I am one of Dr Snuffy Meyer's former patients (as many of you know, he's now retired) and am now a new patient of Dr Mark Scholz in the Los Angeles area. I like Dr Scholz a lot and he has ordered a pretty aggressive regimen of Xtandi, Lupron, Taxotere and later radiation. This is based upon the results of a C11 Acetate scan which he ordered at Phoenix Molecular Imaging (Dr Fabio Almeida). That scan located 3 cancerous abdominal lymph nodes.
My issue is that I live in St Louis, MO, and today I had my appointment with an oncologist at Siteman Cancer Center (part of Barnes Jewish Christian hospital) here in town. He has received all my records. In a nutshell, it went very badly, as he said he is totally against Dr Scholz's recommendation and would not do the chemo.
This is the first time in 8 years I've actually needed "hands on" treatment locally. I know there is a lot of "doctor's professional pride" at work here, and not sure how to best find someone to administer my Taxotere chemo.
I'm thinking that others of you have already dealt with a similar issue. Any thoughts or experiences?
Ned
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NCrocker
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Siteman is pretty prestigious - who is the oncologist? The one I know of by reputation is Bruce Roth.
Emotions and egos can certainly come into play in a fraught situation like this (btw women are so much better than men at this). But doctor and patient are in it together, and (sometimes after a time-out) both must come to an understanding of what's in the best interest of achieving the patient's objectives. This process of shared decision-making means the doctor must take pains to understand what is most important to the patient - is it about prolonging life at all costs, or is it about achieving good QOL at all costs? Usually it's somewhere in the middle. It also means the doctor must impart to the patient the reasons for believing that one therapy or another is acceptable or unacceptable. The patient has responsibilities too. He must be able to articulate his objectives, and be receptive to the information being shared. If he doesn't understand the reasoning, he has an obligation to speak up. It's often best not to make decisions on the spot. "My way or the highway" doesn't work in either direction. Like all people, doctors have a reasonable expectation that the patients will listen and consider what he has to stay, and vice versa.
From what you wrote, I gather that you only have 3 metastases, all abdominal (M1a). When you speak of radiation, I assume you are talking about zapping those 3? You should know that, depending on location, that is not always possible. Abdominal radiation can affect critical organs. Mark Scholz would not know either - he is not a radiation oncologist. You have to talk to one. You should also know that there is no proven benefit in doing so. But if it is safe - why not?
As for Taxotere, you should know that even after extended follow-up, it has been found to be of no benefit in men with a low burden of metastases like yourself:
We recently learned that abiraterone is beneficial in the mHSPC situation, and it is now FDA approved for that purpose. that means that insurance will cover it, while they might not cover Xtandi. Mark Scholz, btw, is a wizard at getting insurance approvals for medicines that normally would not be approved. I admire him for that.
It's not exactly next door but my Nashville Dr Lamar implemented similar recommendations from Dr Kwon at Mayo. Lots of strong life expectancy change behind the CA recommendations
Thanks all for your comments. I had earlier this morning spoken with Dr Scholz's office and am waiting for a suggestion from him, as you mentioned pjoshea13. As I told them, surely he has other Missouri and/or Illinois patients. Given that it's only every 3 weeks, I'm open to some travel. Even Nashville perhaps (thanks louschu !). Our one bummer is that although we are retired, we have custody of our 8 year old granddaughter, who is of course in school. "Nuthin's ever easy" as they say!
Tall_Allen, thanks for your comments too. Your points are well taken about the ideal back and forth discussion to allow the doctor to discern the "hot buttons" of the patient and what the doctor can ethically live with. Oh, and it was Dr Bruce Roth who I saw. He was polite, albeit certainly firm in not really allowing ANY leeway (in his own mind being ethically-minded as a physician). It basically came down to what clinical trials had PROVEN or NOT PROVEN (of course "not proven" doesn't mean categorically wrong, but, well...not proven!). As I told him, many men eagerly sign up for clinical trials just for the CHANCE of being selected into the group which is trying the "not proven" treatment! It's not irrational. And in this case, it's a Dr Mark Scholz recommendation - Executive Director of the Prostate Cancer Research Institute! I said that last part only briefly in passing, to not rub his nose in it.
Thanks again, and if any others by chance have knowledge of other likely cooperative oncologists in my general area of Missouri/Illinois/Kentucky, I'd love to hear!
You really can't expect a Doc to implement a treatment they don't believe in.
What you need to do is get some second opinions from treating physicians.
If you are willing to travel to Chicago, you have University of Chicago, Northwestern (with its own proton center) and Kellogg Cancer center in Glenview.
Chevrin at Kellogg, has always worked with Myers and Myer's patients... and he also has a collaborative relationship with Sartor at Tulane. And Sartor was one of Myer's recommended referral oncologists.
And if you are getting radiation, you really need to consider proton radiation. Northwestern may be as close a proton facility as you can find, unless you have a local one.
Dr Myers tailored his replacement dr based on a number of each patient’s individual factors, including location. Who did did Dr Myers recommend you go to after his retirement?
Sounds like dr Myers wanted to start you on Xtandi, if so, did u agree and ask new dr to expedite that part of new protocol?
