Remembering Joani Gudeman (1964-2014)

July 27, 2014
Joani was a wonderful advocate; she's shown here participating in a 2013 video

Joani was a wonderful advocate; she’s shown here participating in a 2013 video

We are sorry to share that our friend and fellow board member Joani Gudeman died Friday, July 25, 2014 at age 50.

 

Joani told her story as the one of the patient introducers at MBCN’s 2013 conference in Houston. “I’m Joani,” she said. “I’m a wife, mother of two teenage boys, a dog lover, mystery reader, a vegetarian, trained listener, board member of MBCN and a person with metastatic breast cancer.”

 

In those few sentences, Joani set out her priorities: family first and cancer last. It is also telling that, with typical modesty, Joani referred to herself as a trained listener. Until recently, Joani was a practicing psychotherapist.

 

Originally from the Northeast, Joani came to the Midwest to attend Lawrence University in Wisconsin. From there, she went on to Chicago to attend the School of Social Service Administration at the University of Chicago and the Illinois Institute of Professional Psychology.

 

Although her official capacity with MBCN was Chair of Outreach and Volunteers, she also served in an unofficial capacity as a diplomat, consensus builder and in-house counselor. She patiently assessed and addressed the issue at hand. If the solution meant extra work for her—such as painstakingly reviewing and revising a lengthy and technical patient publication, she neither complained nor sought the accolades she deserved. She just did it.

 

“Our work together has helped me in so many ways,” Joani told us a few weeks ago. “Not only have I learned so much from each of your incredible talents and skills, I have been touched by your passion, love and commitment.  Working with you all gave me purpose, provided needed distraction and pushed me to expand myself in new ways.”

 

Joani touched us all in so many ways. In one of my last email exchanges with her, I told Joani I was thinking of her as I wrestled with some outreach tasks she previously handled. As I dealt with one particularly challenging call, I had to contain my impatience. I told Joani I needed a WWJD bracelet: What Would Joani Do?

 

That is a question we will be asking ourselves often in the weeks and months to come. Our heartfelt condolences to David, Jacob and Samuel and all of Joani’s family and friends.

 

–Katherine O’Brien
Secretary
MBCN

 

Interment will be private. A public service celebrating Joani’s  life will be held shortly. We will  share the information when we receive it.


What makes a cancer a cancer? The hallmarks of cancer.

July 18, 2014

MBCNbuzz:

Good overview of cancer basics.

Originally posted on Antisense Science:

Cancer – the ‘C word’ in far too many of our lives. Wherever you are, it’s unlikely you’ll be able to avoid the news reports and personal stories about people fighting against cancer. Understanding how the disease occurs and how it takes hold over the body is key for developing effective new treatments and managing patients in the clinic, and so huge amounts of money are invested in cancer research every year. But what actually is cancer and how does it develop?

Many people often think of cancer as unwanted growth – which is exactly right. Cancer is a disease of cell growth and division, where cells continue to grow and divide in an uncontrolled and indefinite manner. In solid tumours, the growing mass can be seen or felt as lumps and masses, whereas with non-solid cancers like leukaemia the cells aren’t in a single mass but are instead spread…

View original 1,099 more words


Sheila’s Journey to Fight Metastasized Breast Cancer

July 2, 2014

Editor’s note: We are pleased to post this guest blog by Sheila Ghosh from the Netherlands, who wrote in response to an email from MBCN president, Shirley Mertz.  Sheila reminds us that mbc affects women around the world. We tend to get US-centric, but Sheila’s experience resonates with all of us. You can follow her blog at http://sheilaghosh.com/ or on twitter: @sheilaghosh.


Dear Shirley,
Thank you so much for your e-mail asking for people who wish to share their story. I would very much like to share my story with others.

ImageFirst of all, I am living in Europe, in The Netherlands to be exact. I went to college in the US and lived in the US for 11 years, although I’m a Dutch citizen.

I don’t know if you would want a story from Europe, but I follow MBCN and would like to have a chapter or network like MBCN here in Europe.

