Hi, my name is Rudy. I have been seeing Dr Myers for 14 years. A time during which my PSA went from originally doubling every month to now doubling every 2 years. Was notified yesterday that he will be retiring in November and my last appointment will be in May. So I am looking for any help I can get in finding a new Dr. I live in Pittsburgh but will travel. I think the world of Dr Myers and finding someone like him, who is willing to be aggressive and think outside the box will not be easy. He is going to give me assistance but it would be great if I could get other ideas.
As background, I was dx'ed 2002 had surgery and radiation neither of which worked. Changed local Drs for John Hopkins but they wrote me off and tried to put me on a trial which soon after failed. Spoke to Dr Barkin who connected me to Dr Myers who saved my life. Current PSA 4.2, no mets. Current primary medications which I have been on for 2 years include Xtandi metformin, avadart, estrogen patches,and a statin. Also very strick on diet and exercise. Thanks for any help anyone can provide.
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monkey1991
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We were referred from Memorial Sloan-Kettering to a closer facility to home..... University of Penn.
Dr. Myers referred us to Memorial Sloan-Kettering for radiation which wasn't needed. We were very pleased though with their Doctors and their aggressive treatment plan of pca.
We haven't checked out The University of Penn yet but I guess we will be soon if Dr. Myers is retiring.
I am now back with Penn for my Urology. Will you be going to Philly, or is there a closer office to home? In Philly, I saw a Dr. David Vaughn (misspell?), but he was a real nice guy. I had switched to another Uro, had billing issues, and now, tomorrow I'm back to a Penn office in South Jersey.
probably not at this time. Maybe in the future. Well be seeing Dr. Myers one more time I think. Then we'll stick to our local Ann Basinger in Lancaster for now. Good wishes there Joe!
could you give a more detailed explanation of how Dr. Myers treated you. Myers will be hard to replace because he started out with degrees in pharmacology and then went into oncology and specialized in PCa. Example...when I went to The Mayo Clinic and talked to an oncologist he didn't know the benefits of Firmagon over Lupron as it pertains to Testosterone production when undergoing IADT.....scary
Unfortunately this will be a long post. First appt June 04, started triple hormonal, casodex avadart, zoledx, zometa. In 6 months PSA went from 2.4 to <.008. Ceased therapy accept for avadart. PSA at .03 March 06 ( after 15 months off ). From March 06 to Jan 07 PSA rose to 0.92. During this time attempted treatment with luekin, Celebrex, accutrain, and ketocortozole. None these slowed the rise. Feb 07 started second round of hormonal therapy ( proscar, caseodex, estradiol patches, 1 every 3 days and Lupron ). Feb to June PSA 1.2-0.29. June 07 switched to 2nd line therapy, 8 estradiol patches per week, ketocortozole, proscar, and dosinex. PSA dropped to 0.09. Aug 07 dropped ketocortozole. By March 08 PSA dropped to <0.01.
Sept 08 phased out patches added Celebrex. From March 08- Feb 09 PSA stayed below detection. From April 09 to Jan 2010 PSA rose to 1.54 an average doubling time of 5 weeks. Tried luekin but no change in doubling time. Jan 2010 started estradiol patches at 3 a day rotating out a set for a max of 9 applied at any time. PSa dropped to 0.72 and by Sept to 0.02.
Oct 2010 phased off patches to purposefully allow it to go up to 3. Intent was to go to Sand Lakes imaging in an attempt to id possible cancer then use radiation to destroy. Also stopped Celebrex over arterial concerns and added losartin. Jan 2013, PSA at 2.9 went to Sand Lakes and of course they found nothing. Not a waste because full body scans showed over health excellent. Dr Myers opinion that I had low volume cancer from aggressive tumor that produces high level of PSA.
Restarted estrogen therapy and PSA dropped to 1.01 by June 2013. Also taking finestride. By April 2014 PSA at 1.35, added metformin. By April 2015 PSA at 2.69. Started Xtandi. July 2015 PSA 2.15. Oct 2015 PSa at 2.31, added Crestor. No further changes in meds, PSA at 4.29. Doubling time now at 2 years.
Believe it or not this is not all the details. DR. Myers likes supplements of which I take many. Plus I take something for incountence and still take the losartin. In total I take about 30 pills a day. Most importantly my increase in doubling time occurred at the same time that I stared taking a max dose of curcumin. Sceduled for another experimental scan in Phoenix in April. Currently scheduled for last. Appt with Dr Myers in May. Luckily I have never had any symptoms or pain. Suspect I will be moving on to a new therapy soon. God bless Dr Myers and everyone fighting this disease.
I want to find an oncologist soon. I have local access to Mayo, Banner MD Anderson, and Cancer Treatment Centers of America. I wonder which one to pick.
"talked to an oncologist he didn't know the benefits of Firmagon over Lupron as it pertains to Testosterone production when undergoing IADT "
I had to do my own research and tell my med onc that I considered Firmagon hands down superior to Lupron, as it pertains to almost anything and everything. It's simply a superior ADT drug. His answer: "Yeah, we know, but we've been using Lupron for decades, it's what's expected, it's what the drug salesmen push, and people just want the simplicity of long-term injections."
