2019 SABCS San Antonio Breast Cancer Symposium

2019 SABCS San Antonio Breast Cancer Symposium

2019 SABCS : Metaplastic Breast Cancer Global Alliance

San Antonio, TX : December 10-14, 2019

Meeting for San Antonia Breast Cancer Symposium

San Antonio, TX : December 10-14,  2019

The Metaplastic Breast Cancer Global Alliance was accepted to exhibit at our first SABCS Symposium. We were well represented and maintained a busy booth. Many professionals are interested in learning more about us and Metaplastic breast cancer. Every conference we attend offers us valuable time to collaborate and share information. Jim Harvey Sy met an oncologist from Saudi Arabia that successfully treated a metaplastic patient that had a complete response with this immunotherapy protocol : https://pubmed.ncbi.nlm.nih.gov/31690713/
We were able to share our Diagnosed Member Map at our Booth from a LapTop and some Group Member Polls that we felt were valuable.
MpBC advocates supporting our busy booth:

Our handouts:

Breakfast with the Researchers at Marriott Riverwalk Cactus Flower Resturant:  

Scenes from our booth:  

We met Sophia with Ciitizen which led to our recently launched MpBC Data Collection Project  https://www.ciitizen.com/metaplasticbc/

Laura Houmes Member Story Spotlight

Laura Houmes Member Story Spotlight

Spotlight on Our Diagnosed Members: Laura’s Story

Metaplastic Breast Cancer Global Alliance Members’ Stories

My Metastatic, Metaplastic Breast Cancer Story
Laura A. Houmes
Diagnosed 2012 age 47
Wife, Mother of 3

My breast cancer story started early March 2012 when I rolled over in the middle of a night and experienced pain in my right breast. I became more alarmed when I felt the firm lump. The following morning my GYN Nurse Practitioner sent me to have an ultrasound. The ultrasound was followed up with a biopsy. These original biopsy results lead me to the Sarcoma Clinic at Moffitt Cancer Center in Tampa, Florida. There, I was connected with the combined efforts of the most knowledgeable experts in the field of surgical oncology for sarcomas and breast cancers. Dr. Ricardo Gonzalez (Sarcoma) and Dr. John Kiluk (Breast) assisted in my surgical lumpectomy that resulted in pathological findings confirming Carcinosarcoma of the breast.

Moffitt Cancer Center is located on the west coast of Florida and was a taxing 3 hour drive for appointments. I was eventually connected with a local oncologist Dr. Lisa Duhaime for my future treatment planning. Like most others diagnosed with Metaplastic Breast Cancer, treatment plans parallel Triple Negative Beast Cancer protocols. I have attached my timeline of treatments that I underwent and prefer not to repeat here.

What I should focus on is how fortunate I was to have my treatment plans from the most diligent oncologists that I was able to connect with in Florida. These experts mentioned above valued follow-up scanning and supported monitoring disease early enough to allow to swiftly shift treatment options. We watched a 3mm left lung “spot” on my January 2014 CT scan double in size by February 2014.

Due to the growing lung nodule and a questionable 2nd area of concern in the left lung a biopsy became more necessary. Lung biopsies are scary and mine resulted in a collapsed left lung. I will never forget that excruciating painful experience when the radiologist stabbed the tube through my left chest directing it into my left lung. Pathology from the biopsy confirmed metastatic disease and in April of 2014 I had a lung resection of the growing nodule and the questionable spot that ended up benign.

Foundation One advanced genomic tumor testing identified alterations from my lung resection that led me to clinical trials (precision medicine), targeting these alterations. Stage 1 Clinical Trials now became my reality. I’m now a guinea pig! The Initial trial, LDE225 and BKM120 lasted almost 2 months before my elevated liver enzymes resulted in me being removed from this trial. The reality of my situation was beginning to hit hard and place a toll on me. I was not ready to become a victim and die from cancer. I had so much to live for and my family needs me. This was the driving force that guided me to fight mode. I needed to seek out support and options from the largest most respected research cancer facility, MD Anderson in Houston, Texas.

