Nikoo's New Interview - October 2025

In this interview I’m sharing something deeply personal—my cancer journey.

It hasn’t been easy. There have been dark days, times of uncertainty, moments of fear… but also sparks of hope, resilience, and immense gratitude for every single one of you who’s walked this path with me.

In this video, I open up about what I’ve been through. The struggles, the breakthroughs, and the lessons I’ve learned along the way. My hope is that by being vulnerable, I can help others feel less alone.

If you or someone you love is facing something similar, this is for you. You are stronger than you think. You are not alone.

Thank you to everyone who’s sent love, prayers, messages, and encouragement. You lift me up every single day.

Please feel free to watch, share, and comment. Your support means the world.

October: Pink Everywhere, But Pain for Many

This past Friday, I sat down for an interview with The Patient Story (the final video will be available October 10th). One of the questions the interviewer asked me was simple — but it cracked me wide open: Where does your support come from?

I tried to answer, but the truth hit so hard I broke down. (Hopefully, some of my crying jag will be edited out.) Still, what I shared was raw and honest.

Outside of my immediate family—Jim, my sons, and my amazing daughters-in-law—my greatest support comes from my MBC family. My sisters and brothers who walk this same unrelenting path. The ones who check in on me, whom I check in on. The ones whose voices and messages carry me through the darkest nights.

It’s the love we pour into each other that sustains me. A love born not of choice, but of necessity. A love rooted in shared pain, in knowing that our time is both precious and uncertain. This community is where I find strength, where I find understanding without words, where I am reminded that even in the face of Stage IV cancer, we are never truly alone.

Pink October, But Not for Everyone

Each year, October rolls in with pink ribbons on mailboxes, pink cupcakes at fundraisers, pink t-shirts flooding social media. At first glance, it feels hopeful. A month of awareness, of solidarity, of a message of ‘we’re fighting together.’

But for those of us living with metastatic breast cancer, October pink can be a trigger. Every billboard, every ‘Save the Boobies’ campaign, every cheerful pink post reminds us of what pink doesn’t say: that our disease has marched past early detection, that our story is more complex than slogans.

We don’t just want awareness. We need change. We need research for metastatic disease, for lobular cancer, for the patients too often left out of the picture.

The Hard Truth

Breast cancer is often survivable in many cases, thanks to decades of research, early screening, and targeted therapies.

But for metastatic breast cancer (Stage IV), the picture is starkly different:
The five-year relative survival rate for metastasized breast cancer is only about 32%.

That statistic is not just a number. It’s my reality. It’s the reality of my friends. It’s the shadow we live with every day.

Why We Push, Every Day

• Because “awareness” without action is hollow. Pink ribbons are not enough. We need more clinical trials, more funding for metastatic disease, more innovation for cancers that still don’t have good therapies. (In my own case, we need more clinical trials for invasive lobular breast cancer, for which there are less than a handful.)

• Because stories matter. Every time people say, “early detection saves lives,” they forget that early detection doesn’t save every life.

• Because hope must be real. We don’t need cheerleading. We need honesty, transparency, and investment in research that gives us more time and better quality of life.

• Because life is more than “cure or die.” Many of us live years with Stage IV, balancing treatments, side effects, and meaning. We deserve dignity, support, and compassion until better treatments are found.

• Because voices matter. We need you to ask the right questions, to stand with us, to be advocates for research, for trials, for real progress.

What You Can Do

Good work is being done. Real organizations are pushing for change and funding research. If you are donating, please consider giving to those that specifically support metastatic breast cancer research.

Your support makes a difference. Not in pink T-shirts or slogans — but in labs, in clinical trials, in real treatments that extend and improve lives.

Be a voice for change. Support us. Speak for us. Stand with us.

Because we don’t need more pink.

We need more progress.

These are some of the organizations our own money is going to this month: Please list yours in the comments.

