Some interesting highlights from todays GP visit.

David said,
"You expect me to believe that all 7 of these doctors are wrong and you are right?"

I would not find that possibility fascinating. The news on the POM study just released is very new. While I too still remain skeptical on the prostate cancer specific survival benefits of POM, there are many doctors that simply don't get their data quickly. Certainly more time is needed to validate a survival benefit, and that may be why probably the majority of doctors won't put their name on it...

Still the newest data is quite compelling.

Nick Vogelzang did a presentation on how well doctors receive new data. It wasn't very encouraging. Basically he used in one example the chemo drugs Taxotere and Cabazetaxel otherwise called JEVTANA. There is overwhelming level I study evidence that JEVTANA outperforms Taxotere after a failed first round of chemotherapy. But less than 10% of oncologists were prescribing JEVTANA in such cases. He consistently showed level I studies with evidence that is considered proof of various drugs and practices showing clear benefits but less than 50% of the medical professional field was adopting these protocols.

A bit scary. He said that is why a strong patient interaction in support groups is necessary to help even educate the doctors...

Tony

David:

Very interesting. I think all the points have been made. Let's face it: supplements just remain controversial. You are quoting your doctor but I'm sure others can quote other experts. The more I read up on this, frankly, the less I know!

Mel

Tony- Thanks for validating my current chemo regimen with Jevtana.

Tony, what did you mean by " I would not find that possibility fascinating". Got the drift of most of your answer, but don't understand that particular sentence. Are you agreeing or disagreeing, or neither?

Purgatory said...


mag - i can't hardly read the prescription paper, but i believe he put me on just vit d, not d3, and we didnt discuss vit d3, i wouldnt have thought of that on my own, as i had a long list of other questions to knock off

David,
D3 is absorbed more easily, I'll bet he prescribed it.

Dave in Durango CO

@David...

Neither,
Just saying that we depend on our doctors to be up to date and on the spot but that we may be doing so errantly. You asked if it was believable that seven doctors could be wrong about something. My reply is yes it is possible particularly when data is new. And to highlight the point I quoted a world renowned researcher from a presentation he did.

However, I may have not given all of the facts correctly. Some of the examples that Nick showed to make a point were not new studies at all but rather had been around for years and there was still a majority of prostate cancer doctors not accepting these protocols.

Yes it does seem to vindicate zufus...and man, I hate when that happens...lol

Tony

Purgatory said... I was anticipating your repsonse on the Pom subject...   [Edit] An important message to the newbies and others who might read this reply in the future is…to expect to receive the best possible care.   The example I will replay here is that we hear frequently of the large number of urologists (not General Practitioners) who JohnT “fired” in his journey because he became more knowledgeable then they were about important aspects of prostate cancer.   Post Edited By Moderator (TC-LasVegas) : 3/2/2011 9:29:11 PM (GMT-7) Post Edited (Casey59) : 3/3/2011 4:32:24 AM (GMT-7)

David

Im glad that your spirits seemed to have picked up.

 What I found most useful when deciding what course of action to take was to read all that I could , including forums such as this one, and to have a gut comfort level with the decision and the doctor.   The advice that I received here during that process is once I made that decesion not to second guess myself.  I'm sure that you have taken the steps along the way to educate yourself and it appears that you have a great comfort level with your doctor. I believe that most people here really want to help you - however they are not doctors and are not you.  Only you know what is best for you. 

Stay strong

Ray

To tony: instead of clipping the way its done, why not delete the first offending response, i.e., it was casey's condenscending remarks that triggered that, why punish everyone in the path? i never undertand that part. i even started this thread by saying i didnt want to trigger a "war", was only being a messenger for what i was told today. you guys do a great great job, for real, but sometimes i think the baby gets thrown out with the bathwater. not critisings as much as asking.

david

thanks ray, and thats a good point, none of us are doctors, nor do i ever pretend to be one, was just sharing the highlights of my visit today with one of my doctors. i let all my drs know about HW here, and none of them object to me sharing their views with you guys, or me sharing info i pick up from here with them. the doctors i have love having a fairly educated patient that can communicate what they are feeling and what is going on.

best to you

david

David,

God love you (as an Irish in-law said more than 100 yrs. ago to all and everyone she met who enountered any setback in life).  God love ya.

