Introduction

My Cancer Story -- Continues

My original diagnosis of ER/PR positive, Her2 Negative Stage2b - BRCA1+ with 5 positive nodes was in 2014. I had Chemotherapy, 4 AC and 4 Taxol, Bilateral Mastectomy, Oophorectomy, Hysterectomy, Expanders and full reconstruction - along with 35 radiation treatments. I was then declared "Cancer Free" in March 2015.

I was on Letrozole, daily, which I was told I would remain on it for 5 to 10 years.

However, on Groundhog Day 2017, I was re-diagnosed with Stage IV Triple Negative (TNBC) Metastatic Breast Cancer with a breast cancer tumor in my liver. As my first line of treatment, I joined a Clinical Trial - TOPACIO sponsored by Tesaro, which is a combined treatment of Immunotherapy and a Parp Inhibitor. The drugs are Niraparib (Parp) and Pemprolizumab (Immunotherapy). I have been on this trial since March 2017. ... Read More

Monday, April 29, 2019

Event Chair- Making Strides Against Breast Cancer

Unfortunately with my amazing personal news comes the unfortunate stark reality of Metastatic Breast Cancer #MBC aka Stage IV.
7 people, 1 of whom I consider a personal inspiration and part of my inner support group of friends (on Facebook, across the world) that communicate and share the good, bad and ugly of living with Stage IV breast cancer on a daily basis, have died from this horrible disease in the past 48 hours.
I am devastated and back to reality, and why my advocacy will never stop! Approximately 40,000 women DIE everyday from #mbc in just the United States alone, that is 110 women EVERY DAY!!
We need to change this. I will again post the graph from the CDC that shows that with all the strides made with Breast Cancer research, the number of BC deaths has not changed annually in over 25+ years! This is unacceptable. As Beth Fairchild (the founder of METAvivor) started 5 years ago #stageivneedsmore
This is so unfair, my friend who passed was under 40 years old and had 3 young sons, deserved so much more. Through it all she blogged about her journey, educated, raised awareness and funds for research and finding a cure, advocated for change and her story was even told by People Magazine less than a year ago.
Please continue to support the charities you KNOW make a change, there are many out there, but a limited number, who really fight to find a cure for Stage IV breast cancer.
While the official announcement has not been made yet, I have agreed to come back at the event chair of the Making Strides Against Breast Cancer event on October 19, 2019 in Jacksonville, FL. Any doubts I had about signing up again for this commitment are now gone and we will make this the best fundraising year this event has ever seen Making Strides Against Breast Cancer of Jacksonville. I know the Amercian Cancer Society will use the funds raised in last years event (over $570K) and this years event, make a difference in finding a cure by funding grants and clinical trials dedicated to #mbc
Only we can make a difference, our voices needs to be heard. This is not about pink ribbons or runs, or even walks, this is about saving lives, I will not sit on the sidelines and allow Breast Cancer “awareness” be about partial truths and fundraising directed at these efforts.
The truth is there is NO CURE for Stage IV breast cancer, any kind, and to quote Beth again from her appearance on the today show “no one dies from a lump in their breast” but 110 women die a day in the U.S.

Guest Blog on the BRCA Gene written by Stacy Hanson


Blindsided By Stage IV Breast Cancer

Friday, March 1, 2019

Update from Boston

We had a great and informative trip to Boston. 

Here are the highlights:

Dr. Mayer reviewed my Feb 11th scans with her radiologist and the radiologist said to her that there is NO signs of cancer! 😳 
Dr. Mayer then asked her to look at my Feb 2017 scans, from original diagnosis, and compare to these scans, at that point they were able to see the same small something in the area where we know the tumor was. She said it is most likely scar tissue but there is no way to know if there is any cancer cells in there without an MRI or PET but not worth doing.
She puts me at NED and considers me at complete response on the trial to date! 💕💕💕💕💕*Note, my Mayo oncologist takes a much more conservative approach to this diagnosis, while the radiologist report at Mayo also states No Definitive Evidence of Metastatic Disease, Dr. Colon currently officially does not call it NED as while he agrees it is probably scar tissue, wants to be exact as I am in trial and would not want to risk my participation in the trial and reports accurately that we can still see this TINY spot on the scans where the known tumor was located.

