Constantine Kaniklidis/No Surrender
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Topic: Constantine Kaniklidis/No Surrender
Posted By: sibu
Subject: Constantine Kaniklidis/No Surrender
Date Posted: Feb 04 2009 at 5:45pm
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Oh, I must be missing out on a juicy controversy here... Please, can someone please clarify what the references to Kaniklidis and No Surrender are about? Where is a summary of this person's research? What is the No Surrender website? Thanks, Donna ------------- Donna, age 42 Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
Replies:
Posted By: ChrissieD
Date Posted: Feb 05 2009 at 4:21am
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Hi Donna -
The site is nosurrenderbreastcancer.org. I can't speak to credentials or basis for research but he provides a lot of information on BC cancer research and recommendations when there are questions raised. ------------- 39 from MA, Mom(8.5 and 6), Lumpectomy IDC 1.5cm Stage I, Grade 3 ACx4 Taxolx4 dose dense started 11/17; Bi-lateral Mastectomy with expanders scheduled for 3/24/09 God is carrying me through ! |
Posted By: CarynRose
Date Posted: Feb 05 2009 at 5:16am
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When I've shown Constantine's research to my doctors (who are VERY open minded), they weren't that impressed and sort of poo-poo'd it. HOWEVER, I have to say that everything he has told me ended up being right, so I tend to give him the benefit of the doubt.
I would love to find a listing of his credentials so I can justify.
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: krisa
Date Posted: Feb 05 2009 at 6:16am
my naturopath has suggested many of the same things as Constantine.  we know what is best for ourselves....right? |
Posted By: CarynRose
Date Posted: Feb 05 2009 at 7:34am
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When I've run things past my naturopath, he sees no reason to not do as Constantine suggests in terms of supplements.
Chemo, well, he leaves that to my docs.
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: nosurrender
Date Posted: Feb 05 2009 at 1:06pm
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Hello, my name is Gina Maisano and I am the Founder of the No Surrender Breast Cancer Foundation. You can read my story here in the spotlight story section. I was first diagnosed with TN in 2001. My website is a by survivor - for survivor website. We also have a message forum where we get together just like we do here on the TNBC site. What you will find on my site is information about the latest research, chemotherapy and what to expect, how to make sense of your path report, dealing with your medical team, being your own best advocate, and living the best life after cancer. What you won't find is medical advice that you should take without thoroughly discussing it with your doctor first. Your doctor knows what is best for you. Constantine is a medical researcher. He assembles, breaks down, and organizes the latest research and studies and puts them into one place so they are easily accessible to both doctor and patient alike. He is well known to many oncologists and patients alike. He doesn't tell people what to do, people ask him, "what is there for xyz" and you will get a thorough report of every study outcome and research project out there. You then take that information to your doctor and work with him/her on what is best for you. Constantine appears on our site as a courtesy, and he has helped many, many women who post there. He has even obtained appointments with hard to reach TN specialists for women who live in remote areas. He goes the extra step where others do not. Sibu, I don't know what "controversies" you are referring to as it pertains to my site. I welcome you to take a look and judge for yourself. http://nosurrenderbreastcancerhelp.org - nosurrenderbreastcancerhelp.org and the direct link to the forum is http://nosurrenderbreastcancersurvivorforum.org. - nosurrenderbreastcancersurvivorforum.org. There are many TNBC women who post both here and at my site. I consider this site a "sister site" to mine and recommend it all the time to newly diagnosed TN women. I know Hayley and think this is a wonderful resource. Lord knows when I was diagnosed with TN there was absolutely nothing available for TNs. This place is a Godsend! I hope this answers some questions for everyone! ------------- www.nosurrenderbreastcancerhelp.com |
Posted By: trip2
Date Posted: Feb 05 2009 at 1:25pm
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Hi Gina, It is nice to hear from you. Can you tell me what facility Constantine is associated with or what his credentials might be? Where does he do his medical research so that he may be contacted? Is he a doctor? Had medical training?
I am aware that many women find his information reassuring and as we all know triple negative breast cancer is a nasty aggressive disease.
Because there has been so little information as you well know and of course this is changing thanks to this Foundation women are very anxious about finding what they can in the form of good news.
I too like Donna, would like to know as I said, what facility he is with and his title so that he may be contacted or is that possible? Again as you know, having nothing to do with Constantine here, but we have to consider our sources in able to get the correct information and I too find it important as do others to know who or what our source might be.
