American Society of Clinical Oncology ASCO 2019

ASCO 2019 : Metaplastic Breast Cancer Global Alliance

Chicago, IL : May 31st– June 4th 2019

Meeting for American Society of Clinical Oncology

Chicago, IL : May 31st– June 4 2019

The Metaplastic Breast Cancer Global Alliance was excited to qualify for an ASCO-Sponsored Patient Advocacy Booth this past May 31st through June 4th, 2019. This annual meeting of the American Society of Clinical Oncology provides nonprofit patient organizations the opportunity to meet, interact and exchange information with approximately 40,000 meeting attendees from all over the globe.

Florida -- 22

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South Carolina -- 4

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Georgia -- 8

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Alabama -- 2

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North Carolina -- 4

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Tennessee -- 3

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Mexico --

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Texas--25

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New Mexico -- 4

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Arizona -- 3

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Utah -- 1

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California -- 23

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Oregon -- 4

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Montana -- 2

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South Dakota -- 1

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Minnesota -- 4

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Iowa -- 5

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Illinois -- 14

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Wisconsin -- 5

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Michigan - 11

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New York -- 10

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New Jersey -- 8

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Pennsylvania -- 10

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Maryland -- 5

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Washington State -- 3

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Virginia -- 8

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South Africa -- 1

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Costa Rica --

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Romania -- 1

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Germany -- 3

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Netherlands -- 1

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New Hampshire -- 1

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Kentucky -- 4

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Indiana -- 8

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Greece - 2

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Poland - 1

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Ohio-- 5

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Missouri--3

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Colorado--7

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Nebraska--3

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Curacao--1

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Louisiana--3

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Spain--1

Connecticut -- 1

Hawaii-- 1

West Virginia-- 1

Maine-- 2

Massachusetts--1

Puerto Rico--1

Mississippi--1

Kansas--1

Philippines--1

Ontario Canada-- 6

Manitoba Canada-- 2

Alberta Canada-- 2

Toronto Canada-- 2

Newfoundland Canada-- 1

Quebec Canada -- 0

British Columbia Canada-- 0

Saskatchewan Canada-- 0

New Brunswick Canada-- 0

Nova Scotia Canada-- 0

Prince Edward Island, Canada-- 0

Nunavut, Canada--0

Northwest Territories Canada--0

Yukon Canada --0

British Columbia Canada--0

Western Australia--4

Northern Territory Australia--0

South Australia--0

Queensland Australia--8

New South Wales Australia--2

Victoria Australia--2

Tasmania Australia--0

New Zealand--2

Malta--1

India-- 1

Scotland, United Kingdom --

Northern Ireland, United Kingdom

Wales, United Kingdom -- 1

England, United Kingdom -- 17

Republic of Ireland -- 1

Alaska -- 1

India -- 1

Singapore -- 1

Turkey -- 1

We were able to share our Diagnosed Member Map at our Booth from a LapTop.

Members, Family and Friends

We were very fortunate to have ten diagnosed members, family and friends attend this valuable conference and assist our busy booth. We were thrilled with the welcome we received from doctors all over the world who were surprised to see a patient advocacy group representing MpBC! We shared information with many doctors and even made a short video with a doctor from Brazil so that she could provide better support to her patients!

“Raising Global Awareness and Supporting Research for Metaplastic Breast Cancer”

Our handouts:

Continued Need for Research

The week was capped off by an early-morning session on Monday the last day of the conference, delivered by Dr. Stacey Moulder, that highlighted Metaplastic Breast Cancer and the need for research.

Take Home Points and Conclusions

ASCO is the largest venue for sharing cutting edge scientific and educational developments in oncology and we were very proud of all our efforts and how we represented our rare community.

Meeting with Dr. Moulder at our Booth

Other Patient Advocates We Met

Ian Still Sporting Our Shirt!

Best Memories and Takeaways from ASCO 2019!

Susan D. Oran– “For me, the highlight was hearing Metaplastic Breast Cancer discussed in a session attended by hundreds of doctors at 8am and meeting with Dr. Moulder again. Eating dip-n-dots with my oncologist Dr. Michael Nissenblatt and meeting all of you wonderful people and seeing how we were able to ban together towards our common goals so easily!”

