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.

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.

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

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.