Thank you so much for your reply and work with triple negative breast cancer, all breast cancer. I hope you are doing well.
Respectfully,
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: CarynRose
Date Posted: Feb 05 2009 at 1:42pm
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Pam,
You can contact Constantine via the No Surrender site. And Gina will make sure that any questions get answered.
I reached out to Constantine earlier today just to get his CV so I can show any doubting folks.
I don't know of any controversy.
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: trip2
Date Posted: Feb 05 2009 at 1:52pm
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Thank you Caryn, I appreciate your reply.
That does confuse the issue to me you see because why do I have to go thru Gina to reach Constantine?
Doesn't he work at a facility somewhere?
What is his CV?
And why do you need it to show any doubting folks? It's so good to see you are doing better. I know it has been a very bad time for you lately.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Nancy
Date Posted: Feb 05 2009 at 2:32pm
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I have seen his name mentioned many times here on the site, and I too developed a curiosity, so I started searching.
I cannot find any credentials any where on the internet, other than this picture.
Is this him? Or are there two by the same name , and that is quite possible.
http://www.tcf-nj.org/web/TCF-2007-Keynote-Speaker-Constantine-Kaniklidis.html - http://www.tcf-nj.org/web/TCF-2007-Keynote-Speaker-Constantine-Kaniklidis.html
I too always want to see credentials, just as when I would need surgery or with Lori, she and I always want to know if the person is board certified. If they are not, they would not take care of me. While I know that a medical researcher is not going to have board certification...or maybe they will...? Medical researchers are usually scientists. Biomedical scientists.
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: nosurrender
Date Posted: Feb 05 2009 at 2:44pm
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I don't know where my reply went! Ok, starting over First, Hello Carynn! How are you feeling! Second, to Pam, Constantine is not a doctor and has never professed to be one. You know how much information comes out of the breast cancer world every day. He compiles all of it and puts it into accessible format where both doctors and patients can easily find the answers they are looking for. He then attends medical conferences and speaks to the doctors directly to get a better understanding of what is happening and he is able to then take that information and make the studies make sense. I do know that he has attended several symposiums and conferences with Lisa Carey and the other leading TN docs. Many oncologists know him because they, too, can turn to him when they need a quick response on the latest test results. I would call him a compiler of research verses an actual researcher working in a lab someplace. You can contact him directly at edge@evidencewatch.com No one has to go through ME to get to him. I am honored and grateful he has taken the time he has to post and help the women of No Surrender. He can give you his CV directly. I wouldn't even try because my brain had enough trouble finding my car at the doctor's today- much less being able to recite someone else's work history. But I would like to add, with anything or anyone, ALWAYS ask your own physician FIRST and never take any info on the internet as perfect... you have to arm yourself with knowledge, then vet that knowledge through your doc and after that make the best choice for YOU. We recommend that on No Surrender as a practice and as a rule. hugs to all g ------------- www.nosurrenderbreastcancerhelp.com |
Posted By: nosurrender
Date Posted: Feb 05 2009 at 2:46pm
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Nancy, hi. We were posting at the same time. Constantine is not a doctor, he never professes to be a doctor. He is like the cancer Easy Button. If that makes sense! hugs g ------------- www.nosurrenderbreastcancerhelp.com |
Posted By: sibu
Date Posted: Feb 05 2009 at 2:51pm
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Thanks to all who are helping clarify. I do intend to check it out more thoroughly. Nancy, I suspect that this title of "Medical Researcher" may be part of what's raising eyebrows. Combined with word of "taking what he recommends to our docs," "using supplements he suggests" and "appearing on our site out of courtesy" somehow evokes the "The Great and Powerful Oz." PLEASE don't take offense gals, I'm just having a little fun with this. He's obviously had quite an impact on many intelligent, knowledgeable women. I have a genuine curiosity about whatever it is he does/suggests/recommends/researches. If indeed they are bestowing the title of Medical Researcher online, I would like to nominate Pam and the tnbc Foundation board as well. ------------- Donna, age 42 Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
Posted By: CarynRose
Date Posted: Feb 05 2009 at 3:00pm
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LOL Sibu.
Your question about Gina having Constantine respond -- I've just noticed that sometimes C is busy and not on the board and so Gina will contact him to make sure he sees the question.
