Wednesday, June 15, 2016

The Mother of All Invention


All my readers here know me so well. I started this blog when I was diagnosed with cancer for the second time. Back in those days, I chronicled the challenges of going through chemo for a second time and the new experience of having a hormone responsive cancer. So many changes, so much to endure.

Everyone at No Surrender helped me through and that is how it has always been. Through mutual sharing, we have been able to gain the courage to face all the challenges facing us. We shared tips and ways to counteract our side effects. I worked on ways to reduce some of the more harsh side effects I was experiencing. How many of you remember these- or are dealing with them now?

Chemo-Tears. Remember those? The taxanes made our eyes tear so much the skin underneath would become raw and tender, made worse with each subsequent tear that fell.

Chemo-Feet. Ah yes. That burning, aching pain that accompanied peeling and dryness so bad our feet developed cracks.

Chemo-Acne. 
Where was this in the Cancer Catalog?? Suddenly our skin became super dry, incredibly tender, and broke out like a pre-teen's.

Radiation Fried Skin.
This one really got me. I was given an ointment that was so hard to spread on my painful, tender skin it made it even worse.

ChemoPause Skin Moisture Suck.
There is no other way to describe it. All your hormones are eradicated from your body and what is left is the skin of an 80 year old who spent 40 years in tanning beds.

Scars and More Scars.
You get to feel like a patchwork quilt after awhile, don't you?

Brillo Head with Painful Scalp: There is no description for what our hair looks like when it grows in except for- What Happened? And then there is the tender, painful scalp...

The No Surrender Breast Cancer Foundation will ALWAYS be here for you to help you get through your cancer. We are not going anywhere. But, as the founder, I must tell you that I have worked for the past three years on ways to get us through treatment as well as to make us look our best when treatment is done. What's more, I am tired of hearing of all the new cases that cross my desktop every day. WHEN WILL IT END? What are we doing that has increased cancer so much?

I asked this question when I passed the magic 5-year mark thinking I was "done" only to find out that I had not only a second cancer, but this one was almost 3 times the size of my first and had gone outside my lymph nodes. I had been doing everything right since the first diagnosis. I reduced my fat intake. I didn't eat meat. I exercised. I did it all. And it came back.

One thing I didn't change was my routine. From the cleaning materials I used around the house to the creams and lotions I was using on my body. When I was researching my book, I discovered that there are so many carcinogenic and hormone disruptive toxic chemicals in the stuff I used religiously, it was an eye opening experience.

I remembered the things I put together at home to help ease my treatment side effects.  I knew I should start there.

The first thing I did was create a list of all the toxic, cancer causing chemicals that I would not use on my body ever again. Then, I researched nature based alternatives.  But, let's face it, I am also a woman and I wanted the stuff to actually work. You can smear on anything that grows in the garden and nothing will happen. But if you put it together with other ingredients that boost effectiveness, you see results.

My next stop was a botanical chemist. Together, she and I put formulas together. These formulas could  not contain any toxins or banned (in other countries) ingredients. Then I went out into the field and found the finest botanicals and essential oils and we worked on combining them. We tested and tested. How did we test? I would visit an aesthetician and ask her to put the harshest chemicals she could on my skin. High levels of glycolic acids, mega Retin A, whatever she could give me. My face would be so red and raw it felt like it would fall off. Even smiling would hurt. And then, I would put our products on my face. If they stung or made it worse, that formula would be thrown out and we would start again. If it soothed and helped reduced the redness, it become a new product.

Then we tested our products on 100 women. Cancer survivors, patients, new moms and women and men who had never been through harsh chemical treatments like chemo. The results were astounding. We had a 99% overwhelming positive feedback.

That is how I developed my new skin care line called Bétèrre Skin+Care. Bétèrre means "Better from the Earth." Skin+Care means we don't just offer you a run of the mill skincare line- we make care the most important part of it.

