Hi Dear Friend,

October is Breast Cancer Awareness Month. This year’s theme, No one should face breast cancer alone, serves as a reminder for providers and patients to consider the many ways that we can partner in the prevention, detection, and treatment of breast cancer.

In keeping with that theme, I (Nikoo) attended the International Invasive Lobular Breast Cancer conference in Pittsburgh a couple of weeks ago, where I served on a panel and had the opportunity to share my story with leading cancer doctors and researchers from all over the world. Coming home armed with a great deal of knowledge, I'm tremendously energized to help and be an advocate for other patients. And I find myself in a better place to deal with the challenges of my own metastatic breast cancer.

Many of our friends ask me the names of good places to donate during October. One thing you should know before you donate. Out of all the funds that are raised for breast cancer organizations, less than 7% actually goes toward research. So please, if you decide to donate, support research. To help, CLICK HERE FOR A LIST of reliable organizations that your money can help to make a difference.

Nikoo Speaking for Breast Cancer Awareness Month

A special message from Nikoo…

METAvivor exists to sustain hope for those living with stage 4 metastatic breast cancer (MBC). We are a volunteer-led, non-profit organization that funds vital research to help improve the longevity and quality of life for MBC patients. Passionately committed patients, we rally public attention to the urgent needs of the MBC community, help patients find strength through support and purpose, and make every dollar count as we work with researchers to extend and improve quality of life for MBC patients.

Visit http://www.metavivor.org

Advocacy is Important Business

Many of you ask how you could help…and we’re grateful you’ve asked!

Here is one way. Please contact your Congressmen and Senator’s offices and ask them to make these bills a priority. These two important Congressional bills have been sitting on the House and Senate floors for year and half. We need to get them moving.

Metastatic Breast Cancer patients don’t have lobbyists working on their behalf; they have volunteers. Join my team and please help ‘all’ cancer patients. Thank you. And please share this message with your friends and family.

• The Metastatic Breast Cancer Access to Care Act (House: H.R. 3183, Senate S. 1312): This legislation would fast-track disability and federal healthcare benefits for individuals with metastatic breast cancer. Under current law, a person with metastatic breast cancer must wait five months after applying for Social Security Disability benefits to begin receiving those payments. Also, that person must wait an additional 24 months after disability benefits begin before receiving Medicare insurance coverage. This delay creates obvious hardships for people with metastatic breast cancer as they struggle to pay medical expenses. This delay also ensures that many people with MBC are unable to collect the benefits that they paid into the system because of their reduced lifespan, currently averaging 33 months after diagnosis.

• The Cancer Drug Parity Act (House: H.R. 4385, Senate: S. 3080): This legislation would prevent various agencies and health insurers from refusing to pay for more costly medications that doctors prescribe because they are best for their patients. It would also prevent insurers from charging different co-pays for identical treatments in different locations, such as home versus a doctor’s office, or a doctor’s office versus a hospital.

Thanks!

A quick health report

Many of you—our kind friends and family—have been asking, so here’s a quick update on what’s happening with me these days.

 This past week I finished my third month of targeted chemo. My schedule is three weeks on and one week off to give a chance for my body to recover and then we start all over again. I met with my oncologist last week. The tumor marker blood test shows slight improvement, which is great news. We celebrate what we can. My oncologist is also battling my insurance provider to get approval on an FES PET Scan, newly FDA-approved. This diagnostic test will help us decide if I’m on the right treatment or not. Please wish us luck on that.

I was also approached by METAvivor.org to be featured in the month of October for their Patient Voices campaign.

 This is what the organization is all about. METAvivor exists to sustain hope for those living with Stage 4 Metastatic Breast Cancer (MBC). We are a volunteer-led, non-profit organization that funds vital research to help improve the longevity and quality of life for MBC patients. Passionately committed patients ourselves, we rally public attention to the urgent needs of the MBC community, help patients find strength through support and purpose, and make every dollar count as we work with researchers to extend and improve quality of life for MBC patients.

 100% of breast cancer deaths occur because of metastasis, and almost 100% of the people whose breast cancer has metastasized will die from it. In the United States alone, this means that more than 40,000 vibrant lives are lost each year.

 Despite these stark realities, the popular breast cancer fundraising movements give on average only 2-5% of their research funds to researching metastasis. Instead, their primary focus is on prevention, which does nothing to help those already diagnosed, and early detection, which does not impact those facing the ultimate death sentence of Stage 4 breast cancer. And while only 6% - 10% of initial breast cancer diagnoses are metastatic, 30% of the patients diagnosed with earlier stage breast cancer will eventually develop Stage 4 breast cancer and die.

 This does not need to happen.  Many metastasis researchers believe that metastatic breast cancer could become a chronic, rather than terminal, disease if only there were more money to do the research necessary to develop effective treatments.

 Please visit www.Metavivor.org if you’d like to learn more, and I’ll make sure to share my video with you during the month of October.

A friend has been kind enough to set up a GoFundMe fundraiser.

Here is the link to that page.