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pattypoo54

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Reply with quote  #1 
Gina,
I go to the breastcancer.org site in addition to your site. I was on yesterday, there is a poster (March907) is her screen name, that is posting some very negative posts on the triple negative thread. I don't normally post much but she made me so mad, I let her know how I felt. I hope you go over there and put your two cents in. I would think her posts would scare a new person just diagnosed. I didn't even like reading the posts and I am almost five years out!! Thanks for all your input, you are awesome.
Hugs
Patty
nosurrender

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Reply with quote  #2 
OK Patty- I went over there!
I really love the way you are thinking of the newbies... remember what it was like for us years ago when all we heard was " oh geez you have the BAD one"
NO MORE.

We have HOPE- we have RESEARCH- we have a FUTURE!

Love you
g


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CherylG

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Reply with quote  #3 
Too bad the moderators over there don't seem to catch those things. I know there are a lot more posts to watch there, but geez!! Get more moderators or something.
This is why we are sooo lucky to have you Gina.

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Indigoblue

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Reply with quote  #4 

Oh Dear, Pattypoo,
 
Hi Pattypoo~  I almost never go to the Mother-ship.  Thanks for informing us about the negative Triple Negative Attitude.  There are many "old sites, books, physicians and professionals who have us buried before we've even had an MRI!!!  It makes me so furious, as doom, gloom, in the Triple Negative Room, continue to permiate the diagnostics, frighten the new diagnosed, and the ignorance on variations of every indiviual are like snowflakes!  Every case is completely different, every body reacts to medications in various ways, and the "actual cause" for triple negative disease has yet to be discovered.  For all we know, it's activated by screwing in a "lightbulb" (there's a how many triple negative joke in there, somewhere; lol).
 
Thank goodness for Gina (thank you, Gina!) and Constantine Kanklidis' Research Breast Watch and their collective, positive, and logical thinking!  I was a newbie with this, and scared; no information with a hopeful outlook could be found anywhere, nor were there any sites, books, libraries, medical support groups or nurses who even KNEW WHAT IT WAS (unfortunately, those uneducated and uncaring boogy-docs, boogy-nurses and boogy-research books are still in circulation.
 
Every day, I read new, incredibly positive infomation about this disease, how new treatments are being developed, how the Triple Negative Disease Patients (especially when found early) live a long, happy life; and on Triple Negative Discussion Boards, there are endless stories about beating this illness for longer than 30 years!  

It all depends on how one wishes to look at the disease, what they see as an alternative, and non-altnative option for treatments;  Tamaxofin, Estrogen Hormones, and Hercepton, along with many new chemo treatments are useless to the Triple Negative Patient; and it's wise to "act quickly" and pay careful attention to ANY Breast changes; particularly if Breast Cancer is prevalent in one's family history; even that assumption is not accurate, for ALL cancer is sneaky, misunderstood, and as far as I know, a CURE has NOT been discovered.  The treatments and detection mechanics have vastly improved (my mother died of Inflammatory Cancer in the early 1980's, when all Breast Cancer diagnosis and treatment was essentially considered "one disease, with one treatment).  
 
Ideally, being healthful, watching our for obvious Toxic Environments, using common sense, a non-fat, low calorie diet, and (I just found out my Vitamin D Level was almost "0", and how important it is to our body, cell, and brain function).  Calcium, D3, Exercise, a Balanced Diet, a "living Green", are good for everyone, men and women!  A healthful lifestyle keeps us out of the hospital wheelchairs; it's beneficial to our blood, brain, mind, heart, liver, intestinal tract, pancreatic activity, gall bladder, bones, and and over-all healthful immune system.  I don't think a smart and "feel good lifestyle" can hurt, especially if we're in good physical condition before treatment begins.
 
It will be wonderful when the actual "receptor" or "missing link" is found.  The "NEGATIVE" term given to this disease in the first place was the first mistake...we're already feeling negative about having Breast Cancer, and then tack on TRIPLE NEGATIVE, Genetics, and the Unknown about an Unknown Cancer...and patients are frightened, afraid to seek treatment, and give up hope.  Their families and spouses are frightened as well, and don't know where to turn.  At least we have answers to many of the unknown questions we sought after years ago. 
 
Thanks to Gina's brilliant, creative, and caring intellect, we have been given a cherished site, filled with information, friendship, kind hearts and it's intimate, meaning, not overcroweded as we lose touch with so many on the popular Support Sites.  There are also many misinformed and misguided patients who think their way is the only way. 

This remarkable creation of Gina's is priceless, invaluable, and has connections to every aprroved site available!  Breast cancer.org is the mother-ship; but NO SURRENDER, BY SURVIVOR FOR SURVIVOR SUPPORT, offers sincerity, trust, and GINA, FLUFFY, CONSTANTINE, NURSE NICKY, AND MANY PHYSICIANS, NURSES, AND MEDICAL RESOURCES.
 