I was also very lucky. Two of the most talented physicians, surgeons who reconstruct breast cancer patients, became my partners. They are constantly giving back to their patients. They care what happens to them AFTER they leave the office as much as what happens in the office.

Bétèrre is for everyone. If you care about your health and want to avoid cancer causing, skin damaging chemicals and want a pure, nature-based line that has been proven to work, then you will want to try it.

Remember my list from above? If you are braving through treatment and are experiencing what I experienced, I have products made for you:

Chemo-Tears? Try Salve-A-Tion. It soothes and protects the delicate eye skin. It also forms a protective barrier so the new tears can't hurt it.

Chemo-Feet? Put our Rescue Me Foot Cream in the refrigerator to cool it down. Then massage in while it is cold.  The burning goes away. The feeling starts to come back to the tingling numbed areas and the painful, peeling skin is moisturized and nurtured.

Chemo-Acne? The Balancing Face Serum glides on to soothe hot, irritated dry skin. The formula is made of amazing botanicals that will help fight the chemo-acne and prevent new outbreaks.

Radiation Fried Skin? Ditch the thick, gloppy petrochemical based ointments and try the healing Salve-A-Tion and our glorious Golden Elixir. They will soothe your irritated skin and the light protective barrier protects from chafing from your clothes.

Chemo-Pause Skin Moisture Suck? Your skin is dried out and has aged 100 years in 10 days. Our Deeply Moisture Repair for Face will turn your skin around. Where it was dry, it is supple. Where it was dull and lifeless, it glows with an incredible luminosity.

Scars? Pure oils and a massaging applicator of our Scar
Serum reduce their appearance, finally.

Brillo Hair and Painful Scalp. No more. The Botanical Hair Tamer really does tame chemo frizz and when massaged into the scalp provides long lasting relief.

Bétèrre was made for you. You don't want to add more toxic chemicals to your body after all you have been through. You don't want your kids and family to be to be exposed to them either. You want skin care that does what it says it will and will not harm you.

I have always done everything in my power to help the wonderful people of No Surrender as well as people all over the world. This is yet another way for me to give back to all of you who have given me such hope and strength over the years.

There is a Bétèrre way- it's here now.

I am so happy I can finally share it with you.

xo
gina

Tuesday, March 22, 2016

Updates on the Research Front





There has been quite a bit of new information on the treatment of Triple Negative Breast Cancer.
We update frequently here on the blog, but new information can also be found on our website.

Today we welcome you to read about the following on our Triple Negative News Page HERE

What will you find?

Beta Blockers have been found to help chemotherapy be more effective when treating Triple Negative tumors

The Growing Role of Checkpoint Inhibitors in Metastatic TNBC Tumors

Non-Invasive Liquid Biopsy can find TNBC tumors sooner- Clinical Trial Taking New Patients

We are always here to help you. Researchers are encouraged to contact us with news of their work.

Saturday, February 6, 2016

Cold Spring Harbor Laboratory Finds More Hope

We have long been strong supporters of the work being done at the Cold Spring Harbor Laboratory. Today, an article that appeared in Long Island's Newsday, shows that there is much to hope for.

Cold Spring Harbor Laboratory researcher explores antisense technology to defeat cancer

 
http://www.newsday.com/long-island/cold-spring-harbor-laboratory-researcher-explores-antisense-technology-to-defeat-cancer-1.11442078?view=print


February 6, 2016 By Delthia Ricks  


When the director of research at Cold Spring Harbor Laboratory examined his first specimen of cells treated with an experimental breast cancer therapeutic, he was stunned.

David Spector is a seasoned scientist long used to groundbreaking results and he went into the project with a strong hypothesis. Yet, he didn’t quite know what to expect.

He is exploring a treatment strategy called “antisense technology” and the outcome of his first test proved so spectacular that it served as one of those rare Eureka moments when a result surprises even a veteran investigator.

“I didn’t expect it,” said Spector, enthused that a scientific endeavor can still be marked by the unexpected. “We were hopeful that something would come out of it. Of course, we didn’t know how dramatic the effect would be.”

