Take our Triple Negative Breast Cancer Quiz! (4 of 5)
Tigerlily Foundation’s mission is to make you, your own best advocate! Test your knowledge on Triple Negative Breast Cancer and take our TNBC Breast Health Quiz.
Take it here: TNBC Quiz
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Triple Bite: Badass, Passionate, Stubborn (3 of 5)
Received from Sarah Kelly, Co-founder of SaltyGirlBeauty, www.saltygirlbeauty.com
In 2015, Sarah was diagnosed with Stage 3 Triple Negative Breast Cancer, at 36 years old and 32 weeks pregnant. When something like this happens, it turns your world upside down. During this time, she and her sister Leah, who is an oncology nurse, started diving into the food they ate and the products they put on their bodies. Our skin is our largest organ, and everything we put onto our bodies gets absorbed into our blood stream and organs, so Leah and Sarah became incredibly passionate about doing the research and understanding the ingredients our bodies consume daily.
While going through chemo, Sarah lost all of her hair. When this happened, she felt like she lost something that made her feel beautiful and confident. As a way to endure this emotional hardship on top of her physical one, she discovered the power that beautiful scarves and lipsticks have in helping her rediscover her groove, confidence and saltiness. Thus, the idea of SaltyGirl Beauty was born…
Sarah and Leah wished there was a beauty brand that focused on organic, nourishing ingredients but also stood for something bigger than beauty! So, using their own experiences as their guide, their goal for SaltyGirl Beauty is for women to feel Beautiful, Confident and a little Badass!!!
Here’s a A Day In Her Life:
- 5:00 am – 6:30 am: My 10-month old wakes me up around 5 am (my husband and I take turns). Or I wake up around 6:30 with our 3-year old and 5 year old.
- 6:30 am – 7:30 am: All hands on deck getting ready for school and day care. Dad takes the 5 year old to school and I drop off the other two at daycare.
- 8:00 am: I head to SaltyGirl/Foundationd4Love offices.
- 8:00 am – 2:30 pm: I work on orders, communicate with customers and connect with cancer organizations. We are starting to work on our 2nd annual conference that focuses on Cancer Wellness and Selfcare, so that is a big focus on my plate right now. We also have our 4th annual Foundation4Love Gala in June so I am busy planning this event and working on the logistics.
- 3:00 pm – 4:00 pm: I pick up my son from school. We go home and work/play for about an hour then I pick up my other two kids.
- 4:30 pm – 8:00 pm: I make dinner, play and connect with the family. Story time and bedtime stories start around 6:30. The kids are all asleep by 8.
- 8:00 pm: My husband and I connect on our day. We may watch TV together — we are in Season 3 of the Americans! Or if the Celtics are playing, I lose my husband to the basement and I normally use this time to catch up on emails or to be creative (I am a night person) while catching up on my Bravo TV!
The only way to live life is to badass through it! I love what I do, not only because it’s making a difference in a positive way, but because it allows me to channel my fears, worries and positive thoughts into action that can help others change their
TNBC Clinical News (2 of 5)
Immunomedics’ sacituzumab govitecan drug shrinks tumors of metastatic Triple Negative Breast Cancer Patients
IMMU-132-01 Phase 1/2 clinical trial using Immunomedics’ sacituzumab govitecan drug has revealed that this drug increases survival time and shrinks tumor in metastatic triple negative breast patients.
In this clinical trial, 108 metastatic breast cancer patients who had been previously treated with other medications received the sacituzumab govitecan drug. The sacituzumab govitecan drug is unique in that it combines an antibody with a chemotheraphy drug to better target cancer cells. Specically, when the antibody portion binds to the Trop-2 antigen which is found on most breast cancer cells, the drug is released within those cells and into the areas of the tumor. Thus, sacituzumab govitecan drug provides targeted drug delivery to the cancer cells and reduces the tixic effect of the drug to healthy cell.
After approximately 10 months of treatment with the sacituzumab govitecan drug, tumor reduction was observed in 33% of patients, including three patients with a complete tumor clearance. The positive response to treatment with the sacituzumab govitecan drug lasted for about 8 months, with 6 patients having responses that lasted for more than 12 months. About 45% of patients experienced complete or partial response or stable disease for at least 6 months. The median progress free survival was 5.5 months and the median overall survival was 13 months.