Let me guess: these are the patients who refuse to exercise or eat right 'cause it's too haaaard. I mentioned to an otherwise well-educated infusion nurse just Thursday that her "incurable" Type II diabetes could be cured and reversed with simple, CHEAPER THAN FREE, time-saving dietary tweaks. She didn't respond, so I dropped the subject. Her loss ... and while it can cure the disease, it cannot replace a foot or one's eyesight.
I have been treated at Stanford which has been good. For a doctor who thinks outside the box, there is a great doctor at El Camino Hospital in Mountain View, CA, Dr. Shane Dormady, whose reputation is great within the support group I go to. Here is his bio: elcaminohospital.org/doctor...
I also see Mayo Clinic, a leading and cutting edge facility treating PC. My doctor there is Dr. Kwon. He is outstanding and very involved in the cancer circles.
Thanks. I have been exploring the Cleveland Clinic, Sloan-Kettering, and the Clinics at Duke and Penn. I will add Mayo to the list. Would like to stay towards the east if possible.
I am being treated at both University of Washington and Duke. Both are fairly traditional, but it seems UW is more likely to think outside the box once the primary choices no longer are effective. I've been impressed both places that my doctor takes all the time I need to answer questions and fully explain options.
How is Dr.Kwon ..I am thinking about going to him and trying to have his PET scan with Choline tracer... I understand that he has had some cures with people that had bio chemical failures? Thanks for any insightyou can offer
Yes, tell us more about Dr. Kwon. Do you see him each time - and how often? Does he have time to listen to you? Is everything about choline PET scans, or does he offer to treat you holistically as well? The "Mayo Protocol" is pretty rigid, and most of their oncologists will not think outside the box. (And, yes, it's a very good box, but it's still a box.)
Search Dr Kwon on YouTube. There is at least one of his videos there: oligometastatic prostate cancer. He talks about aggressively hunting down and stamping out metastases.
Yes you're right. Mayo has their protocol as well as all the top hospitals I've been to when I was first diagnosed. I went to Mayo, Hopkins, UCSF, Sloan Kettering, M.D. Anderson and they ALL had the same protocol that they had to follow. They told me that they would do the first treatment, then if that fails, then go on to the next treatment and when that fails go to the next one on the " protocol list". And on and on. It's because they are hospitals. If you want a doctor who thinks and does things "out of the box" you have to go to a doctor who has his own CLINIC.
Those doctors don't have to follow the hospital's protocol. They treat you with what they think will help you. And they do that because I guess they can since they are not part of a hospital. Examples are Dr. Scholz and Dr. Meyers . They both have their own clinics. I wanted to receive chemo as one of my first treatment against my cancer which had metastasized. NONE of the above hospitals would be able to give me chemo. They said it's because of the hospitals protocol. They was only able to give me chemo at the end of my journey and for pain. It's because each drug was approved by FDA with a certain protocol that you can receive each drug only after you have failed certain drugs already. That's how I understand it. It might be or have changed now but that's what I encountered in 2011.
Just my experience from going to all these different hospitals. Only until I met Dr. Scholz and later Dr. Meyers, did I get treated what they and I thought should be my treatment in being aggressive against my cancer, which was the chemo. I am happy that we did what they thought I should be getting and not follow a standard protocol. Everyone's cancer is different so we cannot be locked in a box. Just my take on this.
Excellent analysis Wilfred, and so true. Are you currently a patient of Dr Myers? When were you dxed. I should probally think of flying out to LA to see Dr Sholtz.
No, I haven't seen him for a few years now. He's in Virginia and he doesn't do phone consultations so I needed to go there if I wanted to see him. Too far from Hawaii. Right now my PSA is undetectable (knock on wood) so I don't need to see him. If my cancer was returning, then perhaps I would go up to Virginia to see what he would suggest doing but now he's going to retire in November. I was diagnosed in Oct., 2010. Seeing Dr. Scholz might be a life saver or extender, I believe.
yes, I did chemo at start . Soon after diagnosis. I was not low volume. I was 4+4=8 gleason and stage 4 . I forgot how many treatments I had. I did it in 2011. I figured I had to do chemo because I had metastisized already. Cancer was on my pelvis at diagnosis. So far I don't regret it. In fact, I think that and maybe radiation have kept my PSA undetectable till this day. Knock on wood. I wanted to kill the cancer with whatever "big guns" that were available . I wanted to kill the cancer while it was small, not when it had a big army. I hope that helps. Good luck with your journey. I think you'll do alright because you only have low volume.
I agree and in fact I am pissed. In fact I would really like be a lot stronger but the administrator might block this. Quick reminder, I am Rudy, Gleason 9. PSA currently 4.5, no mets and no pain. 15 years since dx'ed.
Here is my Dr experience back story. Surgery and radiation by Dr in WV who told me that I had 5 years and quality of life was most important. Went to John Hopkins in 2003. They said I should pray, drink red wine and join one of their clinical trials. This is exactly what one of their lead people told me. Said quality of life most important. The trial failed horribly.