Nancy McCormack Buschener– “Meeting all of you and your amazing doctors. I learned so much! Oh and the cake building!”

Sue McCaldon– “For me it was meeting you all and having the opportunity to go into sessions to learn so much. Also, seeing my doctor and finding my drug trial poster and talking to the research people in the drug company.”

Dr. Janku stopped by to say Hi!

Jim Harvey Sy– “Best part was meeting you guys and learning that there is so much out there focused on finding a cure for cancer”

Casie Friedrich- “For me it was seeing oncologists and other oncology professionals from all around the world looking to us for information to better help their patients! And the Lattes with your face on them!”

Stephanie Oran– “Hearing Dr. Moulder say that social media has provided a way for doctors to meet patient advocacy groups (like us!) Oh and all the free snacks!”

Laura Houmes– “My first takeaway is WOW! I am completely exhausted but was worth all our combined efforts. I can’t say there was any “best” part of our ASCO gathering. The whole event was a blessing to me and more than I could have imagined. Metaplastic breast cancer brought us all together and we all are trying to make a difference. I believe we made all who have donated to our nonprofit proud!”

Finally, just some images from our time at a local historical, 1800s haunted AirBnB!

Follow Up Care For Metaplastic Carcinoma of the Breast

Information, follow up, News

Follow up care for metaplastic carcinoma of the breast

MpBC Global Alliance, Inc. Recommendations

Metaplastic Breast Cancer is a uniquely complicated, rare breast cancer that to this date is not well understood. Because of higher than normal incidence of metastatic disease in metaplastic breast cancer, follow up monitoring and scanning, either during neoadjuvant therapy or during and after initial treatment, can be critical. Plans for monitoring and scanning should be discussed with a patient and their treating physician early in their treatment plan. Based on surveys of our members, early detection of metastases has resulted in early adoption of additional therapies and has led to long-term survival and NED.

Referencing the ACS/ASCO April 2015 Breast Cancer Survivorship Care Guidelines, diagnosed patients may focus on the Guideline Disclaimer Section. This publication specifically states:

“The Information herein should not be relied on as being complete or accurate, nor should it be considered as inclusive of all proper treatments of methods of care or as a statement of the standard of care. With the rapid development of scientific knowledge, new evidence may emerge between the time information is developed and when it is published or read.”

The following is also stated:

“This information does not mandate any particular course of medical care. Furthermore, the information is not intended to substitute for the independent professional judgment of the treating provider, as the information does not account for individual variation among patients.”

The Metaplastic Breast Cancer Global Alliance polled 30 Stage 4 diagnosed members in October 2018. 26 of the 30 reported metastatic disease within 18 months following initial treatments.

Conclusion: Based on the published guidelines and our members’ experiences, patients with metaplastic breast cancer should work with their physicians to establish an aggressive scanning protocol during and after treatment. Physicians should evaluate these patients’ need for careful watching, especially during the first 2 years after treatment, and work with insurance providers to meet these patients’ needs.

14 Ways to Advocate for Yourself as a Metaplastic Breast Cancer Patient

Information, News

14 Ways to Advocate for Yourself as a Metaplastic Breast Cancer Patient

As a patient with a rare disease, it is crucial to take charge of your care

You, as a patient with Metaplastic Breast Cancer (MpBC), have been given life-changing news. Suddenly your world is turned upside down. Your days are filled with nonstop doctor’s appointments, scans, radiation, bloodwork, and chemotherapy. It can all become very overwhelming, and it’s often difficult to keep up with all the new information you are being given.

It Takes Work

My mother — a Metaplastic patient herself — learned that she had to become her own advocate. Once she found out she had MpBC, she researched it endlessly online. She wrote down questions she had and brought them to her appointments. She bought a binder and organized all her reports. She did her best to understand how to read lab results. She was able to get valuable information from the members of the Facebook support groups she joined. She went through the usual surgery, chemotherapy, and radiation therapy.

Left with No Options

After a lung resection of the initial nodule, my mother’s cancer reoccurred. Clinical trials were then her best option. She ended up going on a clinical trial that kept her stable. The side-effects affected her liver so bad that she was pulled out of the trial.

