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Advanced Prostate Cancer
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MOs for some perspective and second opinion??

Gleason 7 (4+3, and some 5). I had recurrent oligometastatic PCa after RP and salvage radiation. We zapped the met with SBRT and I’m currently on Lupron and Casodex.

I have a very smart MO at Dana Farber in Boston, but he is “conventional.” He wants to try six months of ADT and see what happens. I asked about Metformin and he said no good evidence. Hmmm. I see him again in June and will ask about Avodart, Proscar, etc.. and also about Zytiga, Xtandi, and others instead of or in combination with current ADT, but I suspect he will waive them off (maybe for good reason - I don't know). I’m also interested in early chemo intervention as that may provide a survival advantage.

I have seen several MOs mentioned here in the last few months – Sartor, Sholz, Amato, Hussein – who seem highly regarded, think outside the box, and may be more aggressive.

Does anyone have recommendations for an MO that would be good for a consultation, perspective, and second opinion? Basically, how do we decide which drugs to use when and in what combinations, how long, intermittent or continuous, etc...?

Thanks,

Josh

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Where do you live---Dana Farber---> they are pretty darn good. Olio. is usually treated differently--and I do not have an opinion---but--when on ADT IMO---I always would want Avodart--in my case I use both Avodart and Proscar to prevent DHT formation--with DIM and Arimidex to keep E2 down at about 20. And as for Metformin--many MO's are not up to speed---suggest you go to Google--and search Metformin and Prostate cancer---print off the Papers that support its use and bring to your next visit---and drop it on him---highlight the key points.

You can go to Pub Med--and get the NIH Papers that support its use, also.

Nalakrats

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I live in Maine.

Yes, Dana Farber is good and I am impressed with the MO and team. I just have a sense I could be doing more... like the Metformin and Avodart and want some more opinions and confirmation instead of my own determination of validity.

I have seen plenty of supporting documentation for Metformin and prostate cancer in this forum and other places that I am definitely inclined to add it. Ditto for Avodart/Proscar. I have a folder of pubs and references. Yet, I like my MO and value his opinion and want to be respectful. I don't know what I don't know.

Thanks!!

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What I do is I have an Integrative GP. And an open minded Urologist, to go with my standard of care MO. I am educated enough and experienced in Naturopathy for 50 years--and I use my Uro and GP, for what drugs I want, and I do my own program.

I have plenty of back-up proof, including the results of my own person with this disease.

So my MO who finds out, what I have added just says, "well you are doing an extreme standard of care". I cannot advise you to do what I do--as I am not a Doctor. But I am not interested in dying right now, for lack of a Doctors intransigence.

Nalakrats

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I also think there is plenty of merit to a complementary naturopathic approach and see no reason why we can't do both allopathic and naturopathic. They are not diametrically opposed, but I want to be careful about seeing meaningful patterns in meaningless data too.

Thanks. Stay well.

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More than the instution it is always the Doctor. That said it is hard to beat Dana Farber in the northeast, If you were halfway to NYC, I would suggest Dr Oh at Mt Sinia, He was my MO at Dana , when he was there,IMO a very compassionate and heavily research Dr. Just googlescholar WK OH and prostate Cancer and see how many hits you get. If you need a paper on use of dutasteride avodart here is a study called KHAD done at DFCC showing increased time to progression when adding avodart dutasteride to former adt drugs. Maybe show to DFCC Medical Oncologist. scholar.google.com/scholar?...

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Thanks. Yes, I believe I am good hands at DFCC and feel fortunate to have a world-class MO a couple hours from my home. Perhaps it is the psychological/emotional desperation to find a solution to this disease that keeps us shaking the bushes and always looking for more with the hope (perhaps false rationalization) that we can find durable remission.

I intend to stay with DFCC, but will add Dr. Oh to my list a someone who might offer perspective and perhaps expand the knowledge base of treatment options and protocols.

Best regards.

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May I ask who is your MO at DF? I doubt that you will find better. If you listen to the drug pushers on sites like this you will get a very slanted view. On Metformin, for example, see my recent reply:

healthunlocked.com/advanced...