Still lots of unknown about going off Keytruda at the 2 year mark. Overall, if I can find a way to get Merck to give me the drug off trial, I will but most likely I won’t have success in those efforts. 
Bottom line, we are just data blind in Keytruda or any immunotherapy regarding length of time to be on it longer than 2 years especially for breast cancer and the FDA has only approved the drug for other cancers with the 2 year limit.

With all that said, I am thrilled and beyond amazed at my progress on these drugs and will stay on trial and continue to pray and trust in my doctors at Mayo Clinic and Dana-Farber Cancer Institute, as well as Tesaro. These drugs have given me much more than I could have hoped for with Stage IV Metastatic Breast Cancer with the BRCA1 gene. 

Thank you for following my journey and all your love and prayers! 💕💕💕


#tnbc #brca1 #stageivneedsmore #allforlucy

Tuesday, November 6, 2018

Where is the OUTRAGE???

In 1995, if there was a terriorst attack in the United States, that slowly began to kill approximately 40,000 women annually and disabled approximately 150,000 women, who may die from this disability. AND this continued year after year for the next 23 years to today with no end in sight, no way to stop it. You can be sure everyone would be motivated to find a way to stop it immediately, before more women die and more are affected. Politians, celebrities, major corporations, Charities, and the public, would join together to find a way to stop it.  These are huge numbers of people per year and is unacceptable in the United States to not do everything to stop it. 

However, this scenario exists, with these exact tragic number of deaths annually (approximately 40,000) and another 150,000 living with Stage IV Metastatic Breast Cancer, dying for a cure in just the United States. The CDC has tracked and reported the cause of deaths since 1995 to date, and as you can see in the graph attached, these numbers have remained unchanged for breast cancer deaths for more than 2 decades.

Where is the outrage?  Where are the politicians, corporations, celebrities and just the citizens of the United States coming together to fund, research, and find a cure for those already effected and researching to create a vaccine to completely eradicate this horrible disease.

I have sat in meetings and telephone calls with various “activists” over the past few weeks and am so discouraged and disappointed but also MOTIVATED even more to be a part of the change.

I will be posting over the next few days, my thoughts on what needs to be done. I have struggled with  my platform for my personal advocacy and I think I have some more clairty now.

Know this, there are a lot of Breast cancer charities out there, many do great things for research and to help patients financially and emotionally while fighting this disease at all stages. However, the field is littered with charities all focused on the same features and getting on the “Breast Cancer Awareness” band wagon, accepting that what they are all doing today, as a group and individually, is making an impact. We have made huge strides in early detection but are leaving behind the Stage IV Metastatic women fighting, losing their lives and/or accepting a quality of life less than what they deserve. It seems to me that it has been decided that the numbers of people in this group of MBC, is not large enough to dedicate much more to. Only 5% of all the donations raised across all breast cancer charities are donated to Stage IV Metastatic research and a cure.

Change is needed- who will be the first National Breast Cancer charity to step out of the pack, and focus on finding a cure and saving women! And take their research to the next step, Find a CURE  AND develop a vaccine that can eradicate breast cancer, like we have done with other horrible diseases in the past.  A cure and finding a way to eradicate the disease do not have to be mutually exclusive, we can and should be focused on both!





Friday, October 26, 2018

How does Breast Cancer Staging Work?



Do you know what each staging of Breast Cancer means? How is it determined?

How does Breast Cancer Staging Work?

he stage of a breast cancer is determined by the cancer’s characteristics, such as how large it is and whether or not it has hormone receptors. The stage of the cancer helps you and your doctor:
  • figure out your prognosis, the likely outcome of the disease
  • decide on the best treatment options for you
  • determine if certain clinical trials may be a good option for you
Breast cancer stage is usually expressed as a number on a scale of 0 through IV — with stage 0 describing non-invasive cancers that remain within their original location and stage IV describing invasive cancers that have spread outside the breast to other parts of the body.

