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Stephen Fry Reveals How a Routine Checkup Lead to Prostate Cancer Discovery

Actor and writer, Stephen Fry, posted a video on his blog today sharing a heartfelt story of how a routine checkup and flu shot lead to the discovery that he had prostate cancer. Since that discovery, he has recently had his prostate removed.

In the video, he tells of thoughts that he wasn’t ‘the sort of person who gets cancer’. He is currently awaiting test results but hopes he is now free of the disease.TV star urges other men to get their prostates checked for the common problem. Check out the video below.

Would you like to know more about prostate cancer? We’ve put together a few resources for you.

Prostate Cancer Foundation

Cancer Treatment Centers of America

American Cancer Society

Mayo Clinic


Would you like to be inspired by cancer warriors in our community? Click here to read our Lyfe Ambassador Jessica Proto’s Lyfestory. Click here to see how Patient Entrepreneur, Dana Donofree, turned her cancer diagnosis into an intimates clothing line that is taking the world by storm!

Inside the Patient Entrepreneurs Mind: Dana Donofree

Having a chronic illness can be challenging, and running your own business can be hard. No matter where you fit on the spectrum, we could all use a little motivation.  Our #InsidethePatientEntrepreneursMind blog series gives you insight and lifehacks on how to stay motivated from some of the most innovative patient entrepreneurs in the world.

Dana Donofree is the Founder, CEO and Head Designer of AnaOno, a lingerie & loungewear line created specifically for those who’ve been affected by breast cancer and its related surgeries.

Dana sat down with Lyfebulb to tell us how she started the collection after being diagnosed with Infiltrative Ductal Carcinoma. Dana had a bilateral mastectomy with implant reconstruction. She was underwhelmed by the bra options for women in this category and devoted her recovery and career to creating a line that was functional and fashionable.

What motivated you to create a business addressing a disease you know so well?
Being a patient isn’t easy. But it’s not because of the doctor appointments, or the life disruption, or how to manage your loved ones, it’s because all you want is to feel like the person you were before it was interrupted. That is the part no one tells you about or explains how it will affect you on levels outside of the pain, sadness, or struggle you go through…it isn’t just physical, it’s incredibly mental. When I found myself lost, confused, and having no way to find the answers, the diagnosis started dictating parts of life that were never expected, like how I felt about myself, or how I wanted to express my individuality. It was then I woke up and realized I may not be the only facing these challenges. That I may not be alone. I needed to do something about it. For me, that was taking my experience, my background, and my talents and putting them to use. That guided me to launch AnaOno. I wanted to feel beautiful, I wanted to feel sexy, and pretty and it started with my foundation. The act of simply getting dressed in the morning became my most feared task of the day, that didn’t happen before my cancer.

What are some of the hurdles you perceive exist for people with your disease?
People hear breast cancer, they see Pink. Pink shows pretty, femininity, lightness. There is nothing about breast cancer that represents these words that pink is so easily associated with. There is destruction and darkness. These are the realities, they are not pink. They are not something to celebrate. I was diagnosed at 27 years old, my life was just beginning, the pink shower that fell upon me was completely unrelatable. Living as a patient is my reality. I have to constantly face the marketing reality that has been presented to everyone else, that is an everyday struggle.

Who are some of your role models in your space?
My role models are the mothers, sisters, friends, aunts, coworkers that are diagnosed every day. It isn’t our grandmother’s (or grandfather’s) disease anymore. Breast cancer does not discriminate. And although I am facing my 8th year as a patient advocate, I see too many friends and loved ones facing a new diagnosis. They give me strength, remembrance and hope that we will conquer this disease, but we cannot accept what has been done in the past, and we must pave our own path to ensure our future is a world in which we get one more day with the ones we love.

What is your goal beyond creating a successful business?
AnaOno is not just about selling bras. Yes, we sell bras, but it is more than that. It’s a community, a support system that you can rely on for important, tangible information. I don’t want anyone diagnosed with breast cancer to feel alone; that extends itself beyond providing solutions for your treatment, it’s about supporting and holding each other up when we feel like falling. AnaOno can help strengthen that community.

What does Lyfebulb mean to you? How can we support you better? what are some of the biggest gaps today for a “young” entrepreneur?
For Lyfebulb to take a focus on chronic disease, by not only supporting the patients living with it every day but supporting those that have the skills and background to help make a difference, is an important piece of development in our community. Like living day-to-day doesn’t challenge enough, taking the extra step to make those days just a little easier is the path many of us take after facing these unique challenges. I am so proud to be a part of the Lyfebulb family, so I can not only have their support but I can support others taking the path less traveled and adding on the challenge of launching a new business!