Left with no options, she told her story on Facebook and did a lot of online research. Because of her efforts, she ended up finding a clinical trial at MD Anderson Cancer Center in Houston, Texas. The trial ultimately worked and she is still with us today — 5 years later. This is why being a proactive patient is so important.

Get the Upper Hand

Metaplastic Breast Cancer is very fast growing. It is also very rare, accounting for less than one percent of all breast cancers [1]. Because it’s so rare, there aren’t many oncologists that are familiar with exactly how to treat it. In fact, there isn’t even a specific standard-of-care treatment for this type of cancer. It is treated the same as invasive breast cancer and triple-negative breast cancer [2].

One thing we’ve learned is staying ahead of disease progression gives patients the upper hand. You must have your next plan-of-action in your back pocket. This way, you can immediately take the next steps.

You Are Also a Member of Your Care Team

I cannot emphasize this enough. You are a vital member of your care team. As a patient diagnosed with a rare type of cancer, it is absolutely crucial that you stay on top of your care. Yes, it’s scary — and stressful — but your future depends on you taking an active role in your health. Below are some helpful tips that can help give you a jump-start on being your own patient advocate:

Keep a binder so that you can organize all test results, imaging, pathology reports, and visit notes in. It’s important that you ask for copies of these so you can hand-deliver them to other physicians that are on your care team. It is also helpful to keep for your own reference.

Use the calendar on your phone and set reminders for your appointments — or a physical calendar that you can handwrite them in.

Have a friend or family member with you taking notes while you talk with the doctor. It’s good to have another set of ears and emotional support.

Speaking of support…

Join a support group. Facebook is a great way to connect with many support groups. There are some specific to MpBC — the MpBC Global Alliance Facebook group is a great place to start. These groups not only supply emotional support, but also valuable information on new research, clinical trials, and ways to handle side-effects of cancer treatment. In-person support groups and seeing a therapist are also great options.

Focus on taking care of yourself. This is a good time to reflect back on your past and examine any bad health habits. Not saying they caused this cancer, but you need to strengthen your body. You need to stay as strong as possible mentally and physically during cancer treatments. Seeing a nutritionist can support this effort.

Set an alarm or reminder on your phone to take your medications.

Make sure your oncologist is familiar with MpBC. Being that this is a very rare type of cancer, it is important to make sure your cancer care team is familiar with it or has treated patients with it in the past.

Get a second opinion. It’s absolutely OK to get a second opinion. Especially when you’re diagnosed with a rare disease. Don’t worry about offending your doctor. Any good practitioner would respect your right to one. This is a time where you should consider all your options, and have a reassurance that you have the right treatment plan for you.

Schedule a port placement. Ask your oncologist about getting a port placed. This will make it easier on your veins and give better access when you are having frequent blood draws and IV medications administered.

Discuss having genomic testing done on your tumor with your oncologist. This will help your doctor individualize your treatment. There’s a list of companies that do this listed here.

Have regular scans to track disease progression. Get a plan in place with your oncologist to have regular scans done to track the status of your cancer.

Develop an understanding of the terminology. You’re probably asking, “Why should I need to know that?” Well, it’ll help you understand your diagnosis better and in decision-making. This is part of being a proactive patient.

Know the possible side-effects of your treatment. This way you know what to look out for ahead of time and how you can treat them.

Write down questions that pop into your head during the day and bring that list in with you to your appointment. Having your questions answered will give you some peace of mind.

Communication Is Key

Express to your physicians and care team how you feel. It’s true when they say that you know your body better than anyone else. Is something bothering you? Are you feeling depressed? Is there a new pain that you’ve been experiencing? If something doesn’t feel right, let your doctor know! Communication is key in healthcare.

If there is anything that your physician is talking to you about you don’t understand, ask them to repeat it in a different way. All this ensures that you are getting the best care. Patients who play an active role in their care usually have better outcomes when compared to patients who play a passive role [3]. So, I hope these tips help involve you in your care and take charge of your health today.