How a breast cancer’s stage is determined

Your pathology report will include information that is used to calculate the stage of the breast cancer — that is, whether it is limited to one area in the breast, or it has spread to healthy tissues inside the breast or to other parts of the body. Your doctor will begin to determine this during surgery to remove the cancer and look at one or more of the underarm lymph nodes, which is where breast cancer tends to travel first. He or she also may order additional blood tests or imaging tests if there is reason to believe the cancer might have spread beyond the breast.
The breast cancer staging system, called the TNM system, is overseen by the American Joint Committee on Cancer (AJCC). The AJCC is a group of cancer experts who oversee how cancer is classified and communicated. This is to ensure that all doctors and treatment facilities are describing cancer in a uniform way so that the treatment results of all people can be compared and understood.
In the past, stage number was calculated based on just three clinical characteristics, T, N, and M:
  • the size of the cancer tumor and whether or not it has grown into nearby tissue (T)
  • whether cancer is in the lymph nodes (N)
  • whether the cancer has spread to other parts of the body beyond the breast (M)
Numbers or letters after T, N, and M give more details about each characteristic. Higher numbers mean the cancer is more advanced. Jump to more detailed information about the TNM system.
In 2018, the AJCC updated the breast cancer staging guidelines to add other cancer characteristics to the T, N, M system to determine a cancer’s stage:
Adding information about tumor grade, hormone-receptor status, HER2 status, and possibly Oncotype DX test results has made determining the stage of a breast cancer more complex, but also more accurate.
“The updated guidelines mean that staging is now catching up to how people are actually treated,” explained Elizabeth Mittendorf, M.D., Ph.D., Rob and Karen Hale Distinguished Chair in Surgical Oncology and director of the Breast Immuno-Oncology Program at the Dana-Farber Cancer Institute, who served on the expert panel that wrote the updated guidelines. “When developing a treatment plan, doctors always consider tumor grade, hormone-receptor status, HER2 status, and the Oncotype DX score, if applicable. So, a woman diagnosed with stage II disease that is triple-negative [estrogen-receptor-negative, progesterone-receptor-negative, and HER2-negative] will have a very different treatment plan than a woman diagnosed with stage II disease that is estrogen-receptor-positive. The staging guidelines now take into account what doctors have been doing all along.”
In general, according to experts, the new staging system classifies triple-negative breast cancer (estrogen-receptor-negative, progesterone-receptor-negative, and HER2-negative) at a higher stage and classifies most hormone-receptor-positive breast cancer at a lower stage.
You also may see or hear certain words used to describe the stage of the breast cancer:
  • Local: The cancer is confined within the breast.
  • Regional: The lymph nodes, primarily those in the armpit, are involved.
  • Distant: The cancer is found in other parts of the body as well.
Sometimes doctors use the term “locally advanced” or “regionally advanced” to refer to large tumors that involve the breast skin, underlying chest structures, changes to the breast's shape, and lymph node enlargement that is visible or that your doctor can feel during an exam.
Jump to a specific breast cancer stage to learn more:
The updated AJCC breast cancer staging guidelines have made determining the stage of a cancer a more complicated but accurate process. So, the characteristics of each stage below are somewhat generalized. To see all the possible characteristics of each stage, you can review the AJCC Breast Cancer Staging Guidelines (PDF) online.

Stage 0

Stage 0 is used to describe non-invasive breast cancers, such as DCIS (ductal carcinoma in situ). In stage 0, there is no evidence of cancer cells or non-cancerous abnormal cells breaking out of the part of the breast in which they started, or getting through to or invading neighboring normal tissue.
Learn about what treatments you can generally expect for stage 0 in the Options by Cancer Stage: Stage 0 page in Planning Your Treatment.