Chemotherapy within 30 days of surgery improves survival rate among triple negative breast cancer patients
A review of data from nearly 700 patients with triple negative breast cancer has revealed that delays of more than 30 days in initiating chemotherapy after surgery were associated with lower disease-free survival, lower distant recurrence-free survival and lower overall survival. These results were presented at the Annual San Antonio Breast Cancer Symposium in December 2018.
In this data analysis study, the researchers reviewed data for 687 women with stage I, II or III triple negative breast cancer. The time to chemotherapy was less than 30 days in 189 patients, 31-60 days in 329 patients, 61-90 days in 115 patients and more than 91 days in 54 patients.
When comparing these 4 groups (eg., one group was the patients who had chemotherapy less than 30 days after surgery), the overall survival at 10 years for patients in the < 30 days of surgery group was 82%, 67.4% for those in the 31-60 days group, 67.1% for those in the 61-90 days group and 65.1% for those in the > 91 days group. Disease-free survival at 10 years was 81.4% for patients in the < 30 days, 68.8% for the 31-60 days group, 70.8% for those in the 61-90 days group and 68.1% for those in the > 91 days group. Distant recurrence-free survival at 10 years was 80.2% for patients in the < 30 days, 64.9% for the 31-60 days group, 67.5% for those in the 61-90 days group and 58.6% for those in the > 91 days group. Overall, patients receiving chemotherapy within 30 days after surgery had more than 10% higher 10-year survival rates compared to patients receiving chemotherapy more 30 days after surgery.
Read more about this study here.
Triple Bite: Maimah Karmo – CEO Survivor, Advocate and Badass (1 of 5)
As a Triple Negative Breast Cancer Survivor, I’m thankful for efforts that highlight TNBC. When I was first diagnosed 13 years ago, someone told me it was the good type of breast cancer to have. First of all, no breast cancer is the good breast cancer to have, and TNBC was even lower on that list, because there was no targeted treatment for that type of breast cancer.
Knowing this leaves many TNBC survivors in a place of fear. For many years, I wondered, “if there is no targeted treatment for my type of cancer, will it come back? Is it hiding somewhere and growing? What does this mean?” Thankfully, many researchers are working diligently to help find a treatment to target TNBC. Initially consumed by fear and worry, I turned that energy into action – to help as many young women as possible, to bring awareness to the disparities and challenges that younger women face; and to bring light where is darkness – through education and spreading hope.
One of the best ways to overcome your fear is to step into and act. While some really smart people are working to find a cure, I’ll be shining my love light in all the dark places, helping to inspire others to act and living my best life ever. Whatever your diagnosis is, it doesn’t own you – you decide how to live your life despite it.
We are excited to highlight TNBC this week. Over the next year, we will be working with researchers and will share updates on TNBC as they become available.
Please share your thoughts and your stories with us; and keep the faith!
Much love,
Maimah
My Diagnosis & Discovering my Jenfluence
By: Jen Hoverstad
Before March of 2018, I led a seemingly vanilla life in Raleigh, North Carolina – the same city where I was born.
I’m 34 and married my high-school sweetheart. We have two daughters, Elin, four, and Halle, one.
However, on Sunday, March 25, 2018, after a hot yoga class, I noticed discoloration on my left breast. It was a blueish purple and slightly raised – kind of like it was a scar that was healing.
But, I had no reason to have a scar.
After noticing the discoloration, I did a breast self-examination and immediately felt the mass. It was dense and distinct. I did not have the same mass or discoloration on my right breast.
I saw my OB/GYN the very next day. By Tuesday, I was sent to see a breast specialist.
On Wednesday, I was diagnosed with invasive ductal carcinoma, HER2+. The tumor was 6cm, and one lymph node tested positive.
Days later on April 10th, my daughter’s first birthday, I had my port placed.
And just two days later on April 12th, my 10th wedding anniversary, I started chemotherapy.
After completing chemo and my bilateral double mastectomy, I learned that I had a complete response to the chemo – both my tissue and lymph nodes were clear of cancer at the time of the surgery.
Immediately following the completion of my chemo, I started six weeks of radiation.
Genetic testing confirmed my cancer was not handed down from a prior generation, which gives me some hope that, perhaps, cancer will not find my girls.
I’m an attorney by trade, but currently taking time off to focus on healing.
Looking back before my diagnosis, I worked out nearly every day and ate in moderation. My physical in January 2018 showed no signs of what would come later in the year – I was considered in “good health.”
Now, it’s time to get back to that good health.
I’ve blogged about my journey on my website: www.jenhoverstad.com.