Casie Friedrich, PA-C

Strategic Alliance Partnership Program Announcement

Information, News

CURE Media Group and Rare Disease Report® Add The Metaplastic Breast Cancer Global Alliance to Their Strategic Alliance Partnership Programs

Many of you know CURE magazine as an invaluable resource for Cancer patients. The MpBC Global Alliance is proud and excited that we have been recognized as a Strategic Alliance Partner of CURE. Looking forward to moving ahead together and potentially seeing Metaplastic Breast Cancer discussed in this global magazine!

Announced on March 13, 2019, CURE Media Group — which reaches over 1 million patients, survivors and caregivers across an industry-leading multimedia platform devoted solely to cancer updates, research and education — and Rare Disease Report® (RDR), a leading digital media platform focused on the rare disease community, announce their partnership with The Metaplastic Breast Cancer Global Alliance (MpBC Global Alliance, Inc.)

Read the full press release HERE!

For more information about CURE Media Group’s Strategic Alliance Partnership program, click HERE.

For more information about RDR’s Strategic Alliance Partnership program, click HERE.

Tanya Gendle Member Spotlight Story

News, spotlight

Spotlight on Our Diagnosed Members: Tanya Gendle’s Story

Metaplastic Breast Cancer Global Alliance Members’ Stories

The following is a story on Tanya Gendle, written by Megan Doherty published in the Canberra Times on 16 November 2018. Full article HERE.

Tanya Gendle is fragile, strong, graceful, joyful and distraught as she sits on the precipice between life and death.

After being diagnosed with breast cancer in both 2005 and 2015, the disease returned again last year and spread to her liver. The super-fit personal trainer has endured chemotherapy, radiation, a double mastectomy, and tried a strict ketogenic diet.

But nothing is helping. The cancer spread to her skin last month. It is stage four. Terminal. She is now receiving palliative care in her home in Gungahlin.

“I’m not afraid of dying,” she said.

“I understand what’s going on. I think if I wanted to leave a message to people, it’s just to find a place of acceptance, because you can’t change it.

“What do I do for acceptance? I’ve worked a lot with a counsellor in that regards. I guess I’m lucky because even though I’m 40, I’ve lived a really full life.

“There’s been, like everyone else, difficult times, but the last 10 years of my life have been really good. And I don’t need to make amends with everyone, because I’ve done all that healing. And there’s nothing I have a burning desire to do because I’ve always done what I wanted to do.

“Like my girlfriend said, ‘Tanya, you’ve lived life in fifth gear’. And I have. I know I’ve done the best that I can.”

Ms Gendle was Julia Gillard’s personal trainer when Ms Gillard was prime minister.

Ms Gillard, now chair of Beyond Blue, was as moved as anyone when told Ms Gendle was now in the final stages of her life, and spoke about the impact Ms Gendle had on her during her years in The Lodge.

“Very early in the morning we would do yoga, box or other forms of training. Of course, the physical exercise did me good but Tanya’s impact was broader than that,” Ms Gillard told The Canberra Times.

“She is a free spirit with a huge capacity for empathy and caring. Our morning conversations became very important to me.

“Tanya decided to be a personal trainer as a result of becoming fascinated by every aspect of physical, mental and spiritual health following a fight with breast cancer as a very young woman.

“I am very sad her cancer has returned so aggressively. My thoughts are with her.”

It’s not as though Ms Gendle has not fought. Knowing she had the BRCA1 gene and was more susceptible to cancer, she had both breasts removed and then reconstructed in 2015 at Canberra Hospital.

The plastic surgeon who did the reconstruction, Ross Farhadieh, was inspired by her strength.

“In practicing the art of medicine, I am constantly humbled by my patients. By their fortitude, their strength and their content of character,” Mr Farhadieh said.

“Some, like Tanya, leave a lasting impression from the beginning. Her resilience, her kindness, her sense of humour and her generosity of spirit remain inspirational.”

Ms Gendle found another lump in her breast in 2017 and underwent two more surgeries, more radiation therapy and dabbled with a ketogenic diet, hoping it would help. She took leave without pay and focused on having good times with her husband John de Ridder. She took part in a clinical trial of immunotherapy. But the cancer was unrelenting, attacking her liver and skin. It was terminal.