Stage I

Stage I describes invasive breast cancer (cancer cells are breaking through to or invading normal surrounding breast tissue) Stage I is divided into subcategories known as IA and IB.
In general, stage IA describes invasive breast cancer in which:
  • the tumor measures up to 2 centimeters (cm) and
  • the cancer has not spread outside the breast; no lymph nodes are involved
In general, stage IB describes invasive breast cancer in which:
  • there is no tumor in the breast; instead, small groups of cancer cells — larger than 0.2 millimeter (mm) but not larger than 2 mm — are found in the lymph nodes or
  • there is a tumor in the breast that is no larger than 2 cm, and there are small groups of cancer cells — larger than 0.2 mm but not larger than 2 mm — in the lymph nodes
Still, if the cancer is estrogen-receptor-positive or progesterone-receptor-positive, it is likely to be classified as stage IA.
Microscopic invasion is possible in stage I breast cancer. In microscopic invasion, the cancer cells have just started to invade the tissue outside the lining of the duct or lobule, but the invading cancer cells can't measure more than 1 mm.
Learn about what treatments you can generally expect for stage IA and IB in the Options by Cancer Stage: Stage IA and IB page in Planning Your Treatment.

Stage II

Stage II is divided into subcategories known as IIA and IIB.
In general, stage IIA describes invasive breast cancer in which:
  • no tumor can be found in the breast, but cancer (larger than 2 millimeters [mm]) is found in 1 to 3 axillary lymph nodes (the lymph nodes under the arm) or in the lymph nodes near the breast bone (found during a sentinel node biopsy) or
  • the tumor measures 2 centimeters (cm) or smaller and has spread to the axillary lymph nodes or
  • the tumor is larger than 2 cm but not larger than 5 cm and has not spread to the axillary lymph nodes
Still, if the cancer tumor measures between 2 and 5 cm and:
  • has not spread to the lymph nodes or parts of the body away from the breast
  • is HER2-negative
  • is hormone-receptor-positive
it will likely be classified as stage IB.
Similarly, if the cancer tumor measures between 2 and 5 cm and:
  • has not spread to the lymph nodes
  • is HER2-negative
  • is estrogen-receptor-positive
  • is progesterone-receptor-negative
  • has an Oncotype DX Recurrence Score of 9
it will likely be classified as stage IA.
In general, stage IIB describes invasive breast cancer in which:
  • the tumor is larger than 2 cm but no larger than 5 centimeters; small groups of breast cancer cells — larger than 0.2 mm but not larger than 2 mm — are found in the lymph nodes or
  • the tumor is larger than 2 cm but no larger than 5 cm; cancer has spread to 1 to 3 axillary lymph nodes or to lymph nodes near the breastbone (found during a sentinel node biopsy) or
  • the tumor is larger than 5 cm but has not spread to the axillary lymph nodes
Still, if the cancer tumor measures between 2 and 5 cm and:
  • cancer is found in 1 to 3 axillary lymph nodes
  • is HER2-positive
  • estrogen-receptor-positive
  • progesterone-receptor-positive
it will likely be classified as stage IB.
Learn about what treatments you can generally expect for stage IIA and IIB in the Options by Cancer Stage: Stage IIA and IIB page in Planning Your Treatment.

Stage III

Stage III is divided into subcategories known as IIIA, IIIB, and IIIC.
In general, stage IIIA describes invasive breast cancer in which either:
  • no tumor is found in the breast or the tumor may be any size; cancer is found in 4 to 9 axillary lymph nodes or in the lymph nodes near the breastbone (found during imaging tests or a physical exam) or
  • the tumor is larger than 5 centimeters (cm); small groups of breast cancer cells (larger than 0.2 millimeter [mm] but not larger than 2 mm) are found in the lymph nodes or
  • the tumor is larger than 5 cm; cancer has spread to 1 to 3 axillary lymph nodes or to the lymph nodes near the breastbone (found during a sentinel lymph node biopsy)
Still, if the cancer tumor measures more than 5 cm across and:
  • is grade 2
  • cancer is found in 4 to 9 axillary lymph nodes
  • is estrogen-receptor-positive
  • is progesterone-receptor-positive
  • is HER2-positive
it will likely be classified as stage IB.
In general, stage IIIB describes invasive breast cancer in which:
  • the tumor may be any size and has spread to the chest wall and/or skin of the breast and caused swelling or an ulcer and
  • may have spread to up to 9 axillary lymph nodes or
  • may have spread to lymph nodes near the breastbone
Still, if the cancer tumor measures more than 5 cm across and:
  • is grade 3
  • cancer is found in 4 to 9 axillary lymph nodes
  • is estrogen-receptor-positive
  • is progesterone-receptor-positive
  • is HER2-positive
it will likely be classified as stage IIA.
Inflammatory breast cancer is considered at least stage IIIB. Typical features of inflammatory breast cancer include:
  • reddening of a large portion of the breast skin
  • the breast feels warm and may be swollen
  • cancer cells have spread to the lymph nodes and may be found in the skin
In general, stage IIIC describes invasive breast cancer in which:
  • there may be no sign of cancer in the breast or, if there is a tumor, it may be any size and may have spread to the chest wall and/or the skin of the breast and
  • the cancer has spread to 10 or more axillary lymph nodes or
  • the cancer has spread to lymph nodes above or below the collarbone or
  • the cancer has spread to axillary lymph nodes or to lymph nodes near the breastbone
Still, if the cancer tumor measures any size and:
  • is grade 2
  • is estrogen-receptor-positive
  • is progesterone-receptor-positive
  • is HER2-positive or negative
it will likely be classified as stage IIIA.
Learn about what treatments you can generally expect for stage IIIA, IIIB, and IIIC in the Options by Cancer Stage: Stage IIIA, IIIB, and IIIC page in Planning Your Treatment.