My initial appointment was with Dr. Stacy Moulder in the Breast Cancer Clinic and my PIK3CA mutation qualified me for the DAE clinical trial at MDA. Dr. Filip Janku in the Department of Investigational Cancer Therapeutics became my treating research oncologist. Details of the 2 years plus of traveling to Houston from Central Florida for 18 rounds of Doxil, Avastin and Afinitor are documented on my attached timeline. It was quite a rollercoaster ride and I am forever grateful to be here today to tell my story.

I owe a debt of gratitude to the oncology experts mentioned above that helped with my treatments. Taking charge and becoming my own best advocate was also vital. Metaplastic Breast Cancer is an aggressive beast and those diagnosed with this disease need to move quickly to treatments. Please visit: https://www.mpbcalliance.org/information/14-ways-to-advocate-for-yourself-as-a-metaplastic-breast-cancer-patient/

Follow up scanning is controversial and in my personal situation monitoring disease is why I am on maintenance precision medicine-targeted therapy and enjoying no evidence of disease today.

These days I enjoy the best most supportive community of family and friends anyone could wish to have in their life. Since my initial diagnosis I have watched my oldest son graduate as a CPA and get married. My daughter (twin B) became a Physician Assistant. Today she is also married and now is expecting her first child. As I am writing this, I am with my daughter 35 weeks along and so thankful to be here to support her at her time of need. My future focuses on helping my son (twin A) find supported employment.

We all experience challenges in life. I hope my story is a continued success story for MANY years to come. The Afinitor does take a toll on my energy level. I will continue to balance this insult with healthy habits and nutrition. Finding enjoyment as much as possible and giving back to those who need support helps me stay engaged in pay it forward.

In 2016/2017 Susan D. Oran and I Incorporated and The MpBC Global Alliance, Inc. officially became a nonprofit organization. Our combined efforts are bringing more attention to this rare and aggressive breast cancer. We are focused on bringing more attention and research to oncology experts. For more information please visit us at www.mpbcalliance.org

Laura Houmes
Metaplastic Breast Cancer
Timeline of Treatments and Notes

4/2012 Diagnosed High Grade Breast Sarcoma

5/2012 Right breast lumpectomy

5/2012 Re-diagnosed Carcinosarcoma – 3cm mass, nodes clear

7/2012 Local Oncologist AC x 4 – with Neulasta shots

9/2012 Taxol x 4 – with Neulasta shots

12/2012 Radiation 35 days with 5 boosters

1/2014 Suspicious left lung mets

2/2014 Ct scans shows nodule has doubled

4/2014 Lung Resection of 1 benign nodule and 1- 2.5cm mass with clear margins

6/2014 New left lobe 6mm nodular foci

Treatment now focused on moving towards clinical trials at Moffitt Tampa

6/2014 Nodule now 1cm and several sub-centimeter non-calcified nodules also present

8/2014 No tumor growth but trial suspended due to elevated liver levels

9/2014 Moved treatments to MDA Houston – DAE trial

10/13/14 #1 DAE IV Doxil, Avastin and 7.5mg Afinitor pill orally daily

11/03/14 #2 DAE IV Doxil, Avastin and ongoing Afinitor daily

11/24/14 CT scan shows 40% decrease in lung nodules but side effects from treatment hitting hard so, treatment break and possible gall-bladder attacks—NO Chemo— holding due to mouth sores

12/4/14 NO Chemo– holding due to Pneumonia (flew into Houston went right to ER at MDA)

12/11/14 NO Chemo– holding due to Liver #’s

12/22/14 Eyebrows pretty much gone… have rest of hair! (Weird!)

