Constantine Kaniklidis/No Surrender |
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sibu 
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Joined: Jun 27 2008 Location: FL Status: Offline Points: 660 |
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 Topic: Constantine Kaniklidis/No SurrenderPosted: 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 |
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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 |
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ChrissieD
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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.
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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 ! |
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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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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
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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 |
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krisa
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Posted: Feb 05 2009 at 6:16am |
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my naturopath has suggested many of the same things as Constantine.
 we know what is best for ourselves....right? |
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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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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
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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 |
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nosurrender
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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. nosurrenderbreastcancerhelp.org and the direct link to the forum is 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! |
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www.nosurrenderbreastcancerhelp.com
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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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,
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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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
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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 |
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trip2
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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.
Edited by trip2 - Feb 05 2009 at 1:55pm |
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Nancy
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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.
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
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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 |
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nosurrender
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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 |
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www.nosurrenderbreastcancerhelp.com
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nosurrender
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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 |
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www.nosurrenderbreastcancerhelp.com
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sibu
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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. |
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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 |
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CarynRose
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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
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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 |
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Tracy
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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.
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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! |
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trip2
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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, Edited by trip2 - Feb 05 2009 at 4:26pm |
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Nancy
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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
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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 |
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trip2
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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.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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nosurrender
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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. |
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www.nosurrenderbreastcancerhelp.com
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trip2
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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.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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