How do you stay healthy and motivated to deliver?
Staying healthy is always something I strive for but feel I often fall short. I know life is short. I want to make sure my body is treated in the best way possible, medical side effects can really take hold. Then add on top of that launching a business. I have to give myself time to unwind whenever possible. It may be dinner with my friends, it may be a moment of meditation or a walk through the park. Just a moment to let my mind rest, while my body may be tired. I hope to find my path to mental clarity on a daily basis. That is something I will always have to prioritize in my life.

How has mentorship made a difference in your professional and personal life?
As a “young” entrepreneur, I know a lot, but I don’t know everything. Being open to criticism and feedback, using it to become stronger is very important in both personal and professional growth. It is also good to celebrate the wins or accomplishments. Great mentors will be there to celebrate with you!

How can we draw more attention to user-driven innovation?
Starting your own business, or inventing your own solution can be overwhelming, not to mention scary. Especially when you may not have all the skill sets needed, but I do believe with passion you can achieve anything you put your mind to. By telling stories of other entrepreneurs, who have launched their businesses, I can learn more through real voices and challenges. It also helps you to feel not so alone. It’s beneficial to hear the good, the bad and the ugly… because we all have those moments.

How do you maintain work/life balance?
Maintaining a work/life balance is hard when your work is your life. It may sound crazy, but I love every single moment of my life, and those that are involved, and those I get to meet because of AnaOno. It could be an introduction to another young woman facing a diagnosis, or another woman entrepreneur, or even teaching students how they can get started. My life is my passion, and my passion is my life.

If you had three wishes, what would they be?
That by the time my nieces and nephews grow into adults that they don’t have to be afraid when receiving a cancer diagnosis because treatments will be widely available.
For our society to see disparity as equal.
That no woman faced with a diagnosis feels alone in her life and her treatment.

What is your favorite song that gets you motivated?
Janet Jackson, Black Cat


#InsidethePatientEntrepreneursMind is a weekly blog series that highlights members of Lyfebulb’s Patient-Entrepreneur Circle. The Entrepreneur Circle is an educational and inspirational platform for all people living with or affected by chronic disease. Existing entrepreneurs will be available to educate new dreamers through the website and through live events. Check out last week’s featuring Johnnie Refvik. To read more or to apply to join the Entrepreneur Circle click here.

Lyfestories: Jessica Proto’s Breast Cancer Journey

It was the spring of 2017, around March. I was lying in my bed thinking that it had been a while since I did my last breast self-examination. I started to check my left breast and I could quickly feel a small lump there. I checked both breasts and under my arms, no lumps any other places. I asked my boyfriend to check if he could feel it, and he did. I immediately went online and googled “lump in breast”, which led me to several places that explained that a tumor would be hard and very firm, and not easy to move. Since my lump didn’t have those characteristics, I thought that probably it was just a fat cyst, so I waited another month before I checked it again. The second time I checked it I could still feel it; it had the same size, but just to be sure I wanted my doctor to feel it. He sent me to a clinic to take some tests of it. Unfortunately the results came back positive. Me, a 27-year-old girl, had breast cancer.

I think I was in shock at first. I managed to tell my mum that I had some cell alterations, while I told my sister and my brother that I had cancer. Because of my age they wanted me to take another test, just to make sure that it actually was cancer. The second time I got the answer to my result it was easier for me to tell my family and friends that it was, in fact, cancer. I always thought that cancer was something I probably would get when I got old, and it’s still weird for me to think about it.

My lump was small and I started off with surgery the 18th of august 2017. They removed the lump, analyzed it and the tissue around it and found two more tiny lumps. I had to have another surgery to make sure they removed everything, and then started chemotherapy in November. I consider chemo to be my toughest friend. One of those friends that constantly tells you the truth because they want what’s best for you, even if it hurts you a little bit. Chemo hurts my cells, makes my body ache and tired, but it is for my very best. My treatment journey is not over yet, I’ve still got a few months left, and then I can look back at this as a hard chapter of my life.

I am one of the lucky ones and that is why I’ve always tried to stay positive. I know that I’m surviving this so I usually don’t feel that I have any reason to be sad. I do have a bad day now and then, tired of the whole thing and just want to get back to my “normal” life. I miss my long hair and I don’t feel very feminine anymore. But, my hair will grow back, and I will get my “normal” life back. I also found it soothing to share my story with others. It makes me so happy if I can manage to change just one person’s life. I also would like women to open up their eyes and be more aware of this illness. I know a lot of women who started to check themselves at home after finding out about me. I do it every two-three months, and that is why I’m lucky to survive this. My message to you out there, men and women, is: If you are afraid something is wrong or you are not sure how to do a self-examination and need help, call your doctor. It could really save your life like it did to me.

Keep smiling, and stay positive. Life is good.