• LBCA (Lobular Breast Cancer Alliance)

• METAvivor

• Breast Cancer Research Foundation (BCRF)

• Living Beyond Breast Cancer (LBBC)

Celebrating a 'cancerversary'

From Jim—

We’re celebrating a #cancerversary in our house. As you know, three years ago, Nikoo was diagnosed with metastatic breast cancer, twenty years after her original bout with cancer.

Everyone deals with cancer in their own way, and no one should ever feel that their response is ever wrong or lacking. I can only speak to the way Nikoo has responded, and what she’s done since her metastatic diagnosis demonstrates exactly who she is. What I have seen is that this woman—who I’ve been blessed to love for 45 years—chose not to hide herself away or give up on life.

What Nikoo has done is to dedicate herself to helping other women who often need support and information and love as they travel the frightening and isolating journey of the cancer patient.

I can’t tell you how many hours every day she spends educating herself and building community and connecting. She participates in webinars, reads medical articles, and deepens her understanding of cancer, genetics, nutrition, and choices. But most important of all, she emails texts and calls her ‘sisters’. Constantly.

She does this with the conscious goal of helping women learn about their specific disease and possible treatment, and to bolster the courage to advocate for themselves. And when she loses a friend who ‘crosses over’, she weeps for them and for (and often with) the families and loved ones they leave behind.

Nikoo is truly an angel and a gift to me and to her family and to all her #mbc and her lobular breast cancer sisters.

I’m hopeful for many, many more cancerversaries, and I thank God for every blessed day I get to spend with her.

Empathy

Volunteering and giving back more than one receives—these values were instilled in me from early childhood. I grew up in a household with two working parents, and my two grandmothers were my primary caregivers. Each of these remarkable women exuded goodness. Charity wasn’t something they did; it was part of who they were.

Later, marrying Jim—who, as many of you who’ve met him know, has the most generous heart and is a giver through and through—deepened these values and shaped our way of life together.

Fast forward to today, as Jim and I navigate this road called metastatic disease. Early on, I was fortunate to find a community of extraordinary people. I listened, I learned, and I worked hard to find my niche—a way to live out the principle that has always guided me: give back.

Now, three years post-diagnosis, some call me a mentor, others an advocate. In truth, I’m simply a friend. A person who cares. Someone trying every day to share what I’ve learned, what I practice, and—above all—the message of hope with my sisters.

Just yesterday, I was on the phone with a friend walking the same path. She faces the same challenges and wrestles with many of the struggles I’ve encountered. My message to her (and to many of you who’ve heard me say it countless times) was simple: Control what you can.

Today, as I begin a Phase 1 clinical trial—side effects yet unknown to me and 890 others around the world who are helping to forge new ground—I’m thinking of all my sisters, brothers, and friends who are cheering me on.

 Thank you for the texts, the calls, and the messages. In short, for your warm, continuing empathy.

You are there for me, and I feel your support in my heart.

World Cancer Day

On World Cancer Day, my message is simple: Do good.

We don’t all have the same battles, but we all have the power to make a difference. Be kind. Help a neighbor. Support research. Lift someone up. Small acts ripple into something greater.

For those wondering how to help: Fund research, show up for a friend, spread compassion. Because hope isn’t just a word—it’s action.

This week, as I celebrate another birthday, I’m reminded that every day is a gift made possible by advances in metastatic breast cancer research. If you’re looking to support a cause that means everything to me, please consider donating to METAvivor.

Your donation fuels critical research for those of us living with this disease. And please, donate directly to METAvivor rather than through Facebook to ensure every dollar goes where it’s needed most.

SHELF LIFE

For years, I volunteered at a food bank in Connecticut. My task was to sort through boxes of food donations and check expiration dates.

Not everything around us has a date stamped on it. The concept of expiration or perishing is an intrinsic part of life though. From the beautiful roses in the garden to the milk on the shelf in the fridge—and even medications and treatments—everything has a shelf life.

And that brings me to my latest news. My first line of treatment had an average progression-free effectiveness of twenty-four months. I was fortunate enough to get twenty-five months out of it. However, my latest scan confirmed what my liquid biopsy a month earlier had indicated: my cancer is on the move again, and the drug I was on is no longer effective.