“I was devastated. I just don’t know what to do. It was the hardest diagnosis,” she said.

It was all the more cruel as last year she also qualified to teach student fitness instructors at CIT in Bruce, a long-held ambition. She taught for three terms, but had to stop because the pain was too much.

“I’ve had some students come to see me which is really beautiful because I only taught them for eight weeks,” she said. “You don’t realise the impact you’ve had on people in such a short time.”

The palliative care Ms Gendle is receiving is all about managing that pain.

She remains focused on living as she is dying.

“I know there are women out there, especially on the [online] forums who are trying so desperately and just can’t find acceptance, and when it gets to this part of the journey, when they’re dying, they’re busy trying to find the cure, rather than just enjoying the time,” she said.

“I’ve been off work since October and every day I’ve had people here. People just want to connect with me and it’s been really beautiful. Really beautiful.” She breaks down in tears.

“I didn’t realise how many good friends I’ve had and they’ve all been able to be here with me and they want to be here with me,” she said.

“Last night we had a big party [for the Melbourne Cup] and we drank lots of champagne. So, if you can accept it, you can allow people to come to you and let them say what they want to say and let me say what I want to say to them. It’s been amazing.”

Her husband John de Ridder says he is trying to take each day as it comes and to support his wife as much as he can. He does not want to dwell on the inevitable.

“When I start to think about her not being here, I’m heartbroken,” he said.

Ms Gendle says she is taking comfort, in her own time and in her own way.

“I will miss people, the physical side, but I have a strong belief in the after-life,” she said.

Tanya Gendle

2005

Terri-Louise Frnka Member Story Spotlight

News, spotlight

Spotlight on Our Diagnosed Members: Terri Louise’s Story

Metaplastic Breast Cancer Global Alliance Members’ Stories

Terri-Louise Haugen Franka

February 12, 1979 – September 10, 2018

A note from The Trustees of MpBC Global Alliance, Inc.: It is with great sadness that we announce the passing of Terri-Louise Frnka. Terri was working on this message when she passed, and wanted to make sure that we published her story. The most disturbing lesson here is the numbers diagnosed in the 30 to 39 age range. Women in this range are barely on the radar for Breast Cancer and many are misdiagnosed with mastitis if they are breast feeding. Please honor Terri by reading about this courageous young woman, wife, and mother.

We all think we know about breast cancer awareness until it happens to us. When you have breast cancer you learn soo much that isn’t vocalised. For example before I just assumed it was under one umbrella. Little did I know there was triple positive, triple negative, ER/PR+ Her2-, ER/PR- Her2+ and whatever other combinations. Of course you never see that in the ads during breast cancer month.

We have the pink ribbon campaign, however there is no real true awareness brought to the table. It’s all pink washing. Research is sooo desperately needed. Women and men both can get breast cancer. However you don’t see that during the month of October. Im not writing this to shame the pink washing campaigns exactly. But I feel the need to truly raise awareness on the cold reality of breast cancer.

My name is Terri-Louise, I was diagnosed October 6, 2016 with invasive ducal carcinoma. While originally I was first diagnosed stage 2b, after my surgery that changed to stage 3a.

Before I got diagnosed I was starting to wean my daughter off breast milk. I was having so much trouble with it at that time, when I first found the lump I assumed it was mastitis. Because surely it wasn’t cancer because I was breastfeeding there was no way I could have breast cancer right? Wrong, one of the lies women are told to shame them into breastfeeding.

Breast cancer can happen to ANYONE at any age or any gender. It doesn’t discriminate at all. You could be transgender, male or female. It simply doesn’t care. It just happens. While breastfeeding or being a male can lower your chance it still can happen.

My daughter was almost eleven months old when I originally found the lump. I blew it off, not only that the nurse I spoke to when I asked if there was something more I could do if it was mastitis. Her response was suck it up and massage it harder. Of course she felt like shit after she found out I had cancer. I also had to fight to get my mammogram, thankfully I didn’t have to go in first to get it like they wanted me to.