I created the term “Jenfluence” to remind myself that by sharing my story, I can have an effect on the character and behavior of others.
Whether it’s interacting with people in person or writing a post on Instagram, I’ve become hyper-intentional in hopes that my positivity and perseverance will transfer to others.
New advances in breast cancer research and treatment
Tigerlily is excited to share new advances in breast cancer research and treatment that can benefit our patient community. We hope these updates will help keep you on top of the latest developments, inform your conversations with your doctor, and empower you in your healthcare decisions.
**NOTE: These posts are intended for informational purposes only. ALWAYS discuss with your physician before making any treatment decisions.
In this post, we discuss a new study1 that suggests a potential option for preventing further metastasis of breast cancer that has spread to the bone.
The study, published in Breast Cancer Research on Nov. 20, focused on circulating tumor cells, or CTCs. Circulating tumor cells are cancerous cells that detach from tumors and move into the blood. (In some cases, they can lead to the development of metastasized tumors in new locations in the body.2) Fewer than 50% of breast cancer patients display circulating tumor cells, but for those who do, CTCs are generally considered dangerous, and scientists have been at a loss as to how to predict whether or when a patient may produce them.
Based on this particular study, however, it appears that there is one particular factor which may help prevent CTCs from the bone. When the researchers looked at patients whose cancer had already metastasized to the bone, they found that those who had received the drug denosumab were less likely to have circulating tumor cells (CTCs) in their blood. This finding suggests that denosumab may help prevent the cancer from further metastasizing beyond the bone.
In patients with breast cancer, denosumab is normally used to counteract bone loss from cancer therapy, or to protect against bone damage when the cancer has moved into the bone.3 The scientists behind the recent study hypothesized that, since denosumab helps prevent the bone from breaking down, it also prevents the opportunity for cancer cells located in the bone to break off and move into the blood. Another theory is that the denosumab may have an effect on the tumor cells themselves. Importantly, the researchers noted that the same anti-CTC benefit is not seen with the drug bisphosphonate.
Although further research is needed to determine the effectiveness of denosumab in this new capacity, it may prove to be a useful preventative option in keeping metastasized breast cancer from spreading beyond the bones.
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Sources:
[1] Nicola Aceto, Catharina Balmelli, Francesc Castro-Giner, Cinzia Donato, Sofia Gkountela, Viola Heinzelmann-Schwarz, Ilona Krol, Christian Kurzeder, Julia Landin, Alexandra Malinovska, Christoph Rochlitz, Ramona Scherrer, Barbara Maria Szczerba, Marcus Vetter, Walter Paul Weber, and Alfred Zippelius. “Denosumab Treatment is Associated with the Absence of Circulating Tumor Cells in Patients with Breast Cancer”, Breast Cancer Research 20:141 (November 2018), https://doi.org/10.1186/s13058-018-1067-y
[2] Seungpyo Hong, Daniel P. Lindsay, Dominic H. Moon, and Andrew Z. Wang, “Clinical Indications for, and the Future of, Circulating Tumor Cells”, Advanced Drug Delivery Reviews 125 (February 2018), 143-144, https://doi.org/10.1016/j.addr.2018.04.002
[3] “Denosumab (Subcutaneous Route)”, Mayo Clinic, accessed November 24, 2018, https://www.mayoclinic.org/drugs-supplements/denosumab-subcutaneous-route/description/drg-20074315
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In this post, we share an article1 on an up-and-coming option for breast reconstruction surgery that could significantly reduce negative aftereffects for patients.
Traditionally, breast reconstruction surgery has been performed by cutting into the chest’s pectoralis muscle and inserting implants into a space made beneath it. Because the muscle is being damaged and overextended, patients often experience pain after having this type of breast reconstruction surgery, and do not have the same amount of strength in the muscle that they had had before. Additionally, with this method, the implants may become displaced whenever the muscle moves, since they are located right below it.
Now, however, an alternative technique is offering patients an improved experience. Prepectoral reconstruction is a different method of breast reconstruction surgery, wherein the implants are inserted right beneath the skin instead of beneath the muscle. A material known as a biologic mesh is also placed around the implant, below the skin, to prevent infection or scar tissue. In a prepectoral reconstruction, the pectoralis muscle never has to be cut, so patients can avoid the resulting pain and unwanted implant movement that go along with the traditional method.
While the new prepectoral reconstruction method is not offered everywhere, it offers patients the possibility of a much more comfortable outcome than traditional breast reconstruction surgery, and may be a worthwhile option for some women to explore.
