41 posts tagged “Cancer”

World Cancer Day – Voices from the community

Posted February 3rd, 2017 by

Over the last year, we’ve shared many stories from the cancer community on the PatientsLikeMe blog. This year, in honor of World Cancer Day, we’d like to highlight some of those stories:

 

Member Iris (Imartinez), shared her story for Ovarian Cancer Awareness Month. Iris opened up about getting diagnosed at just 28 years old, the challenges of her treatment journey and her passion for riding her motorcycle. For Iris, attitude is everything: “Having a POSITIVE mindset, I believe, makes a big difference.” Revisit her story.

 

 

 

 

Member Clare (Riverdale) shared her story – a diagnosis of non small-cell lung cancer while her husband was already living with prostate cancer. While supporting each other through chemotherapy and radiation, the couple has made an effort to eat healthy and keep up the active lifestyle they led before. Learn about her journey.

 

 

 

Member David, a member of the 2015-2016 PatientsLikeMe Team of Advisors, opened up about living with Stage IV lung cancer and how he hopes to be an inspiration to other cancer patients. David stresses the importance of forging a strong partnership with his care team and reflects on what he calls “some of the best years of my life.” Check out what he had to say.

 

 

Share your awareness efforts and experience with cancer in the PatientsLikeMe forum.

#WeCanICan, together.

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Meet Jacquie from the PatientsLikeMe Team of Advisors

Posted January 6th, 2017 by

Say hello to Jacquie (@Jacquie1961), another member of the 2016-2017 Team of Advisors. We chatted with Jacquie recently about how she lives with her condition and what it meant to become part of this year’s Team of Advisors; “Joining the team is allowing me to…help others who are newly diagnosed or those who think they have something wrong with them.”

Jacquie also opened up about her passion for animals, especially her dog, Roman: “He’s precious, loving, beautiful and really has the personality of a human.”

What gives you the greatest joy and puts a smile on your face?

I would have to say I get the most joy out of being with my dog, he’s been the greatest addition to my life right before I was diagnosed. He’s precious, loving, beautiful and really has the personality of a “human.” Of course my new kitty is an added bonus of love and fun. All in all, I have a tremendous passion for animals.

What has it been like for you managing multiple conditions?

First off, I had Lung Cancer. Fast forward months, I have a new oncologist and stage 4 metastatic lung to colon cancer. I became the 13th documented case of such as it is highly rare. Every 3 months I have a maintenance plan of scans, blood work (that’s actually monthly) and colonoscopies as I have pre-cancerous polyps that must be removed before becoming cancer. The risk is too high, so that is my life with cancer. I chose this over a life of chemo. I have since my 20’s severe anxiety and panic disorder, my only maintenance on that is the highest dosage of Xanax 5x a day and pray I don’t get attacks. I have tried everything and there is no cure for anxiety like I have it, I would not wish a panic attack on my worst enemy. This is truly a disease that if you have never experienced it you would have no clue how horrible it is. Because of 14 months of intensive chemo my bones and joints have severe damage, especially my back. I go every 3-6 months, depending on the body part, for injections for the pain. THIS has really impacted my life. I can’t do the things I used to do, dance, hike, rake leaves, garden etc., because of the pain. My mornings begin with a good hour on my heating pad for my back just to be able to take a shower. This limits me in doing things on the spur of the moment and even getting to my shop on time. Every day I have to apply pain patches and take pain meds which I despise. But…such is my life, I deal with all of it, juggle all the bs and carry on. Top that off with coronary artery disease and stents, all due to the chemo. Never had heart issues. I won’t say this limits my life daily but it does long term now. I now have added regular cardiologist appointments, scans, tests, etc.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

My personal conditions only have the obstacles I myself place on me. Society only needs to be aware that we are all different and we should never judge a person by how they look, talk, walk, or live. Under the shell of someone could be a person who suffers greatly and maybe that scowl on the person’s face isn’t because they are nasty, maybe it’s because they are in horrible pain. Maybe they just got some more bad news about an already bad condition.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

