Sunday, December 26, 2010

Just Do It

How many of us cancer survivors have said, "If I knew then what I know now?" In fact, how many human beings have thought that over the course of their lives? It is natural to be a Monday morning quarterback. But I am not talking about what pass you would have had Mark Sanchez throw if you calling the plays. I am talking about your life.

We know that there are certain behaviors that can increase our risk of developing breast cancer. Those same risk factors increase substantially after we have been diagnosed and treated for the disease. The two biggies? Our weight and exercise routines and alcohol consumption. Study after study has shown that alcohol after breast cancer can increase your risk of recurrence by as much as 30%. If you lose weight and exercise, you can decrease your chance of recurrence by as much as 50%.

So what are we doing? I am not excluding myself here. I enjoy my gin with the enthusiasm of an Evelyn Waugh character. But I am making a resolution to limit my Juniper Berry juice to once or twice a month. I have had chemo- twice. I can have seltzer.

Because of recent surgeries, my exercise routine has taken a hit and over this holiday I became the Christmas Cookie's best friend. It all stops. I know how bad sugar is. I know I have to get back on track as soon as possible to fight my cancer from making a comeback.

While others make New Year's Resolutions to improve their lives or to fit into their skinny jeans, we have to make our resolutions to stay alive.

Join me, won't you? Let's lose the weight, work up a sweat and cut down or eliminate the libations. When you are tempted to cheat, remember what the Adriamycin looked like being injected into your IV. If that doesn't do it, then nothing will.

No Surrender!!!

Wednesday, December 22, 2010

The SUPPORT FORUM is Back

Dear No Surrender Forum Users:
We appear to be back up and running again.
Thank you for your patience during this trying time.
Please accept our apologies for any inconvenience or undo stress we may have caused.
Gina

Support Forum Outage

No Surrender Forum users- it seems the third party site is down. We are trying to restore it asap.

You still have FULL and COMPLETE access to our main website- the heart of No Surrender:
Nosurrenderbreastcancerhelp.org

Please stay tuned for more information!

Sunday, December 19, 2010

An Important Message, We Need Your Support

It is for us the living, rather, to be dedicated here to the unfinished work which they who fought here have thus far so nobly advanced. It is rather for us to be here dedicated to the great task remaining before us -- that from these honored dead we take increased devotion to that cause for which they gave the last full measure of devotion -- that we here highly resolve that these dead shall not have died in vain.
Abraham Lincoln, Gettysburg, Pennsylvania Novemcer 19, 1863
Dear Friend,

We did not start out thinking that we would become what we have. This foundation started as a support forum to bring women together who had been diagnosed with breast cancer. The Circle, as it was known, began to grow and grow as new women passed through their treatments with the help of their sisters in the Circle and they, in return, reached out to other new women as their journeys began. It became a circle of hope, faith, friendship, support and strength.

We also suffered our losses. Dearly loved members died from this awful disease leaving young children, or losing their lives before they could even start them. This led to the science and advocacy of our foundation. We started our website to educate, empower and save the lives of every woman who has heard the words, "You have breast cancer."

Without an endowment, without any funding, without anyone to turn to for financial help, this foundation was built. We are here for anyone who needs us twenty-four hours a day, seven days a week. We are where you find evidence based research information that can be taken to your doctor to ensure you are getting the very latest treatment and care. We are where you can turn to to learn what to do, what to wear, what to eat, what to expect before, during and after each treatment you are about to endure.

We all want a cure for breast cancer. There is none. Research is the key to getting us closer to that elusive cure. But what about the woman who is in the trenches fighting her breast cancer? She needs us and she needs us now. We are the bridge between the diagnosis and the cure. How? We get you through your breast cancer as if you were a member of our family while the researchers work on the cure. We are out in the community spreading awareness of the importance of early screening for young women before the age of forty to save their lives through early detection of Triple Negative Breast Cancer.