Stage IV

Stage IV describes invasive breast cancer that has spread beyond the breast and nearby lymph nodes to other organs of the body, such as the lungs, distant lymph nodes, skin, bones, liver, or brain.
You may hear the words “advanced” and “metastatic” used to describe stage IV breast cancer. Cancer may be stage IV at first diagnosis, called “de novo” by doctors, or it can be a recurrence of a previous breast cancer that has spread to other parts of the body.
Learn about what treatments you can generally expect for stage IV in the Options by Cancer Stage: Stage IV page in Planning Your Treatment.

More information about the TNM staging system

The T (size) category describes the original (primary) tumor:
  • TX means the tumor can't be assessed.
  • T0 means there isn't any evidence of the primary tumor.
  • Tis means the cancer is "in situ" (the tumor has not started growing into healthy breast tissue).
  • T1, T2, T3, T4: These numbers are based on the size of the tumor and the extent to which it has grown into neighboring breast tissue. The higher the T number, the larger the tumor and/or the more it may have grown into the breast tissue.
The N (lymph node involvement) category describes whether or not the cancer has reached nearby lymph nodes:
  • NX means the nearby lymph nodes can't be assessed, for example, if they were previously removed.
  • N0 means nearby lymph nodes do not contain cancer.
  • N1, N2, N3: These numbers are based on the number of lymph nodes involved and how much cancer is found in them. The higher the N number, the greater the extent of the lymph node involvement.
The M (metastasis) category tells whether or not there is evidence that the cancer has traveled to other parts of the body:
  • MX means metastasis can't be assessed.
  • M0 means there is no distant metastasis.
  • M1 means that distant metastasis is present.

Tuesday, October 23, 2018

How Breast Cancer Clinical Trials Work https://breastcancer-news.com/2016/05/23/breast-cancer-clinical-trials-work/

How Breast Cancer Clinical Trials Work

Basic Research, R&D

Before clinical trials can begin, there needs to be evidence that a treatment is effective. Sometimes this evidence comes from academic labs that largely explore science for its own sake, not necessarily for the development of a drug. This is called “basic research.” From ideas generated in basic research or from company-sponsored “research and development” or (R&D), experiments typically proceed to pre-clinical research.

Pre-clinical Research

Pre-clinical testing is necessary before a medication or treatment proceeds to clinical trials. This testing involves experiments with animals, and also with cells in a dish (in vitro testing). While still necessary to advance potential therapies for diseases such as breast cancer, modern-day animal testing is generally governed by three principals: 1) reduce the use of animals to a minimum but utilize animal test subjects to collect data indicating that a treatment is safe and effective in people, 2) minimize animal suffering and assure animal welfare as much as possible, and 3) replace animal experiments with other alternatives when possible.
A great deal of pre-clinical testing focuses on ensuring that a treatment is safe, for example, that the treatment does not cause birth defects (teratology) or other medical problems. Pre-clinical testing can also focus on how a treatment works and whether it is predicted to work effectively.