A call for action to patient entrepreneurs in the area of cancer to compete at the Lyfebulb-Helsinn Summit for the first ever Lyfebulb- Helsinn Innovation Award

The Award recognizes Patient Entrepreneurs’ Innovative Efforts and Ideas for cancer and cancer supportive care using drugs, medical devices, consumer products, or healthcare information technologies. Newly appointed jury panel members unveiled Deadline for submissions: January 22, 2018

MONACO, PRINCIPALITY OF MONACO and NEW YORK, NY, JANUARY, 9, 2018:Lyfebulb and Helsinn Investment Fund S.A., a fund focused on early-stage investments in areas of high unmet patient need, invite patient entrepreneurs that have embraced and endured the real life experiences of cancer to compete for the Lyfebulb-Helsinn Innovation Award. It has been announced today that:

  • Carolyn R. “Bo” Aldige, President and Founder of the Prevent Cancer Foundation
  • Stephen Squinto, PhD, Lyfebulb Chairman and Co-Founder, Venture Partner at Orbimed, and Co-Founder of Alexion
  • Professor Patrick Rampal, MD, President of the Scientific Center of Monaco
  • Professor Franco Cavalli, MD, Director of Oncology, Oncology Institute of Southern Switzerland
  • Professor Françoise Meunier, MD, EORTC Director Special Projects

are the newly-appointed jury panel members of the first Lyfebulb- Helsinn Innovation Award. The Award will recognize outstanding entrepreneurial potential to commercialize innovative efforts and ideas to better manage and improve the quality of life of cancer patients with respect, integrity, and quality, using drugs, medical devices, consumer products and healthcare information technologies. Established companies of all sizes founded by cancer patients, cancer survivors, or those having a close relative with cancer, who have created a product to address issues encountered by cancer patients, are invited to submit applications by January 22, 2018, through the Lyfebulb-Helsinn Innovation Summit & Award website, where more information regarding eligibility and key criteria can also be found.

Ten finalists will be selected by Karin Hehenberger, MD PhD, CEO and Founder of Lyfebulb, and Mr. Riccardo Braglia, Helsinn Group Vice Chairman and CEO, and invited to compete at the Innovation Summit which will be hosted on 26-27 March 2018, by Helsinn Investment Fund at the Monte-Carlo Bay Hotel and Resort, in Monaco, Principality of Monaco. The Summit is founded upon Lyfebulb’s concept of Patient Entrepreneurship and Helsinn’s determination to provide the best supportive care for cancer patients and to improve the health and quality of life of every person affected by cancer. At the summit, the top finalists will be chosen by a panel of experts through a special “pitch session.” In recognition of the best innovative efforts and ideas, a symbolic monetary prize of USD 25’000 will be given to the entrepreneur winner to advance his/her business and use his/her life expertise to help manage the burden of cancer.

“At Lyfebulb, we come into contact with many people who are putting their own experiences with cancer towards developing solutions to help others. Now, for the first time, patient entrepreneurs have the opportunity to receive exposure and financing toward their companies through a targeted event to help them advance their cause,” says Dr. Karin Hehenberger.

Riccardo Braglia added, “Lyfebulb is about encouraging the best in patient entrepreneurship, drawing on the talents of people with first-hand experience of the cancer journey to help develop innovative approaches to cancer supportive care, and this is very much aligned with Helsinn’s journey. We are delighted of the jury panel – their expertise, experience, industry knowledge and dynamism in helping people with cancer will be invaluable.”

About Lyfebulb
Lyfebulb is a chronic disease focused, patient empowerment platform that connects patients, Industry (manufacturers and payers) and investors to support user-driven innovation. Lyfebulb promotes a healthy, take-charge lifestyle for those affected by chronic disease. Grounded with its strong foundation in Diabetes, the company has expanded disease states covered into Cancer and Inflammatory Bowel Disease.

See www.lyfebulb.com, Facebook, Twitter, Instagram, Karin Hehenberger LinkedIn, and Lyfebulb LinkedIn.

About Helsinn Investment Fund
The Helsinn Investment Fund is focused on early-stage investments in areas of high unmet patient need. Backed by the Helsinn Group, and guided by Helsinn’s core values of quality, integrity and respect, Helsinn Investment Fund aims to help companies with innovative technologies to transform new ideas into commercial solutions with the potential to impact health-related quality of life of patients. Drawing on Helsinn’s over 40 years of investment into research and development and commercial expertise, the investment fund selects companies with technologies in a range of areas including cancer therapeutics and diagnostics, cancer supportive care, metabolic and gastrointestinal disorders, and dermatology conditions.
For more information, visit www.helsinninvestmentfund.com

