Elgie's Hopkins Consult

Hello Everyone 😊

I hope this note finds all of you hopeful.

We went too Elgie's consult with Dr. Eisenberger at Hopkins. I don't like waiting until the end of the story so I'll give you the end... we walked away feeling hopeful that lg is still in remission just because he said it.....no evidence though. He said lg could come to him if he becomes worse down the line. He told LG he does not follow any protocol that doctor Myers follows and no one else does either. Basically standard care. He talked a lot about Dr. Myers but really didn't say anything important.... I was not completely impressed although he was nice. He seemed very arrogant to others but we learned nothing from this appointment to back up the arrogance that I detected. He said Elgie should stop taking Finesteride, Ursodiol, Estradiol, Metformin, Turmerick and Resveratrol. He said no evidence that they help. Any thoughts on discontinuing these supplements or meds? He said Xtandi is just throwing money away. Elgie is not on Xtandi any more. He said lg looks good so he wouldn't worry. He made a comment about Agent Orange money coming out of his pocket. I wouldn't go back to him but I'm not sure what lg is thinking.

Most sincere good thoughts for each of you.

Hugs too 🤗

Jackie

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51 Replies

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  • Good news that everything is stable! I think I would just keep on with your current routine. Perhaps find a doctor that you can connect with. Take a moment to enjoy the colors and smells of fall.

  • Absolutely noirhole! All sound like a good plan. Thank you :) I hope you are enjoying the fall also ;)

    Jackie

  • Although Johns Hopkins is the number one Prostate center in the country, I do not like arrogant know it all Drs. that will not listen to what other Drs do know. All my Doctors are female, eliminates the ego problem ,they talk very well together and the local knows my case so well and the two of them communicate excellently with the younger local fast becoming an expert in APC through these communications. I was on ursodiol for 3 or 4 years after myers prescribed it for me, I stopped and since then my liver functions like a well oiled machine, always low numbers ,At the local I had to have a appointment with a gastro liver dr to confirm the usefulness of ursodiol , but maybe elgies LFT are good and he does not need it .As for finesteride ,dusteride/avodart has been found to block more DHT than any of the other drugs in that class, not sure what snuffys reasoning for that was, Myself , and you know my history have been on dutasteride/avodart the whole time since dx, basically a benign drug that knocks out the more powerful testosterone Dihydrotestosterone, and there is a study in New England Journal of medicine that showed increase survival before zytiga with Ketoconazole and dutasteride that showed increase response time considerable it is on google scholar under Taplin and KHAD (keto, hydrocortisone and avodart) as far as revesterol, this has long been known to be an excellent antioxident as has tumeric, and I think estradiol added 4 years to my life, those are just my thoughts , though I am not a Dr.

    Glad to hear Elgie got a good report. Snuff was such a good Dr. It will be hard to find a Dr. who can think out of the box like that.

    Dan

  • Such a good day! I hope you both take a moment to celebrate! 🌈

    Our best to you and Elgie!

  • Thanks so much James. We do celebrate every day ;) Every day is a gift! Good wishes :)

  • Hi Dan!

    I am so glad you're pleased with your crew ;) That makes such a difference. A lot of good input Dan. So much appreciate all of it. I hope your feeling well. Will surely miss Dr. Myers. It is sad that some.... have problems learning from others or thinking out of the box. Dr. Myers helped me to feel safer. His knowledge literally saved lgs life a few times. Unless something changes, we're okay with thinking happy thoughts 😎

    Big hug,

    Jackie

  • Hello, xtandi worked for my brother for a few months and had less side-effects than zytiga which also worked for a few months.

  • Hi chalaan,

    What do you consider a few months? Not to be cocky. Yost was on Z for 27, or so months, and I have been for 10 months, and with me, no side effects. My next step will be Xtandi. But, I'm curious as to what it did or did not do to your brothers PSA during these tough months. I wish your brother well.

    Joe

  • I've heard it works for some people. I was just a little shocked that he doesn't use it. So glad it helped your brother :)

  • Sounds like an interesting doctor and not one I would revisit. We all know it’s important to connect to our doctors in order to feel comfortable and confident they are working with you. Sometimes it takes a couple of tries to find the right one. I agree with the others, keep on the protocol for now until you find the right doctor and then as a team, you can make any changes to it. Best of luck to you and Elgie. Charline

  • Thanks Charline. NEXT ;) Definitely need to feel comfortable. How is Chuck? You?

