nosurrender
Benevolent Dictator
Registered: 09/07/07
Posts: 4,999
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Reply with quote | #1 |
The following is a brief overview. I will post in much greater detail this week what was learned.
#1. The head of Memorial Sloan Kettering completely, thoroughly and SCIENTIFICALLY debunked the "reports" that Adriamycin does not work.
IT DOES. And if you had it, be happy you did. He had report after report, study after study, PROVING its effectiveness.
#2. If you are dx'd with Triple Negative breast cancer and have not started your chemo yet, ASK YOUR DOCTOR ABOUT CMF instead of A/C. It is being reported as being equal to if not more effective on TNBC primary cancers.
(Personal note: I had a bad TNBC and was given CMF EIGHT YEARS AGO)
#3. Radiation works. There were different top docs showing the long term benefit of getting radiation, not just in killing excess cells immediately, but ten years down the road.
#4. Surgery: THERE ARE WAYS TO DO AXILLARY DISSECTION AND PRESERVE THE ABILITY TO RETAIN LYMPHATIC DRAINAGE. This means- NO MORE LE! They take a deep lymphatic vessel and through microsurgery, connect it to a nearby vein. That means your arm can drain and you don't get LE ANYMORE.
IF YOU ALREADY HAVE LE YOU MAY BE ABLE TO DO THIS SURGERY NOW TO CORRECT IT!
( I almost fell out of my seat when that presentation was going on)
#5. Radiation and Reconstruction. If you have Tissue Expanders, DON'T GET rads with them in place. First, the metal port causes radiation "scatter" which can damage your heart and lungs. Second, since the expander is overinflated, is has stretched the skin very thin- radiating the skin like that makes it even more thin and fragile ( that is why I am a chocolate mess)
They strongly recommend surgery, Tissue Expanders being filled during chemo, finishing chemo, having your exchange to implants, AND THEN GETTING RADS.
#6. DCIS? LCIS? Taking a drug to prevent it from returning? Tamox is the most popular, but you MUST FIND OUT IF IT IS EFFECTIVE ON YOU! The head doctor said if you are not getting wicked hot flashes from the tamox, you may not be metabolizing it- which means it is not working. SO- if you are post meno, or almost post meno and can be pushed over to meno-land, GO ON FEMARA INSTEAD.
#7. There was a doctor there who is the one. THE ONE. She is the living embodiment of NO SURRENDER. I will be writing something much bigger about her, but when you are wondering if anyone is "out there" doing something to help us.... there is, SHE IS. And she is as pissed off at the beast as we are and she is kicking ass and taking names. I spoke with her privately and thanked her on behalf of all of us.
#8. Vitamin D does WORK in helping prevent BC and BC recurrences. BUT you must include losing weight and exercise to get the biggest benefit from it.
More later....but here it is- A PICTURE OF OUR CONSTANTINE- I have to tell you that he is even more dear and special in person. He is respected by all the top doctors, and I am so grateful he is a part of our lives. HE ROCKS.
Attached Images:
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Indigoblue
Queen Blue Sky & Golden Light
Registered: 09/08/07
Posts: 1,071
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Reply with quote | #2 |
(((Gina))),
Awwwww...you look soooo pretty, and Constantine is soooo handsome, you both have clear, bright eyes, and incredibly beautiful smiles! Thank you, so much for your ACE Reporting and for sharing. Brilliant coverage, and I look forward to reading more news from the BC Front-lines.
Love,
Indi
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Thank you, Angels ~ Here, Now, and Infinately Blessed |
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CherylG
lifetime member
Registered: 09/09/07
Posts: 1,382
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Reply with quote | #3 |
GINA ... such amazing news you have come back with!! Surgery to fix LE?? I would have fallen off my chair too. I wonder how invasive it would be. I can't wait to hear more about that doctor and whatever else you discover.
The pic of you and Constantine is great. You make a great team. Thank you Gina for all you do and thank you Constantine for being our knight in shining armour.
Love and eternal thanks to you both
Cheryl
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When you get to the end of your rope, tie a knot and hang on...Franklin D. Roosevelt |
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Calico
lifetime member
Registered: 03/16/08
Posts: 1,082
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Reply with quote | #4 |
Nice picture!!!! 
Constantine, so very nice to 'meet' you finally 
Thank you so much for the coverage,
I'm with you on the radiation, had all the above, scattered I guess....
Fixing LE? That would be so awesome!!!
Looking forward to learning more!!
Thank you both so much for being out there this weekend!!!!