With your picture, like me, normally dr Myers would move you out of growth arrest into higher risk category and protocols-i seem to be missing something?
Dear NCrocker: When I started with Dr. Myers my Florida Oncologist questioned what Dr. Myers was recommending so I quit going to him and stuck with Dr. Myers. Expensive and lots of travel, but worth it. My current oncologist is open to Dr. Myers ways as well as some of his own. Even though my psa was almost 0 he insisted on scans that showed bone mets. Glad he did. He is willing to do whatever to help the patient. Lucky to have him. Think you may have to bite the bullet and continue traveling to see Dr. Scholz, at least for the near future.
Glad your scan found the nasty stuff. When my PSA rose to 0.2, 17 months after a RRP, I had an MRI and a C-11 Choline acetate which did not show anything. I did have salvage radiation and 6 months of Lupron and am now undetectable. With a 0 PSA, it would be good to know what worked for you in case I or others have to chase down any small rises in PSA. Wishing you the best. Thanks for sharing your story.
Dr. Myers had me on ADT for many years, reducing it to one avodart a day. Also pomgranate supplement , resversatol, and vitamin D3. After coming down from the Lupron, Casadex and things I cannot remember, I did well for many years. Feel confident I will also do well on Xgeva. The good news is that the VA is paying for it and leaving me with my own oncologist.
Wish I could tell you I had to fight for it, but Taxotere and the full range of aggressive treatment in Dr Scholz’s plan was waiting for me when I walked through the door at Prostate Oncology Specialists 3 years ago. Knowing what I know now, were I in your shoes, I’d look for someone to follow Dr. Scholz’s plan. Here are my reasons: 1. My urologist thought I had two years to live upon diagnosis; that was 3 years ago and I’m pain free and enjoying life. 2. Taxotere is nothing like what you think chemo will be: some tiredness after treatment was all I had. 3. No treatment now known to humankind will rid you of this cancer, but the more you throw at it now, the better chance you have if slowing it down. Hope you’ll seek other providers in your area, and that you’ll get appropriate and aggressive treatment.
Once again, thanks so much for your comments. This is my first real experience on this wonderful tool (other than just reading other's stories).
To add a little more detail to my background:
I was diagnosed 2010 with Gleason 7 and with 12 out of 12 positive samples (not all Gleason 7) in my biopsy. Had robo-surgery at Mercy in St Louis, and started going to Dr Needles as an oncologist there. I had the typical followup IMRT radiation and 6 month hormone therapy. Negative bone scan. My PSA (measured quarterly, not monthly!) was very low but rising from undetectable after those treatments..
Then I ran into Dr Myers book and realized there was MUCH more to know than I was hearing (e.g., there is such a thing as dihydrotestosterone). And Dr Myers lengthy visits and monthly videos and Prostapedia newletter taught me so much, even as things have changed over 8 years. I followed his regimen of Mediterranean Diet (OK, not 100%!), exercise, supplements, Avodart, Metfomin, a statin, and an aspirin.
For many years my PSA rose (but PSA doubling time was about a year and didn't cross 2.0 until mid 2015) - but still the cancer was growing. And he had me doing MONTHLY PSA tests to track more precisely.
He started me on Xtandi in April 2016 - it would have been sooner but unfortunately I was diagnosed stage 4 Hodgkin's Lymphoma in 2015. I'm now in remission, but because of the disease and chemo and whole impact on my system, he held off the Xtandi until I had recovered.
My cancer is very sensitive to Xtandi and 1 tablet daily took my PSA to undetectable by late 2016. With his retirement imminent, he said he wanted to send me to Phoenix Molecular Imaging for the C11 Acetate scan, and took me off Xtandi to allow the tumors to more likely be seen. Interestingly, my PSA went to 2.5 in about 6 months (!), and I had my scan last month which located 3 lymph nodes as mentioned in my earlier post.
Upon retirement he referred me to Dr Scholz (and I agree with the comment above saying that they felt he chose that doctor based specifically on my situation). So Dr. Scholz has me back on Xtandi, and is recommending this blitz of Lupron (I just got), the Xtandi, Taxotere chemo, and then radiation to those tumors ( by Dr Henry Yampolsky in Los Angeles area).
If you've read Sholz's great book that just came out, you can see why he's thinking that way.
I apologize this is so lengthy, but I appreciate everyone on this site and I know some of you (who are like me) like the details
My issue at hand is how to find a cooperative chemo oncologist semi-locally. THANKS again!
Podsart, Just to be sure I answered your question, Dr Myers was keeping my off the "more toxic" treatments for the earlier years, and assumed that I would be scanned after the PSA got large enough. When my lymphoma and treatment came along, that set back everything a year or so, and hence the Xtandi was started in 2016 - later than otherwise would have (considering my PSA had kept consistently rising ).
Also, in my case he didn't consider location when recommending Dr Scholz (in Los Angeles), and he was my first choice anyway..
howlong did dr. schultz reccomend lupron i.e. the blitz""when you went back on xtandi i.e 3mo.or6mo got psa down to .006 but it keepsrising i saw dr.Myers for 6yrs before he retired ,thanks and i look forward to your response.
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