I love the No Surrender Site and have recommended it to so many people, especially on the bcmet.org site, which lately I've found to be less supportive and more negative lately.
All the best,
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: Tracy
Date Posted: Feb 05 2009 at 3:53pm
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All, I think I accidentally started this dicussion on this topic when I cut and pasted an email from Constantine listing his opinions of the very top in the field of tnbc. Apologies for starting this. As a newer member, however, I will say reading all of these posting has been very helpful to me and maybe others on so many levels I can't even start listing. What a great group of women you are. ------------- Tracy San Diego DX 12/20/07, Stage 2, TNBC, Grade 3/2.5 cm Chemo start 2/14/08; rads ended 9/08; A/C - Taxol; Neg. Sentinol Node; lumpectomy; past 5 years! |
Posted By: trip2
Date Posted: Feb 05 2009 at 4:00pm
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Thank you Nancy, your link was informative and I appreciate your sharing this with us. Obviously the man in the link is quite qualified with computer programming.
I still do not understand where he received his medical education to put himself in a position of being an "easy button" as Gina says? No one has explained his medical backgound to put him in a position as you say of advising other doctors and attending symposiums, advising women online. In other words how did he qualify to be doing what you say he is doing?
No one will tell me that.
One just doesn't jump out of nowhere and be totally informed on breast cancer or anything else for that matter.
Is this possibly a hobby of his? Why the secrecy? Caryn, again, why do you have to have permission from him to do anything?
I still see no credentials no medical background showing up.
Gina after re-reading your last post is it possible this man is one in the same thru Nancy's link, a computer tech who has set up a computer program of some sort that can be used in the medical field if so desired and he goes thru what he reads there? Again he would still require medical background that obviously hasn't been proven to this point. Have you personally ever met him? Is he the man in the picture? Is it possible he attends symposiums and is in contact with people in the medical field because he tries to sell computer software he feels might make their job easier which would also explain why he would be attending symposiums? I am just asking out loud.
I would like to invite Mr. Constantine to post in this thread so that this can be cleared up. I know he has been here in the past. Mr. Constantine, alot of women rely on what you say, your advice, probably alot more than you realize. This is their lives they are frightened about and they want to read good news from a good source.
Can you provide us with your credentials? Gina perhaps since you are the one who is able to reach him you could pass along my invitation to post in our thread?
Respectfully, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Nancy
Date Posted: Feb 05 2009 at 4:04pm
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Tracy,
If you think this one is good....go to the Christina Applegate...or the "Let's fix this now!", or the"First dx received, lumpectomy or mastectomy", or the "Obama vs McCain".
These women are not only intelligent and articulate, but they are very highly opinionated....but....very open minded, and will go to the ends of the earth to find an answer. The correct one.
Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: trip2
Date Posted: Feb 05 2009 at 4:49pm
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Nancy I would go to the ends of the earth if I could find answers for our disease as we all would do, our lives depend upon researching all that we can and reading the stories that we do in this forum alone is heartbreaking, it has to stop. This is my passion, this forum, the women who belong and this Foundation who works so hard for us.
We have to ask questions or be led by the nose. The second option doesn't sound good for me, I'll go for ask questions. We have to question everything from information we read online, in a book to our doctors to our sources, it is in our best interest. That is my opinion, some may feel differently and I repsect their feelings. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: nosurrender
Date Posted: Feb 05 2009 at 5:34pm
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All: I am dismayed at some of the remarks here. Constantine does not deserve to be defamed in any way - especially if you knew how much he does for women everywhere. Write to him yourselves- I will give you his email again edge@evidencewatch.com But for heaven's sake, don't libel him without knowing anything about him. It is not fair and it is cruel. An example of what he does for us happened recently. I just lost a dear friend to TN mets- she was in terrible shape- he got her an impossible appointment with a top TN doctor as a personal favor, her husband couldn't get her to the state he lived in, but this doctor did phone consults until she would be able to travel, unfortunately that was not to be. This man has done a great deal for women everywhere. If it is MY semantics that are the problem- it was I who used the word "easy button." The word, "research" encompasses a great deal and does not necessarily mean one is a practicing physician. He has never, once, stated he was a physician and no one I know thinks that he is. I WILL STATE AGAIN- Do not take any advice off the internet without checking with your physician first. If this man causes you concern, please don't read his website or his many papers or his advice he offers on multiple forums. ------------- www.nosurrenderbreastcancerhelp.com |
Posted By: trip2
Date Posted: Feb 05 2009 at 6:01pm
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Gina,
I am not trying to defame or libel this man. All I did was ask a simple question and no one will give me an answer. Because we do not know anything about him we were asking, that is all.