I would tell them to think of their worst headache and multiply it by 10, that is real pain. Imagine being in your car and you are suddenly underwater and you can’t get out, you can’t breathe. That is anxiety. The feeling of being trapped and unable to get out the panic attack that ensues is like an out-of-body experience where so much adrenaline is pumped, you are exhausted when the attack is over but relieved you didn’t pass out or die like you certainly thought you would. Having cancer in the midst of this was just another fight for life big panic attack that didn’t go away.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

First of all, the word “chronic” needs to be redefined. Most conditions are not chronic, they are in a maintenance phase or they are lifelong conditions. However, I would always advise a second opinion. Once diagnosed, try and learn everything you can about your condition. Join a group like PatientsLikeMe where you can interact with others suffering and learning to cope with the same or like condition. Coping mechanisms are generally best learned from those who have been and are in the same shoes as you. Reach out and surround yourself with a support system, and most of all cherish that best friend. You will need him or her.

How important has it been to you to find other people with your condition who understand what you’re going through?

It was very hard until I found PatientsLikeMe, then it became easy. There were so many and so many far worse than me I could immerse myself in helping them which in turn helped me to cope and deal with my own issues. Someone always had it worse than me, someone was fighting to live with their last breath, and some do not live and become another statistic.

Recount a time when you’ve had to advocate for yourself with your (provider, caregiver, insurer, someone else).

After my first cancer diagnosis I had an Oncologist who did NOTHING for me for 5 months when I begged every visit for help and told him how sick I was. I changed doctors and found out that my cancer had already metastasized. Once I became strong enough I became completely in control of my medical care, I pick up all of my own scan results, tests, etc. I make lists of questions, I google everything and I follow up with all doctors. Many times I have already diagnosed myself before seeing a doctor and that includes the dentist and the eye doctor. In 2015 I knew my father was not well, and his complaints of pain went ignored by all doctors for several years. I went to my oncologist and told her something is wrong with him, please figure it out. He had stage 4 non-Hodgkin’s lymphoma of the bone marrow. He is now in remission. How’s that for all these great doctors who told him he was just getting old?

What made you want to join the PatientsLikeMe Team of Advisors?

Joining the team is allowing me to further my voice as a patient of several conditions. To help others who are newly diagnosed or those who think they have something wrong with them. To let them know they are not crazy, and not alone. I am also taking this opportunity to educate the doctors within my large medical circle that I am an example of the reason they became doctors. That my time is valuable, too. Sitting in your office and waiting for you for 5 hours is unacceptable. I have pain and it is an issue coming to see you. I am not just another number in your file cabinet.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

Mostly I have been on the support side of PatientsLikeMe and try to help others. I have not used it as a tool to help me. I already know what I have and how I cope. But I must say there are days my coping skills don’t work very well, conversing to another member that is down and hurting and lifting them up puts my issues back into perspective. I’m still breathing, I’m still here.

What is it like to be you?

Why I ask myself that question I don’t know, maybe I am trying to understand what it is like to be me, I used to know and have an easy answer: it was great being me. Being me now is not always so great, but I am working on making my life better again. I have my new shop that, after my hurdles of getting there in the A.M., is a fun and rewarding place to be. I struggle with issues I have with my brothers. Aren’t they supposed to care about me not just when I am labeled as “sick and dying” but always? Do I expect too much? I think when one goes through so much and continues to constantly have to fight to keep a balance but never gets the balance it’s easy to fall into this abyss of “why me,” so I do my best to stay above that hole. I don’t ask “why me,” because there are no answers. I’m simply a good, driven person who wants to be happy, to help others, to enjoy my days, have fun like I used to and travel freely like I used to. I have a lot of “used to’s” I want back, maybe I should just live with who I am now but I refuse to give up or give in. There are ways I will feel better and I will find them. I got dealt a lousy deck of cards so I have to reshuffle now and deal another deck and make the best of it.