 
Visiting every available Support Site, (and always lost, confused, and felt slightly unwelcome or suspicious),  the easy definitions, unconfined expressive attitudes and protective natural surround the atmosphere,  similar to the comfort, honest pleasure, meditative & calming relaxation is always available; and as inspiring and refreshing as a mountain's Hot Springs healing bath of clarity, wellness, with the addition of newfound pride as we remember our origin, our battle-cry, and the wisdom shared by all:  NO SURRENDER, EVER, NEVER, EVER; NO SURRENDER, NO ONE WANTS TO GIVE UP THE FIGHT AS WE CONTINUE TO SEARCH FOR THOSE IN NEED AND FOR THOSE SEEKING OUT THE ABILITY TO SAY "WE, I, ALL WILL BE FEARLESS IN THE FACE OF THIS DISGUSTING DISEASE, AND ALL WILL PREVAIL!  Thanks to Gina, Constantine's Cutting Edge, and the latest headlines or cancer news, we are informed, given a change to say YES or NO; and wow, Gina, we are FREE~

Everyone plays a major role in creating and offering questions, information, the latest clinical trials, techniques and Combat Barbie is one of many who offer Beauty Techniques, how to be reborn, and like all the members here offer brilliant ideas on how to survive, and how we can find quality of life after Breast Cancer and "what now?".  The collection of life-styles and support systems, fresh ideas, sharing helpful ways to support one and all, and we all adore the founding members, as well:  Thank you's to    Gina,    Constantine Kaniklididis,  and Nurse Nicky , began NO SURRENDER, along with Gina's Blog (I used it forever as the only realistic, knowledgeable TNBC Source of Information and Support; and continue to go there often for help); along with many intelligent, helpful members and friends who assisted Gina, spread the word, and (in my opinion), the creation of the best Support Help Line in the World), was born.  Some have gone, stayed, chose to forget about their cancer;  most people learn about the realities of their own personal journey, find reliable sources, other opinions, and welcoming hearts, creative minds, and how to find reliable doctors, hospitals, clinics, tests, and dependable and trusted treatments for their illness.  
 
I obviously love this "little Island of Hope and Encouragembt", and along with it's intelligent support members, I hope and pray it continues to be the "perfect, loving, and simple site connected to reliable and trusted resources (medically and legally).  It's my favorite Vacation Resort when my own fears are impossible to handle; thank goodness Gina found me.  She led the way with her magical lantern.  
 
I could finally see clearly, and logically understand the basics of not only TNBC, but all of the others, as well.  My surgeon told me not to go to the internet, read bookds, or even go to a support group for help.  He commanded me to listen ONLY to him. 
 
He didn't tell me ANYTHING!!!  So, when someone is drowning or caught in a fire; their demise is generally due to negative thinking, fear, panic, irrational thinking and foolish decisions aided by the old NEGATIVE hopeless attitudes.
 
In March9's defense, we all go through this spooky tunnel of fright, fear, and the "not" Funhouse; whose corridors seem endlessly lost; we all feel terror, even those who have faith and courage.  We don't know what lies around the next corner, or how we will survive.  Personally; I question whether or not Triple Negative Cancers should be categorized as a "true breast cancer", and often wonder if scientists aren't looking for a sqare in a round hole; or a sphere in a sqare hole.  I read a great deal of  information; and some of the same medical words continually appear referring to TNBC, and a long list of other peculiar illnesses; like kidney, pancreatic, brain disease, Herpes, Fungas Infections, Skin Disorders, Immune Disorders, and rare Breat and Testicular Cancers.  It's taken many years to understand this foreigh language (and I barely know the Alien Medical Alphabet Soup)
with 40 years of Cancer Deaths (strange and rare forms, as well), Basal Skin Cancers, and you wouldn't believe my family medical history if you looked at it.  They physicians rarely did; and treated me like a Nutcase or a Hypochondriac for years. 
 
One needle biopsy; one MRI; some serious blood tests, and ONE intelligent and devoted doctor might have helped to avoid all of this pain, suffering and abandonment. 
 
Perhaps March9' is afraid, and needs the loving support of angels like Gina, Kings of Hearts like Constantine, the Strength and Compassion of Nurse Nicky, and Special Caring Women like you, Pattypoo. 
 
I'm not the best when it comes to helping; and my "negative subversive, and all-too-often cynical viewpoints bring with it a host of anger, dislike, and many who don't understand "playing the 'Devil's Advocate', can bring wisdom, thought-provoking discussion, and truth (rather than fantasy) to an important topic like Triple Negative Disease, and all of it's secret hiding places.  
 