I read your first post a day after your Monday visit and couldn't find words that would bring you the gift anyone who responds to those in pain wishes those words would bring:  Support, comfort, an idea, some practical help - none of those came to mind.

Still don't have a verbal miracle cure for you, although I wish it were so.  BUT, I have a few observations:  1. The current diet/supplement thing will not bring you the miracle, but it may help.  If it did, all of this discussion would be moot, and doctors wouldn't be prescribing chemicals, just food extract.  As long as it doesn't hinder, go for it.  I still believe my NEIrish love should continue his ground flax seed (has to do with getting a phytoestrogen in his body that he hasn't had in any shape or form his entire Yankee life).  After he just spent 14 lousy days with diarrhea after a virus, I read about how the PPI's he's on for his high cholesterol can cause a magnesium deficiency, causing diarrhea due to C.difficil bacteria in his colon and MADE him take a supplement for his magnesium to be on the safe side.  Your body is so altered right now due to the many medical interventions you've experienced in the name of cure, that some gentle, nourishing vitamins/nutrients/minerals has to be necessary, if not curative.

Last, doctors are on no pedestal   They respond to some medical press and new studies they read in the journals, (at best) and (at worst) from the pr from the salespeople from the drug companies (whose sales staff bring the doc's staff donuts, and coffee and schmoozy talks about the kids).  With PCa, this kind of info is still so raw.  It's still in the infancy of treatment, and we're it's bewildered victims.

Bottomline, we don't want you to go down.  We want something to work that will make you better.   Where you go, David, we go.  That's what ignites the tiny rants here.  I have no doubt whatsoever.  You and your bride decide what the current medical community can do to help you - by this I mean the BEST of the current medical community, then do it.  Eat and supplement via whatever makes sense to you via the BEST of the nutritional/supplement advice. 

I know you'll find the strength to enjoy the ride.  Grab all the years you can.  We're all pulling for you.        

david.

A good doc will know more than a bad one. That's about all that needs to be said.

A good doc (like a good scientist, and a good person in general) will also be prepared to change his mind about something when the evidence changes, but that does mean evidence and not opinion.

Anyway I guess I should be glad that my docs are at Holland's National Cancer Institute and at the forefront of all that's new. But that makes it interesting that they don't see any benefit in testing PSA to more than one decimal, and don't mention the use of any supplements etc, but simply recommend a healthy lifestyle and no-smoking.

On the vit D question. I know that sunshine is good, but I was told prior to SRT that I was to avoid any sunbathing for the rest of my life on the area where the RT was done. And that's without having my dermatologist telling me to avoid exposure to too much sun any way as she is concerned about my moles and a bit of skin cancer history in my family. So I'm all wrapped up. (Oh no wait I'm all wrapped up becasue it's cold) Still no sunbathing may be helped by the fact that the garden at our new house is mostly in the shade!

Anyway I guess it's time for me to pop out and collect my portion of Soylant Green. Yum.
Actually I think it'll be a spot of fresh salmon and some green beans.

I'm starting to find it worrying coming to HW after my night and your day and finding yet another thread where a whole lot of odd stuff has gone on while I was asleep. Makes me sad.

Alf

Purgatory,
Hope things work out well for you, and I think it is very good that you still have the HT option which can often hold things back for a long long time.
I agree with your docs re supplements, for many reasons.
I still think the best thing one can do for their body is to eat a more green diet - green juice and greens in general, to help make the diet less acidic and easier on the body and tissue in general. Outside of that, exercise for the cardio system and enjoy life, and keep the fingers crossed that you have decent genetics.

Cheers
Kevin