About the Helsinn Group
Helsinn is a privately owned pharmaceutical group with an extensive portfolio of marketed cancer care products and a robust drug development pipeline. Since 1976, Helsinn has been improving the everyday lives of patients, guided by core family values of respect, integrity and quality. The Group works across pharmaceuticals, biotechnology, medical devices and nutritional supplements and has expertise in research, development, manufacture and the commercialization of therapeutic and supportive care products for cancer, pain and inflammation and gastroenterology. In 2016, Helsinn created the Helsinn Investment Fund to support early-stage investment opportunities in areas of unmet patient need. Since 2012, Helsinn has been coordinating clinical and regulatory activities in China from Beijing and in 2017 established an office in Shanghai to pursue commercial activities. The company is headquartered in Lugano, Switzerland, with operating subsidiaries in Switzerland, Ireland, and the U.S., as well as a product presence in approximately 190 countries globally.

For more information:
Helsinn Group Media Contact
Paola Bonvicini
Group Head of Communication, Helsinn
Lugano, Switzerland
Tel: +41 (0) 91 985 21 21
Info-hhc@helsinn.com
Please visit www.helsinn.com
We are on Twitter. Follow us @HelsinnGroup
We are on LinkedIn. Follow us @ Helsinn Group

Press Contact for Lyfebulb:
Karin Hehenberger, MD, PhD
CEO & Founder, Lyfebulb,
Phone: + 00 1 917-575-0210
Email: karin@lyfebulb.com
Please visit www.lyfebulb.com
We are on Twitter. Follow us @Lyfebulb

Call to Action for Innovators and Patient Entrepreneurs

A call for action to patient entrepreneurs in the area of cancer to compete at the Lyfebulb-Helsinn Summit for the first ever Lyfebulb- Helsinn Innovation Award

  • The Award recognizes Patient Entrepreneurs’ Innovative Efforts and Ideas for cancer and cancer supportive care using drugs, medical devices, consumer products, or healthcare information technologies
  • Newly appointed jury panel members unveiled
  • Deadline for submissions: January 22, 2018

 

MONACO, PRINCIPALITY OF MONACO and NEW YORK, NY, JANUARY, 9, 2018:

Lyfebulb and Helsinn Investment Fund S.A., a fund focused on early-stage investments in areas of high unmet patient need, invite patient entrepreneurs that have embraced and endured the real life experiences of cancer to compete for the Lyfebulb-Helsinn Innovation Award.

It has been announced today that:

  • Carolyn R. “Bo” Aldige, President and Founder of the Prevent Cancer Foundation
  • Stephen Squinto, PhD, Lyfebulb Chairman and Co-Founder, Venture Partner at Orbimed, and Co-Founder of Alexion
  • Professor Patrick Rampal, MD, President of the Scientific Center of Monaco
  • Professor Franco Cavalli, MD, Director of Oncology, Oncology Institute of Southern Switzerland
  • Professor Françoise Meunier, MD, EORTC Director Special Projects

 

are the newly-appointed jury panel members of the first Lyfebulb- Helsinn Innovation Award.

The Award will recognize outstanding entrepreneurial potential to commercialize innovative efforts and ideas to better manage and improve the quality of life of cancer patients with respect, integrity, and quality, using drugs, medical devices, consumer products and healthcare information technologies. Established companies of all sizes founded by cancer patients, cancer survivors, or those having a close relative with cancer, who have created a product to address issues encountered by cancer patients, are invited to submit applications by January 22, 2018,  through the Lyfebulb-Helsinn Innovation Summit & Award website, where more information regarding eligibility and key criteria can also be found.

Ten finalists will be selected by Karin Hehenberger, MD PhD, CEO and Founder of Lyfebulb, and Mr. Riccardo Braglia, Helsinn Group Vice Chairman and CEO, and invited to compete at the Innovation Summit which will be hosted on 26-27 March 2018, by Helsinn Investment Fund at the Monte-Carlo Bay Hotel and Resort, in Monaco, Principality of Monaco. The Summit is founded upon Lyfebulb’s concept of Patient Entrepreneurship and Helsinn’s determination to provide the best supportive care for cancer patients and to improve the health and quality of life of every person affected by cancer. At the summit, the top finalists will be chosen by a panel of experts through a special “pitch session.” In recognition of the best innovative efforts and ideas, a symbolic monetary prize of USD 25’000 will be given to the entrepreneur winner to advance his/her business and use his/her life expertise to help manage the burden of cancer.

“At Lyfebulb, we come into contact with many people who are putting their own experiences with cancer towards developing solutions to help others. Now, for the first time, patient entrepreneurs have the opportunity to receive exposure and financing toward their companies through a targeted event to help them advance their cause,” says Dr. Karin Hehenberger.