My story is one of hope and my recovery feels like a miracle to me.
I was diagnosed with stage 4 cancer in July of 2012, at the first diagnosis, when I was 42. There was no history of breast cancer in my family. Also, I didn’t feel anything in my breast because I was checking for lumps, whereas this tumor felt like my breast bone (upper part of right breast.)

The metastases were spread all throughout my liver, so that it was one and a half times as big, like a deflated soccer ball. My liver was in such bad shape that hormone treatment wasn’t an option because it takes 6 to 8 weeks to start working and my liver was barely working (bilirubin at 50). After the first 10 weeks of weekly chemo’s (AC) didn’t work well enough, I got very sick from infections due to neutropenia. I could not eat or talk because of the mucositis and stomatitis. Meanwhile, my oncologist thought the cancer was growing and didn’t have much hope. I did not think I would live till Christmas of 2012.

Fortunately, I was transferred in October to the National Cancer hospital where I was given Mitomycin-C locally in the liver. Two treatments and two months later the results were so good that much of the cancer in the liver was replaced by scar tissue. The liver stabilized and I could eat and talk again. From January 2013 I took Xeloda which reduced the cancer in the breast and since May 2013 I’ve been on hormone therapy (Letrozole). I’ve been in menopause due to the cancer, not the chemo.

I’ve gone back to work – I work as a IT architect contracting for the government – and have been getting back in shape by exercising and eating healthy. Most of the time I feel great. I look good again and can function almost as before. My message to others is that there is life after hearing you have metastatic cancer, and with the right treatment and frame of mind and support more is possible than you would expect. I’m not cured – the cancer is there but inactive – so as long as the hormone therapy works I’m fine.

I also am part of a social network of other women with mets here, because there are very few resources for people like us. What bothers me especially is that patients with mets often don’t seem to count. The images and fundraising campaigns in the media suggest that either you can be cured (stages 1-3) or else you face imminent death (stage 4) and this frightens people. Research results and treatments for metastasized breast cancer are not easy to find here and there’s a big gap in knowledge between oncologists and hospitals. The many regulations slow down research projects and make the drugs exorbitantly expensive. Still, I am extremely grateful for this second chance I’ve been given and it has made me value my husband, family, nature, friends and my life so much more, I’ve taken up windsurfing and writing and work less.

That’s my story. I’ve been writing about my experiences at http://www.sheilaghosh.com in case you’re interested. This is a public site so feel free to use anything that you find interesting, with a citation/ reference. I hope you don’t mind but I am publishing this letter on my blog so others can follow. If you do mind, let me know and I will remove it.

Please let me know if I can help in any way.

Kind regards,
Sheila Ghosh
The Netherlands

Energy and persistence conquer all things

Editor’s Note: If you enjoyed Sheila’s story, please consider sharing yours. Email your story (500 to 800 words, max) to us at mbcn@mbcn.org. Include your name and phone number–and don’t forget the photo!


Andrea: My Support Network is a Blessing

June 24, 2014
Andrea
Andrea relies on TEAMSOSA to help her deal with her metastatic breast cancer diagnosis. In April 2014, she started this blog, which she updates on Sundays.
Read on to learn more about her story.
My name is Andrea and I am 37 years old. After I noticed significant breast pain, I had a mammogram and biopsy, and I was diagnosed with Invasive Lobular Carcinoma, that metastasized to lymph nodes, in late February 2014.
My doctor recommended a double mastectomy but then a PET scan revealed metastasis to my vertebrae, belly, sternum, and clavicle, as well as additional lymph nodes. Rather than surgery, I began chemotherapy in April. I have a significant family history and found to be a BRCA1+ carrier.

AN EXTENSIVE SUPPORT NETWORK

Since I do not live close to my family, I decided early that I would have to rely on my friends and “work family.” I have been blessed to have an extensive support network through my job. Working for 15 years in the same department has given me opportunity to experience growth as a person and a professional, and grow with my work family as they establish their lives and careers. These wonderful people are my primary support system and have organized fundraisers as TEAMSOSA.