I am dismayed myself at the lack of information on this man yet he has so many followers.
If others choose to follow him then that works for me. I personally choose not to rely on his website or advice for the reasons I have given, no credentials but that is me. His papers you say, has he been published? This is what makes me shake my head.
I have found this subject matter has gotten us nowhere and taken up too much valuable time and appears to be going nowhere.
Everyone of course can read and respect whomever they like.
Good evening. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: nosurrender
Date Posted: Feb 05 2009 at 7:40pm
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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 ------------- www.nosurrenderbreastcancerhelp.com |
Posted By: PineHouse
Date Posted: Feb 08 2009 at 12:26pm
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Hi all, I just feel the need to add my two cents, and feel the need to turn those of you non-believers (or maybe just slightly on the cautious side) into strong believers. I find that Constantine is the most giving person who seems to put in a huge effort of his toward eliminating deaths from breast cancer. I have been metastatic since June 2006, have been using up chemo options like there’s no tomorrow, have been struggling to find what my next regimen will be, have been constantly doing research. I found a great relief when I found Constantine’s newsletter about triple negative due to Gina’s post on http://www.breastcancer.org/ - www.breastcancer.org . As well as the resources that Pam and Nancy post on the “News, Resources & Tips” column, of course. A current link to Constantine’s triple negative newsletter was posted by mainsailset: http://www.tnbcfoundation.org/tnbc/forum/forum_posts.asp?TID=2269 - http://www.tnbcfoundation.org/tnbc/forum/forum_posts.asp?TID=2269 The link of his most current newsletter was posted by Nancy (I believe at the time it was the triple negative issue that has now changed to a post-ASCO issue): http://www.tnbcfoundation.org/tnbc/forum/forum_posts.asp?TID=1931 - http://www.tnbcfoundation.org/tnbc/forum/forum_posts.asp?TID=1931 Constantine has a lot MORE useful information on Gina’s website (his user ID on the forum is ‘Edge’): http://www.nosurrenderbreastcancerhelp.com/ - www.nosurrenderbreastcancerhelp.com . And if you’d like to be wow’d some more, just check out Constantine’s http://www.evidencewatch.com/ - www.evidencewatch.com . The Evidence Watch has a vast information on scientific data, not just for breast cancer, although it is obvious that breast cancer is his passion. He’s a busy guy. But you know what, if YOU need questions answered for YOUR SPECIFIC CASE, he WILL reply to you PERSONALLY in a few days (well, he does have to check in with his database first) with lots of reference included. The catch is of course you need to give him enough info for your situation. Honestly, I have a really huge suspicion that he never sleeps at night. Although myself and some others tend to speak about supplements that Constantine recommends (from his ‘Edge-CAM’ regimen), Constantine is NOT all about supplements. He’s a mainstream guy who does “oncology consultation” for patients worldwide with no charge (not only he doesn’t sleep, but I don’t think he eats either). All he does is giving you a summarized facts based on published scientific data all over the world, whether it be mainstream oncology or alternative (if any). And to tell you the truth, we have had respectful disagreements over issues that are usually stemming from the fact that Constantine demands data & proof before recommending any regimens, and I am more driven by “gut feeling”. Hope this helps.------------- Stage IV lung-06/06 brain-12/08 BRCA1 TNBC Avastin+Taxol,Carboplatin,PARP-Inhibitor,Navelbine+Xeloda,Avastin+Ixempra,Doxil+Cytoxan Currently Abraxane+Gemzar (3/09) http://pinehouse.wordpress.com/ |
Posted By: zenrookie
Date Posted: Feb 18 2009 at 12:43am
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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 |
Posted By: Blucken
Date Posted: May 08 2009 at 6:02am
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All, Constantine assembles research and makes suggestions to take with you to challenge or engage your physicians. The field of oncology changes fast and not all doctors stay up to speed or are willing or have the time to review all choices. Further, many doc operate on the old school premise of they are the experts and you sit there and do what they say. In addition, not all doctors agree with each other. Constantine takes your personal info and provides some ideas based on the latest research findings. He is an invaluable research tool - I was shocked to learn how many women are not being treated with the best/ latest therapies. Constantine at least gives you ideas and options to challenge. Information is not the problem anymore with cancer - it is the overwhelming supply of it that is daunting when you are first diagnosed. I have been in a technical research position for16 years and am used to this but even I was overwhelmed when my wife was diagnosed. Not to mention the emotional challenge of reading through potentially discouraging news. Aslo many oncologists don't believe in supplements - that is not how they are wired. But note that all of the major cancer centers now have CAM research programs, many of which have studied supplements that can help (e.g. curcumin). I heard of a supplement and told Constantine about it - it was very expensive and some women take it. He found the applicable research on it and concluded it is not worth taking - there is no sufficient data to support it. So he is not just some rogue making random suggestions. He is a compiler of data and with his research background (I don't care what field of research by the way), he is able to sort through the clutter of data. He is a resource for women to use and gain confidence in their treatment and protocols. You won't find anyone paid or unpaid who is better. |
Posted By: trip2
Date Posted: May 08 2009 at 1:35pm
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Hello Blucken,
We would like to welcome you to the forum and appreciate any input you might find helpful for us.