Riccardo Braglia added, “Lyfebulb is about encouraging the best in patient entrepreneurship, drawing on the talents of people with first-hand experience of the cancer journey to help develop innovative approaches to cancer supportive care, and this is very much aligned with Helsinn’s journey. We are delighted of the jury panel – their expertise, experience, industry knowledge and dynamism in helping people with cancer will be invaluable.”

 

About Helsinn Investment Fund

The Helsinn Investment Fund is focused on early-stage investments in areas of high unmet patient need. Backed by the Helsinn Group, and guided by Helsinn’s core values of quality, integrity and respect, Helsinn Investment Fund aims to help companies with innovative technologies to transform new ideas into commercial solutions with the potential to impact health-related quality of life of patients.

Drawing on Helsinn’s over 40 years of investment into research and development and commercial expertise, the investment fund selects companies with technologies in a range of areas including cancer therapeutics and diagnostics, cancer supportive care, metabolic and gastrointestinal disorders, and dermatology conditions.

For more information, visit www.helsinninvestmentfund.com

 

About the Helsinn Group

Helsinn is a privately owned pharmaceutical group with an extensive portfolio of marketed cancer care products and a robust drug development pipeline. Since 1976, Helsinn has been improving the everyday lives of patients, guided by core family values of respect, integrity and quality. The Group works across pharmaceuticals, biotechnology, medical devices and nutritional supplements and has expertise in research, development, manufacture and the commercialization of therapeutic and supportive care products for cancer, pain and inflammation and gastroenterology. In 2016, Helsinn created the Helsinn Investment Fund to support early-stage investment opportunities in areas of unmet patient need. Since 2012, Helsinn has been coordinating clinical and regulatory activities in China from Beijing and in 2017 established an office in Shanghai to pursue commercial activities. The company is headquartered in Lugano, Switzerland, with operating subsidiaries in Switzerland, Ireland, and the U.S., as well as a product presence in approximately 190 countries globally.

Lyfestories: “Cancer with a Smile”– Finding Life After Cancer

For many people including myself finishing treatment for cancer can leave you feeling a little lost. You expect to feel over the moon but often end up down in the dumps which can come as a shock. A recent survey by Breast Cancer Care discovered that more than half of breast cancer patients questioned struggled with anxiety after treatment ended and 26% said life after cancer was harder than chemotherapy or radiotherapy.

At this weeks final Moving Forward course with Breast Cancer Care we had a group session with a councillor and all eleven of us said we found life after cancer much harder than we had expected. Initially when treatment stops, being out of the cycle of hospital appointments is unsettling. I found I had got used to the constant care and attention of the nurses and doctors. It was comforting to know they were on hand if you had any problems.

Then treatment stops and its time to get back to your ‘normal’ life, but it just doesn’t seem to fit anymore.

Talking to the other ladies at the course it became clear we all felt a similar feeling of loss but for different reasons. One lady even described it as being like grieving, grieving your old life and body. I could completely relate to this as, for me, hormone therapy and the side effects are something that, ten months in, I am still learning to live with. I feel angry and cheated that, at 35 years old, I am dealing with severe menopausal symptoms while my friends are all having babies. The physical changes that breast cancer brings is another big hurdle many women face. The war may have been won but there are still a lot of casualties to be treated, operations that haven’t gone to plan, unpredictable fatigue and painful scar tissue.

The overall consensus from the group was that the mental scars run far deeper than the ones on our bodies. Many of us feel frustrated that, months after treatment is finished, cancer is still bringing us down but we find it hard to admit this to friends and family. The fear of recurrence is also very raw and many of use don’t trust our bodies anymore, fearing that every little ache or pain is the cancer returning.

Fortunately there are lots of resources out there. Macmillan and Breast Cancer Care both offer courses and counseling that can help cancer fighters deal with life after cancer. I had six sessions of counseling through Cancer Support Scotland which I found really helped get my head in a much better place. We finished the course in a lovely way by writing a letter to ourselves that we will receive in a few months time as a reminder of how far we have come. Our group was keen to stay in touch with each other and the course leader very kindly collected all our phone numbers and email addresses so we can arrange to get together again.

The ‘Someone Like Me’ service that Breast Cancer Care offers is another fantastic way to find someone who has been through a similar experience. It’s also very important to remember our cancer nurses are there for us during and after treatment, so if you have any niggling questions or side effects they are only a phone call away. If you don’t feel happy calling your hospital the Breast Cancer Care Helpline is manned by specialist nurses.

Life after cancer is hard but we are most definitely not expected to handle it alone.

To check out more of Audrey’s amazing work, go here: https://cancerwithasmile.com/

Instagram: @cancerwithasmile

How to Turn Your LYFE on in 2018

The holiday season is the best time of the year, filled with family, food, and laughter! As much as everyone loves gingerbread cookies, pumpkin bread, and all of the holiday drinks, too much of a good thing can take a toll on our health goals. Here are some recommendations on how to start the new year off strong, and stick to your goals!