***ongoing attacks which I considered to be gallbladder attacks BUT the experts insisted it to be my liver….?????….. Continuous ER visits and tests with no explanation as to painful attacks***

***noticed Eyelashes falling out***

1/8/15 #3 DAE Chemo Doxil 25mg (Decreased from 30mg), Avastin 15mg (No Decrease) Afinitor 5mg (Decreased from 7.5MG)

***other noticable side effects from treatment- slight red puffy eyes, headaches, dry mouth, slight nose bleeds and high blood pressure***

1/14/2015 ***Eyelashes mostly gone*** Started Valtrex for mouthsores (my opinion-did not help)

1/29/2015 #4 DAE ***eyebrows returning***

2/19/2015 #5 DAE ***ongoing questionable gallbladder attacks and hand/foot syndrome which I did find Biotin Emulsion to help***

3/12/2015 NO Chemo due to low WBC and mouth sores, Switched BP meds and anxiety concerns.

3/26/15 #6 DAE ***still ongoing questionable gallbladder attacks***

4/16/2015 #7 DAE ***Nodules still shrinking

4/30/2015 ***bladder infections beginning*** started taking cranberry pills

5/7/2015 #8 DAE met with Thoracic Surgeon to see if he could remove remaining lung spots

5/27/2015 No Chemo–***due to massive Gallbladder attack and spent approximately a week at MDA until they realized I was having gallbladder attacks- ERCP verified***

6/8/2015 Gallbladder Removed ***OFF ALL MEDS including chemo’s***

7/9/2015 #9 DAE ***ongoing UTI’s- worsening***

7/30/2015 #10 DAE

8/2015 Prepping for lung surgery ***OFF ALL MEDS including chemo’s***

9/16/2015 ***Lung surgery cancelled due to surgeons refusal to do surgery- not enough cancer left***

9/17/2015 #11 DAE ***ongoing UTI’s***

10/8/2015 #12 DAE

10/29/2015 #13 DAE

11/19/2015 #14 DAE

12/10/2015 #15 DAE ***ongoing UTI’s***

1/7/2016 #16 DAE

1/28/2016 #17 DAE

2/18/2016 #18 DAE

***Did 18 rounds of IV Doxil and IV Avastin with Afinitor daily

***Lost over 30 pounds

***Did not take Neulasta shots through DAE to avoid more side effects. Started to exercise (fast walking) before blood draws. Exercise promotes/supports an increase in white blood counts.

***Ct scans often to monitor small nodules that keep appearing and disappearing

10/2017 ***Afinitor dosage decreased to 2.5 due to liver numbers not normalizing

12/2017 ***Scans finally moved out to every 6 months

***Bloodwork every 3 months

4/2020 Still Here!!!

Laura Houmes

2012, Carcinosarcoma

Laura Houmes co founder of Metaplastic Breast Cancer Global Alliance
Laura Houmes co founder of Metaplastic Breast Cancer Global Alliance
Laura Houmes co founder of Metaplastic Breast Cancer Global Alliance
Laura Houmes co founder of Metaplastic Breast Cancer Global Alliance
Laura Houmes co founder of Metaplastic Breast Cancer Global Alliance

37th Annual Miami Breast Cancer Conference March 2020

37th Annual Miami Breast Cancer Conference March 2020

Update on the 37th Annual Miami Breast Cancer Conference March 2020

March 5-8, 2020

Program Chair- Patrick Borgen, MD (Maimonides)

Program Co-Chairs- Aness Chagpar MD, MSc, MPH, MA, MBA, FACS, FRSC(C) (Yale)

Hope Rugo, MD, FASCO (UCSF)

Debu Tripathy, MD (MD Anderson)

Scientific Keynote Speaker- Scott Gottlieb, MD (FDA)

I was able to represent the MpBC Global Alliance, Inc. this past March 5th -8th 2020 for the Miami Breast Cancer Conference. Before she passed away this past January, Patti Hennessey the late wife of Mike Hennessey CEO & President of MJH Life Sciences arranged for me to attend. Patti was originally diagnosed in 2011 with ovarian cancer and was also BRCA+. She joined our group in 2018 after being diagnosed with Metaplastic Breast Cancer. She fought a hard, long battle. She managed to beat all the odds until metastatic disease was found in her brain this past January. While she still carried on with a positive outlook she passed away January 28th. I remember her expressing her joy with the birth of her grandchildren. It was a shock to Susan Oran and I as we communicated often with her and she was our go-to-expert in regards to the BRCA mutation.