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PatientsLikeMe Welcomes Next Patient Team of Advisors

Posted November 14th, 2016 by

 

CAMBRIDGE, Mass, November 14, 2016PatientsLikeMe has named 11 members to its patients-only 20162017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners.

“Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.”

More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington.

John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and collaborate with PatientsLikeMe and other members of the Team of Advisors. “My experience with PatientsLikeMe has been filled with exploration, information and conversation. My health journey has been positively impacted through my connection with other members, by the various tools for tracking and logging health data, and by opportunities just like this – to participate in an advisory capacity.”

The 2016-2017 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times during the upcoming year. This is the third Team of Advisors the company has formed. The 2015 team focused on redefining patient partnerships and established new ways for the healthcare industry to connect with patients to deliver better care. In 2014, the inaugural group provided feedback to the research team and discussed ways that researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Katherine Bragg
PatientsLikeMe
kbragg@patientslikeme.com
617.548.1375


“I have learned and grown from this and now I want to help others” — Iris shares her story for Ovarian Cancer Awareness Month

Posted September 8th, 2016 by

Iris posing on her motorcycle

September is Ovarian Cancer Awareness Month, so we caught up with member Iris (Imartinez) to find out what living with this condition is really like. Iris opened up about getting diagnosed at just 28 years old, the challenges of her treatment journey and her passion for riding her motorcycle. For Iris, attitude is everything: “Having a POSITIVE mindset, I believe, makes a big difference.” Here’s what else she had to say…  

Tell us a little about yourself. What are your hobbies and passions?  

I’m an outgoing young adult who enjoys motorcycles! Since my diagnosis everything about me changed. My hobbies, my way of thinking, how I view life. One thing that has not changed is my passion for motorcycles. When I gain my strength back and summer comes back around that will be one of the main things I’ll be doing! I was a very selfish and materialistic person before my journey. Now that I have endured a long eight months of treatments, my hobbies and passions have changed. I enjoy reading about others who are going through a tough time and offering an ear or hand to help. I want to share my story to help others and let them know they are not alone! I want to raise money and participate in walks for cancers, not just ovarian but all types of cancers. I started crocheting as a therapeutic way to get through my transplants which helped me so much. Spending time with my family was always and still is a must.  

What was your diagnosis experience like?  

My journey began in July 2015 when my gynecologist found a mass on my ovary. I had my first surgery due to this immature teratoma in August, where I lost my right ovary and fallopian tube. Then I received the call that they found cancer cells in this teratoma, to which I should follow up with chemotherapy. I was devastated I couldn’t believe the message, I just remember crying and wondering why me. I did not follow up with chemotherapy, due to the fact that I was feeling good after surgery and had high hopes that I would be fine.

As the months passed, I began to feel pain in my lower back and thought nothing of it. I even mentioned it to my oncologist who said it was probably nothing, so I continued with my life. That was back in October. By January the pain had become so severe that on Friday, January 15, I left work early and went to the emergency room. There I was admitted and told my cancer was back with an aggression so intense I would have to start chemotherapy that Sunday.

How has life changed for you since your cancer?  

My whole life stopped along with my heart! I couldn’t believe it but I kept that smile and high FAITH and hope on! So began my journey as a cancer patient. I was told I would have to go through four rounds of very intense chemotherapy known as BEP. After that I may need to follow up with surgery.

It’s now been seven months and I’m still in the life of a cancer patient. I underwent two more life changing surgeries. On top of the surgeries, they wanted me to do two stem cell transplants. The second surgery I had to go through was the most difficult one for me. I didn’t even want to go through with it. I was ready to give up and just go somewhere beautiful and live my life out. Then I realized my time on this earth is not done, I have so much to do and so many people to help! So I did the surgery. They did a full hysterectomy, leaving me with a huge scar on my abdomen. I was even told that I may have needed a permanent colostomy, which when I woke up I did not! The moment I was being told this was after I had endured the four months of chemotherapy so I was mad. My emotions could not be explained at that moment. It was the first time I cried in front of anyone about my cancer. 