  1. Make sure your health and fitness goals are attainable! Setting goals that are challenging, but reachable, is key. An example of this could be, going for a 30-minute walk or run everyday, cutting refined sugar out the diet, consuming less meat (especially red).  For Type 1’s, having a lower A1C, eating less carbohydrates, or food logging daily could be great goals!
  2. Don’t forget about your mental health.  This time of year drives motivation to get healthy and “fit”, but often, we forget to take care of our mental health. The holidays can be a stressful time, and it is important to recharge mental so you can start 2018 fresh! Yoga, meditation, reading, journaling–  anything that brings you joy and releases stress should be a priority, just as much as a hard workout!
  3. Find a friend! Whether it is a workout buddy, an “Instagram friend”, or just a close friend who you share your goals with– it is important to have someone to share the journey with, and keep you accountable!

Remember to give yourself some credit! Celebrate the victories along the way, big or small.  

It’s Cancer of the Lymphatic System

I was sat in the ENT department waiting room, dreading hearing my name being called. It all began a month earlier. I had just arrived back home from a long overdue honeymoon. I was well rested and eager to get back to my dream job, which I had not long started. This is when I noticed several lymph nodes on my neck began to swell. I went to see my doctor who urgently referred me to a specialist. After many tests and biopsies, I was awaiting the results.

My name was finally called, my husband and I were escorted into the specialist’s office. We sat down and the doctor said, “There’s no good way for me to tell you, I’m really sorry but you have Hodgkin’s Lymphoma. Do you know what that is Kate?” I nodded. I had watched a few people go through this horrid disease at a similar age to mine. “It’s a cancer of the Lymphatic System.” I replied. I looked over at my husband, his eyes were wide. We both felt like we had just been hit by a bus. I didn’t cry until we left the doctor’s office. I was trying to process it all in my head; how could this happen.

I was 26, healthy, happy, fit, no history of cancer in my family. Why was this happening. Was this it? I have two young children, are they even going to remember me?

How bad is it? Has it spread to my organs, or my bones? I spent most the journey home asking why, and how.

I felt out of control. To confirm the stage and the treatment plan it could take a month. I could not go through feeling this broken for another month. I decided to take control! I believe that everything happens for a reason, so I started thinking back to some memory or experience that would help me here.

I finally knew why had taken all those nutritional advisor courses. I had done some work in the nutrition field and had studies many cases where dietary change had cured people of certain illnesses. I knew all about the foods I should and shouldn’t be eat. My diet was something I could control. I knew that although curing cancer with diet alone is almost unheard of, if I use my knowledge alongside chemotherapy, I would surely be improving my odds of beating cancer.

Instead of going home we went to the local supermarket and started filling the trolley full of fruits, vegetables, whole grains and anything plant based. Completely giving up meat, and dairy for the most part. I began researching about anti-cancer diets, superfoods and Hodgkin’s Lymphoma, because I knew that knowledge was power. The best way to win the war is to know your enemy and its plans.

I began chemotherapy on 26th October. My treatment plan was set for 6 cycles, that’s 12 chemo sessions, each two week apart. That amounted to 6 months of going through chemotherapy.

Now I am a person whose glass is always half full even if there is nothing left in the glass. But cancer and treatment has really tested my optimism. But I have learnt to deal with many of the ‘glamorous’ side effect that chemotherapy has brought:

  • Establish a routine – Take the first cycle to familiarise yourself with how you feel and on which day this starts and end. Keep a journal of what you eat, roughly when and what medication you take. Although the time scale and intensity of the side effect can be different after each treatment, overall there will be a pattern. For me the worst is the bone pain which begins on day four or five.

 

  • The 6 P’sPrior Preparation Prevents Piss Poor Performance – It’s a saying that the British army like to drill into the recruits from the very beginning. I find it very fitting for most things in life. Having established a routine, prepare accordingly. If you know you get constipated, take some medicines to prevent this. If you get a sore mouth on day two, start gargling that mouthwash.
  • Drink Water and Eat Plant Based – Water will help flush toxins and drugs out of the system, while plant based nutrition is the most natural and will help heal and mend your body. Refer to your note’s, and figure out which foods make you feel better or worse. There will be many taste bud changes, so eat what you can stomach.
  • Reach out to people I stated an Instagram page @cancerchemocarbs. I wanted to reach out to others who are going through cancer and treatment. If I could help just one person, in any way, I would feel better. I have met some beautiful people. From different backgrounds, cultures, and countries. It really makes you realize that cancer can affect anyone.

