.

[Spaceman210 in reply to Tall_Allen]

Great, thanks a bunch!

[Spaceman210 in reply to Tall_Allen]

I have an app't with T. Dorff next month, thanks again - shortest commute for me. Met already with Chris King who grinned when I mentioned you. Getting some differences of opinion with other providers on covering lymph nodes or adding ADT with SRT as possibly radiosensitizing / helping with micrometastases vs. not being helpful at low PSA (Chris did not recommend, but a local R.O. did, as well as MD Anderson M.O. for the lymph nodes. I've seen recent studies on this, seems to be a tough call as well as timing.)

[Tall_Allen in reply to Spaceman210]

Dr King was not only my RO, he was my mentor. I think the world of him. Could you please state what your current diagnosis is? You may have said it, but I forgot.

[Spaceman210 in reply to Tall_Allen]

Sure, I hadn't been specific but have an apparent recurrence with PSA at 0.15 now, 9 years following RP of Gleason 6 with negative margins. I started on metformin and a beta blocker (carvedilol) in Feb. per the MD Anderson recommendation. Dr. King estimated current PSADT at about 2 years, as this year it hasn't changed too much from a year ago.

I just had an Axumin scan recommended in OC, but UCLA nuclear medicine researcher Dr. Czernin, who performs the PSMA-Ga68 PET scan assured me it would be negative. If I actually schedule SRT, they can get me in for a scan quickly per their trial. Not sure if I could just pay out of pocket in the meantime, but Dr. King wants me to wait for 0.2 (which would be nerve wracking) and have a better chance with both scans at guiding therapy.

My RP surgeon Dr. Ahlering is thoroughly anti-radiation but also is booked 5-6 mo out for an appt., so I am not waiting on him. I had seen Dr. Reiter at UCLA briefly who thought the PSMA-PET scan would also be useless, but Dr. Czernin said it can indeed detect at 0.1.

[Tall_Allen in reply to Spaceman210]

Thanks for the explanation.

The PSMA PET scan : yes it CAN potentially detect PC, but it only does in less than a third of cases, so it isn't likely to be informative (especially with your slow PSADT):

pcnrv.blogspot.com/2016/12/...

(A good question to ask Czernin - which he may not know the answer to - is whether a GS 6 is EVER PSMA-avid? Let me know what he says)

I definitely understand your quandary with a GS 6, good path report, but rising PSA. It MAY just be some GS6 that will never do much, sort of like men on active surveillance, but unlike them you don't have a place to biopsy in order to track progression. You can wait until you detect something, but is that a self-fulfilling prophecy? (i.e., by the time it's big enough to detect, there is some probability it may have metastasized). You may be interested in reading what we know about the behavior of GS 6 - it never directly metastasizes, but over time, it may progress into something that can:

pcnrv.blogspot.com/2017/11/...

It may be that you never need to treat it, just as most men on AS don't. But since you don't have a good way of monitoring it, you may want SRT for your peace of mind. if so, I think you can comfortably forgo ADT, as it has never been shown to increase cell kill on a GS 6. I think you can also comfortably forgo SRT to the pelvic LNs, given your low and slow PSA and your GS 6. You can always come back later and get them if it rears its ugly head later.

I don't really get why you are talking to Uros or MOs about this - it is not their job to know about SRT. That won't stop them from having opinions.

[Spaceman210 in reply to Tall_Allen]

Thanks a lot. I simply wanted to get the range of opinions/options and started with uro / MO since the RO's only do that therapy. Am aware of the upstaging potential as I had earlier been on 2 yrs of active surveillance, and indeed the last needle biopsy had come in at 3+4, though as I said the RP pathology remained 3+3 and was considered most likely correct.

I'm looking into proton therapy in San Diego as well and appreciate the links which I will read. The RO for IMRT down here had said the risk to intestines plus getting the full dose desired to the fossa was what drove his opinion to forego the lymph nodes, not that it wouldn't potentially benefit otherwise.

[Tall_Allen in reply to Spaceman210]

Well, yes - if there were no toxicity risk, one would treat everything. It's always a matter of potential benefits weighed against potential risks. Since there is little risk of LN invasion - why treat?

Salvage using protons is very experimental. I know Scripps has a clinical trial.

[Hidden]

USC Norris is very good . Dr. Pinski for MO

[Spaceman210 in reply to Hidden]

Thank you!

[Rsdutcher7]

We see Dr Nezami in that area. He’s actually an Epigenetic specialist not an MO. He has had great success with stage IV cancers of all types and is way ahead of his time. You have full access to him but almost everything is out of pocket. My husband is stage IV prostate.

[Spaceman210 in reply to Rsdutcher7]

Thank you...what kind of treaments or evaluations does he do?

[j-o-h-n]

to Spaceman210 et al:

Ain't this an awesome sight? (I really dislike the word awesome... butcha gotta say whatcha gotta say).

Be whatcha is and not whatcha ain't, cause if you ain't whatcha you is, you is whatcha ain't.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 11/24/2018 12:02 PM EST

[Spaceman210 in reply to j-o-h-n]

Thank ye!

[Rsdutcher7]

He uses Gardant360 (not covered) and normal labs/scans (covered) to evaluate each patient. He then creates an IV bag specific to your mutated cancer genes (somatic or germline, they all appear mutated in some way) and we initially received 10 IV’s (mon-fri for 2 weeks) and then he re-measures and comes up with a monthly treatment plan.

You can listen to him and YouTube videos. It is about $1250 per IV bag but we have seen many of his clients show up in a wheel chair with lots of pain and leave walking.

My husband has the BRCA2 (somatic) so we have learned it is rare with men, aggressive and resistant to many traditional treatments in the long run. He has yet to have a prostate patient become hormone resistant because IF necessary he combines a 4 week lupron Depot with 3-4 days of his IV’s and then doesn’t add more Lupron until absolutely necessary. My husband is 5 weeks into his first Lupron Depot with NO Lupron side effects yet. That is also a perk. This is Non-toxic treatment. My husband does have Mets in bones and lymph’s but NO SIDE EFFECTS from stage IV prostate cancer.

Also noted is he has not had surgery, radiation or chemo.

Just focused on Epigenetic support with GREAT diet, exercise, detoxing, etc.

[Spaceman210 in reply to Rsdutcher7]

I am so glad to hear that he is doing well, and thank you so much for the details!

[Spaceman210 in reply to Rsdutcher7]

Also I just saw this interesting partnership link on it: mdanderson.org/newsroom/201...

[tango65 in reply to Rsdutcher7]

How long has he been in this therapy? Do you know his PSA changes? Do you know what drugs are in the IVs? Did they tell you?

[Rsdutcher7 in reply to tango65]

My husband started in Oct. His PSA was 190 & has bone/lymph Mets.

Fast forward 2 months. PSA 19.5 and Gardant360 just showed mutations Un-detectable. (Sept 1.2% BRCA2, Oct 2.3%, Nov UN-Detetable). So we are seeing results currently.

The compounds in the IV bags are natural, from earth which means non-toxic and no side effects.

You can listen to Dr Nezami on many YouTube videos.

He speaks at cancer conferences but this one is him speaking at a church. youtu.be/emuP2SMkYzU(Not working as expected?)

[Rsdutcher7]

That’s so cool!

[Rsdutcher7]

Update. Sept PSA 160 and tumor (cfDNA) BRCA2 1.2%

Oct 190 and 2.3 %

Nov 19.5 and non-detectable.

It’s working so far!