I participated in this thread, read everyone's replies but not one person answered my question which was "what are his credentials"? Who is he afiliated with, a hospital, research center? No one answers those questions they just say how wonderful they think he is.
That is ok for you and his followers and I am sincere when I say that if you find good results thru this man then that works for you. I prefer to get my information from a reputable website, Pubmed, there are several and they have credentials.
You folks are all giving your personal information to a stranger over the internet and the only link found on him is something to do with computer programming. Doesn't that concern you? Maybe not. I wouldn't dare give my personal information to a man who I don't even know, calls himself a researcher but has no credentials over the internet. How do you know who this man really is besides the fact he sells software or programming?
How did he get his training in the medical field? Did he graduate from college and has a degree of some kind that gives him the knowledge to research the correct information that he is giving to all of you? I just find that all very scary.
No one has answered my questions, all you and they say is that he is Mr. Wonderful. I want credentials but then that is me. If it works for you then great! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: sibu
Date Posted: May 09 2009 at 4:29pm
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Hey Pam I got your name and address off the Internet and I don't have any credentials. Don't worry though--you live much too far in the boondocks for me to stalk you. LOL love ya. donna ------------- Donna, age 42 Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
Posted By: zenrookie
Date Posted: May 11 2009 at 5:13pm
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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 |
Posted By: LRM216
Date Posted: May 11 2009 at 6:01pm
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Hi all: Just a bit more info that I obtained from Edge's own site:
* Constantine Kaniklidis is a medical researcher specializing in breast cancer, and the author of the EBM (evidence-based medicine) site http://breastcancer.evidencewatch.com/ - Breast Cancer Watch site, which publishes evidence-based systematic reviews and critical appraisals of the latest breast cancer treatment research findings for use by patients, co-researchers and clinical oncologists at many leading cancer centers. ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: zenrookie
Date Posted: May 12 2009 at 10:03pm
| 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 |
Posted By: MsBliss
Date Posted: May 18 2009 at 11:22pm
| I am a frequent visitor to No Surrender. I have printed out Constantin's reports. I have shared the information with some of my doctors and they are very impressed with his work and interpretation of the latest data. They have encouraged me to refer to Constantin's work and I do. I am grateful for his posts and participation. |
Posted By: BrendaF
Date Posted: May 19 2009 at 10:11am
|
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. ------------- Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads. Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6. brain, lymph, pleura, bone mets. Started Xeloda 8/24/09 |
Posted By: nosurrender
Date Posted: May 24 2009 at 6:37am
|
Hello again, I was coming here to post about CMF and TN but found that this post and the same questions have popped up again.... Bill, Paul, Linda, Lani, MsB, Brenda, I think I can say that you all have benefited from the information Constantine has provided you! Constantine takes the reams of information that is disseminated in the medical world and concentrates it into clear, concise language, providing study results and the actual study data with links to the hospitals/doctors/research centers reporting them. You have to be pretty proficient at computer technology to be able to do this. You have to have a heart of gold to spend the hours upon hours a day he does for no other reason other than to help women with breast cancer. I should add he helps men with breast cancer too. Trip2, you wrote the following questions and I thought I would take the time to answer them as best I can, Question 1. "I participated in this thread, read everyone's replies but not one
person answered my question which was "what are his credentials"? Who
is he afiliated with, a hospital, research center? No one answers
those questions they just say how wonderful they think he is."