 

The most important thing I’ve learned: stop dreaming and start living. For years, my husband and I have spoken of grand plans, and what we want to do, but have never gotten to fulfilling these plans. This illness has happened for a reason, one that in ten years’ time I will know, I’m sure. I am determined and I know that something good will come from this illness. The best view comes after the hardest climb!

 

Breast Cancer Warrior Thankful for Early Detection

I am a 70-year-old wife, mother, grandmother and university administrator. My cancer journey began October of 2014 with my annual mammogram followed by the mail notice of an abnormality and the ultrasound to check it out.   I was alone in my office when I got the dreaded call from my doctor telling me it was cancer and that I would need to find a surgeon.

After the initial jolt, I picked up the phone, called my husband and made it real by telling him the terrifying news. I tried to minimize the severity by telling him my doctor said it was small, we got it early, and that I likely could get away with a lumpectomy. I have no history of breast cancer in my family.  

Since it was now almost Christmas, I made the decision to tell only immediate family and deal with everything after the Holidays. So we made it through dinners, parties, Santa and all the fun with the diagnosis hanging in the background like Scrooge. And did I say there were tears…..lots of tears.

The first part of January, I saw a surgeon.  He explained that I could have a lumpectomy or a “mastectomy”– the word took my breath away. No one had talked about a mastectomy. He explained with a lumpectomy came radiation and with radiation came difficulties with reconstruction and increased risks of other cancers. Radiation was a must according to the standard of care.  Mind you, this was a very kind qualified doctor doing his job but delivering news that I was not prepared to hear.

I am a take charge person so for the next month, I visited doctors and plastic surgeons, visited with friends and friends of friends who had gone through breast cancer, researched on the internet to the wee hours of the morning, read studies, sent my doctor daughter in Seattle studies to interrupt in the middle of her 80 hour a week residency, drove my husband crazy with the what ifs, and railed against the forces in the universe that brought me to this untenable spot.  

I was having an incredibly hard time accepting that I really did have cancer and that I was going to have to make a decision about how to deal with it.  

When visiting blogs at 2 AM, it became apparent that I was not the only one out there in my predicament. Many women were doing the same thing trying to sift through all the information by themselves and come up with the decision that worked for them.

As I tell this story, keep it mind it is MY story. Not all woman chose to deal with the diagnosis as I did.  There are many types of treatment options and many types of breast cancer.  It is confusing at best and paralyzing at worst.

At the end of all my research, I decided a unilateral mastectomy with reconstruction was best for me given my fear of the side effects of radiation.  So, on March 9th  2014, I had a relatively new nipple and skin sparing mastectomy which leaves the outer part of the breast intact allowing for a good reconstruction outcome.  The pathology report came back with the great news: I had the “best type of cancer” if you must have cancer and would not need radiation or chemo.

The next three months were tougher than I imagined both physically and especially emotionally. June 1st was the reconstruction day and for the short term the end of the physical journey.  Healing has gone well and results are good.  The emotional journey continues, however.  The grief process is one that takes a little more time and doesn’t move in a linear fashion.  You go through the stages of shock, anger, sadness, and acceptance but not necessarily in that order.  I have entered the stage of acceptance– but on any given day anger and sadness can reappear. I know, however, acceptance is where I want and need to be for my continued healing and well- being.  

I am a stronger, more empathic person because of my breast cancer journey and try to be a spokesperson where ever possible to push the importance of mammograms for early detection.  

Medicine has come so far in what can be done both with the surgeries and the drug therapies for women with breast cancer. I pray my daughters and granddaughters will not have to go through what I have. But if you happen to find that you are one of the unlucky one in eight that end up with breast cancer, there are treatments and options and a marvelous life after cancer if you detect it early.

 

I Started Chemo On The Most Gorgeous Day Of The Year

I started chemo on the most gorgeous day of the year.  I had just gotten the full range of motion back in my arm post-surgery a few days before and was ready to take on the next challenge.  My dear friends came in town from Philadelphia to support me.  My girlfriends in Copenhagen gave me a series of gifts to be opened at each treatment.  My parents sent family photos.  Not a bad start.  After my first chemo session, I spent the day enjoying the sunshine.  I even met Seth Godin who was vacationing in Copenhagen.

In fact, aside from the needles, it was a pretty great day.

I was told the nausea would hit me 4-6 hours after the first treatment.  I didn’t want to sit at home waiting to be sick so, under Anders’ watchful eye, I didn’t.  And in the end the nausea didn’t come until four days later!  All in all I’ve been pretty lucky with the side effects though the fatigue is pretty hardcore.  I was sleeping 13-15 hours per day for the first handful of days after treatment and I’ve had a couple less than glamorous episodes involving me nauseous on the floor but nothing super grotesque or horribly unexpected despite the warnings.

The nurse attributes my “luck” so far to 1) drinking close to a galloon of water a day and 2) being pregnant which apparently gives me some special powers.  I would also attribute it to the super nice weather and my friends being in town.