Avodart was proven to be useless as part of the protocol of salvage ADT when it was put through a prospective randomized clinical trial by one of its early proponents (Klotz).

Your MOs at DF have studied the natural history of PC progression and have learned a few things you may not be aware of, like:

• Earlier is often, but not always, better. As cancer cells go through their genetic breakdown, they become susceptible to medications that wouldn't do anything if used earlier. Good examples are Provenge and docetaxel.

• Combining medicines can sometimes have adverse consequences (e.g., Xofigo and Zytiga)

While you can now get Zytiga or docetaxel for metastatic hormone-sensitive PC, other medicines have not been approved for men in your situation and insurance may not agree to pay for them. You may be able to get into some clinical trials for men with metastatic recurrent hormone-sensitive PC, although I don't know of any that are actively recruiting. This is where it pays to talk to the top MOs at top teaching hospitals who know about upcoming trials. In addition to the ones you mentioned, my list would include Celestia Higano, Emmanuel Antonarakis, Eleni Efstathiou, Michael Morris, & Eric Small.

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Chris Sweeney at DFCC. Very impressive guy, knowledgeable, informed, and no doubt a leader in prostate oncology, but seemingly tied to the evidence-based standard of care. Not that there's anything wrong with that, but is there more we can do?

I believe I am getting a very high standard of care by Dr. Sweeney and team in the allopathic world they live in. As I responded above, it is not lost on me that perhaps it is the psychological/emotional desperation to find a solution to this disease that has me shaking the bushes and always looking for more with the hope that I can find durable remission. But that's how I'm wired and I'll keep shaking.

As an aside, I did have the good fortune of a visit with Dr. Antonarakis when I did a PSMA scan at JH last fall. Wow! Also a brilliant (and very personable) MO in my opinion. He said "you don't need me if you can see Chris Sweeney." A credit to Dr. A and yet another nod to Dr. S.

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I very much agree with Dr.A about Chris Sweeney - it doesn't get much better. One measure of how much they are exploring new territory is the number of clinical trials they are running. I just did a quick and dirty search of open clinical trials: Johns Hopkins and MSKCC are tied at about 50 each, the Harvard hospitals are running about 40, 39 at U of Seattle, 31 at Duke, University of Michigan and UCSF have 26 each, Northwestern has 23, UCLA and Karmanos have 21 each, Washington U has 20, U of Chicago has 19, Yale and UNC have 18, USC and Mount Sinai have 17, Roswell and MD Anderson have 16, City of Hope has 15... You couldn't go far wrong seeing the top MOs at any of those places.

There are thousands of substances being screened for prostate cancer and we're lucky if a handful make it to clinical trials. Everyone has their pet "out-of-the-box" panacea; doctors who promote themselves on the Internet, and sites like this one are full of them. Inspiration helps, but perspiration is what separates true and false. I guess anyone can throw thousands of turds against the fan and one in a thousand will stick.

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Dr Danel Shevrin at Northshore University Health System in Glenview Illinois was one of the authors of the Chaarted study that found evidence supporting early use of chemo with adt.

If you want an assessment of whether that is advisable in your case. I would go talk to him.

If you want a good internist who will prescibe metformin and understands Dr. Myers' approach in general, try Dr. Sobel in Chicago. He is affiliated with Northwestern Memorial and his office is on Michigan Avenue.

Sobel costs a flat $2500 a year. You get unlimited phone calls. He has never taken longer than 2 hours to return any of my calls. And he is so darn thorough, even more so than Dr. Myers, with much the same pragmatic approach to the practice of Medicine and clinical research... So thorough with an active and curious mind.

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Thanks. I have a retired urologist friend in Chicago who does not know Sobel personally, but also mentioned he has an excellent reputation.

I wish I had the resources to put all these brilliant minds in a room for a day to have our own mini-prostate oncology conference and listen to their discussion about the different approaches they use.