We are not doctors. We are your sisters. We have been through everything you have. The chemo, the surgeries, the radiation and the after effects of the treatments. We know what you need and what you are going through. We don't want anyone else to have to suffer. So we continue - we will help you get through this, we will work hard to keep you up to date on everything you need to know, now - and we will tirelessly endeavor to save the lives of the young women who don't even know they have breast cancer, yet.

WE NEED YOUR HELP, NOW.

In order to keep the No Surrender Breast Cancer Foundation running and growing and reaching out across the world, we need your financial support. If we have helped you in any way, we ask that you please make a donation. We are a recognized 501 c3 not for profit foundation and it is 100% tax deductible.

This is a crucial time for us and without funding we will not be able to fulfill our goals and we have dedicated ourselves to those of you who are the survivors, in honor of those who have gone before us. Please help us keep this mission moving forward.

Thank you,

Gina Maisano
Founder

Thursday, December 16, 2010

Avastin to be Withdrawn

This is a very bad move. Too many women are BENEFITING from this drug. Time for another petition.

From the New York Times:

F.D.A. Plans to Revoke Approval for Breast Cancer Drug

The Food and Drug Administration said on Thursday that it would move to revoke approval of the widely used drug Avastin as a treatment for breast cancer, saying the drug was not effective in helping patients.
The decision, which is rare for the F.D.A., has been anticipated since July, when an F.D.A. advisory committee voted 12 to 1 in favor of rescinding approval.
 
The F.D.A. said its recommendation was the start of a process, and that for now, the approval for breast cancer will remain in place and patient access to the drug should not be immediately affected. Genentech, the drug’s manufacturer, will have 15 days to request a hearing. It is expected to do so.
Still, the move could provoke an uproar because various breast cancer patients and some patient advocacy groups have urged the F.D.A. to keep the drug approved and not deny patients a chance at what they say could be a life-saving therapy.

The debate even took on political overtones, with some Republican lawmakers saying the move was nothing more than an attempt at cost control, the beginning of rationing under the new health care law.
Other breast cancer advocacy groups, however, have agreed with the F.D.A.’s decision, saying patients need drugs that prolong lives or improve the quality of lives, which Avastin had not been shown to do.
The decision seems a close one. Indeed, European regulators decided Thursday to retain the approval of Avastin for advanced breast cancer.

Avastin, which is sold by Roche and its Genentech subsidiary, will remain on the market as a treatment for other cancers, such as lung and colon cancer. So oncologists will still be able to use Avastin for breast cancer on what is known as an off-label basis.

However, insurers will be less likely to pay for such off-label use. And breast cancer treatment will no longer be part of a program in which Genentech caps yearly spending on the drug to $57,000 for patients with annual incomes below $100,000. Without the price cap, Avastin would cost about $88,000 a year for a typical woman with breast cancer.

Avastin is the world’s best-selling cancer drug, with annual sales of about $6 billion. Analysts have estimated that revocation of the breast cancer approval could cost Roche $500 million a year or more in lost sales.

The rescinding of the approval was done not under the new health care law but under a system set up in the 1990’s to bring drugs for serious diseases to the market quickly, subject to further studies to confirm the drugs are effective.

Avastin was given such accelerated approval as a treatment for advanced breast cancer in 2008.
But in those further studies, the drug seemed substantially less effective than in the clinical trial that led to the accelerated approval. Avastin did not prolong lives and delayed the worsening of the cancer by only one to three months, while increasing side effects.

The F.D.A. advisory committee voted 13-0 in July that the new studies did not confirm the benefit of the drug.

Thursday, December 9, 2010

Healing Thoughts and Prayers for Aretha



Your Music has lifted us all, may our collective prayers lift you now as you fight this new battle.
xxoo

Wednesday, December 8, 2010

Be Brave, Snowflake

"If ever there is tomorrow when we're not together, there is something you must always remember: You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart.. I'll always be with you.” Winnie the Pooh

 

Elizabeth Edwards was a high profile woman who touched all of our hearts with her brave battle against breast cancer. As a member of the Sisterhood, we were able to personally relate to her trials and all that she was enduring. When her cancer progressed to her bones, we embraced her as we do all of our fellow sisters. Last night's news was a shock when we heard that she decided to stop treatment. It sounded, based on the news reports, that she still had time left. Unfortunately, that was not to be the case because today she died. The Facebook and Support Forum postings are full of sadness, anger at this terrible disease and, also, fear. 