My mind was focused on not wanting to be sick alone inside when there was sun and fun to be had.

So positive mindedness aside, what have the hardest parts been?

Trying to be productive.  The word ‘awake’ used to be binary to me; the exact opposite of ‘asleep’.  Now ‘awake’ has far more variance.  Often when I am awake I don’t feel fully awake rather like I’m walking under water, in slow motion or on autopilot.  And if I workout, I have to expect that a few hours later my body will suddenly feel like I’m sporting a lead suit.  Everything takes more energy.  When my goal is simply ‘to be’ I’m good.  When my goal is to complete a ‘to do’ list I am coming nowhere close.  Often I do 1-2 things and then take a 2-3 hour nap!

Buzzing my hair.  My hair is likely to begin to fall out in the next few days.  Rather than wait for big clumps of it to start falling out, I decided to take my new already short style another step shorter. Anders buzzed it for me.  As I sat in the bathroom with my eyes closed taking deep breaths, suddenly I felt faint and nauseous and started to sweat.  I guess it was a physical reaction to a very emotional experience.  It took me a while to regain my composure before Anders could begin again.  The fact is the Demi Moore/GI Jane look isn’t so bad, it’s knowing that it’s yet another step closer to bald.  And bald is a big (and long) step.  I had my new short haircut for a couple weeks.  I’ll have my buzzcut for likely a week at most.  See you again sometime in 2018 hair.

Demi Moore’s iconic 1992 Vanity Fair cover doctored to also have her GI Jane haircut Photoshop credits: Lone Illum
Going, going…almost gone!

 


Follow Nora on her blog: Reflections: Being Diagnosed With Breast Cancer While Pregnant

In landmark move, FDA approves cancer drug for a biomarker not a tissue

Businessman hand moving the king in a chess game.

Colon, pancreatic, stomach, or ovarian cancer; it increasingly shouldn’t matter. In an era of precision medicine, the treatment approach should reflect the genetic makeup of the person’s tumor and the presence or absence of key biomarkers.

That ethos was set in stone on Tuesday, with the landmark FDA approval of Merck’s checkpoint inhibitor, Keytruda (pembrolizumab), for patients with solid tumors that express so-called mismatched repair genes.

In a statement, FDA noted the historic nature of its decision. “This is the first time the agency has approved a cancer treatment based on a common biomarker rather than the location in the body where the tumor originated.”

It has been a long time in the making. Scientists’ understanding of cancer has shifted dramatically in the 21st Century, helped along by initiatives such as the human genome project and the advent of next-generation sequencing.

One of the biggest revelations has been the degree of heterogeneity between cancers that arise from a single tissue: A breast cancer might be more akin to a melanoma than another breast cancer. As a result, it often makes sense to classify cancers based on their genetics, not their origin, when selecting oncology treatments.

Following today’s approval, one the defining features of certain solid tumors will be whether they are microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR). Both are abnormalities that affect the proper repair of DNA inside the cell (aka mismatch repair genes).

According to FDA, colorectal, endometrial and gastrointestinal cancers have the highest rates of these mutations. MSI-H and dMMR also appear, albeit less commonly, in cancers arising in…

Color secures widespread coverage for its hereditary cancer test

Color Insurance_Provider Portal_HiRes
Color’s insurance provider portal

Is hereditary cancer screening really worth it for the general population? Increasingly, the answer is ‘yes.’

As proof, look no further than Burlingame, California-based Color. Starting June 15, the 2013 startup will begin accepting health insurance for its flagship 30-gene hereditary cancer test.

Announced Monday, the coverage comes through a new partnership with some of the largest payers in the U.S. The deal includes mega-insurers such as United Healthcare, as well as regional players like Blue Shield of California. Combined, the organizations provide healthcare coverage for more than 120 million Americans.

So what makes Color unique?

It’s not the technology or the test. Myriad Genetics’ myRisk Hereditary Cancer test looks at 28 genes that influence a person’s risk for the same eight cancers; breast, ovarian, colorectal, pancreatic, uterine, melanoma, prostate and stomach.

According to Darrin Crisitello, Color’s VP of global sales, marketing, and operations, the company’s greatest differentiator is its price point.

“Typically these tests have been very very expensive, in fact, cost-prohibitive for most patients,” Crisitello said. “So much so, that insurance companies have put very strict criteria in place that people need to meet in order for them to cover the testing.”

By keeping the work in-house and taking the regulatory route of a laboratory-developed test (LDT), Color is able to offer its clinical-grade testing service at a self-pay rate of $249.

By comparison, Myriad’s earlier BRCA1 and BRCA2 test carried a list price of $4,000, triggering public outcry at…

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