Long story short I started chemo October 17th on my youngest sisters birthday, I had four rounds of A/C chemo aka the red devil as we call it. I had it every two weeks, after that I had twelve rounds of taxol every week. While I waited a month my tumour grew rapidly. After I had surgery on April 17th, I learned I had a very very rare type of breast cancer. Called Metaplastic breast cancer, only less than 1% of all the diagnosed breast cancers turn out to be Metaplastic. And typically they are triple negative, but not me I was ER/PR+, so I was even more rare! Hooray for me!

I then had radiation let me tell you I rather do chemo then radiation any day of the week. Why you ask? I was burnt pretty badly my skin was destroyed. Imagine being burnt badly and ripping that skin off and getting burnt again. And then repeat that 3 more times. So yeah radiation suuuucked. Not to mention because of how badly I was burnt, I lost my expander. The skin was too thin and there was no saving it after getting cellulitis twice.

I lost my expander on December 4th, after previously being in immense pain. If they could bottle that pain up I’m almost positive if someone wanted to torture someone that was the way to go. Try to imagine all the different types of pain all at once. It burned, throbbed, stabbing, twisting and whatever type of pain. I was miserable. Everyone wanted to blame the other. Only doctor I couldn’t get into was my plastic surgeon because of the front desk lady she was he’s completely booked. I finally caved and went to the ER and he was called. I had an appointment the next day to see him. He was yeah it needs to be removed like yesterday. In my head I was no shot Sherlock.

Here I thought I was still in remission twelve days after surgery I had my CT Scan. The scan was typical routine scan. We didn’t expect the dreaded news I received, it seemed as if my cancer had indeed returned. Not the news I had wanted to hear six days before Christmas. Merry Christmas your cancer has returned to your lungs and sternum. They scheduled a biopsy of my lung, the weekend before my biopsy I felt ANOTHER lump. My thoughts were fuck. It literally was right before my biopsy. I called asked for them to biopsy my lymph node too. I got two biopsy’s that day.

So a week later Jan 9th I was informed that my cancer indeed had returned and now I was stage 4. Since I had my hysterectomy on Sept 14th, my cancer now was Triple Negative, but still was Metaplastic, hooray for me!! Not. I was also told after my husband and I asked, worse case I had 6 months to a year. I don’t know if that was with treatment or if that was with out. But my doctor said there is a lot of things they can try to prolong my life if they can. We just gotta find what works for me. The DAE trial/regiment, has a 40% success rate.

So let me explain something more about Metaplastic breast cancer, again it is really rare less than 1% of women have it. So far as of now we don’t know of any men that have it. The thing is the cells in metaplastic aren’t your a typical breastfeeding cancer cells. Depending on the type of metaplastic breast cancer you have it could have cells you see in lung cancer, or skin cancer. The tumour is always misshaped. My first tumour looked like a jelly bean at first then turned into a pyramid. Not only that it grows rapidly and a lot of the time is chemo resistant. Both times I did chemo my tumour barely responded.

I started chemo this time on Jan 18th and had three rounds of the DAE regiment. Not long after I started I felt a pimple on my head, it was near the end of Jan. I thought it was a pimple or ingrown hair. But it started to grow, around the second round of chemo it had grown more. So they biopsies it, and yet again cancer same type. sighs I finally got it removed on March 8th. It had grown from the size of a pimple from the end of January, to two and half inches on March 8th. It was very rapid. I was taken off the DAE drug regiment on April 3rd. The treatment wasn’t working. So here I am scared to death because the DAE trial isn’t working.

At this point I’m scared for my little girl, my oncologist made an appointment to see a drug trial doctor. I don’t know what trials they have for me. I’m trying to remain positive. Which I’ve been trying to do this whole time since day one. My little girl needs her mama. It’s why I made my Facebook page.

So I met with the doctor, he suggests the DART trial which is in phase two I believe. It’s Immunotherapy if two drugs, and much to my relief I actually get the drugs. I was scared it would be a blind study. April 19th I started the trial, I get one drug every two weeks and the other every six weeks.

So far some days the tumour in my armpit I swear it’s shrinking while other days I swear it’s growing. All I know is I’m fighting for my life and hoping each day I live long enough to see my little girl graduate. High school and get married. Those are my goals. If I live long enough for her to remember me and how much I love her.