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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2008 at 8:31am
Hayley,
 
Thank you for the post as to Ms. Applegate. However, the media has done nothing to correct her statements, and the young women who are her fans are being mislead as to the diagnosis and treatments for BC.
 
Is there a way to contact the media and stop this nonsense that she is spreading? I got on her web site, which is not quite finished, and sent a comment telling her to stop telling the public that she is cured, when there is no cure for cancer, and that she is misleading the public by making that statement. Of course, I have not gotten a reply. I will send a comment to Oprah, but that will probably not help either.
 
Yes, Pam does have a lap top, but if this one stops working we will definitely let you knowWink 
Nancy
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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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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2008 at 9:23am
Hi Hayley,
 
It is so nice to "see" you!
 
We know you are working hard and it gives us a feeling that finally help is out there.  You'll never know how much we appreciate what the Foundation is doing.
 
Love
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2008 at 10:32am
we could each write a letter to the editor of our local newspaper===this is october, ie. breast cancer awareness month.

a couple of weeks ago, the owner of the real estate company that I work for, sent out an email encouraging everyone to participate in the Komen Race For The Cure...as he stated: 
" we are so close to a cure"

Well, this was news to me. Smile





Edited by krisa - Oct 06 2008 at 10:33am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2008 at 11:09am
Krisa,
 
Did you tell this out-of-touch-doesn't know what he is talking about owner, that there is no cure, and that we are no closer to finding a cure than we were 70 years ago? That the only treatment is poison which is infused through your veins to the point of killing you. Then you are given meds to offset the poison, and that these meds actually do harm to your dear bodies also.
 
Writing a letter to the editor is an excellent idea. We need to inform them as to what Ms. Applegate is telling the public, and that the information is false and misleading.
 
We need to tell them to visit the TNBC Foundation site, and to read what the gals, their families and friends are posting. Also, to visit all the other BC sites.
 
We need to tell them that if they checked, they would find that only 20% of the donations for The Susan G. Komen for the Cure actually go to research. Thjat is what Connie had posted just a few days ago.
 
We need to tell them that there is no specific treatment for TNBC, that they give you gals the same tx as for BC+. Yet TNBC is a very aggressive BC.
 
Enough with the "awareness" as CarynRose stated. Just find the cure.
 
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2008 at 1:30pm
Nancy,
He is my boss and I would like to have a job when I go back to work. LOL
I have met women who have had breast cancer who believe there is a cure, so i can't fault my boss for not knowing.
Writing is not my forte, but I am going to compose a letter for the Oregonian.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Darla Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2008 at 2:21pm
Hello Ladies,
 
I just wanted to jump on the "Nancy Fan Club Bandwagon" - Nancy thanks for all you do - and all of you ladies. No wonder people quit there jobs and become full-time advocates - there is so much crap being propogated out there, and I'll say it again - I hate October! Maybe I'll call it Breas Cancer Misinformation Month - For all the "awareness" campaigns out there I bet if you took a survey the majority of people would say that BC is curable if caught early and would seriously underestimate the number of women who die from it.
 
I mean "their" jobs - damn this post-chemo brain.


Edited by Darla - Oct 06 2008 at 2:22pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2008 at 3:06pm
Darla,
 
Oh! They do! They do!! They tell Connie "you will be just fine"! Connie said she would be sure to tell her doctor that!
 
Or they say, I know women who had this 10 years ago and they are "just fine". Yeah!!! Well Sweetheart! This ain't your grandmother's breast cancer!!
 
Or....How is Lori doing? She's all done now? What the H---? Yeah! Lady! She's all done now! Of course.....there's nothing else to do now!!! Just sit and worry, but that is my job!
 
I think my letter to our Altoona Mirror will say just what you said: "BREAST CANCER MISINFORMATION MONTH". How much do you want to bet that when I send this letter, with Ms. Applegates' BS propaganda message as so very wrong, that they will not print it?
 
I will send it, and if/when it is published, I will post it on the site. In fact, all of you who do send a letter to your paper should post it also!
 