Then the next surgery I had to do was a removal of a mass in my chest. Chemotherapy killed a lot of the tumors that went from my pelvis up to my chest but left me with two. After having my last surgery, I was super sad! Knowing that I could not have a baby made things very difficult for a woman my age. Now I had to deal with them cracking my chest cavity open and leaving another scar. To get past that and prepare my mind for this, I would tell myself I’m going to look like the corpse’s bride. It was my way of coping with a new scar. So two weeks later we did that surgery. The night before the surgeon called me and told me they were going in through the side, which made me very happy! But with one little defect, one of my vocal nerves would have to be sacrifice, due to the tumor being too incased around it! I thought to myself oh of course. I got through both my surgeries just fine with a new voice I call Barbie. 

 I’ve become a super grateful person and an all-around different gal.

Iris shares her cancer journey on Snapchat

September is Ovarian Cancer Awareness Month. How do you share about your condition, and what have you learned in your journey that you think people should know?  

I will be participating in the 5K Ovarian Cancer walk Sept. 11, now that I have completed my treatment plan. I have shared some of my journey on Instagram but honestly, I shared a lot more on Snapchat to update my family and close friends. I have always been a strong willed person so for people to see me in such a weak stage bugged me. But since this journey I have broken out of that shell. I have taken many pictures since January until now, I even did videos. Now that I am at the end of this treatment plan I want to help others and let them know they are not alone! I have been working with doctors, an art therapist, nurses and anyone I can connect with to get my story out there. I want to begin to speak at events and sponsor walks. I will also be connecting with young adults’ cancer society.

In my journey I have learned many things, about myself and life. One thing that has stuck with me is how to be grateful. I’ve learned to feel for others and understand that everyone is different. Not everyone can take a situation and learn and grow from it. I want people to know that even though they may be going through a hard time in their life, the sunshine does break through the clouds. That they truly are not alone in their suffering. That there are people out there who can feel for them. Always educate yourself about what’s around you to help yourself. Having a POSITIVE mindset, I believe, makes a big difference. Staying positive through everything is what has also helped me a lot.

Since joining in May, you’re pretty active on PatientsLikeMe – how has it been for you to track your health and connect with others on the site?  

Although I have just recently joined this year, connecting with others has been a pretty joyful situation. Being able to vent about how I feel and ask other patients for advice has been amazing. Tracking my health on PatientsLikeMe keeps me on track with what to ask doctors and look back at how bad some of it was. This is the only website I use to track and vent about my cancer. It’s easy to use and it was located on my Patient Gateway.

How has dealing with cancer as a young adult been?

Dealing with this cancer at just 28 has been one of the most difficult things put in my path. I had just landed the job of my career, as a Real Estate Paralegal. In an office were we all get along and everything felt just right. I was living by myself and getting the grasp of being a young adult on her own. I had plans to travel and plans for family birthdays that couldn’t be done. Dealing with my mother having sarcoidosis was another thing that ran through my mind.

I couldn’t be sick not now, not at this time of my life. I couldn’t vent to anyone about it because I didn’t want to stress anyone out. I was the healthiest, strongest person in my family — to be sick with cancer was devastating. I couldn’t put it in words, the way I felt. Finding people to comprehend what I was going through was tough. Going to appointments and never seeing people in my age group made it even worse. I felt like the only young adult whose life had changed. Seeing everyone continuing to live their lives made me feel even worse. I feel like there isn’t that much support for young adults. I also feel like a lot of these young adults don’t want to speak about what they have been through. I can completely understand why. It’s tough, I never wanted to be looked at differently or anyone to feel bad for me. So all I can say is that it’s tough, but I have learned and grown from this and now I want to help others.

 

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PatientsLikeMe and M2Gen Announce Partnership and Plans for Landmark Cancer Experience Study

Posted March 8th, 2016 by

 

CAMBRIDGE, Mass. & TAMPA, Fla., March 8, 2016—Patient network PatientsLikeMe® and informatics solutions provider M2Gen® are collaborating to give patients and researchers a more complete picture of patients’ experiences with cancer treatments and to shed new light on the factors that may affect outcomes and quality of life.