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jdm3: I am in a very similar "boat" as you, but with a GL-4+5 at the get-go. My Ga68-PSMA-PET-CT picked up a couple of metastatic pelvic lymph nodes just north of my previous IMRT salvage done 2 years ago. Have not done SBRT yet, still deciding on where and whether proton or traditional. But am back on Lupron and Zytiga. Tolerating then both quite well this time around (first time for Zytiga). I have been seeing Dr. Jeffrey Turner at Prostate Oncology Specialists (Dr. Scholtz's group) in the LA area. I have seen him since day ONE, right after my biopsy and diagnosis. They are a great team there. The fact that they are not connected with an institution such as Dana Farber or UCLA etc. but an independent practice of top line GU medical oncologists who only work on prostate cancer is significant. Even though I have had my RP and IMRT at UCSF, I continue with my outside med onc, Dr. Turner to get a non institutional perspective,

These guys (Prostate Oncology Specialists) are really dedicated and care about us. To address you "wish" of putting them together in one place - You should plan to attend the annual PCRI conference that they sponsor every year on the first or second weekend in September. It is the largest patient oriented Prostate Cancer conference in the world with excellent presentations by top doctors from around the world presenting the latest insights. All in plain understandable language - not "doctor speak". Some 800 men and their spouses attend each year. Very affordable. This is a conference for US, not a conference for the doctors to make money or sell anything. It is to inform and educate. I have been four years running now and gain great insight each year in terms of managing my own disease. Check it out on pcri.org.

PK

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Thanks for the info. Another endorsement for Prostate Oncology Specialists. There may be a trip to Marine del Rey in my future.

The conference looks very interesting. I may try to work that into the calendar.

JDM

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I use Dr Scholz at that same office. They are awesome and on top of all the latest. The chaarted study showed zytega and lupron together as an earlier treatment increased longevity by 40% and lupron with chemo increased life expectancy by 20%. These guys had me do all three for my ogliometastisis figuring if A + B is better than A or B alone and B + C is better than B or C alone then A + B + C might be even better. No studies yet and ucla told me they wouldn't allow it without a study. But they admitted it was logical and they'd like a study with all 3. Anyway I'm the study. Wish me luck.

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Thank you.

The aggregate/cumulative function sounds reasonable. The corollary question is whether there is any downside to doing this. Perhaps going through the playbook too quickly and running out of options? I don't know, but think I might make the same choice given the benefit/risk analysis to the extent I can understand it.

I wish you the very best for a positive outcome.

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Jdm3, from a non-medical perspective, I understand that a real good MO may have limitations place on them but their institutions or practice and that there are really two Types of MOs treating PCa. The first uses approved Standard of Care. This person's treatment limitation (whether it is knowledge, money, insurance, institution, or practice overrides in an effort of doing no harm or treating the with approved recommendations based on disease progression, health, age, and similar factors.

The second, is not in private practice as the major source of his income. He instead is in academia and research associated with major medical schools as a professor and has grants to support his research. This person is looking for new methods to treat this disease. Some proven by their research and some not proven, but indicators are present to continue using the treatment. Of course would have to sign away on forms and agree to the trial with no guarantee.

There is a very small third group and that is a former researcher now in private practice who uses what worked for him/her come high or high water. Again there is always a disclaimer that the treatment is not standard.

In my mind, it's not a matter of treating outside of the box, but changing a paradigm which is heavily influenced by the past.

I wish you good luck in finding what you want. In my opinion you will find that within the field of academia and research. The best advice that I ever got when faced with a riding PSA and mets, was from two ROs who were Air Force buddies. One was in private practice and had a "seed" business; the other, in academia and helped to develop IMRT. Both told me that any physician could treat me with Lupron to try and delay disease progression.

My question to them was simple, if you were in my shoes, what would you do? Both gave the same answer. Find the best MO available to treat PCa, not a generalist or one that also treats cancers like breast, lung, liver, etc. hopefully one in academia and research because they would be at the top of the treatment ladder. The one in private practice did not know one. The one in academia did. The rest is history and I have been most fortunate. Yet, not everyone in the trial did as well as me.

GD

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I agree. It is my impression that the best MOs, like the one I currently see, are up to date and in touch with the leading academics and researchers. They all refer to each other on a familiar basis. Yet, as you say, even if some MO knows of new research that may be helpful, they are reluctant to use anything that is outside the confines of clinical-evidence-based medicine or beyond the limitations of their institution.

Thanks.

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Generally, it is not institutionally possible for a Doc at a major medical center to do anything other than treat with generally accepted protocols.