Chemo brain....senior moment...Darla they are one in the same sweetie!
Nancy
 
is anyone else having a problem typing a reply? Everything is all shaky and the little blue circle keeps coming up when I move my mouse beyond the reply section.
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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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Post Options Post Options   Thanks (0) Thanks(0)   Quote billie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2008 at 8:07am
Good morning Ladies,
        Hi Haley,yes our dear friend has a laptop now,and I along with Nance will be sure to let you know right away if it crashes.
 
       So ! Let me tell you how our beloved Miss Pammie got a laptop.Even tho Connie,Nance,nor I could not figure out a way for us to purchase her one,we put out the word that if anyone had one just laying around that was not being used and guess what!!!Nancy (whom I call Nance)Ya'll have to try to forgive Nance and I ,while we do not have chemo brain,we certainly can relate with all of you , as to ours  ,we call ours senility.So one day,when Nance had time to direct her brain towards something other than the foundation she happen to remember that her son in law(Lori's Husband,a while back happened to ask her if she would like a used laptop.At that time Nance said no ,but that she was going to ask if he still had one on hand,and he did.Not only did Nance and her family send one to Miss Pammie,Nance's son in law took time to clean the lap top up for Miss Pammie.The last time that Pam and I had mention of her new baby(her new laptop). she was propped up against pillows and a heating pad for her aching back and her feet and legs were stretched out in front of her on her bed,(her feet and legs,bent and hanging down) begin to hurt if she is at her computer desk for to long a period.What a wonderful gift for such a dedicated member of our foundation.
     So you see ladies,the moral of this story is that you have to open up your voice and ask for what your dear friend or even  your needs are for.No one can help you unless you speak up.And that is the same way I feel about getting information to John Q Public about Triple Negative Breast Cancer.
 
     I used to watch Ellen everyday.But I have to say that I am a little put out with her,but I intend to keep trying.I have sent 2 emails to her with no responce from her or her staff.AngryAngry
    I simply asked her to get on her laptop and read the postings on the TNBC foundation.I know that she already raises a lot of monies for the Komen foundation due to the fact that her mother is a 30 year survivor.And she raises money everytime her show airs from the dunking of one of her audience or one of  the celeb guests...
   What both of my actual email's were trying to get her to do,is to provide a meeting place for all of the senior members.What a wonderful thing she  could do for all of you.My heart would be so full,if I could just know that just one time all of you ladies could get together and for the first time see and be with each other even if it was for just a short period of time.(Possibly a cruise for all of you)Probably not possible for that,but an  over night thing at a nice meeting place to have dinner together ,pre paid for all of you, would be just a wonderful gift and blessing.I even went to the extent of trying to explain that she and her new wife could very well get the diagnosis of this subtype at anytime. Contrary to what  you may read about this subtype,it now includes women of all color and women of all ages and that at this time there is no humane way of treating it other than the horrible poisen of  chemotherapy.And at the meeting of my sisters back Dr. yesterday, my sister and I were both to learn that even radiation can cause the bones to thin.
    I do not feel that money being spent for this, instead of monies being donated for the cure,would hurt the BC foundation in any way.It would be such a blessing for all of these ladies to get the chance to meet each other.I personally think that they should change their words about the Koeman Walk For A Cure.It should say Walk and Donate for a way to keep Breast Cancer  in Remmission.
   You know ladies,it is my belief that there is never going to be a cure for Breast Cancer(there is too much notariaty and monies to be made for the scientist at the pharmasudical companys ,But I would be content right now if the wonderful scientist could at least figure out an alternative for the treatment of Breast Cancer.To many of the ladies ,their first choice is for the removal of their body parts along with the horrible horrible poisen being pumped into their bodies along with radiation that can leave the once healthy human body with so many different lingering cronic illnesses.But of course this is a better choice than the alternative.(DEATH)
 
   It has been 40-60 years ,and every year the numbers grow higher and higher,and every year more subtypes mutate with no cure in site.The scientist sometimes develope(and for us ,it would be a mericle,) an alternative in the treatment plan .You betcha we will take that.But,before that,God Bless them, they are discovering ways trying to make your journey on chemo a little more tolorable. My prayers everyday are with all of us as women and of course some men that some how someone finds a way to fix this EPIDEMIC .Lots and Lots and Lots of Hugggggsssss     Billie 
Billie posting for sis Betty/67/caucasion female/diagnosed 2-27-08/gradeIII/7mm/invasive ductal carcinoma/T N /clear margins/node neg/4 X's taxotere-cytoxan/36 rads/7-08 PET/CT double image/no cancer
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2008 at 8:12am
  I decided to compose a 3 or 4 questions to send to my friends and family, to find out what their perception/knowledge is when it comes to our disease. 