The partnership aims to advance cancer research by combining real-world, patient-reported outcomes shared by members of PatientsLikeMe with the molecular and clinical data shared by patients enrolled in the Total Cancer Care® program at Moffitt Cancer Center and The Ohio State University Comprehensive Cancer Center –

Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC – James). The combined dataset will give researchers a broader, longitudinal view of the many factors that affect patient outcomes.

The collaboration’s initial study is expected to kick off within the next several months and to focus on lung cancer. Researchers will analyze and explore the typically distinct forms of data to generate new insights into the patient experience and value of treatment plans for those undergoing care. The study is funded by PatientsLikeMe partners AstraZeneca and Genentech, a member of the Roche Group.

“As we continue to expand our real-world measurement system, we want to ensure we’re giving patients access to all of the information needed to help guide their care decisions,“ said PatientsLikeMe CEO Martin Coulter. “By integrating data from multiple sources, we’ll be able to get, and give, a more comprehensive picture of disease and patients’ experience managing it.”

Moffitt Cancer Center and OSUCCC – James are founding members in the Oncology Research Information Exchange Network (ORIEN), a unique research partnership among the country’s top cancer centers. M2Gen guides ORIEN’s operations and strategy. Dr. William (Bill) S. Dalton, Founder and CEO of M2Gen, said the collaboration will help guide how cancer care evolves.

“This partnership brings together everything we need to better understand the patient, identify unmet needs, and use that insight to develop better technology, treatments and care protocols,” said Dalton. “We ultimately hope it provides the tools and information patients and their doctors will use to make treatment decisions that are tuned to patients’ life goals and treatment preferences.”

About PatientsLikeMe
PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 70 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About M2Gen
M2Gen is Moffitt Cancer Center’s wholly owned, for-profit, informatics solution subsidiary advancing personalized medicine by using high quality tissue, clinical data and molecular technology to accelerate the discovery and delivery of personalized medicine. Using a rapid learning approach, the goal of M2Gen is to accelerate the science of precision medicine by creating evidence and knowledge-based solutions that identify a patient’s susceptibility to disease, predict how the patient will respond to a particular drug, and match patients to the best therapies for an optimal treatment outcome. M2Gen, along with Moffitt and partnering community hospitals, has created a large, cancer-focused biorepository linked to clinical and molecular data. For more information visit www.m2gen.com

About the Oncology Research Information Exchange Network (ORIEN)
The Oncology Research Information Exchange Network (ORIEN) is a unique research partnership among North America’s top cancer centers that recognize collaboration and access to data are the keys to cancer discovery. Through ORIEN, founders Moffitt Cancer Center in Tampa and The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute in Columbus leverage multiple data sources and match patients to targeted treatments. More information is at http://www.oriencancer.org/.

About the Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute
The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute strives to create a cancer-free world by integrating scientific research with excellence in education and patient-centered care, a strategy that leads to better methods of prevention, detection and treatment. Ohio State is one of only 45 National Cancer Institute-designated Comprehensive Cancer Centers and one of only four centers funded by the NCI to conduct both phase I and phase II clinical trials on novel anticancer drugs. As the cancer program’s 306-bed adult patient-care component, The James is one of the top cancer hospitals in the nation as ranked by U.S. News & World Report and has achieved Magnet designation, the highest honor an organization can receive for quality patient care and professional nursing practice. At 21 floors with more than 1.1 million square feet, The James is a transformational facility that fosters collaboration and integration of cancer research and clinical cancer care. For more information, visit www.cancer.osu.edu.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


Leaning on loved ones—An interview with lung cancer member Clare

Posted February 23rd, 2016 by

When Clare (Riverdale) was diagnosed with non small-cell lung cancer, her husband was already living with prostate cancer. While supporting each other through chemotherapy and radiation, the couple has made an effort to eat healthy and keep up the active lifestyle they led before.

We recently connected with Clare, who emphasized “the value of a loving mate” in her experience with lung cancer.

Tell us a little bit about yourself.