Source:
[1] Kathleen Masterson, “New Method of Breast Reconstruction May Reduce Pain for Some Cancer Survivors”, UCSF News Center, November 20, 2018, https://www.ucsf.edu/news/2018/11/412376/new-method-breast-reconstruction-may-reduce-pain-some-cancer-survivors
Update on New Advances in Breast Cancer Research
Tigerlily is excited to share new advances in breast cancer research that can benefit our patient community. We hope these updates will help keep you on top of the latest developments, inform your conversations with your doctor, and empower you in your healthcare decisions.
In this article, we share a new discovery, published on Oct. 16 in the journal Breast Cancer Research, that can help doctors determine whether a patient’s metastatic breast cancer is about to reemerge. Researchers from the Mount Sinai School of Medicine have found that a certain type of protein, called NR2F1, is the key. This protein helps to “turn off” cancer cells, preventing them from causing harm. If tumor cells contain a large amount of this protein, a doctor can conclude that the cells will soon become disabled, and are unlikely to turn into a full-blown reemergence of the disease. On the other hand, if the protein is found in short supply in the cells, it would signal that the cancer is likely to come back, since there is not enough NR2F1 to prevent its development.
In the most typically observed form of breast cancer, tumor cells spread to the bone marrow; therefore, to test metastasized tumor cells for NR2F1, a doctor would take a bone marrow test. Once the physician has the results, he or she can determine, based on the amount of NR2F1 found in the metastasized cells, whether they are likely to become harmful, or whether they are likely to be turned off by NR2F1 and remain harmless. In the United States, bone marrow tests are not typically given during check-ins with patients, so these findings may provide a clue to physicians as to how to catch a potential reemergence–and provide necessary treatments–early on. Additionally, one type of therapy, known as androgen-deprivation treatment, has shown promise in raising NR2F1 levels, and other drugs are being tested for the same capability. As these treatments become available, doctors would be able to use a bone marrow test to determine whether or not these treatments might help their patients.
In summary, bone marrow tests may help doctors to determine if a patient’s metastatic breast cancer is coming back. By testing for levels of the protein NR2F1, doctors can decide whether patients need to begin treatment or can continue with their regular routine.
Source: The Mount Sinai Hospital / Mount Sinai School of Medicine. “New way to determine whether metastatic cancer cells in breast cancer patients are dormant or soon to turn deadly.” ScienceDaily. www.sciencedaily.com/releases/2018/10/181016083535.htm (accessed November 2, 2018).
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In this article, we share new findings that offer hope for triple-negative breast cancer. This particular form of cancer is especially hard to treat, but in a new study, featured in the New England Journal of Medicine on Oct. 22, researchers found that administering immunotherapy alongside chemotherapy could lower the likelihood of mortality and metastasis by as much as 40%.
In the study, patients were given the immunotherapy drug atezolizumab on a biweekly basis, while also receiving chemotherapy on a weekly basis. The chemotherapy helps to chip away at the tumor cells’ defenses; the immunotherapy then enables the patients’ natural immune systems to find and destroy the weakened cancer cells. A similar study also showed promising results with a different immunotherapy drug, Tecentriq, lending support to the other study’s conclusions.
These studies represent an important contribution to the fight against triple negative breast cancer, particularly for young women, who are the most likely to be diagnosed with this type of cancer. The research offers evidence that immunotherapy, in conjunction with chemotherapy, can improve patients’ prognoses.
Sources:
1) Queen Mary University of London. “First immunotherapy success for triple-negative breast cancer.” ScienceDaily. www.sciencedaily.com/releases/2018/10/181022122810.htm (accessed November 2, 2018).
2) LaPook, Jonathan. “Immunotherapy drug showing promise for aggressive type of breast cancer.” CBS News. https://www.cbsnews.com/news/tecentriq-immunotherpy-triple-negative-breast-cancer-shows-promise/ (accessed November 2, 2018)
Stay Persistent
Working in the healthcare industry taught me how important it is to keep patients updated on every step of their treatment to avoid any unnecessary delays causing undue stress, worry or anxiety.
Professionally, I take pride in what I do and I always do my best to make my customers happy and over deliver on their expectations. Dealing with doctor offices on a daily basis, I know exactly how hard it is to get in touch with doctors with their busy schedules.
As a patient, usually when I call and leave a message, I’m willing to wait up to 4 hours for a response. Some of my doctors will not call back until they are done with their scheduled patients, but they always call back sooner if it is something important.