Edited by krisa - Oct 09 2008 at 7:17am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2008 at 9:26am
Krisa,
 
I have written a letter, while not yet "polished", and am going to copy and paste it here.
 
Here it is, but will be revised many times probably.
 

October is “Breast Cancer Awareness Month“. The stores are filled with items from jewelry to t-shirts to kitchen items. We are being asked to buy these products and a portion of the sales will go for “research” for breast cancer. That amounts to probably a penny on a dollar for most of these manufacturers. There is even a key chain “Thingamaboob” for sale. It represents the different sizes of lumps. Not sure what moron designed that. Anything to turn a profit from some ones grief.

Christine Applegate has been on Oprah, and is telling the world through the media, that she is “cured”. She had a bilateral mastectomy and a hysterectomy, and an oophorectomy. Ms. Applegate carries the BRCA (breast cancer gene mutation, and that is why she decided to have the surgery. She will not have chemotherapy, or radiation, due to the fact that she is “cured”. There is a distinct possibility that Ms. Applegate has triple negative breast cancer, as 80%-85% of BRCA carriers have that diagnosis.

I would like to rename October Breast Cancer Misinformation Month.

THERE IS NO CURE FOR CANCER! If there was, 183,000 women would not be diagnosed with BC every year and 40,000 would not be dying here in the United States alone. One person every 60 seconds would not be dying somewhere in the world from cancer! Ms. Applegate and her entourage need to stop feeding the public this lie. Women all over the world are outraged at her statements. Any person ever diagnosed with cancer is outraged!

Last year our daughter, (age 45 then), had an ultrasound and was told that she had a breast fibrodenoma cyst. It was not a cyst, as they discovered during the surgery. She was diagnosed with Triple Negative Breast Cancer in June 2007. She then had a mastectomy at Magee Women’s Hospital.

Our daughter never smoked, drank, not even coffee, has been exercising for over 25 years, was in a triathlon 3 years ago, and led a very healthy lifestyle. Cancer does not discriminate.

She had 6 chemotherapy treatments, 1 every 3 weeks, consisting of Adriamyicin, aka “the red devil”, Cytoxan and Taxotere. All 3 drugs, every chemo. Our daughter had that poison infused in her veins, which almost collapsed, because there is no cure. She then had 28 radiation treatments. Because there is no cure Did you know that the radiation could cause more cancer? While on chemo, she took many other meds to off set the side effects of the chemo, (because there is no cure), which in turn have side effects.

She lost all the hair on her body, everything that she ate tasted like metal, and through many of the treatments, she was very ill. She now has neuropathy in her feet, has lost her eyelashes/eyebrows, 4 times, and probably will be feeling the side effects of chemotherapy for many years. However, she goes to work every day, and with the exception of chemo day and 2 days after, she went to work through all her treatments. Triple Negative breast cancer is a very aggressive cancer. There is no specific treatment for TNBC. This is a cancer not driven by hormones as most breast cancers. Patients receive the same chemo regimens as for BC positive. However, TNBC patients cannot take the new drugs on the market for after chemo, as can the BC positive women.

They say “the cure is close”. They lie. They are no closer to a cure now than they were 60 years ago. You can lick all the lids you want, buy all the pink items you choose, and just a tiny portion of those sales go for research. One foundation in particular gives only 20% of their donations to research. If you really want to help someone diagnosed with cancer, help that one person. Do their shopping, do their laundry, care for their children, scrub their toilet, cook their meals once a week for a year. When that year has passed, and after the horrible poison has affected every part of their body, just be there for them. Do not tell them that they will be fine. No one has that assurance, because there is no cure! They say that many people die from the chemotherapy as it causes your body to become malnourished.

“They” tell you that if you have a positive outlook that will help cure you. Really?

If you want to learn more about Triple Negative Breast Cancer, I would invite you to read the posts on the TNBC Foundation site. Read the posts of over 1000 members. Read the posts of the gals with Stage IV cancer, metastasis, second time around gals, and hear what they have to say about Ms. Applegate and “the cure”. See what they have to say about those who tell you that, “cancer is a gift“!