I want to take a moment to talk to all of you who are newly diagnosed, just out of treatment, or even an old timer who had a "similar" diagnosis as Elizabeth Edwards did. I have received several messages in the last two hours and sometimes we need a gentle reminder of the snowflake.


Many years ago, when mentoring a group of women who had all started chemo together, if they heard of another woman who was not doing well they instantly put themselves in her place. I did the same thing back when I was just out of treatment. If a friend of a friend's mother-in-law died, I would be convinced that her fate would be my own. It took time and careful study to recognize that I had to stop doing that because no two people are alike. Your pathology report may have the same wording as a fellow sister's, but the pathology inside your body is yours and yours alone. Your DNA is as individual as a snowflake that flutters down from the sky and lands gently on your daughter's ponytail.


It is human to identify with Elizabeth and others who have gone on before us, but it is inaccurate to put yourself in their position because you also had the same breast cancer diagnosis or are on the same medication for treatment. Your immune system responds in its own unique way. Please don't worry that this means that you, too, will have something terrible happen. You must move forward, look forward and live each day fully. Do whatever you have to in order to stay healthy,  but live your life. 


May God bless the memory of Elizabeth Edwards and all the wonderful, warrior angels who went before us.  And may He also bless all of those in the fight who will continue to live our lives to honor their memories.

Tuesday, December 7, 2010

Soar Elizabeth, Soar

My post from yesterday was woefully out of touch, as the media did not report just how gravely ill Elizabeth Edwards was, for today she died from breast cancer.
The notice of this news can be found HERE

From all of us at the No Surrender Breast Cancer Foundation, we send our deepest condolences to her children.

God Bless You, Elizabeth. Today, you were reunited with your son. There must have been much joy in heaven.

Monday, December 6, 2010

Elizabeth Edwards Cancer Progresses

According to People.com, Elizabeth Edwards has announced that her cancer has spread from her bones to her liver and her doctors have informed her that no further treatment will be of help to her.

I find this news upsetting on so many levels.  The first is the No Surrender in me. I do not know her case, nor do I know the extend of her progression, but I do know many women who have lived with liver mets for a long time. There are chemo's available for it, along with radiation techniques. The other deep sadness is, of course, that yet another wonderful, loving, giving woman is enduring the horrors of breast cancer. When will it end? How do we change our lives to prevent this from happening to the next generation of women? Lastly, even though there has never been any concrete evidence to prove this, many doctors and survivors believe that  stress can decrease our immune system's ability to fight invaders. In this case, cancer cells. The amount of stress Mrs. Edwards has been under because of the actions of her estranged husband could certainly qualify as a contributing factor.

How incredibly sad and unbearably infuriating all of this is.

Stepping out of my place, because I am not a doctor, but simply a fellow survivor and patient advocate, I offer this:

Mrs. Edwards, I do not know your medical case or the extent of your progression. But I do know there are chemotherapies out there that can help you fight. You have an amazing doctor who has been a trail blazer in Triple Negative Breast Cancer. She is a leader in the field. I am updating this letter to you because I have just read that all avenues have been exhausted. I am so very sorry to read that news.  Perhaps you could try our EdgeCam regimen of supplementation, if Dr. Carey approves it, to ameliorate some of your side effects.  I do not know the answer. But I do know that if you have decided to do nothing more and enjoy your time left with your beautiful children, please know you have millions of fellow sisters holding your hand across the miles.

May God bless you and your family.

Gina Maisano

We are all Standing By You
Stand By Me
http://www.youtube.com/watch?v=O4_ghOG9JQM&feature=related

Saturday, December 4, 2010

And Heaven and Nature Sing!