I am 73 years old, grew up on a farm in Alberta. My father smoked a pipe and used to joke about turning the air blue. No one else in the family got cancer. I smoked starting at age 20 while studying for exams, trying to stay awake, then continued as people who smoked got a coffee break and those who didn’t smoke really didn’t get a break. I continued to smoke less than a half a pack a day till age 28, then thanks to Nicorette gum stopped easily, as did my husband. We are very physically active. I rode my bike several miles to my job — weather- permitting — as we have great bike lanes and didn’t live too far from the center of the city. We continued to ride daily after retirement for exercise and belong to the European Waltz Time Society for bi-monthly dancing.

You were diagnosed with lung cancer after going to the emergency room for severe back pain—what went through your head when you received the news?

I was glad to hear that my pain was not a heart attack and that my cancer had been detected in an early stage.

In your profile, you mention that your husband is living with prostate cancer. How has it been supporting each other while managing your own health?

I was so sick during my husband’s treatment with radiation that I did not support him much but he seemed to sail through. The staff at radiation called him the entertainer and the coffee shop he attended daily called him by name and had his coffee ready as soon as he walked in the door. Only once did he have to delay because he had to have a bowel movement and a full bladder each day prior to treatment. He still has prostate pain and takes pain meds for that but his PSA says the treatments were successful and every 3 months the bladder checks say he doesn’t have bladder cancer. All I can say is that without him I would be willing to die now. But he says he can’t stand the thought of being alone, and I worry about him for that reason.

We noticed you regularly track your quality of life and symptoms on PatientsLikeMe. Have you seen benefits from tracking?  

I find it difficult to put in new things like a change in dosage of a medication, or if I want to mention my right breast is getting larger and nipple is painful. I have used it a few times to remember when an event happened.

What’s one thing you’ve learned in your journey with lung cancer that you’d like others to know?

Something I learned in my lung cancer journey is the value of a loving mate. Going through this alone, I would stay in bed and in misery but because of my mate, I eat properly, I exercise and he gets things done when I couldn’t manage. Maybe I would but because I don’t have to, things are better. Yesterday I spent the night worrying about pain in my tongue and wondering if a jagged filling was causing the sore. He called the dentist and I was taken right in and reminded about one of the side effects of Giotrif is mouth sores and to rinse with salt water. Alone I would have continued to stew instead of starting right away on treatment. That is why an advocate is so necessary.

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Meet Peggy from the PatientsLikeMe Team of Advisors

Posted February 10th, 2016 by

Say hello to Peggy, another member of your 2015-2016 PatientsLikeMe Team of Advisors. A survivor of both kidney cancer and Stage II breast cancer, Peggy believes that most of us are “ill-prepared to be ill,” and that better health education can lead to better outcomes.

After years of teaching and volunteering, patient advocacy has come naturally to Peggy. She’s determined to teach others about their treatment options, and writes a blog covering new studies. Her goal is to empower patients to approach their doctors with more confidence.

Here, Peggy touches on how she overcame survivor’s guilt and the challenges of navigating the healthcare system.

What gives you the greatest joy and puts a smile on your face?

In front of me is a bulletin board of picture, heavily featuring my two young grandchildren and a few of my own five children. The sheer joy of seeing my family grow up is in sharp contrast to the realization I could have missed it all, had I not had excellent care of my kidney cancer. In gratitude for what had been given me, and in appreciation for the sacrifices others had made, I am determined to teach others about their kidney cancer and their treatment options. I was horrified to realize that many patients were not only late in being diagnosed, but also receive substandard care. This is generally due to lack of knowledge and I knew that I could educate patients to pursue the best care. This new role as patient advocate seemed to be a natural extension of my life’s work as teacher, mother and community volunteer. I can only hope that other patients can continue to be a part of their own families, thanks to the work that I do.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

My condition is now that I am a healthy person. Except for scars and CTs, no one would think I had been ill. That permits me to examine challenges that patients face as they come to deal with their illnesses, and how our society’s expectations and the convoluted health system limit patient outcomes. For example, people rarely learn how to be effective patients, and are ill-prepared to be ill! They have been taught to be passive in healthcare settings, have not learned how to assess the information given them, and have no experience in navigating a complex health system. Further, they are asked to trust in doctors who do not communicate well, assess conflicting information, and of late, encouraged to be “their own best advocates,” but without any training to do so. Of course, this is usually done at the time in which the patient is most vulnerable!