My maternal grandmother died of ovarian cancer when my Mother was 9 years old in 1922 and still there is no cure for ovarian cancer. Our grandson was diagnosed with leukemia at age 3, and went through 3 years of chemotherapy. He is now 20. There is no cure for leukemia. This family has seen all the cancer we ever want to see, and we know there is no cure, nor are they even close to finding a cure. If our government will not fund stem cell research, the “cure” will be probably 100 years from now. The pharmaceuticals are making a killing from the chemotherapy drugs, and if a cure was discovered that would cut into their profits big time. They have no reason to push for a cure. Just more drugs will be manufactured to attempt to kill the cancer cells, but never to find the cause or the cure.

 
Nancy
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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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Darla Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2008 at 9:36am
Nancy,

So well said! I love the way you write, your passion really comes through.

Darla

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2008 at 9:50am
Darla,
 
If anyone wants to copy the entire letter, or even portions, please feel free to do so. You all have that personal side of your particular story as to your dx, and I have a tendency to become very emotional when it comes to my loved ones, and your posts as to what you have been through.
 
I doubt very much that our Altoona Mirror will even publish this. They never want to offend some public figure. Especially those adamantly against stem cell research. If it is published, those in the far right will write to say I am a baby killer. That is the mind set here. Even though the sperm banks are depositing the embryos in the trash.
 
Nancy
 
 
 


Edited by Nancy - Oct 07 2008 at 10:04am
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote ReneeST Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2008 at 5:46pm

I just received an email from Safeway . . ..subject line:

 
Shop & Support Breast Cancer Awareness
 
 
If they wanted awareness, I'd lift my shirt up and show them my scars.   This was too much to receive in my email today after reading the above entries which are so true.
56 yo Seattle, WA Stage 1, Grade 3, 1.3 cm IDC Lumpectomy Aug 2008
SNB neg;4 rds Taxotere & Cytox. BRCA-2 Variant. 16 Rads Jan 2009 "Canadian Study"
www.reneesbumpintheroad.blogspot.com
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Darla Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2008 at 6:18pm
Renee,

I am with you all the way. First of all, one would have to live in a cave not to be "aware" of breast cancer! Aside from all the snide names I'd like to rename October, they really should rename it to Breast Cancer Education or Research or something. Second, I know that money is raised for research and education via the donation of profits but honestly I don't ever want to see the words SHOP and BREAST CANCER in the same sentence. Honestly, why don't they call it "Buy Crap you don't need because it has a pink ribbon on it and feel good about yourself for helping raise awareness of Breast Cancer and forget all about it until next October Month" and from the selling side, why don't they call it "Pink Ribbon Gold Mine Month"


Edited by Darla - Oct 07 2008 at 6:19pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2008 at 7:17pm
Darla,
 
May I include  some of the statements that you have made in my letter to the Altoona Mirror? They are the true faces of BC awareness month!
 
Nancy
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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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Darla Quote  Post ReplyReply Direct Link To This Post Posted: Oct 08 2008 at 6:23am
Of course Nancy - just don't name me Smile
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kimm Quote  Post ReplyReply Direct Link To This Post Posted: Oct 08 2008 at 8:23am
Hi everyone,
 
I hope everyone doesn't get mad at me but I take the opposite point of view regarding Christina Applegate and Breast Cancer awareness month.
 
Although I to get tired of seeing all the companies using BC as a way to sell thier products I am just grateful for anything that brings attention to this disease.  My best friend was treated for thyroid ca at the same time as I was involved with my BC. There is NO attention or support or fund raising for her cancer and it is every bit as real and scary and can also be quite deadly. 
 
Think of all the illnesses that are rare and get very little funding for research. Although there may not be a cure in the very near future for us, at least they are working towards it.  As we all know the words "triple negative" were not even heard of not very long ago. 
 
As for Christina Applegate,  how many of you actually give someone the gorry details of how you are Really doing when asked?  I always find myself giving people the answers they want to hear as to not make them uncomfortable.  Besides I really don't want everyone to know how I am really diong or how scared I am of the possibility of a recurrence.  Most people can't handle that info including my own family members. 
 