Aggressive cancer cells, which had overwhelmed the specimen, were no longer visible once exposed to the novel therapy. To Spector’s surprise, the cells had undergone a substantial character change, becoming large fluid-filled and static having lost 70 percent their ability to mobilize as metastatic tumor cells. He and his team have repeated the experiments countless times, and have subdued cancerous cells with each effort.

Antisense technology involves the identification of aberrant RNA — a cousin to life’s commander molecule — that can persist at the core of some cancers.

Then, it involves synthesizing a deactivating sequence — an antisense strand — that binds to the renegade RNA to trigger its destruction.

The implications of the findings are enormous, Spector said, given the seriousness of this form of breast cancer — advanced disease that spreads.

If the war on cancer nearly a half century ago relied largely on “slash, burn and poison” as methods to fight cancer through surgery, radiation and chemotherapy, then evolving efforts designed to conquer the disease will have to venture deeper into uncharted regions of the cancer cell, mainly its inner sanctum — the nucleus — where DNA and RNA reside, scientists say.

Spector’s form of research is the kind that some experts say will be needed if there is to be a genuine “moonshot” effort to defeat all cancers, a challenge issued by President Barack Obama in his final state of the union address last month.

Advanced breast cancer is a significant public health concern, according to the Metastatic Breast Cancer Network, an advocacy organization for patients, which estimates that 6 percent to 10 percent of breast cancer cases are Stage IV and metastatic at the time of initial diagnosis.

Yet, others are at risk as well — patients whose cancers are resistant to standard treatments and those whose disease inexplicably rebounds after remission. Patients are watching anxiously as Spector’s research progresses.

“This is very important work, very important for us, ” said Joanne Marquardt of West Islip, an 11-year breast cancer survivor. She describes the potential for metastatic disease as the shadow that haunts some women — and men — years after successful treatment.

To date, Spector’s research has mostly involved mouse mammary cells. And while he underscores the preliminary nature of his experiments, Spector is well aware that he has embarked on compelling scientific terrain. Experts outside his lab are also excited about the approach. Ionis Pharmaceuticals, a Southern California company, has already joined the effort to develop Spector’s antisense concept into a treatment for metastatic breast cancer.

Human clinical trials are expected within the next 18 months, said Frank Bennett, vice president of research at Ionis.

Spector and postdoctoral fellow, Gayatri Arun, the lead associate in the lab, journeyed into the nucleus of cells to target an engine of cancer development: the mystifying molecular segments that scientists call long non-coding RNA. These sequences were once called junk RNA.

Investigators now know they are hardly junk and probably play active roles in other forms of cancer as well as disorders that have no relationship to malignancies.

“There is no junk RNA,” but there are some RNAs, Bennett noted, whose function remains a mystery. His company also studies non-coding RNAs and develops antisense therapeutics for a wide range of medical conditions.

Like DNA, RNA is a nucleic acid and each is governed by a special alphabet, the letters of life.
For DNA those letters are A,T, C and G. RNA’s alphabet is A, U, C, and G. Each letter represents the name of a nucleic acid, the basic building blocks of genes, which spell the code for a specific protein. DNA, a double-stranded spiraling helix, carries the blueprint for proteins. RNA, a single stranded molecule, is involved in transcribing DNA’s code.

As it turns out, some forms of RNA — non-coding RNAs — are not involved in transcription. For years, long non-coding RNA remained woefully understudied, persisting as a bewildering chapter in the story of genetics. But work, such as Spector’s and a growing number of other scientists has begun to shed light on this dark matter of the genome.

Long non-coding RNA may underlie some forms of lung cancer, studies have shown, as well as certain types of heart disease, particularly cardiac fibrosis, a condition marked by abnormal thickening of the heart’s valves.

Spector has targeted a long non-coding sequence of RNA called Malat1, which has played an underappreciated role in aggressive breast cancer. Spector and his team found Malat1 to be overabundant in tumor cells of those diagnosed with the disease.