  • We are doing well. Right now the Xtandi is working and PSA is < 0.01. Feeling very lucky and praying it continues. You know how it is, all is good, until it isn’t.

  • I'm so glad it is good right now ...one day at a time. I am so very elated that the xtandi I is working... doing the happy dance for both of you ♡♡♡ Add my prayers too :))

  • Thanks! Hugs. :)

  • I'm surprised that an Oncologist would say that taking Xtandi is "throwing money away". I'd run for the door if my Oncologist said that.

  • He definitely was not a fan of Xtandi. He said your lucky it made you feel so bad or you would still be throwing your money away. He didn't want LG as a patient anyway. He said he told Dr. Myers to stop sending him patients. Dr. Myers did not send us to him. Thanks Gregg. We're moving on.

  • Sounds like you'll be better off without this doctor.

  • I would move forward. Prayers to LG that he continues to do well.

    Nick

  • Thank you Nick. I hope and pray that you are doing well also.

    Jackie

  • Hi Jackie,

    What a d!ck. Xtandi is throwing money away? This sounds exactly like my first Uro, "You look good, therefore you are well". For christ's sake, he misread or didn't read my biopsy report, so here I am fighting off mets. It makes me sick to know that I had the possibility of being cured today, but for his foolishness. He's no longer practicing in New Jersey.

    Joe

  • Someone sent me a list of 54 responses to "You look so good". My favorite was "I clean up well".

    Another good one "That's a perfect example of how can never judge a book by its cover"

  • OK, how about this, "Yea, but my balls turned into boobs." Gross! Truth hurts.

  • Lol

  • Like to see the 54 responses Gregg 😁

  • I think I'll start a new topic.

  • You're cracking me up Joe.

    I'm sorry Joe :( I'm glad he's no longer practicing. I think there's many like that :(

    Jackie

  • This is a good example of why we all have to stay informed and DO OUR HOMEWORK!

  • Very very very true and this is also why we have all of you !!! No longer trust for the of the medical oncologist prostate cancer doctors

  • To me a doctor is one of our "advisors". We have many advisors and most doctors are good advisors, but some are not. But ultimately we make the decisions. I made sure my doctors understood that clearly.

  • It is great that things are stable! That is the most important thing! Hope the two of you have a great celebration dinner! 🥂🥂🥂

    It sounds like the doctor is a little full of himself. I would not go back to him. As far as the supplements go I am a firm believer in the risk/award system. Outside of the cost there are no real negatives for taking them but they may help. I see no negatives for continuing. Just remember that they are supplements not front line treatments.

  • agent orange treatment is paid for by Dow and Monsanto. This guy needs a civics lesson.

  • I didn't know that about who is paying. Thank you.

  • Please give me this guys work address so I can go kick his arrogant ass.

  • Get out some frustration ;)) nameless 😠

  • Did you say Dr. Smuckberger?

    Good Luck and Good Health.

    j-o-h-n Friday 09/29/2017 9:39 AM EST

  • Lol

  • Hearing that you are in remission is always good news, even when coming from an arrogant doctor. I wish LG many more years of remission. Unfortunately, Dr. Eisenberger is more representative of the medical community than not. I have seen a similar attitude from a nationally recognized PCa doctor who believes only in evidenced based medicine. Another doctor, from one of the best cancer hospitals in the country, told a friend of mine to come back when he was much sicker because there were several drugs that would really work well at that point. He went to see Dr. Myers 14 years ago and is in remission today.

    Dr. Myers practices medicine both as a science and art. He once told me that if all of the current knowledge about cancer was utilized, it would considerably change cancer outcomes. I think that gives great insight into the way he practices medicine. I would never be a patient of a doctor who is critical of his accomplishments.

    I have more or less given up on the hope of finding another Dr. Myers. Instead, I am looking for an accomplished PATIENT CENTERED oncologist who is up to date on Pca drugs and treatments. In other words, a competent physician that I can talk to. I figure that’s about the best I can hope for under the circumstances.

  • I guess that is about all that any of us can hope for now . I'm just wondering if LG decides to stay on all of those medications if we can find a doctor to prescribe them .I hope you are doing well and you will Find a doctor that you are comfortable with also .

  • Hi Jackie,

    You wrote: "He said he told Dr. Myers to stop sending him patients."