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

My kidney cancer and my “long-term remission” is an example of what is happening in cancer care and research today. It is a story of great advances in research, hampered by a grim history with its negative expectations, and the time constraints in modern medicine. Though the tools we have at present can reveal the cancer at an earlier stage, or offer more ways to destroy the tumors, we have a very uneven usage of those tools. Rarely is care integrated, with medications sequenced with surgery or radiographic ablation. The typical diagnosis is inadequate, yet that drives treatment into a guessing game, with dire outcomes all too likely. Again, this does not have to be, as simply providing treatment that reflects the recognized guidelines would improve outcomes. Those guidelines can provide basic care, but using all the information now available, and doing so in a timely manner, could change kidney cancer statistics dramatically.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

I would recommend that the patient first understand as much about his own general health condition as possible, recognizing any special challenges. What the patient brings to that party is as important as the diagnosis in treating the disease. Next would be to learn as much about the new condition, and assess whether the diagnosis is complete, or indeed, correct. There are many conditions which are described in “typical” terms, and to understand where the patient fits or does not fit is valuable information, most likely to come when the patient understands the disease and his own situation.

Next would be to learn to say, “I am the kind of patient who wants to learn everything about my disease and how to deal with it. I will probably ask you many questions and hope you can guide me. I will want copies of my tests, any reports and your assessment of me. How do we make this work?”

How important has it been to you to find other people with your condition who understand what you’re going through?

I had a unique situation in that I was essentially cured of my “incurable” Stage IV cancer. There was a time I felt guilty to talk about my successful treatment, feeling that it would be more hurtful for other patients who were not getting the kind of response that I had. I hesitated to offer advice and to share my knowledge, until someone explained that I had “survivor’s guilt.” That feeling had a name, but no initial direction. I knew I had to share the valuable information I could gather. My old schoolteacher/mothering instincts finally made me realize that I could provide a good example for others, and help guide them through the swamps they were in. That role as a “good example” suited me, and made it far easier to give not only information, but advice in a similar role.

Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.

When I was newly diagnosed with breast cancer, which was my second cancer, I felt quite capable of dealing with the treatments to come. Then I met my new oncologist! Recommended through my Medicare Advantage group, I was surprised when his online bio did not mention anything about his skill in treating breast cancer. He noted that his area of specialist interest was in prostate and blood cancers, which did not fit my needs.

Nevertheless, I went to the first appointment. The biopsy report was in my purse, but wanted to hear his interpretation. That report clarified my type of breast cancer, the size of the tumors and location, all of which have a tremendous bearing on treatment. But first I asked about taking certain bone-strengthening agents in the presence of breast cancer, recommended in recent research. “Don’t even worry about such things. You won’t need it,” he said, this despite the existing guidelines. Moreover, he did not even discuss the pathology report, but recommended I see a certain surgeon, saying, “Go get your breast removed and come back to me, and then I will take care of you.”

More stunning than this statement was to learn that the surgeon was especially skilled in abdominal and vascular surgery. Closer to the breast than the prostate, I thought but still not close enough! He did not sound like the type of doctor who could do the best breast surgery on me, nor would he have the expertise to determine the level of surgery—lumpectomy, mastectomy or reconstruction.

The HMO had no particular experts in breast cancer, as “they all can do it,” as an explanation. I quickly shifted back to Medicare, and sought the expertise of a surgeon from a breast center in an academic center. My first appointment was thorough, the pathology discussed at length, as was the size and location of the tumors, which required a complete mastectomy. I understood that I was not a candidate for a lumpectomy, but was offered immediate reconstruction and to anticipate taking hormone inhibitors for the coming years.