So, I went to Dr Myers, and I am still going strong. He never told me what to do. We worked together to come up with what I felt was best for me.
Fast forward to yesterday. Had an appointment with the lead prostate cancer oncologist at one of the Nations top hospitals. He bad mouthed Drs Myers, Sholtz, and Small. Told me that I had a TERMINAL DISEASE and that I would DIE FROM IT. Said that these Out of the box Drs types of aggressive treatments were not doing their patients any favors. And in fact were shorting their life's. Said that his hospitals approach was to let the disease progress until it can be found and pain ensues. After all what should be important to me is quality of life. When I tried to tell him that longevity was most important to me because of my desire to watch my children and grandchildren grow he shut me down. That's when he told me I was terminal and went on to talk more about their approach. So that's when I realized that their approach was solely based on their definition of quality of life not mine.
Plus, considering my personal medical situation and the advancements taking place with prostate cancer, how could he possibly tell me that I am terminal and that he knows what's best for me and my life.
To all my prostate cancer brothers out there, keep fighting your fight. Do what is best for you. Don't let some sanctimonious ass tell you what's best for you. If their definition of quality of life is the same as yours then great. That's your choice. But it sure as hell is not mine.
So you really met with MOs at all those hospitals? That's amazing due diligence on your part. It's sad and unusual that such renowned centers use a cookie cutter approach to treatment.
Yours is a great story. I've been seeing Dr Dattoli in Sarasota since 2015. He's an RO who treats only PCa. He radiated my pelvic lymph nodes after the imaging center he sent me to , sand lake imaging in Orlando, found two suspicious iliac nodes. He treated Dr Myers and subscribes to his philosophy in that I take the meds recommended by Snuffy: metformin, statins, avodart , estradiol and finasteride. It's a shame more docs aren't as well versed in treatments for high risk guys of which I'm one.
I also went to Sand Lakes after allowing my PSA to go to 3. They found no mets or indication of cancer. Dr Myers opinion is that my cancer has a very small presence but produces a lot of PSA. I have my last appointment with him in May. Desperately looking for new Dr. Looks like best option so far within a reasonable distance is Penn Medical center. CLeveland clinic not a good match.
Actually that was my knee jerk reaction to looking at their web site and their Dr profiles. After 15 years with Dr Myers I am going to be difficult to please plus having only found out about his retirement I have been under a lot of stress.
BUT, I did get a call returned from one of their nurses and she removed a lot of concerns. First and foremost they do have several medical oncologists that specialize in prostate cancer. Something that I think is incredibly important. AND I have an appt for this Friday with one of them. Really helps with my stress level. Plus I got more info from Dr Myers office that makes me fell a lot better. Sorry for any confusion. I will let you know how Friday goes.
I'm headed to Sand Lake for axumin scan when my PSA gets to 2.0 which ,the way I'm going, will be at next test on March 22. I never heard of PCa with small presence which puts out a lot of PSA. Is that a good thing? Sounds like it is!
I am going to miss the video presentations of Dr. Meyers. There is nobody that I know who is like him. He has given me great information as well as hope and he certainly deserves a fine retirement.
10 mg of resuvastatin. The estrogen was via the estradiol transdermal system, 3 patches a day for a total of 9 @ anyone time. Fortunately side effects were minimal and after time disappeared all together. Dr Myers believed that the treatment altered the aggressiveness of the cancer somehow altering its biochemistry. I always felt that the 3200 mg of curcumin I take every day had a role in it. Can't say enough about importance of exercise and diet. Work out 6 days a week, closely watch my diet. Dr Myers once said I treat side effects with impunity. It allowed him to do things that otherwise he may not have been able to do.
All I know is when I started this my first Drs were giving me 5 years. 15 years in with Gleason 9 tumor I feel pretty lucky. Finding Dr Myers was one of the best days of my life. We would all be better off if there were more like him.
For whatever it's worth, there is an "NCI Designated Comprehensive Cancer Center" at the University of Pittsburgh. That designation is the U.S. National Cancer Institute's highest designation for cancer research and treatment excellence. There are 47 so designated research hospitals in the country. They might have someone who is knowledgeable about Dr. Myers' treatment protocols and who can help you. Here are the details:
Rudy- How much curcumin are you taking? In what form? I tried hot sauce- but never was easy. I have started "Cool Curcumin" which is curcumin mixed with ginger- 3 capsules. But I'll bet I am way under dosing.
I am taking 3200 mg a day of life extensions bio-curcumin. Be carefull. I have been told that not everyone can or should take this much. I had an early problem with stomach pains from this dose ( 3+3+2 pills spread over the day ). Dr Myers had me add lecithin (1 pill ) with each dose and the problem went away. Apparently the lecithin allows the curcumin to clear your liver making it more effective. You should talk to your Dr first, as it may be necessary to monitor your liver function.
Patrick is an amazing guy...been treating himself for about 8 years...I would have tried that but can't get a supply of PCSPES or the clones that worked.
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Worried and looking for new doctor