    Perhaps he has as many patients as he can handle? Or perhaps he can't handle Dr. Myers patients - who have been exposed to less rigid protocols?

    "He said Elgie should stop taking Finesteride, Ursodiol, Estradiol, Turmerick and Resveratrol. He said no evidence that they help."

    Myers spoke frequently of Avodart (i.e. Dutasteride, rather than Finasteride) in his vblog posts. Some men produce DHT even when castrate. If Dr. Eisenberger does not test for DHT in ADT cases, that's a black mark against him in Dr. Myers view.

    Ultimately, one expects resistance to ADT. One of the escape paths is the production of DHT other than via T. It does no harm to be on Avodart as a precaution, but Myers' approach was to prescribe Avodart based on serum DHT numbers. He said that this might require as little as a weekly dose. He was partly concerned about the cost of unnecessary doses, but this was before the drug became generic.

    I'm not sure that a blood test can say much about DHT in PCa cells, though, so I take Avodart anyway.

    According to Anthony Loera at RevGenetics, Dr. Myers had discussed curcumin with him a few years ago. Anthony ultimately developed a product that he touted as meeting Dr. Myers' requirements. I doubt that Myers ever recommended turmeric if that's the case.

    I use LongVida (as in CurcuBrain). It can pass the blood-brain barrier, so is proven to be bio-available.

    The RevGenetics product that Dr. Myers did recommend (as I understand it) was the resveratrol product Nitro250. Myers has said that he noticed benefit even in his CRPC cases.

    Presumably, by 'estradiol' [E2] you mean low-dose for bone health. I think it incomprehensible for a doctor with castrate-level patients, to be unconcerned by low E2 levels. Anything <12 pg/mL is likely to lead to osteoporosis. Perhaps Eisenberger has that covered with bisphosphonates? LOL

    I can't speak to Ursodiol.

    "He said Xtandi is just throwing money away."

    Is he against the use of anti-androgens? Or does he believe that Xtandi has no advantage over Casodex? Perhaps the latter?

    -Patrick

  • I don't know the answers to your questions or thoughts Patrick but I found all of your information quite interesting even though I didn't understand parts of it . He said LG should be drinking soy or eating soy products instead of the Estrodiol patch. I will look for your curcubrain. I ask elegy to stay on all of it until he sees another doctor that he is comfortable with. He also told him to stop the metformin. I hope you're feeling well and doing good on the medications that you were on Patrick my best wishes for you .

    Jackie

  • Jackie,

    I checked out LG's Uro/Onc at Hopkins.

    I'm sorry, but I have to say this: What righteous Jewish parents would name their son Mario?

    All right, got that out. Now, I guess you went to Baltimore because it's closer to you guys, but I would check out Penn in Philly. It's on the edge of the city, so it's an easy ride. I see my Penn doc's in South Jersey, I drive no more than 30 minutes to my Onc, and 10 to my Uro. I'm not saying move out here, hahaha, but a few more miles may help LG out better.

    Joe

    Oh, shit, he was adopted.

  • Lolol Joe 😉

    We will probably more than likely do that. It's about the same distance as us going to Baltimore so there's no reason not to try there. Thank you so much for the humor and I hope you are doing well and that you are pleased with all of your docs .

    Most sincere good wishes,

    Jackie

  • Hi Jackie,

    Check out a Dr. David J. Vaughn at Penn/Abramson Family Cancer Research Center. I saw him for a short time in Philly, until they opened shop near me, so I moved to Cherry Hill, NJ, but with a different Onc. He's a real nice guy. Check him out on YouTube:

    Joe

  • Thanks so much Joe!!

  • Still scratching my head about the Agent Orange comment. How the hell is it coming out of his pocket?

  • I am thinking that he was thinking taxes 😞

  • I'm sure a lot of the people that got exposed to Agent Orange would really feel sorry for him.

  • I like the drug and supplement program--except the estradiol.

    Nalakrats

  • Thanks so much Nalakrats!

    Jackie

  • Hi Jackie, I'm glad Elgie is doing so well. Reading your post and the comments above, makes me think the calibre of Dr's in the US is way higher than in Australia. If any of my Ozzie fellow members can suggest a high calibre APCa specialist, in Perth, but I will also go inter-state if required, I'm all ears. Thanks.

  • Thank you so much Paul!!!

    Wishing all good for you :)

    Hugs,

    Jackie

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