We all are hopeful for a treatment to give us long lives, painlessly, and therapies like Doxil, Abraxane, Paciltaxel, new Surgical Techniques like Sentinal Node Biopsy (hopefully, even that will soon be hopefully discarded and replace with less invasive procedures; the PET, Digital Mammograms, Ultrasounds, new Radiation Techniques, daily research discoveries, and a growing population of FEARLESS WOMEN, proud and willing to fight this Beast, destroy it's relative beginnings, and overcome cancers of all kinds, once and forever.
 
Thank you for your post.  You made my heart go pitter-patter; and review the "good stuff" happening as each day new and successful treatments are being discovered! 
 
Have a great day!
 
Love,
Indi
 
 




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Reply with quote  #5 
Indi, Patty & Gina,

Thanks for a wonderful post as usual.  I checked out the March posts on breastcancer.org and they are pretty doom and gloom.  I consider myself a newbie and I'm depressed about it.

But I guess she is venting and the thread is probably the only place she can vent in.  I truly feel sorry for her because she is obviously in a lot of pain as many of us are.  She will calm down and regroup.

I think it was a good idea for you (Gina) to post because we NEED to know that it's not a death sentence.  We already are made to feel that we have a scarlet letter on our chests. 
Limner

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Reply with quote  #6 
Nah, I am not going to go look at that other post site - I am going to stay right HERE. 
 
Initially, my surgeon did not mention what type of breast cancer I had - he just gave me a standard "we can take care of this-horse race percentages " dialog.  I requested a copy of the path on the biopsy, ran the numbers on the internet, and said Holy Shit!!!!!  I came back to him (pre-surgery) and said what about this 3N report? and he said, oh, we better get you an oncologist now.  I went to her and SHE was negative about the 3N. 
 
I found your NO SURRENDER AWESOME site and said NOW we are talking my language.  Right away I felt I had crashed my plane in a friendly country where the natives were intelligent and could teach me the use of good resources for healing, where I would Like to hang out while getting back up and running.  Not that I run much.  I had the surgeon hook me up with a more forward thinking oncologist, involved with clinical trials at the NCI and now back in Fort Lauderdale.  I have just had my first chemo treatment hours ago. 
 
Indie - I love your long posts.
 
Mazel tov sisters, and those few brothers dealing here too - Mary
 


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nosurrender

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Reply with quote  #7 
We are SO GLAD you found us!
Don't listen to stats.... they are twenty years old and do not take into account ANY of the new tx's we are doing today.
You are going to kick this cancer's butt.
Big hugs to you,
g


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onecent

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Reply with quote  #8 
That is how I feel Mary!
I don't go anyplace else.
I believe in positive force and that is what is here.
Thank you for all you do for us No Surrender.
Warmly,
Penny


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NancyJane

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Reply with quote  #9 
I agree, this site is wonderful.  I also get alot of encouragement and support from the triple negative foundation site: tnbcfoundation.org.  All I know is, we are all in this together.  I want to use my energy to help my fellow triple negative sisters.  Sending you all much love and light !

Nancy Jane
Marly

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Reply with quote  #10 

I know what you mean about March07.  I had started a thread called "Need hope being node positive" and her reply brought me down so badly, I didn't go onto the site for weeks.

nosurrender

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Reply with quote  #11 
Hey you guys are great.
Thanks so much for being here!
When I was diagnosed with triple neg SEVEN years ago, I was so pissed at how negative everyone was- especially doctors.
They don't know what to say because they prefer to be able to write a script for an anti-hormonal.  They can't with us.
I ran into this mentality when I had my spinal surgery. I am allergic to all pain meds but I was sent to a pain management doc. Since he couldn't write me a script for some narcotic that would just knock me out, he threw his hands up and gave up on me.
I decided to start my own PT and overcame the pain and limitations I had and I did.
Six months later I was dx'd with Triple neg. There was no way I was going to accept the "Oh you are Toast" prognosis!

I think being a stubborn bird is stronger than any chemo!


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Indigoblue

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Reply with quote  #12 
Beautiful Gina,
 
Queen of our hearts...
What diagnosis was given to you when you had back surgery?  I don't remember reading about the details...but like you, my back was in agony for years; it was my back pain which I thought must be the reason the breast pain was so horrendous.  I went to the top Orthopedic Surgeon for back injuries; he said I had several discs that had been injured years ago and were causing calcified bones and spurs to develop.  Interestingly, I have many calcification's in the breasts and even my heart.  I was told it was all a part of aging...I was in my late thirties and early forties; I wonder if there is a connection between triple negative breast cancer and these qualifications which are said to be harmless; and could they possibly affect the hormone receptor system, tangle the language; like, the cranberry juice on my laptop; lol. 
 
Thanks for everyone's feedback.  You understand people so well, and the icy mountain trek when you just know you are going to slip and fall; you fall.  When you tell yourself, no way; this is easy, you make it to the top.  Waving your flag and hurray, this was easy, but let's not do it again, please...
 
love,
Indi
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