Did this news come as a blow? Not really. This is what cancer advocacy and being active members of my treatment team have done for me and Jim. This takes me back to the moment when we decided to change care and hospitals over a year ago. With my last oncologist, her standard response in discussions, "I’ll tell you what to do and you do it" wasn’t acceptable. And I was getting tired of having to inform that medical team about the latest studies for treatment and testing.

Jim and I are aware of the path that metastatic breast cancer often follows. As a patient and advocate, I attend conferences—both in person and virtual. I keep myself informed about new drugs in the pipeline, advances in scientific research. Most valuable of all, I'm part of a support group with other patients who are undergoing the same exact treatment. This community of voices, stories, and suggestions is invaluable. Knowledge is power, and fear festers when you're facing the unknown.

My new treatment, which I started three days ago, has an average effectiveness of seven months. I hope to be one of those outliers and stay on it longer. But in the meantime, I'm not dwelling on the dates. Instead, I'm focusing on expanding my knowledge and increasing outreach to advocates, patients, scientists, and anyone newly diagnosed who suddenly has a million and one questions about what lies ahead.

Science aside, as humans, we’re not boxes and cans with dates stamped on our bodies. We are living, breathing, and feeling beings, and our well-being is deeply entwined with the love and support we receive in our lives. I've been extremely fortunate in that regard. Every day, I wake up feeling a profound sense of gratitude for the love that surrounds me.

I'm thankful to Jim, whose unwavering support has been my anchor; to my sons, whose strength and kindness inspire me; to my daughters-in-law, who have brought so much joy into our family; and to every one of you, my friends and extended family, for standing by me. Your encouragement, compassion, and presence are the lights that guide me. I cherish each moment we share, knowing that love is the most powerful medicine of all.

So, what’s next? A trip to London next July to meet readers and attend a book event. Jim and I are so excited to look forward and make plans. We’ll let the idea of shelf life be just that—a stamp on a box.

My love to you all!

Spring Changes

Our Granddaughter Ammara’s Love Art

Life has been a whirlwind this past month, centered primarily around our upcoming move. Not by choice! Although the new place is just five miles away, the task of packing up hundreds upon hundreds of books, along with the rest of our household, has been quite a challenge. The silver lining? Our new house is filled with light and has a fantastic workspace and is conveniently closer to the beach. Once we're settled in, brace yourselves! The creative juices are flowing, and we're brimming with book ideas.

On the cancer front, today I had a meeting with my brilliant oncologist to review recent results and discuss our next steps. Throughout this journey, scans have consistently failed me, from missing my initial breast cancer years ago to the ongoing struggle to detect my lobular cancer through PET scans, CT scans, and MRIs. However, one test has remained reliable for me: CtDNA. This morning, the latest results revealed a doubling in my cancer's tumor mutational burden since the last test. What does this mean? It's time to switch up my chemotherapy, as the current treatment is no longer effective. Therefore, the plan is to potentially make a change following my seventh stent replacement surgery in June.

Jim and I want to express our deepest gratitude to each and every one of you who has been checking in on us and seeking updates on this journey with cancer. Your unwavering support means the world to us, and we are particularly grateful for those who have been a constant source of strength and companionship…and support us by buying our books and spreading the word about our work. The financial toxicity of cancer is real, and I still have to buy health insurance and pay the premiums in the open market place.

We cherish each of you dearly and cannot emphasize enough how much your love and support mean to us through these challenging times.

Valentine's Day Update

Hello Dear Friends,

It’s been a while since I’ve posted anything here, so I thought I’d give you a health update.

To begin with, this being the month of February and with Valentine’s Day this past week, we wanted to wish you love and happiness EVERY day of the year! This photo was taken pretty much at the time when our own love affair started. In fact, this has to be our very first selfie!