MY CALIFORNIA ROOTS
I am originally from California’s Central Valley, and came to the Bay Area to attend college and start a career in local law enforcement and the Courts. During the past 15 years, I have obtained my Masters Degree in Criminal Justice while working full-time in a high stress, high demand workplace. I have established long-term personal relationships with coworkers who have supported me as I progressed in my career. Over time, we have become family, and watched each other experience personal joy and hardship. As a member of that community, my coworkers have stepped up with T-shirt fundraisers and luncheons. TEAMSOSA is my support community here, and they help with everything from chemotherapy appointments, to daily visits, or food runs.
MY SUPPORT SYSTEM
I am single, and have no children, hence the need for a support system. Right after the diagnosis, I decided I was not doing this alone. I communicated with close friends and family about the new journey, and nearly everyone has been overwhelmingly supportive. I sent an email to my workplace announcing my leave of absence and support has come from people I never expected it from. I was also placed in contact with retirees and other breast cancer survivors, and learned quickly how this disease has touched so many lives.
MY FAMILY HISTORY
There is an extensive cancer history on mother’s side including ovarian cancer, breast cancer, colon cancer, and lymphoma. I have two sisters and two nieces, who are aware of my diagnosis and what to inform their doctors for their health. Also, my mother was treated and diagnosed for breast cancer approximately 20 years ago. She is a retired registered nurse, and cancer-free.  My father has battled heart disease all of my life.  My parents have been supportive with frequent visits and regular check-ins, and wear their TEAMSOSA shirts with pride.
CANCER SUPPORT COMMUNITY
I participate in activities at the Cancer Support Community; my doctor’s office provided me with their information. Their facility and staff are courteous, professional, and empathetic. The Center is welcoming, and there are so many stories to be told within their walls. I attend a weekly support group, which has been very helpful in answering questions, as well as observing those progressing to wellness after recovery. I have met two other women who are my age, and also met other women who have gone through treatment for breast cancer. The resources there include exercise, creative activities, and a library, among many others.
MY TREATMENT
I was diagnosed fairly recently– in February 2014. I am undergoing chemotherapy as part of neoadjuvant therapy. My treatment plan includes surgery and radiation. I have had four (of six) cycles of Taxotere and Cytoxan.  The side effects have been rough, but manageable, through medication and rest. Mainly, I have experienced heartburn, hives, and fatigue. In between treatments, I try to get out of the house once a day, whether its to do an errand, or attend the CSC. I attend various sporting events with friends, including SF Giants baseball games (I’m a huge fan). My friends have been very good about inviting me to lunch or to go for walks, which reminds me daily that I am not alone.
TeamSosaWHAT PEOPLE SHOULD KNOW ABOUT BREAST CANCER
When I was first diagnosed, I took the time to individually tell friends and family. Each person provided me with an emotional response, as well as hope. No one said this wasn’t treatable. Everyone said it was going to be rough. One person said “it would be a bad year,” and another reminded me “it was not a brain transplant.” Along with some other sage advice, I was grateful to learn I had the support of so many who were aware this disease was TREATABLE.
While most women, through early detection or genetic testing, have treatment options that eventually end, I am aware Metastatic Breast Cancer requires long-term treatment. I am aware of the options I may no longer have because of the progression and behavior of the disease. However, I will continue to do what I can, until I cannot.
Andrea

 

Editor’s Note: If you enjoyed Andrea’s story, please consider sharing yours. Email your story (500 to 800 words, max) to us at mbcn@mbcn.org. Include your name and phone number–and don’t forget the photo!


Metastatic Breast Cancer at ASCO 2014: We Are There

May 31, 2014

Follow ASCO live via TwitterShirley Mertz, Ginny Knackmuhs and I are am among the 25,000 attendees at the 2014 American Society of Clinical Oncology (ASCO) Annual Meeting this weekend at McCormick Place in Chicago. We are there as a patient advocates with the Metastatic Breast Cancer Network.

ASCO isn’t just about breast cancer. There are sessions on gastrointestinal cancer, genitourinary cancer, head and neck cancer, lung cancer, leukemia, lymphoma and myeloma, melanoma and more. If oncologists put together Lolapalooza, this is what it would look like.

