MO Recommendations NY area

[Ptripp2]

Hi all,

We are seeking a second opinion for my dad who has metastatic prostate cancer (bones), 4+3=7 Gleason and PSA of 4.4, was 23.4 last month prior to Degaralix. His current doctor is at Sloan ketterin but hasn’t been willing to entertain treatment options outside of hormone, ADT avenues. We are interested in someone open to things like cryotherapy (newly metastatic, low level) immunotherapy etc.

Does anyone have recommendations of how to locate some doctors more open to all the options?

[Tall_Allen]

What makes you think that cryotherapy and immunotherapy in his situation?

[Ptripp2 in reply to Tall_Allen]

Our interest is discussing if they are viable options because we would like to do all we can to beat the odds. Not sure they are options but looking for someone who can discuss all options and why he may or may not be a candidate for them all. We plan a second opinion regardless but his doctor has been pretty vague and limited in explaining or answering questions and we are looking to better understand every possible option.

[Tall_Allen in reply to Ptripp2]

But why do you think cryo or immunotherapies are "viable options." As far as I can tell from your post, they are not. MSK is as good as it gets. If he is newly diagnosed with more than 3 metastases, his options are1. ADT+docetaxel

2. ADT+abiraterone

3. ADT+enzalutamide

4. ADT+docetaxel+darolutamide

5. ADT+docetaxel+abiraterone

If he has ≤3 metastases, his options also include prostate radiation.

Those options are discussed in this article:

prostatecancer.news/2017/06...

[Hidden]

Have you looked in to New York-Presbyterian Hospital-Columbia? It's worth a quick look. Sometimes you can find the doctor your looking to confer with in unlikely places. I did.. I have heard of a few positive responses from patients. Good fortune to you all.

[Ptripp2 in reply to Hidden]

Thanks! I actually had NY Pres written down as an option because I see there are some pretty big names there actually.

[tango65]

I would look into starting ADT plus abiraterone or enzalutamide and find a place in Europe or India which will be willing to do Lu 177 PSMA in a castration sensitive patient.

Lu 177 PSMA has been shown to prolong life, it is a systemic treatment and it may be more effective than chemo according tot he CARD trial.

If I had less than 4 mets I would also consult with radiation oncology to see if it is possible to treat the primary tumor.

[Ptripp2 in reply to tango65]

Thanks! We’ve already started looking into where to get LU177, so my dad is working on his passport. And Friday we have an appointment with a doctor from Cornell to discuss cryotherapy. This is rare I think for metastatic in the US but research seems to suggest for bone metastases it can be helpful in increasing time to castration resistance.

I’m just trying to look outside the box. I appreciate the info.

[tango65 in reply to Ptripp2]

If you want to destroy the mets, you could talk with a RO for direct therapy with SBRT.

The Oriole trial showed that SBRT treatment of the mets in oligometastatic patients may offer some advantage in delaying the progression of the disease.

jamanetwork.com/journals/ja...

SBRT is not an invasive treatment like cryotherapy.

There is a clinical trial a MSKCC for hormone sensitive patients which use SBRT and Lu 177 PSMA treatment. Your dad does not qualify but you can get an idea of a treatment "outside" the box.

clinicaltrials.gov/ct2/show...

I wish you the best of luck.

[Ptripp2 in reply to tango65]

Thank you! His Mo is at MSK so I will ask tomorrow. These are the kinds of things we a lot interested in.

[tango65 in reply to Ptripp2]

Most probable they will not agree since is not the SOC.

I believe in India they treat with Lu 177 PSMA castration sensitive patients and also in Austria

fmri.in/doctors-profile/ish...

[e-mail]

[e-mail]

Try to get a good RO to discuss the treatment of the primary tumor and the SBRT to the mets between Lu 177 PSMA treatment if you want to follow the protocol of the trial. The RO will guide you about about hormone therapy along with the radiation treatment.

The Stampede trial showed an advantage in failure free survival and overall survival by treating the primary tumor in oligometastatic patients.

thelancet.com/journals/lanc...

You need to be aware that you are going outside the SOC which has shown to prolong overall survival.

[Ptripp2 in reply to tango65]

By RO you mean radiological oncologist? And then for SOC what do you mean?

Sorry I’m still learning all the abbreviations. But trying to suck in and organize all this info.

[tango65 in reply to Ptripp2]

RO is radiation oncologist and SOC is standard of care.