When I was informed that I needed an ultrasound biopsy done on my “healthy” breast to check on a newly found spot, I called my doctor’s office to simply get an explanation and better understanding of next steps. But, no one bothered to call me back for hours. Upset and frustrated, I decided to leave work early and drive to my clinic. I’m so glad I did. I walked into the office only to find the office assistant doing everything but her job. All of my anger and stress was apparent, and thankfully a nurse navigator who saw what was going on came to my aid. She quickly put the office assistant in her place. Amazingly, within 30 minutes not only did I get all of the answers I needed but I had the ultrasound biopsy performed as well.
If not for my persistence and self advocacy, I don’t know how long it would have taken the office assistant to finally call me back that day. I needed my questions answered so that I could schedule the ultrasound biopsy.
It is very important to give your doctor a chance to call you back, but if you have patiently waited for a return call for several hours, it is time to take matters into your own hands. Who knows, maybe your case is also delayed by an incompetent office assistant.
Call often to get your answers. If your clinic utilizes the internet patient portal, use it to send the message as well. My oncologist actually prefers this type of communication. He always replies to my messages quickly or calls me the moment he sees the message. Ask your doctor which method of communication he/she prefers. And how long it usually takes them to respond. This way you will know how long to wait before taking more proactive actions.
Written By: Izabela Gardula, ANGEL advocate
Scanxiety
Scan•xiety: the anxiety associated with cancer detecting scans.
I guess you could say that I had to become a cancer patient to learn that scanxiety exists. My body is prone to developing large cysts and weird skin lesions so I got use to all of the extra screening I had to do. Over the years, I had multiple ultrasounds, CT scans, and several moles removed followed by biopsy. Every time the results came back the same: benign.
Two months before I was diagnosed with breast cancer I went for my routine annual check-up. While examining my neck, my primary doctor felt “something” and sent me for a neck and thyroid ultrasound. I was like, “Sure, why not?” A few days later, my doctor called me to share the results that there were nodules on my thyroid and a biopsy was recommended with an endocrinologist. Once again an ultrasound guided biopsy was performed and about one week later the results came back: benign, please follow up every 6 months.
Two months later, I felt a lump in my breast and was sent for my first mammogram. Again I thought this would not be a big deal and that I would be told “it’s a just a cyst.” This time, it turned out to be breast cancer.
All I can say is that from that day forward, my “routine” scans, tests and biopsies scared me.
I no longer go to doctor visits and screening appointments thinking,“ Oh, it’s nothing. It’s just another benign cyst”. I experience anxiety with each appointment and every screening. This is scanxiety. And this is my “new normal”. I’ve come to realize that after all the tests and appointments I’ve been through both before surgery and after, that I am allowed to be scared. I am afraid to let my guard down. I’ve learned that scanxiety exists. Scanxiety is real and I am not afraid to say it aloud.
By: Izabela, ANGEL Advocate
When they take your “security blanket“ away
My breast cancer was ER (Estrogen) and HER2 positive. Because of HER2, my doctor told me that I will need a chemotherapy for the best possible outcome.
I know that some people struggle with the idea of chemotherapy and its side effects of loosing hair, not feeling well, but I was happy. Yes, you read it correctly! I was happy with this news, as I knew I’m doing everything I can to wipe out any possible cancer cells that may still reside in my body.
My protocol was 4 rounds of AC (Adriamycin and Cyclophosphamide) and 12 rounds of Taxol. With additional 17 Herceptin and Perjeta infusions. After all that, I had to do 28 radiation treatments. Although, all this may seem like a lot, it went through pretty quick.
My chemotheraphy infusions were my “security blanket”. Each treatment was followed with checkups and blood tests. I felt like with every treatment, I was receiving another layer of protection.
So when the time came for the last infusion, I started to panic. Over sudden my security blanket will be taken away from me. How can I survive with out? One of the infusion nurses sat down with me and told me that the way I was feeling is very common. Many think that once the infusions stops, the medicine stops working as well. She informed me that the treatment I received is meant to work for years and years to come. Deep in my mind I knew that, however hearing it from the professional made all the difference and put me in ease. I was able to accept that chemotherapy was over and my imaginary “security blanket” is still working but protecting me from the inside.
As scary as chemotherapy may seem to be, take it, accept it and treat it like extra layer of protection. Do what the doctor prescribes and when the time for the last round arrives, don’t panic. The medicine is still working.
-Izabela, ANGEL advocate