In the personal news department, we've had an exciting start to the year. Low immunities allowed Shingles to afflict me. Then, when I went to the local Urgent Care for medication, I contracted COVID-19, courtesy of another patient who was coughing and hacking in the waiting room! And since we share everything, Jim came down with it before we even knew that I had it. And that's despite us having every vaccine available. (Except for kennel cough, rabies, and distemper...and the vet is all set to give us those when we take Marlo in for his next visit.)

Happily, after five days of Paxlovid anti-virals, we're both on the mend. I still have pain from the Shingles, but I’m toughing my way through it.

On other news of my cancer, the last scans did show problems with my kidney stent, but we couldn’t do anything about it because of low immunities. The good news is that once I started feeling better, all the appointments were back on the calendar. I’ll be seeing my oncologist next week to go over the rest of the results of my scans, and I’m already scheduled for a stent replacement the first week in March.

As William Arthur Ward once said, “Feeling gratitude and not expressing it is like wrapping a present and not giving it.”

One day at a time. One foot in front of the other. I’m grateful, grateful, grateful.  As always, thank you for your ongoing kindness and love and support. Your messages and cards are always a joy for us both. You ARE the best!

Holiday Wishes!

With the holidays upon us once again, we find that we are, as always, thankful for all the blessings, all the friendships, and all the love that you send us, day in and day out, all year long. As many of you know, metastatic breast cancer has been a major part of our life these past two years, but we now understand the challenging “what-ifs” of the disease.

What if the next scan shows more progression? What if we can’t afford care? What if I lose my insurance? What if… ?

Still, what if we let go of all that pain, sadness, and anger—just for a minute—without ignoring the reality that they can return any time. What if—for an instant—we let joy, love, hope, and happiness take over?

This past year, we expanded our knowledge about Lobular Breast Cancer. I (Nikoo) attended an in-person medical conference in Pittsburgh and felt like a new person afterward, armed with more knowledge and knowing that there are brilliant researchers working on this disease. The two of us also got involved with advocacy—patient-to-patient and caregiver-to-caregiver.

Eighteen months post-diagnosis, my prognosis is measured in three-month windows. Scan to scan. Still, our mantra is to wish for peace for all human beings and to count our blessings.

As always and because of life’s necessities, we’re writing and have a new novel scheduled for release in March. And our new online bookstore is fully operational through our website.

Our wish for you this holiday season is that your blessings overwhelm your shadows, that your good ‘what ifs’ overcome the bad, and that your lives overflow with peace and contentment.

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.

Taking Steps — Empower, Educate, Advocate…

Fifteen months have passed since my life took an unexpected turn with a diagnosis of metastatic breast cancer. Since then, anytime there is silence on our social media accounts, I get private messages asking, ‘How are you doing?’ And it warms my heart to know that you're with me on this journey.

My weeks are a symphony of scans and appointments, a continuous rhythm that has become my new normal. And yes, I will always be on one or another type of chemo. And no, I won’t be done with it. Ever. When it comes to discomfort, I have pain. I’ll always have some pain, but I can live with it.

To those friends and family who have followed my journey through this blog, you remember the challenging six months leading to my diagnosis. The confusion, the fear—those emotions were all too real. And the emotional toll that followed was profound. The statistics were terrifying.

“Only one-third of women diagnosed with metastatic breast cancer in the U.S. live for 5 years after diagnosis.”

I needed some space to get comfortable with my diagnosis. I needed time to find my strength and search for a purpose for the time I have left. Yes, writing is our profession. It pays the bills, so that had to continue. But there were deeper questions that kept me up at night.

What more can I do with the time I've been given?

How can I help people who are going through the often scary stages of diagnosis?

How can I support others living with MBC, now and in the future?

Jim and I have always believed in the power of giving back. Early in our marriage, our wise landlord, Tom Kepple, shared a lesson that stayed with us: "Always give more than you take." In a way, his words were an echo of Martin Luther King, Jr.: "Life's most persistent and urgent question is, what are you doing for others?"

With those words as our guide, Jim and I decided to dedicate our time and energy to advocacy. I found my calling in patient advocacy, while Jim is getting involved with caregiver advocacy.