“In the past, when scientists were looking for targets to treat cancer, the hunt for the most part, had been among the proteins. Very little work had been directed toward these other RNAs,” Spector said.

“This is a remarkable class to target because we can attack them in ways that are different from the way we target proteins.”

“In terms of RNA,” Spector said, “we are basically talking about sequences of letters.”

For example, if the long-noncoding RNA target sequence is A, G, C, U, Spector said of RNA’s alphabet, then the “antisense” sequence to quell it would be A, G, C, T, borrowing from DNA’s lexicon.

Malat1 is dozens upon dozens of letters long, but when only 16 to 20 antisense molecules bind to it, an enzyme is automatically recruited by the cell that destroys the entire stretch of cancer-causing Malat1.

The reason is explained by evolution: Double-stranded RNA is alien, even to a cancer cell. That is why the enzyme quickly assembles — to destroy any inkling of a double-stranded RNA. Tumor proliferation is halted when Malat1 is destroyed.

Spector credits the vast Human Genome Project with opening new windows of understanding into hidden regions of the genome. Sixteen years after the project’s end, discoveries about poorly understood forms of RNA are still paying dividends, he said.

His antisense approach was well under way when Obama called for a “moonshot” effort to conquer cancer.

The American Cancer Society is welcoming the presidential challenge noting that innovative approaches that are off the beaten path can help spur a new understanding of the processes driving tumors.

“Cancer will not be cured this year,” said Dr. Otis Brawley, an oncologist and chief medical officer for the cancer society “but we should do all we can to ensure 2016 is remembered as the year we came together in an effort to work smartly.

“It is imperative,” he said, “that we continue to fund the brightest minds.”

In West Islip, Marquardt, a research advocate with the West Islip Breast Cancer Coalition, views Spector among the brightest minds. She is excited about the prospects of his antisense therapy moving into a clinical trial.

“From what I have read of his work, this approach,” she said, “goes a long way in dealing with the problem of metastasis.”

Marquardt, who serves as a consumer reviewer of studies up for grants awarded by the Department of Defense’s breast cancer research program, read Spector’s antisense research paper not for funding, but for her own edification.

Marquardt hails from a family that has been stalked by the disease over multiple generations. Her grandmother had breast cancer as did her mother and aunt and now her daughter.
She said metastatic breast cancer is much tougher to treat.

“The fear that it can come back, that the other shoe is going to drop, is something we live with,” said Marquardt, a retired biology and Earth science teacher.

Spector’s innovative approach to dramatically slow and possibly stop the disease, she said, fuels the hope of survivors worldwide.

Friday, October 9, 2015

EARLY DETECTION DOES MATTER. PERIOD.

From the inception of the No Surrender Breast Cancer Foundation, we have stressed the importance of early detection. Some people are very lucky and find their tumors while they can be removed and the rest of the body can be treated depending on the extent of the disease. Does that mean that all small tumors are not deadly? No.

My first breast cancer's pathology revealed it began as DCIS, meaning it was contained within the milk duct. But it broke through the duct and became invasive. Invasive triple negative breast cancer. Because of this I had to do chemotherapy and radiation. That was in 2001. Over the next few years I met some wonderful women through my foundation. One young woman became a dear friend. Her name was Ferne Dixon. Her picture is on the right of this blog and always will be in eternal memory. She had triple negative breast cancer, too. But she did not get screened early and because of this the tumor was found after it became quite invasive.

Like Ferne, young, black women are at a higher risk of developing triple negative breast cancer while they are in their 30s. If they wait to be screened until they are 40 - or now as the new guidelines suggest 50 -  it will be too late. I promised Ferne as she was dying of this horrible disease, that I would do everything in my power to spread the word about the importance of early screening so young women would have a chance to become old women and not die of a disease that could have been treated and possibly overcome.

Now, after an exhaustive study, the experts are stating that early detection does, indeed, prolong life.
They have proof. It can be found here.