I was privileged to attend the Patient Keynote Address done by an energetic young metastatic Nalie Agustin and was blown away by her documented story. This year and forward the Keynote Address is renamed “The Patti Hennessy Keynote Address”. Her son, Mike Hennessey Jr. did a touching tribute. You can visit her story here: https://www.mpbcalliance.org/news/patti-member-story-spotlight/

My takeaways: Metaplastic Breast Cancer is not on the “general” research radar. Triple Negative Breast Cancer is and there were sessions in regards to TNBC. These conference days begin at 6:30am and can go into the evenings. I am learning to navigate my way through the schedule and pick and choose which sessions are of most value for our rare group. I do not have a medical background but tend to understand and pick up on details that may help keep us up to date on treatment options.

What I have learned? This research takes a long time! Nothing stands out for me to consider focusing on or report other than Immunotherapy is advancing in combination with other targeted options or chemotherapy. Focus was also placed on identifying biomarkers to benefit from precision medicine.

ASCO and SABCS attract more global experts. MBCC, for now is a bit more intimate and relaxed, which allows personal interaction with the most knowledgeable experts studying and treating the most difficult breast cancer cases. At First, I was nervous to sit in on “Meet the Facility Case Discussion” sessions but by the second day I relaxed a bit more and listened and learned about difficult cases that treating oncologist are being challenged with.

Due to the Coronavirus some Faculty did not make it in town. Luckily, I was still able to introduce myself and our organization to these top research oncologists: Debu Tripathy (MD Anderson), Patrick Borgen (Maimonides Medical Ctr), Michael Alvarado (UCSF), Adam Brufsky (UPMC), Judy Boughey (Mayo) Fleure Gallant (Miami Med). I was also able to reconnect with Hope Rugo (UCSF).

To date our Metaplastic Breast Cancer Global Alliance, Inc. has been represented at ASCO 2019, SABCS 2019 and now Miami Breast Cancer Conference 2020. We are making headway. This is tough and we have a great team with Susan D. Oran, Stephanie Oran, Casie A. Houmes (PA), Jim Harvey Sy, Mary Anne Baysac (MD), our supports from the Diagnosed Women’s only Group and The Support and Information Group run by Linda Pirkle and our Growing Global Communities. Together we are all “Supporting The Advancement Of Research Into Metaplastic Carcinoma of the Breast”

Our future will be focusing on gathering data with Ciitizen and we recently have been introduced to a dedicated researcher supporting Dr. Stacy Moulder’s efforts affiliated with MD Anderson, Clinton Yam M.D. We are seeing the benefits from his assistance and look forward to his involvement.

-Laura A. Houmes

Claire Innes Member Story Spotlight

Claire Innes Member Story Spotlight

Spotlight on Our Diagnosed Members: Claire’s Story

Metaplastic Breast Cancer Global Alliance Members’ Stories

Hello everyone, We’ve been reading some of the posts about your journeys. It’s been helpful to see stories familiar to us. After being diagnosed with MpBC we’ve found it difficult to find information I can relate to.

I suppose I should tell you about my own up and down experiences. Well in July 2016 I started experiencing “leakage” from both breasts. After ruling out pregnancy, I visited the doctor. My bloods were taken and I was told I had vitamin D deficiency and that my body was just naturally changing with age. At this time I was 40.