If you want cutting edge medicine you have to hunt around for it.

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As a long long time survivor and one heavily involved in PC, I read your letter and far too many like it, and must advise, and perhaps this needs to be posted at the top of this site.

If you have recurrent prostate cancer, there is NO cure, there is no magic pill, there are NO drugs, NO alternative treatments that will cure you. You have potentially a fatal disease. It is common to far too many. It follows a path, or several, that if you live long enough, will probably be the cause of your demise. There is NO doctor who can wave a wand, and no drug combinations beyond HT that provide much in the way of time-and I stand to be corrected on how much extra time all of what we have today offers any of us. The last stages of the battle against PC, which is what follows the failure of HT in whatever combo you take it, is one of the most painful and destructive ways that one can leave the planet from.

Nothing you do, will change the course of what happens, once you enter into the final stage of this epic battle. One course of treatment may give you added time, but it is a mirage in terms of time, because as of now, what can be done to extend your life, is in weeks and months.

Do not spend the rest of your life looking for that magic that is not there. It is almost criminal how much wasted time, energy and life is bring expended by men and their loved ones in trying to do something that is impossible. It is also extremely expensive in all senses to go doctor shopping, throwing huge amount of money at everything but the kitchen sink, in order to get around the reality of having recurrent prostate cancer.

There is a regime to follow in the majority of cases. There are some great and knowledge guys on this site who will help you, but the fact is, your PC is not going away.

So, I suggest to all, find out everything you can, get onto some treatment modality as quickly as you can, live a better lifestyle by making a bucket list of things you want to do/and or accomplish and get on with living.

If we put all the money that I see wasted on men attempting to sidestep what so many thousands-now millions, have gone thru, it is maddening to me. If we put a large portion of our money into the best research groups, get on drug trials as quickly as they come out, that gents is the way to beat PC, probably not for us, but for those who come after.

As it stands now, I see the PC specialists spending far too much time in both defending and treating us. It is almost criminal. If there was a cure, they would give it to you. If they thought some treatment combo would make a big difference-because it actually worked, they would give that to you as well. PC is a deadly and rotten enemy, that ultimately, will claim most of us on this site, one way or another.

So, start to live, do not spend any more time on worrying about dying and get on with what time you have remaining. And yes, give generously to the researchers and to those you love-while you are still alive. Make a difference to others, is in my view, part of your legacy.

There are now many sites that provide bucket lists, start small, but get on with it. I have, and have taken many men on journey's of fulfilling their lists, or parts of them, and ALL have been enriched and their final days made better because they LIVED within the scope of the enemy within. Buy that bike and go for a ride or many. Take that trip to Machu Puchu, go see carnival in Rio, take that boat cruise down the mighty Miss, but get out of the house, anyway that you can and do something positive with your remaining day. That gents, in my view, is the best plan and way to fight our common enemy. He might get us in the end, but we will smile and laugh along the way!!!!!

God bless all of you and your loved ones!

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Thanks.

Personally, I agree with much of what you said.

Although there is no cure now, we can always hold out hope that there will be someday. I am not delusional enough to believe I can find the Rosetta Stone of prostate cancer and decipher the solution. However, I do believe that there are certain protocols, modalities, and and therapies (allopathic and naturopathic) that must work better than others and hopefully extend life years and not months. We would all like to be cured. In the meantime, I am looking for the best solution for me that will provide durable remission as long as possible.

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Me? I use laughter...

When I was in the middle of my 39 sessions of radiation a fellow patient approached me and commented "you're the happiest guy I ever met who's got cancer". I said to him "fxxk off".... (just kidding)... I told him this disease is not gonna prevent me from being me.

So I asked him what does a band of pygmies have in common with a girls track team? He didn't know so I provided him with the answer. "A band of pygmies is a bunch of cunning runts".

Good Luck and Good Health.

j-o-h-n Thursday 05/10/2018 5:18 PM EDT

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There is a lot this disease takes away from us, but it can never take our sense of humor. Thanks!

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You're welcome and keep on laughing....

Good Luck and Good Health.

j-o-h-n Thursday 05/10/2018 7:06 PM EDT

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