I agree that she should choose her words carefully as they can affect so many, but do you really think women will choose not to have chemo if her Onc feels it is necessary because Christina Applegate didn't have it?  I imagine she also may be presenting a positive outlook for the sake of her public image and career.  I would bet that she is very aware of what her future could bring. 
 
I just think we should give her a break.  She is one of us.  With all the same fears and just because she chooses not to broadcast them we should not rip her apart. 
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Terri Quote  Post ReplyReply Direct Link To This Post Posted: Oct 08 2008 at 6:55pm
Kimm,
 
I have to agree with you on some things.  My mom has Lupus, rheumatoid arthritis, fibromyalgia and reynauds disease. She has been battling these diseases for 11 years and has seen her health deteriorate steadily. There are a few times she was so sick we didn`t think she would make it! 
 
So a few years ago we were somewhere with pink ribbons and pink merchandise all around us. She expressed her frustation about how much attention and money BC gets to find a cure, and her diseases aren`t even talked about. Little did she know her sisiter and daughter would eventually be dx with BC in the same year! But she had a good point. Her diseases have stolen her health, she`s been hospitalized, taken numerous meds with bad side effects, had sx on her deformed fingers and will never get better. Where`s HER Ribbon?
 
I also agree that Christina is one of us. Of course! But I was one of the first people to write about how damaging her words were to our cause. I believe she`s been given bad info. And I agree that she is trying to put on a brave face for the public. We`ve all done it at times to, like you said, to avoid making people feel uncomfortable.
 
But....there was a young lady on this very site who gave chemo a second thought because of what Christina said. And some people I work with took her at her word she was "Clear". They were asking me why I just didn`t get a double mastectomy and be done with it. So I think it`s a little irresponsible of her not to explain better why she is claiming this. I take the time to explain to coworkers, friends, and whoever wants to know about TNBC and why it is a different disease than hormone pos BC.
 
Kimm, you have a kind heart. I think it`s great that you see this from a different perspective. I think we can get too cynical sometimes!!
 
Terri
IDC DX 8/17/07 (age 41)
Stage 1 Grade 1-2, 1.35 cm
2 nodes neg, Lumpectomy 10/07
Chemo: FEC 100 x 6, 35 rads
BRCA 1/2 NEG
PET/CT & Brain CT Nov 09
Brain MRI Aug 2012 NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2008 at 8:07am
Terri and Kimm,
 
I was the one who responded to the gal who was not going to do chemo due to Ms. Applegate's statements. That is when all the gals started posting.
 
She is definitely a "sister". Anyone dx with bc is a sister. My heart goes out to her. It is her onc and her entourage who are being so irresponsible. Her agent should publicly state that they were wrong in declaring that she is cured. I'm not sure if any of you read Hayley's post as to Ms. Applegate, but just back up on the posts on this topic to page 4 and you will find it.
 
Hayley and the TNBC foundation were also taken back by what she has been feeding the media.They are working so hard to get the word out on TNBC, and then the media is almost pooh poohing the real truth. If Ms. Applegate carries the BRCA gene mutation, there is a distinct possiblity that she is TNBC. I "think" that from what CarynRose has said that 80% of BRCA1 are TNBC.
 
From the few snips that I have seen of Ms. Applegate on TV, she looks terrified, and I can see that look in her eyes just as I have seen in Lori's eyes. No amount of make up can cover that up.
 
Kimm, you do have a sweet, kind heart, Red%20Heartand we are here for anyone dx with bc.
 
Terri, your Mom has endured so much, and her life has certainly not been normal by any means. She's right! Where is her pink ribbon.
 
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Bell Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2008 at 8:51am
Kimm
I agree and I remember when I was diagnosed, I didn't know this would be something I would have to live with everyday for the rest of my life. I didn't have all the information. And I felt like I was in a whirlwind when I started finding out more and more info.  In fact, it was actually months before it all sank in.  I think this might be where she is coming from as well.  Yes, she should chose her words carefully.  But so should we.
N
dx 8/17/2007 IDC Grade 3 Stage2
lumpectomy 9/19/2007
1.2cm w/extension into multiple intramammary lymph nodes
SNL 0/1
Ki-67 81%
Dose Dense AC/T completed 2/21/08
37 rads completed 5/02/08
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