First the good news: My 6-month checkup at MD Anderson (Houston) shows that I am still one of The Undetectables, CT and bone scans look good. Only one faint spot on a rib in the bone scan, and it has now been deemed benign, since it did not fade away with 2 yrs of ADT + 6 rounds of taxotere, like the several real mets did.
However, I am less than pleased with my MO there. I had a number of issues to discuss with her, recent advances in the field and how they might pertain to my quest to remain hormone sensitive for as long as possible. I wanted to discuss with her possible use of the "lutimamides" for that purpose, off-label drug use, etc. I sent her a list of my questions a week in advance of my visit. She never appeared at my appointment, but sent a nurse, who dismissed my list of questions with "Why would you want to take more medicines when you're already PSA undetectable? All drugs have side effects." The answer is of course "To maybe extend my lifetime," which I guess should have been obvious from the fact that I have been doing ADT for 2 years, insisted on early chemotherapy and endured a RP. All have obvious side effects, but also obvious survival benefits. So I'm very disappointed that my MO wasn't willing to even have the discussion. In my last few visits, the term "cattle drive" has come to mind, and I'm beginning to wonder if it is worth the ~10 hour round trip.
Thanks for reading my rant.
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Garbonzeaux
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Congrats on your great results. You will find that MOs are not very interested in off label drug use, with the exception of Metformin and statins, which are becoming well accepted. Have your PCP prescribe those if the MO won’t give them to you.
Sounds like you are oligometastatic. Have you thought about an ADT vacation to see how you do?
Already taking Crestor, but a whole spectrum of doctors, including 3 MOs have declined to prescribe metformin. I'll keep trying. Haven't seriously considered an ADT vacation yet, but if side effects get too debilitating, I may.
Metformin comes from a plant. Therefore a supplement exists of that plant. I'm not recommending it because I'm not a health care practitioner. Google around you'll find it.
It's like we're not thankful enough to be alive or something. I've been through the same as you, and I'm starting to get a little cranky. Of course, that's why we've gathered here...to let off some steam.
Eleni Efstathiou. She has a sterling reputation and has been my MO since my first visit there. Just haven't had the opportunity to talk to her in the last year. Perhaps others need her time more than I do at this point????
They are all over booked there. Short conversations and hard to pin down. Could be that the questions we have have no answer they can provide. It’s all a guess until the psa rises. Then what?
I fired her two years ago. She's more interested in the color of her nail polish than speaking of strategies to deal with cancer. She is also scan happy.
I did not hire another MO. I am working with a naturalpathic md. I never went and have never been on lupron and zytiga as she suggested. my psa at the time was 0.9
One of the RO's there, Dr. Choi, he is another lupron for 2 months, then burn em' guy. The right hand does not know what the left is doing there. At least in the Urology business. I may eventually hire an MO. But he /she will be a maverick, who thinks outside the normalcy of the big institution and standard protocols. Cattle Call is synonymous with md anderson. Dr. Sartor, at Tulane, whom you see, would be someone i would entertain.
Oh Geez...... you had me in stitches.... I'm stupid but I'm not crazy.... What I wrote above means exactly as it's translated. I bet if you said that to her phonetically she would appreciate it... BTW does she have a foreign accent?
I think she had a bit of a Greek accent, but really, it's been a year since she spoke to me, so my memory may be faulty. I'm blaming it on the ADT-induced brain fog and the cattle drive syndrome.
Well, I guess if you MO is doing a good job, you might consider keeping her for now. If you are not getting feed back on other drugs and supplements, do your own research and do what feels comfortable to you. We are here to help if we can.
I have learned a tremendous amount from this discussion group, and much appreciate all the help. Doing my own research is one thing, but prescription drugs need scripts, and can't do that myself, even if I'm convinced it would be helpful. Supplements, sure. I take lots of those.
I understand your pain. In 2004, people could not understand why I did not go to MD Anderson. I didn’t because, although they have great people there, it is a known cattle call experience. Looks like it still is. I ended up at Baylor College of Medicine and then after the divorce with Methodist Institute followed my research MO, to Memorial Hermann Cancer Center. My research RO is still at BCM and Cornell Weill.
The problem as I see it, my opinion only, is Community Oncologist versus Academic Oncologist. The latter spends his time in clinic, research, and teaching; necessitating a limited load of patients in clinic. Grants keep the researcher going, not number of patients. All facilities need cash flow to stay in business. Decisions on where the monies come from, dictate to the Board where and how much emphasis is given. I am so glad I went the academia route and that it was available to me.
So glad that my cousin ended up at BCM rather than MDA for her metastatic breast cancer.
I tried to get in to see Dr. Amato at Hermann, but my timing was poor. I had several appointments with him cancelled on account of his medical problems. I had heard really good things about him, including that some patients had to wait for him all day because he spent so much time talking to all his patients. The way it should be...
He spent a lot time particularly if he was giving bad news or treatment options. Never bothered me. First day that I met him, spent over 2 hrs with me going over options and his trial. I am sure that that alone backed up his day. He has me come in early. Cmdrdata is seeing a guy in Dallas who is very familiar with Dr A.
I read all this and I guess I’m pretty lucky with both my MOs. All the doctors at Prostate oncology specialists in California are awesome and always answer your questions. I see both Dr Drakaki (MO) and dr kishan (radiologist) at ucla for second opinions. They too were awesome. Never felt rushed and answered all my questions. Believe it or not when I emailed them additional questions, they both replied the same day but at about 10 PM in the evening. This happened more than once. I was blown away. No need to put up with the nonsense of doctors that have no time to listen to your questions.
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