I understand what you are trying to do. I have been out of the standard of care using clinical trials, except when I went to Germany for Lu 177 PSMA treatment in 2016.

It was my decision, no doctors were involved and I finally got accepted in Munich even when the cancer was castration sensitive. So far the different treatments have been working for 20 years after the initial diagnosis of the cancer.

[Ptripp2 in reply to tango65]

Do you know if there are any advantages to getting Lu177 during castration sensitive versus castration resistance? Is getting it early on more helpful. Knowing it was just approved here but he probably wouldn’t have access for years.

[ishitasen in reply to tango65]

Yes agree with Tango65, ADT with or without Abiraterone should be the first step. If the metastatic disease is oligometastatic external radiation both to the metastatic sites and the prostate gland may be the preferred modality. Would hold back lutetium for a little later since the disease seems to be responding well to ADT and the PSMA receptors would be down regulated right now.

[LearnAll]

First of all, remember that prostate cancer is a heterogenous condition. This means everyone's cancer is different in subtype and aggressiveness. First step is to ascertain how aggressive your father's cancer is...it can be done by checking biomarkers, scan findings, pathology, germline testing and clinical behavior of the prostate cancer. Why you are given diametrically opposite opinions on this forum? Because members who assume that your father's cancer is very aggressive...they suggest very strong, heavy treatments. Members who assume your father's cancer is non aggressive ..suggest milder (ADT) as initial treatment with plan to upgrade treatment in future. This is called sequencial treatment. All advice is inaccurate until you find out true nature and degree of aggressivity of your father's cancer. My only advice is that try to find out true nature of his cancer and then, design treatment accordingly.

[Ptripp2 in reply to LearnAll]

According to his doctor notes and how we staged it in Scholz book, it is aggressive. And hormone treatment has only dropped his PSA to 4.4.

[LearnAll in reply to Ptripp2]

PSA dropped from 23.4 to 4.4....in just one month...That's a very good response. Its too early. The most important landmark will be PSA at 9 months. The lower the PSA goes down and Slower it goes down..that is excellent response.You can not judge a treatment response just after one month. Read about Nadir PSA .

[Ptripp2 in reply to LearnAll]

That is nice to hear. We are definitely learning, you’re right.

[LearnAll]

Ptripp2, Do not believe what these "ivory towers' of unlimited profits tell you...These are all shops to sell their expensive products. I was told by one such shop that I might live for 2 1/2 to 3 years. On May 15 ,2022, I will be completing 3 years and I am alive and kicking..working full time, walking/running 5 miles a day and loving life.Make sure to tell your Dad that appropriate treatment of prostate cancer includes anti cancer, anti oxidant, anti inflammatory foods, minimum or no use of animal fats (prostate cancer grows by eating fats. Weight control is absolutely necessary.. Aim for BMI 22. Heart healthy foods are also prostate healthy foods. I suggest you read previous posts about comprehensive/complementary treatments by big names like Nalakrats, Pjoshea, LearnAll and many others. Men with bone mets live from a minimum of 2 years to as long as 30+ years. Check profile of Magnus ..he is dealing with disease for over 28 years.

[j-o-h-n]

How old is your Dad and who are his doctors at Sloan?.....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 03/09/2022 10:40 PM EST

[Ptripp2 in reply to j-o-h-n]

He is 70, and he has had 2 appointments with Dr Lacetti (his MO) the urologist was Dr Kolmier, and he saw an integrative specialist named Dr Latte.

[j-o-h-n]

Thank you for the info..... I happen to be a paYtient of MSKcc and I wanted to know if I had heard of your dad's doctors. I have not, my MO is great but hard to see. Mine is Dr. Michael Morris in NYC at 68th Street (near First avenue) -Kimmel center. Regards to your Dad and tell him to hang tough.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 03/09/2022 11:32 PM EST

[Ptripp2 in reply to j-o-h-n]

Thank you. Yeah the jury is out on our MO. A lot of people here I think, think I’m dissatisfied that he isn’t doing enough. But I’m dissatisfied that he isn’t EXPLAINING enough. But it’s not my decision it’s my dads.

Thanks for the support, you hang in there too!

[j-o-h-n]

BTW my son's nickname is tripp...... 3rd John in the family. Single, double, tripple......

Tell the doc you need more explaining about your Dad's condition and plan(s)....(MSKcc is the best, believe me)....The doc owes you that at least.......(women have it over us when it comes to doctors and medical shit)...........

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 03/10/2022 2:21 PM EST