Advocacy starts with each of us, as individuals, speaking up. It's when the appointment schedules don't align with our lives, when medications bring debilitating side effects, when second and third opinions are essential. And later, it’s when we share our experiences, offering empathy and practical insights.

Breast cancer is a multifaceted challenge, and my focus is on helping patients ask questions and finding resources. I decided early on to share my journey, and hopefully, to inspire others in embracing life fully.

The realm of advocacy is vast and unending, but I'm committed to immersing myself in it, learning, and being a voice for change. As I prepare to attend my first in-person medical conference as a patient advocate, I'm mindful that there are no long-term guarantees for MBC patients like me. However, I refuse to let statistics define my path. I am a unique statistic, ready to empower, educate, advocate…and live.

Progression and “Psychooncology” - Interaction Between Brain and Body

Jim and I celebrated my first stage 4 cancer diagnosis anniversary on June 27th. Thankfully, my first line of treatment has been working…until now. Or maybe it will continue to work for a bit longer.

My latest scans showed some progression. Metastatic involvement throughout the spine, pelvis, ribs. A lymph node enlargement. But I’m still the little engine that could.

I’m attending my first in-person medical conference this September and will share my story on a panel. My oncologist is excited about starting me on a Phase-One drug trial this fall. My team of doctors say, ‘Hang in there. You’re doing great.’

Since getting diagnosed (again) this past year and delving into patient advocacy, I probably get 30 to 50 medical articles a day through email or from friends who are in the same situation as me. This paragraph from an article published by the National Library of Medicine caught my attention today:

The field of psycho-oncology is hung up on the hyphen in its name. How do we understand the link between mind and body? Is that hyphen merely an arrow to the left, indicating that cancer in the body affects the mind? Can it be an arrow to the right as well, mind affecting the course of cancer? We know that social support affects survival, including that with cancer. Also, people tend to die after rather than before their birthdays and major holidays.  Depression worsens survival outcome with cancer.  Yet we have been understandably delicate about mind-body influence, not wanting to claim too much, or to provide unwitting support for overstated claims that wishing away cancer or picturing white blood cells killing cancer cells would actually do it. That arrow to the right is a connection, not a superhighway. Yet in our desire to be respected members of the oncology community we have often minimized a natural ally in the battle against cancer – the patient’s physiological stress coping mechanisms.

So here I am today. Despite this latest scan… I AM DOING GREAT!

Supportive Language with Cancer Patients

As I approach my one-year anniversary of getting diagnosed with stage IV breast cancer, I think one of the saddest statements people make to me is saying innocently, ‘You'll be fine!' Although these comments are well-intentioned, they DO often invalidate my feelings.

What I have isn't a chronic disease. It will kill me. The goal and the hope is for it someday becoming a chronic disease. But we're not there yet.

Please check out these two short and informative articles.

https://www.survivingbreastcancer.org/post/talk-with-loved-ones?postId=a364283d-fc70-425b-9aac-93595a069ccc&utm_campaign=6c296ec0-9205-4ef8-aff8-09e8689f4eb5&utm_source=so&utm_medium=mail&utm_content=9e027de3-f8ce-40df-b0a9-0c37a19a024e&cid=064092a9-796a-4f8d-834d-ae2ea30dca0e&fbclid=IwAR1rvLhp6RQnFI6tJPfHdHfy1wcz28wAi6YT0x6mZxXYtNx4jC7AeUwIz4I

https://breastcancernow.org/about-us/news-personal-stories/battling-brave-or-victim-why-language-cancer-matters

As always, posting this with love and gratitude for all your prayers and warm support.

May Gray in California...and Good News on our Journey

Well, the annual "May Gray" has enveloped our corner of the world, so (ornery as I am) I find myself impelled to share a positive update with all of you. Through the mists and fog that accompany these days, a ray of hope always manages to shine through, warming our spirits here.

