Constantine Kaniklidis/No Surrender

Hi Pam,
I certainly understand your concerns.
I also want you to realize that I am just like all the women here, another survivor looking for answers.
I have had cancer twice.

I just want to reassure you and anyone else who has concerns, that you don't have to worry.

When someone comes online and asks Edge a question, he gives an answer. It  is oftentimes a very long and detailed response. That is because he gives you the answer, explains it and then, and THIS IS IMPORTANT,  he has every study listed and linked so you can see for yourself what the latest findings are on your question.

Many women, myself included, have printed out these studies and brought them, along with our questions, to our oncologists. Sometimes a doctor will hesitate because he may feel there hasn't been enough data yet for him to feel  safe enough for you to take up that protocol, and other times he will say, "Yes, I heard of that study and I have been thinking about it for your case."

I am speaking from personal experience here. These two things have happened to me personally. I have a wonderful oncologist who has lead many national studies. When I was undergoing chemo last year, I would have a question. I would contact Edge and ask him what he thought about it. Then he would thoroughly explain to me what the study meant for my case and then give me the link along with a printout of the study.
I then took that paperwork to my oncologist and ask him about it. Many times he would smile and ask me,
"Do you have a ringer in the wings giving you all our inside info?"
On one important problem I was experiencing, he agreed that a switch to Xeloda was in my best interest. I wouldn't have known this unless Edge had given me the information and I took it to my oncologist.

On another occasion, with yet another question and study in hand, my oncologist said, "Yes, that is a very interesting study that I am following, but there is not enough data yet for me to feel comfortable putting you on that drug."

So, Edge answered my question, armed me with the scientific data, and then I brought it to my onc for the final verdict- which I went with. 

But as you can see, he was such a help to me.

My best friend, Ferne, who was a wonderful supporter of this site, had problems with her chemo after she was diagnosed with mets. Her onc was rather lost as to what to do. Edge reviewed the latest data as it pertained to her case and gave her a printout of it . She brought it to her oncologist and he agreed with it, being familiar with the study cited and changed Ferne's protocol. Her QOL improved greatly.

Someone who finds the study results on cancer drugs from all over the world and puts them in one data base that is easily accessible to BC patients, is not someone seeking to harm, but only to help.

I respect your wish to put this to rest, but I wanted to make sure I touched base with you to let you know I hope things are going well for you and that I understand your concerns.

Very truly yours,
Gina

Hello,

I am a clinical pharmacist who for roughly six years was put through a Marine corp like beating in regard to the medical profession ranging from being able to analyze a journal of clinical research and all aspects (statistics, etc)..then to the verbage that all medical professionals use... the list goes on.  So when my wife was diagnosed with TNBC and I began to come here, it wasn't long before I was introduced to Constantine.

I knew immediately this was a person who knew what they were talking about.  First of all, you could goodle many of the examples or other things he would reference.  Also, a pretender simply cannot talk in the clinical language that this person does. 

I've had the good fortune to communicate with "EDGE" on a variety of issues at the time regarding my wife's health and decisions we were going to have to make.  Every time, information that he provided me (not told me to do, just suggested as an alternative), checked out in spades! 

I can understand where some doctors would pooh-pooh anyone's recommendations other than their own.  A huge amount of ego goes along with the medical profession.  They get sniped at by the patient's family doctors, their aunt's son in law who is a radiologist and doesn't agree, even though the radiologist really shouldn't play with oncology. 

I stand up for "Edge".  The information provided to me has never let me down. and the more I learn the other colleagues that he knows at some of the best medical places in the country and some are surfin on the cutting edge of treating and hopefully one day kickiing TNBC's awful $**!!

I hope this was of some help to anyone.  Plus there is the freedom of making decisions.  Just because he might make a point and your family team as well as others don't seem to agree.  There is nothing that is wrong with following a different course, different direction.  As in medical science, there is not just one way to do things.  I understand more than I used to  after decades of working within medicine.  Medicine is an art.  There is no single way to treat different types of diseases and troubles.  I hope I've helped.  But the "Edge" is legit. And I am grateful he shares with this group. He certainly doesn't have to.

Sincerely, Zen Rookie

Hello Blucken,

Edited by trip2 - May 08 2009 at 1:36pm

Pam, I understand exactly your argument.  If you don't know the certain details that you want to know, then you have no use for the information.  It certainly sounds like that does not mean you are passive in regard to fighting your diagnosis and doing everything you can to learn and make the right decisions. 

We have been in this fight now for a year and 3 or 4 months.  I would grade it as a good fight every step of the way. We haven't had the best of luck and we haven't had the worst either.  I am narrowly focused on doing all I can to help my wife and our surrounding family to make the best decisions every time a particular therapy stops working and we are included in the process when the tough choices have to be made.  I've not hung on every word, blindly dedicated to the information Constantine has provided, but it sure gives me some good jumping off places in regard to where to start researching my own little research desk; which in most often situations is in the doctor's office posing the question with the oncologist who we've grown to trust very much.  This is arguably the closest thing in my mind and heart since diagnosis. I'm sure this whole forum also hold this as sacred.  I only wish for you the best in your personal battle.  Victory. No Surrender.  Most Sincerely. ZR

I tell you.  I am proud Constantine is the author of Breast Cancer Watch.  I've professionally been working 3 hard days and I can tell since I got out how diluted the quality of the medical health profession is becoming.  I have people who have the power to write prescriptions, and do not give me enough respect within my own small profession that I know the medication that I deal with.  I know its not nationwide, but it is getting bad.  I spent a lot of time; all my hair color, more to learn this area and learn it well, and I'm being challenged as to whether I understand about warfarin, a blood thinner, with which I've worked for years. Sorry, this post has no relevance to anyone but my own shock today that so many in the system have no idea what I went and learned for roughly six years.  I didn't know the above about Constantine, but it does make sense now.  Now, everybody, pray Triple Negative gets a big break because my wife is feeling so badly right now.  That chemo regimen, although it is showing that it is beating down those cancerous lymph nodes, is giving her such discomfort.  I pray for a break soon in the area of Triple Negative research.  Most Sincerely, PM

I believe that Constantine is more of a compiler of research than an actual researcher.  As long as you understand that, you're ok.  He has digested tons of information and made it understandable and relevant, and for that I'm grateful to him as a resource.  He always provides his sources when he makes a recommendation or reports evidence from studies, so it's easy to check.  I'm skeptical when he talks about well-known medical professionals (doctors and clinical researchers) as colleagues.  My doctors have not seemed that impressed with his reports, but my doctors don't seem to be impressed by much. 

Gina - most assuredly have benefited by what Constantine has posted, and will continue to do so.  His time and efforts in assisting us with his oh so valuable information is most appreciated.