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~ There are lies, damned lies and statistics ~ |
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coco
goddess
Registered: 08/30/08
Posts: 151
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Reply with quote | #5 |
Interesting and enlightening report...and a great picture of the dynamic duo!!
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We are each of us angels with only one wing. And we can only fly embracing each other.
- Luciano de Crescenzo |
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k4katz
lifetime member
Registered: 11/14/07
Posts: 580
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delphinus
chocolate fountain
Registered: 03/22/09
Posts: 38
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Reply with quote | #7 |
Gina and Constantine, I am so grateful for both of you!!!!!
Your light and goodness shines so brightly!!!!
xoxox
janet
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LRM216
Bag of Chips
Registered: 03/18/09
Posts: 18
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Reply with quote | #8 |
Gina - your post was great and we can't thank you enough for all you do for us! God has a special place for you in heaven! 100 years from now!
Hugs,
Lnda
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I am walking a long, lonely road, but I know I am not walking it alone. |
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jadesloge
goddess
Registered: 05/08/08
Posts: 139
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Reply with quote | #9 |
I agree with everyone else, Gina. Thanks for going to that conference and summarizing it for us. It is appreciated.
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Julie |
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Indigoblue
Queen Blue Sky & Golden Light
Registered: 09/08/07
Posts: 1,071
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Reply with quote | #10 |
Constantine and Gina,
I thought this song by Iz Kamakawiwo is the finest version of "You Are The Wind Beneath My Wings", that I've ever heard...it brings joy to know you both, and you are both heroic in every sense of the word...
http://www.youtube.com/watch?v=xPJeD6DvQ94&feature=related
Love,
Indi
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Thank you, Angels ~ Here, Now, and Infinately Blessed |
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ETF
cupcake
Registered: 09/07/09
Posts: 11
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nosurrender
Benevolent Dictator
Registered: 09/07/07
Posts: 4,999
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Reply with quote | #12 |
Hi, no she is the head of the Ispy trials and all the clinical trials in the US. She is really fighting for us.
Indi, I LOVE Izzi! thank you so much
Thank you so much everyone- it was a wonderful experience and I am going to attend others so we can be on the leading edge of all the latest info- and I can only hope to have our Angel Constantine with me!
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edge
Chief of Research
Registered: 10/28/07
Posts: 585
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Reply with quote | #13 |
To one and all: Thanks to one and all for the kind words. Indi, as always, in your remark on my complex complexion, you see what others don't see. However I am worried that you have found another medical researcher to run around with, so I am hoping beyond hope that the clarification below will make you realize where the true gold, not just the glitter, is to be found. I'm here should you come to your senses. So, although I feel somewhat churlish to bring this up, I must let everyone know that the camera somehow malfunctioned, and on one side only, capturing Gina wonderfully but rendering the image on the other side, namely me, considerably distorted, a fluke of the shutter as it were, so I'd like to take this opportunity to set the record straight. This photo I am supplying, although still not quite getting the full essence of my Greek/Cyprian je ne sais quoi, should provide a more accurate sense why I am who I am, if not fully how I am or what I am, deep questions best left for the history books: 
It caught me on one of my many late-nights pouring (I prefer candlelight) over a volume of the respected journal Acta Hematologica and Neoplasia: Carcinogenesis, Pathogenesis, Mutagenesis, , Oncogenesis, Teratogenesis and Tumorigenesis, or AHNCPMOTT as we all lovingly call it (the abridged, large-print edition). Who needs Netflix with AHNCPMOTT around? (Some have told me there is a slight resemblence with Johnny Depp but I don't see it). I don't blame Gina but while we are doing evidence-based medicine we could at least try to do some evidence-based photography, and next time with a good camera (hope Gina isn't reading this). Well, that's enough, back to AHNCPMOTT.
Constantine Kaniklidis Breast Cancer Watch edge@evidencewatch.com |
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ETF
cupcake
Registered: 09/07/09
Posts: 11
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delphinus
chocolate fountain
Registered: 03/22/09
Posts: 38
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Reply with quote | #15 |
Constantine, you are SO funny!!!! I'm laughing so hard!
Brilliant, witty, and DEFINITELY handsome...in BOTH photos!!!!
xoxoxjanet
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nosurrender
Benevolent Dictator
Registered: 09/07/07
Posts: 4,999
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Reply with quote | #16 |
Johnny Depp- blahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh
If there is any actor that Constantine resembles, in manner, elegance, grace, humor and mischiefness, there is only one.
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kmobley
goddess
Registered: 04/03/09
Posts: 180
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Reply with quote | #17 |
Gina,
Do you think CMF will replace AC as standard treatment?
This information is good.
Kay
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