What the study shows is that the smaller the tumor, the longer the survival. The more lymph nodes involved and the larger the tumor the long term survival is not as favorable.

With new targeted treatments and the effectiveness of hormonal medications, even women with a more advanced disease are living longer. This applies only to women who are responsive to endocrine therapy.

My second cancer was estrogen receptor positive and it was large and involved the lymph nodes. Reading the graph is frightening knowing my pathology. But I am glad I did a year of strong chemo and had extensive radiation and am taking Femara. At least I am fighting it. What about the women who haven't been screened so they do not know they have to fight?

As everyone knows, we are firmly anti-pink at No Surrender. Sometimes that message is misunderstood to mean that we are anti-early detection. That has never, ever been the case. Look at our program The Before Forty Initiative - here - and you will see how strongly we believe in screening.  This screening is not just mammograms, which can miss some tumors. We encourage fighting for ultrasounds and breast MRI's - particularly for young women with dense breast tissue.

If you do anything in this pink month, set the record straight. Opposing pink greed is not opposing being smart and taking care of yourself and the ones you love. If you would like to start a Before Forty Initiative Outreach in your area, please contact us. We travel everywhere we can find women who don't know of their risks. We have made a difference. Tumors have been found in young women. And every time I am thanked by them or their mom or grandmother, I think of Ferne. I know she is smiling and telling me, "Keep it up, girl."

Early Screening Article: http://www.forbes.com/sites/elaineschattner/2015/10/09/yes-early-breast-cancer-detection-does-matter-a-new-bmj-study-finds/

Before Forty Initiative: http://nosurrenderbreastcancerhelp.org/About/B440/Before40.html

Thursday, October 1, 2015

Nothing to Say

It's October. Oh holy hell. Not again.

Everyone is asking me to either say something or  participate in something pink. Why? When have I ever been pink?

I was first diagnosed in September - so I had to go through the first horrifying month of chemo in a sea of pink ribbons and happy faces. In the real world, I slept on the bathroom floor because I was so sick from treatment I had to.

Breast Cancer is a cancer just as real as any other. But for some reason, this particular cancer is downgraded and infantilized. The focus is on  "Saving the Boobies!" not saving the lives of the 250,000 women who are diagnosed each year with over  40,000 dying of the disease annually. No. It is easier to make it pretty in pink. Easier for whom?


In the past week I was asked if my foundation, "Gets a lot of donations because it is October?"  Uh, no. People are too tapped out from buying pink toilet paper and pink fuel filters and pink shoelaces and pink ... everything. As I was checking out at a local store today the cashier asked if I would like to "Give to breast cancer?" Give what? What more can I possibly give? I asked her which breast cancer? She said, "You know, the one that you give to." I bit my tongue and said, no.


Nevertheless, it is upon us. In its full pink glory. Everyone looks so happy. The idiotic glee celebrating rapidly duplicating cells that are attempting to claim your life. This misguided and dangerous joy is hurting the women who are afflicted with this cancer. It is devastating to the women who are dying from this cancer. How do you explain the giddy excitement of Pinktober to a child who lost their mom? I know a lot of kids who lost moms. Trust me. They aren't having as much fun as the pink zombies want you to believe they are.  But no matter, as long as one percent of your purchase price goes to "a breast cancer charity" you should feel really great about doing your bit for breast cancer.


I run a non-profit foundation for women trying to get through breast cancer and we have never exploited the month of October for fundraising purposes. Why? Because women have breast cancer twelve months a year. And we help women during every single one of them. Our care doesn't stop after Halloween.


I do not use profanity in my writing, I keep things clean and professional. But, sometimes, only someone who really gets it, can put things into perspective. I wish everyone took breast cancer as seriously as other cancers. Other cancers like the one that took Warren Zevon. He wrote this in response to his diagnosis and treatment. It's not pink. Neither is breast cancer. Cancer is cancer. And the next time someone asks you to wear a pink boa and act like a child, please remember that THIS is what having cancer feels like...