What about you? Don’t feel like doing too much singing this year?  I know, it is awfully hard to feel like you do and be in a room full of fabulousity. There you are, recovering from your treatments, not looking your best, feeling tired and rung out and you are surrounded by happy, healthy, glowing people who are all so fabulous they practically stick to each other. And then they see you and they all get “that look.”

“How ARE you?” This is not an inquiry after your health, it is more of a “ you can tell me, are you going to die?” No matter what your answer, they still look at you like you are hiding something. Or you are told, “You look GREAT!” Really? As in, I look smokin hot? or I look like who-did-it-and-ran but for someone with cancer it could be worse?Then to make matters worse, enter stage left, the wise sage who has never been sick a day in their life, who offers this tidbit, “You should be very grateful you are here.” Do they mean “here” listening to their drivel or “here” as in above the grass?

In the imaginary thought bubble that floats over all our heads the following range of responses to all this chit chat is, “No, I’m not dying today, but you may be if you keep pushing me.” “At least I have cancer as an excuse for why I look this way, what’s yours?” “The only thing I will be grateful for is if you please go away.”

So how do we get through the holidays?

Don’t go anywhere that will make you feel bad
What does that mean? If you are invited to a party of vapid, uncaring idiots, don’t go. But if you are invited to a place that might be fun, that might have interesting people who don’t care if you had cancer or not, by all means go. There is no law against asking the hostess who will be there. If you don’t think you can handle the crowd, bow out.

Dress to kill
Look, everyone is expecting you to show up in a hospital gown. Wear something that makes you look absolutely stunning. Show off that recon. Follow the makeup tips below for a special holiday glow. When someone says to you, “You look great” answer, “I know.”

 Avoid Children if you have to.
If your cancer was responsive to estrogen and your doctor has thrown you into chemical or surgical menopause, and you have never had children and will now not be able to, seeing little children for the first time could be heartbreaking. If you have to pass on a party because the wound is still open, it is OK. You have to protect your heart. Wait until you have had time to accept the loss and can love being around kids again without bursting into tears.

Watch what you drink
What meds are you on? If you have been abstaining from alcohol because you know drinking increases your risk of recurrence, you may not be aware of drug interactions. If you think it is safe to take a drink because you are at a party and you also popped a Xanax before you left, you may have an unforgettable time, literally.

Don’t push joy away because you were sick
Don’t punish yourself and not accept invites because you had cancer. Your life is not over by a long shot. The longer you are out of treatment, the better you will feel about public appearances.  Check out Chapter 9  in Intimacy after Breast Cancer, to see what I mean.

Have fun. Avoid what you must, embrace what you want. It is OK to say no but it is also OK to give yourself permission to find Comfort and Joy.


Holiday Make-Up Tips:

Foundation
Wear a shade closest to your own, then top it with a deeper shade on your forehead, noes and upper cheeks. This gives the illusion you have had some sun.  Dior makes a Spray Bronzer that you can spray onto a large blush brush and sweep over your cheeks and forehead for a slight glimmer.

Eyes
After you apply eyeliner, sweep a light, shimmering shade over your entire lid, and up to the brow bone. This opens up your eyes. Then take a deeper shade and go over the eyeliner with it, blending the edges for a dramatic, evening look

Lips
Red lipstick may look great on tv and in ads, but to brighten your face, choose a pink or peach tone. It will compliment your complexion rather than compete with it.

Recommended Products:
Estee Lauder Futurist Age Resisting Make-up Foundation
Creamy, medium coverage that does not settle in pores or fine lines.

Dior Bronze Sun Powder Spray
Spray on brush or makeup applicator, then apply. Lovely glow that makes you look heathy.

Nars Blush and Lip Color Stick
Great creamy blush, for lips, make sure you apply moisturizer first.

Bare Minerals Lemon Zinger Eye Shadow
Brush over entire lid to brow bone to open up eyes.

Lancome Hypnose Drama
Instant Full Body Volume Mascara