Clinical Trials Defined

Clinical trials focus on administering an experimental therapy in humans, as opposed to animals. Clinical trials are well-designed studies that collect information about new treatments for diseases and disorders. Most of the time, this means medications, but clinical trials can also test other things, such as stem cell therapies, surgical techniques, tests for diagnosis, and medical devices, to name the most common.

Clinical Trial Design

Often in a clinical trial, effectiveness is compared against a placebo (sugar pill with no medication in it), or another means of comparison. In the case of life-threatening diseases such as breast cancer, it is not acceptable to use a complete lack of real treatment as a comparison, so a comparison is typically made using another type of medication that is commonly prescribed and already approved for use in that particular indication or disease type. A comparison is needed to determine if the medication works (efficacy) and also to see if the medication is safe (adverse events). Researchers will design the clinical trial for a specific period of time, during which participants either get the treatment, or the comparison treatment. Sometimes the treatment is added on to the comparison as an extra treatment (add-on therapy).
Typically, a study is conducted using the “double-blind” method. This means that neither the researchers giving the treatments nor the participants know who is getting which treatment. This prevents “bias,” or expectations that could influence the outcome of the study.
Researchers providing the treatment will have a code that is later “unblinded” so that they find out what treatment they were giving. The researchers also record measurements while the participants are receiving the treatment. These measurements can be for different things, such as to determine if the treatment is working as well as to assess safety and side effects.
Assessments in a breast cancer trial might include survival, how long a person is cancer-free (remission), or if a person experiences reduced cancer (partial remission). Other measurements might include blood levels of the medications. If someone participates in a clinical trial, that person will be informed about the measurements that will be taken before the trial starts. An “Informed Consent” document tells participants about the trial.

Clinical Trial Phases

Phase I testing is the first step in studies involving humans. The purpose is to determine safety and to evaluate side effects. Phase I studies also test how the drug is absorbed, distributed and eliminated from the body. Often people who do not have the disease (healthy individuals) participate in Phase I. The number of people involved at this stage is usually small.
Phase II trials are often divided into Phase IIA and Phase IIB. Sometimes these two sub-phases are combined. Phase II trials further assess dosing and are designed to determine the best drug dose to use and how much of a dose is safe. Phase II studies can also measure efficacy and safety testing in small numbers of participants. Often a treatment must pass Phase II in order to proceed to Phase III.
Most reports of medical treatment studies focus on Phase III trials. These are the large trials that are required for a drug or other treatment to receive approval for use. The purpose of this phase is to test efficacy and safety as well as to monitor for side effects. The main drug effects are often called the primary efficacy endpoints. Other measurements may be called the secondary endpoints. Adverse events refer to the side effects that occur during a study. These are defined as being due to the medication or therapy given (treatment-emergent adverse events) or as simply things that occurred during the trial, whether they were due to the treatment or not (overall adverse events).
Phase III trials can include additional testing time after the main measurements are taken. This is known as an “extension” or “extension study.”
Occasionally, researchers conduct Phase IV trials, after a drug has been approved. These trials collect additional information about the drug or treatment. They are sometimes called “post-marketing” trials.

The Need for Clinical Trial Participation

Throughout the world, clinical trials are constantly recruiting patients and initiating studies to test investigational therapies and novel therapeutic options for diseases and conditions with unmet medical needs. Although people who are chronically ill or afflicted with a disease such as breast cancer participate in these trials, how clinical trials work or what they are designed to accomplish is not widely understood. However, as more people are made aware of the critical importance of clinical trial participation and how it advances research and the developing of next-generation therapies, increased support of the clinical trial process can potentially lead to accelerating the development of new treatments that can improve patient outcomes for diseases such as breast cancer.
Be sure to stay tuned to our exclusive, ongoing series of articles on clinical trials for breast cancer — exclusively at Breast Cancer News. Our next article will explore different types of breast cancer clinical trials, and what you need to know about how they are managed and what they seek to accomplish.