Fast Forward to January 2017 and I discovered a lump on my left breast. Again I went to the doctor. I was given a physical examination and told I had a cyst. I was told that I had lumpy boobs and that if the cyst was stil causing discomfort then I should return in 6 weeks during a different stage in my menstruation cycle. After 4 weeks I was back at the doctor. After another physical examination I was told again it was a cyst and once again to return in 6 weeks.

I was, by now, in a fair bit of pain. So back to the doctor I went (March 2017).Although still adamant I had a cyst, because of the pain I was describing I was sent for a mammogram……. as you all will have guessed by now, no it wasn’t a cyst. Ultimately I was diagnosed with stage 3 ER+ invasive ductile BC…..they also discovered a smaller lobular carcinoma on my right breast.

I had chemo from April 2017 to August 2017 (Fec and Docetaxel). Chemo was hell. I contracted sepsis and was neutropenic 3 times🤦….but ultimately got through it. A double lumpectomy followed by 30 rad sessions in Dec 2017 and I was given the all clear!! 🎉🎉

Over the following months after my recovery, my family and I completed various activities to raise funds for the cancer organisations that had helped us. Including hikes, marathons, mountain climbs and in May 2018 , a 100 mile trek through the gorgeous Scottish Highlands that I finished with my brother. Life was there to be lived and I wasn’t holding back .

In January 2019 I started having shooting , stabbing pains from the centre of my chest to my left shoulder. I contacted my cancer team and met with my consultant who oversaw my previous treatments. My last mammo had only been 6 months prior and was found to be normal. With that in mind and after physically examination, he said he thought it could be fluid, caused by the full lymphnode removal I had on the left side…..no such luck….. between a bit of back and forth between lymphedema clinic and my GP, I discovered a lump in the centre of my chest I was given a chest x-ray ( normal) and referred for ultrasound that confirmed a tumor in the centre of my chest. A needle biopsy later and I was told that once again I had cancer.

CT scan later confirmed metastasis to my breast bone and liver. My full diagnosis was metaplastic squamous Breast Cancer. I have been told it’s mostly triple negative but also with a low ER and PR score of 3.
I was also given the devastating news that my cancer can’t be cured and that average data showed I had a life expectancy of 12 to 18 months.

Now I plan on bucking the trend! And want to give myself the best chance at life I can! I want to see my 3 boys (13 year old twins and 10 year old) grow up and marry. I want to grow old with Danny and be happy with. I have so much life in me that I can’t believe this is happening again.

I’ve had my first chemo ( carboplatin) on a 3 week cycle and I’m hoping I have positive response.

The pain from tumor is constant. Ive been prescribed morphine, but that has its own issues 😒.

I’m keen for all the information I can get on my cancer and praying that my treatment is effective.

I try to stay clear of Dr Google and tell Danny to do the same, but he seldom listens 🙄😉

I feel for my family and friends, who have to go through this again with me. I wish they didn’t have to.

Thanks for listening.

Claire Innes

2017, Squamous

American Society of Clinical Oncology ASCO 2019

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


South Carolina -- 4


Georgia -- 8


Alabama -- 2


North Carolina -- 4


Tennessee -- 3


Mexico --




New Mexico -- 4


Arizona -- 3


Utah -- 1


California -- 23


Oregon -- 4


Montana -- 2


South Dakota -- 1


Minnesota -- 4


Iowa -- 5


Illinois -- 14


Wisconsin -- 5


Michigan - 11


New York -- 10


New Jersey -- 8


Pennsylvania -- 10


Maryland -- 5


Washington State -- 3


Virginia -- 8


South Africa -- 1


Costa Rica --


Romania -- 1


Germany -- 3


Netherlands -- 1


New Hampshire -- 1


Kentucky -- 4


Indiana -- 8


Greece - 2


Poland - 1


Ohio-- 5













Connecticut -- 1

Hawaii-- 1

West Virginia-- 1

Maine-- 2


Puerto Rico--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


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!