Prior to attending ASCO, I never gave any thought to the group’s name. I thought it was something between a service-type organization (like the American Legion) or an elite group of super smart people (like the National Honor Society). But in learning more about ASCO’s 50-year history, I have come to appreciate just how important the “Clinical” part of its name is.  As the the ASCO Daily News explains, prior to ASCO’s formation, “professional medical organizations dealing with cancer were primarily focused on laboratory research, not on the urgent clinical needs and concerns of patients.”

In 1964, seven physicians (Ansfield, Bisel, Freckman, Goudsmit, Talley, Wilson and Wright) had a luncheon meeting at Chicago’s Edgewater Beach Hotel.  As noted here, the minutes from this first meeting indicate they were united by “their common concern for the patient with cancer.” At a time when most cancer-focused organizations concentrated resources on pathology and research, the seven founding members became early and at times singular champions for the need to place more emphasis on clinical considerations and the care of patients with cancer.

Given ASCO’s patient-centric roots, it stands to reason the group would have a strong commitment to patient advocacy and it certainly does. There are special advocate review sessions on key presentations and opportunities to meet ASCO officers. ASCO Connection, the society’s networking site,  welcomes patient advocate comments/participation, too.

Shirley Mertz, one of my role models, often talks about the power of  patient advocacy. She says that metastatic breast cancer patients who join together together with a focused message can improve outcomes in the clinic. At ASCO, we  patients are right there with our clinicians.

 

Note that on Thursday, June 12, SHARE will offer a free ASCO highlights  webinar on key metastatic breast cancer developments with Dr. Don Dizon.

Register here: https://attendee.gotowebinar.com/regi…/4695204179612817921

 


Kristin: New Mom Wants to Reach Others

May 29, 2014
Kristin and Brian

Kristin and Brian

“I wanted to share my story in hopes of reaching others, especially young women like myself, who are dealing with this diagnosis,” writes Kristin, a 32-year-old mom who lives in Davis, CA.

 

Here is her story:

 

My name is Kristin Todd and I am 32-years YOUNG. In July 2013, I was 34 weeks pregnant with our first child (a boy!). My husband, Brian, had pointed out a lump in my breast to me and I brought it to the attention of an OB during one of my routine pregnancy checks.

 

This first doctor essentially blew off my concerns, telling me I was too young for breast cancer and regardless, they wouldn’t do anything about it until after the baby was born. Wrong on BOTH counts. Being in the medical field myself (I am a nurse practitioner), I didn’t accept this answer. I brought the lump to the attention of my regular OB-GYN who shared my concern and got me in right away for an ultrasound and biopsy. My husband and I were stunned into silence when we received the news following a wonderful “Babymoon” to Santa Barbara the previous weekend.

 

Logan1From that point forward, it was a mad dash to see doctors and make decisions quickly both for myself and for our unborn child. I went ahead and at 36 weeks pregnant, I had a lumpectomy and lymph node dissection. The day after my surgery, I was readmitted to the hospital with a kidney stone. A week following my surgery, at 37 weeks, I was induced and gave birth to our beautiful baby boy, Logan Kristopher.

 

Three days after giving birth, I had my port placed for chemotherapy and had my first PET scan which delivered unbelievably devastating news…liver and bone metastases. I was crushed and was at a loss for how to feel. Here I was supposed to be enjoying my first few days of motherhood and instead I was given more bad news.

 

A week after my son was born, I began chemotherapy. (I am ER/PR+ and HER2 -.) Since then, I have had 6 rounds of A/C chemotherapy and my PET scans since have shown great results. My liver mets have resolved and the majority of my skeletal mets have as well.

 

People have asked me how I coped with having a newborn and doing my first chemo treatments. I had amazing family support.  My my dad is a family physician in Florida and he has been a huge help when it comes to getting the best information and  care out there. Without him, I would not have the benefit of several expert opinions whenever there is a decision to be made.