answer: He is not affiliated with any one hospital or research center. He researches the data that is put out by hospitals and cancer centers and puts it into a format that is easily accessible to patients and doctors alike. For example, "XYZ University" is conducting a study on the effects of Avastin as first line treatment in TNBC. Constantine will gather all the info "XYZ" has released, puts it into one place and then gives not only the direct link, but the results, updates on the results, other opinions on the study, what other centers are running the same study and what doctors in your area are working on the same thing. His background is in computers and the internet. This affords him the ability to do this kind of deep web search for us. Number 2: "That is ok for you and his followers and I am sincere when I say that if you find good results thru this man then that works for you." Response: I can sincerely reply that we don't consider ourselves "followers" but rather greatful recipients of the information that is obtained by him. Number 3: "I prefer to get my information from a reputable website, Pubmed, there are several and they have credentials."
Response: You would be happy with Constantine's information, should you ever request it, because he often takes you to Pubmed to cite study results, as well as many other well known institutions. I have yet to see a hairbrained study out of East Nowhere in one of his data reports. Number 4: "You folks are all giving your personal information to a stranger
over the internet and the only link found on him is something to do
with computer programming. Doesn't that concern you? Maybe not. I
wouldn't dare give my personal information to a man who I don't even
know, calls himself a researcher but has no credentials over the
internet."
Response: No one has to give him any information at all. He does not contact us, he is there if we have a question. You could write him an email and ask what his opinion is on a drug combination and never mention your name, if you are the patient, if you are asking for yourself or your mom or anyone else. Further, what kind of credentials are required to gather research information that is put out by hospitals and doctors? A medical degree or a computer background? He does not prescribe, he does not suggest overturning your doctor's orders, he simply shows you data on the subject you are interested in, he is also quick to point out if a study is too small to pay attention to, what study is based on theory vs empirical data, and what best pertains to the question you had. Number 5: "How do you know who this man really is besides the fact he sells software or programming?" Response:Never, ever, not once, has he tried to "sell" software or programming. He doesn't do that for a living as his work in the computer field is not the manufacture or selling of any product. Number 6: "How did he get his training in the medical field? Did he graduate
from college and has a degree of some kind that gives him the knowledge
to research the correct information that he is giving to all of you? I
just find that all very scary."
Repsonse: I do not know what his degrees are. I can surmise they are in the technical/computer field. What kind of degree do you think is best for a person to have to compile data from across the world from published studies that are thoroughly cited for your own review? Number 7: "No one has answered my questions, all you and they say is that he
is Mr. Wonderful. I want credentials but then that is me. If it works
for you then great!"
Response, I sincerely hope I have answered some of your questions. Some of his credentials have been posted above in a separate post. He is "wonderful" because of the incredible amount of time he takes with us. He doesn't have to do it, but he does. He was touched by breast cancer in his life. If you notice on his website, he has dedicated his work in memory of someone he lost to this disease. He took a bad situation and instead of walking away, realized that he has access to things that we, as cancer patients, do not have the time, or patience to try to dig out ourselves. He also compiles these studies for busy oncologists. He does it to help women and men fight and win the battle we are all waging. He asks for nothing in return. I hope this helps clear up any questions you have. I applaud you for being skeptical and protective of your fellow sisters- we are very much alike! Anyone who knows me, knows I wouldn't endager my sisters who post on No Surrender, for anything. I am a mama bear when it comes to all women with this disease- and I think you are too, trip2! I can truthfully and fullsomely say, that Constantine is truly an assett and does not present any threat or misinformation. Big hugs to all! g ------------- www.nosurrenderbreastcancerhelp.com |
Posted By: LRM216
Date Posted: May 24 2009 at 8:13am
|
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.
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: MsBliss
Date Posted: May 24 2009 at 10:46am
| Many thanks for responding to the posting. I repeat again that I was overwhelmed with parsing through the peer review literature and it was only because of Constantine's summaries that I was able to understand and ask the pertinent questions of my onc. In fact, his two part summary about triple negative issues and tn molecular co-factors helped tremendously--even my oncologist noticed something that would have otherwise been overlooked. My onc said "in the mountain of all the research data, sometimes important issues get muddy. I'm glad you showed me this". That is saying something. |