First and foremost, I again want to express my deep gratitude for the outpouring of support and affection you have showered upon me during this challenging time. Your unwavering presence in my life has provided solace and strength, reminding me that I am not alone in this battle. I am eternally thankful for your constant loyalty and love.

Speaking of battles, I am happy to share that I am responding well to the current regimen of chemotherapy I have embarked upon. Though the road ahead will be arduous, your encouragement, prayers, and well wishes continue to fortify my spirit, and for that, I am profoundly grateful.

However, since my last report, an important change has taken place. After seeking a second opinion with a top oncologist in San Diego, I made the decision to change my care team. This may seem like a small shift, but in the realm of battling cancer, it carries immense significance.

The experience of facing this adversary has taught us the value of seeking multiple perspectives when it comes to our well-being. All of us diligently research and compare material possessions such as televisions and cars, but when it comes to matters as precious as our health and confronting the complexities of cancer, we need to remember that the same principle applies. It is through this realization that Jim and I sought a second opinion—an act that has empowered us and bolstered our confidence in the decisions we make regarding my treatment.

In closing, I want to emphasize how truly blessed I am to have such an incredible community of readers, friends, and well-wishers. Your letters, messages, and gestures of kindness have touched my soul in ways that words can never adequately express. Together, we shall face the challenges that lie ahead, weaving a tapestry of resilience, love, and unwavering determination.

First CT Scan Update of 2023

Hi Friends—

Today's appointment with the oncologist was a positive one. The scans show a slight improvement in the previous cancerous areas, and even more important, there are no new areas that are lighting up. This news is like a ray of sunshine breaking through the clouds after a stormy week. Actually, a stormy nine months (since my diagnosis).

Also, my dosage of chemo is being adjusted, and I will now be on two weeks on, two weeks off, which will allow my blood counts to improve in between treatments.

Jim and I want to express our sincere gratitude to all of you who have been praying for me, sending positive vibes, and keeping me and our family in your thoughts. Your love and support have been a constant source of comfort and encouragement, day after day. I am truly blessed to have such a wonderful community around me.

From the bottom of my heart, thank you all. Again, your love and support mean the world to all of us. We love you all and are incredibly grateful for each and every one of you.

Advocate for Yourself and Others

My Invasive Lobular Cancer (ILC) story started in 2003 when my general practitioner noticed a hard tissue in my right breast during my annual exam. I had just gone through a clear mammogram the week before. At the time we were living in Connecticut, and an ultrasound and a biopsy identified the tumor as 0.9 cm lobular breast cancer. I went through a lumpectomy and radiation and five years of tamoxifen, and all the stats I was given ran along the lines that they found the cancer early, and I was cured.

Fast forward to earlier this year. Nineteen years later. Out of nowhere, I developed food sensitivity…

Click Here to Read More at the Lobular Breast Cancer Alliance…

The Little Engine That Could

To all of my wonderful family and friends who’ve been asking about the results of my scans on November 4th. Here is a quick summary of the meeting with my oncologist and the urologist today.

My oncologist repeated that lobular breast cancer at the metastasized stage is a very difficult disease to track as it hides from scans. Still, she was incredibly positive and encouraged by how I feel. Here is some of what we discussed.

The line of treatment I’m on is currently working. There has been a reduction in ascites and less inflammation in my peritoneum. The brain MRIs were clear and showed just some inflammations from sinus infection.

What they suspected before as bone cancer—the breast cancer having metastasized in my spine—is confirmed, and now it’s showing in the sternum. I’m starting on a new regimen (injections) to treat that, in addition to the original targeted chemo.

The stent in the ureter is staying, and we’re changing it in January. Also, the report warns of colitis.

We’re again pushing my insurance company to approve an FES PET scan. My oncologist believes that will give us a better method of tracking this cancer.

How do I feel about all of this? GREAT. Do I consider it good news? ABSOLUTELY.

But most important of all, I’m extremely grateful to have your love and support, cheering me on every step of the way. Jim and I are The Little Engine That Could. We know we can…thanks to you.

Love you,

Nikoo

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.