My mother retired from her job in Georgia and moved out to California right away when I was diagnosed and my mother-in-law (also from Georgia) dropped everything to come help. So between the 2 moms and my husband, they took all of the night feedings so I could get a lot of sleep. My sister, cousin, and friends also took turns flying out from the southeast to help in any way they could.

 

I’m slowly getting use to my “new reality” as I like to call it. Life with Stage IV breast cancer is a roller coaster. My family and I live for the good news and support each other with any bit of not-so-good news.

 

But overall, my son is the absolute light of my life and the best motivation for doing everything I can to stay well and healthy for him. I so believe in the power of the mind and I have so much love and support around me along with my own positive outlook that I know I can get through most anything.

 

Thanks for letting me share my story. If it gives someone else hope, that’s all I can ask for.

 

 

Kristin Todd

 

pic2Editor’s Note: Kristin, who works primarily with cardiac patients is currently back at work full time. She’s been able to connect with other young moms dealing with metastatic breast cancer via a Facebook group: “Thriving with Advanced Metastatic Stage 4 Breast Cancer.” She learned of the Metastatic Breast Cancer Network via a Google search. We’re glad she found us! If you enjoyed Kristin’s story, please consider sharing yours.

Email your story (500 words maximum) to us at mbcn@mbcn.org. Include your name and phone number–and don’t forget the photo!


Where’s my clinical trial?

May 17, 2014

by Ginny Knackmuhs, VP of MBCN

I’m one of the lucky ones, I know.

Although I was diagnosed with metastatic triple negative breast cancer 5 years ago, I have been on the same treatment regimen since then. No progression, just blessed stability. I hesitate to write that sentence or say it out loud—afraid I’ll jinx my good fortune, always mindful of the next scan around the corner, when everything can change in an instant.

Metastatic breast cancer (MBC), also sometimes called advanced breast cancer or Stage IV disease, is incurable, but still treatable. Oncologists like to say it is a chronic disease, but with an average life expectancy of 2.5 to 3 years, it certainly isn’t chronic yet. Give us 10 or 20 years of stable treatment and quality of life and we’ll be happy to call it chronic.

ImageNext week I’m going to ASCO in Chicago, the annual meeting of the American Society of Clinical Oncologists. I’ve reviewed the agenda. Interesting and promising research will be reported on, not just in breast cancer but across the cancer disease spectrum.

One thing I didn’t find? Research papers about me, about those of us who are stable or have been NED (no evidence of disease) for years. We are defying statistics and maintaining that fragile, illusive state of tumor dormancy. Isn’t any researcher interested in running my genomic profile, sampling my blood and tumor tissue, establishing a baseline of a mets patient who is doing well? Isn’t it worth looking at patterns that might emerge from studying all of us at this stage of our disease? Why are we among the enviable few of patients living with metastatic disease? Not to collect our data seems like a lost opportunity, a cache of valuable information that should be captured.

Dr. Susan Love in speaking about her research foundation, often cites an anecdote about aviation experts in World War II. They were studying downed planes until someone suggested this: “Why not look at the planes that stayed in the air? ”

This is the 50th anniversary of ASCO and visiting cancerprogress.net reveals milestones in cancer research and treatment. Yet, there is still much room for improvement. 40,000 women and men die every year from breast cancer—metastatic breast cancer. That number is essentially unchanged in the last decade. 110 people each day, every day, a daily catastrophe that doesn’t make headlines. 110 people dying every day; 770 dying every week; over 3000 every month– from the cancer, which is still viewed as one of the ‘better’ cancers to get. We can and must do better. Even Nancy Brinker tweeted this week: “So much more work to do together to end MBC.”

So, ASCO researchers, I am ready and willing. Study me. Collect my data. I know there are others out there in my situation. Last month I spoke at a program at NYU and a few people in the audience spoke up and said they had been NED for years. Sign us up, ASCO. We’re ready to help.

I’m not a researcher or clinician, just a patient advocate, a woman living with metastatic breast cancer, who is attending the ASCO 2014 meeting and will take every opportunity to ask: Where’s my clinical trial?


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