In a short time, I had the necessary mastectomy and reconstruction, was set up with a physical therapist, and was comfortable enough to travel overseas just two weeks after surgery. I just don’t think that the prostate guy and the abdominal surgeon would have made that possible!

What makes you a valuable member of PatientsLikeMe when you are not dealing with the daily impact of either of your cancers?

I have asked myself what value I might bring to PatientsLikeMe, and to other patient-to-patient forums for several years. As I had discussed earlier, this role may be unique inside PatientsLikeMe, as most patients are dealing actively with treatment. My profile of how I feel is pretty boring, as I am happy and healthy 99% of the time. But my example might also be of value to other patients who confront serious diseases and find relief from the disease itself, yet never from the anxiety and impact of that illness. I might also be an example of more patients to come, who successfully conquer a cancer — for some time — only to have it return years later, or another take its place.

As cancer and other illnesses are becoming more like chronic illnesses than swift and savage killers, the affected patients and their families are changed forever. Never again will an odd bump or lingering cough pass unnoticed, nor will the fear that the cancer, in its drive to survive, will emerge again.

In addition, many of us are here because we did not get a good diagnosis early in the course of the disease, which may have cost us years of health or even a cure. Much of that should be attributed to the tenacity of diseases or our own cells missing a step at an inopportune time. However, a system which helps the patient work to get a diagnosis earlier, and one which teaches him how to engage his doctor in better care is possible, and the most effective way to benefit all of us.

Thus, my emphasis in PatientsLikeMe will continue to be an example of how one must learn to be engaged with one’s own health, knowing that this will vary from patient to patient, and from event to event. Engagement is a dynamic process, but is empowering, which alone can have a healing effect on the patient. I would hope other patients would recognize the value of their input into the research questions, that they support clinical trials, and work to create partnerships with all their healthcare providers.

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We can. I can. Start talking about cancer.

Posted February 4th, 2016 by

Every February 4, all corners of the world unite in the fight against cancer on World Cancer Day (WCD). What’s the purpose? To get as many people around the globe talking about a disease that continues to claim 8.2 million lives every year.[1]

How can you get involved?

Every action counts and the more people out there making noise – the better. Enough awareness and education urges people to take action and can save lives.

This year marks the start of a three-year campaign for reach and impact under the tagline, “We can. I can.” You can start talking by sharing one of the ready-made tweets on their site, add your WCD activity on the map of impact, support WCD’s “Talking Hands” on social media, join the WCDThunderclap campaign, download sharable materials and more.

And don’t forget to share your awareness efforts and experience with cancer in the PatientsLikeMe forum.

#WeCanICan, together.

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Meet David from the PatientsLikeMe Team of Advisors

Posted February 3rd, 2016 by

We’d like to introduce you to David, another member of your 2015-2016 PatientsLikeMe Team of Advisors. David has been living with Stage IV lung cancer for four years and hopes to be an inspiration to other cancer patients.

He has worked to raise awareness for his condition as a political advocate for the NGO Lung Cancer Alliance. And as a retiree, he stays active by cycling, gardening and baking bread.

Here, David stresses the importance of forging a strong partnership with his care team and reflects on what he calls “some of the best years of my life.”

What gives you the greatest joy and puts a smile on your face?

Knowing at the end of a day that my time was spent wisely and productively. To me this means, like any other person, I have accomplished one or more tasks that are important to me. As a retiree each accomplishment mostly orbits around my avocations that include (1) road cycling (2) gardening or working in my greenhouse (3) baking artisan bread (4) photography and (5) traveling. Each avocation reinforces my emotional well-being and belief that despite having a terminal disease (Stage IV Lung Cancer) I can live like any other retiree and enjoy my life. I have successfully adopted this mental framework for the past four and a half years and know that my disease does not define me. Equally important, I have demonstrated while cancer maybe active in my body, my mind has the power to control my response to the disease. I have chosen to embrace life through my hobbies; I successfully rejected the alternative, which is to fold and identify myself as a hopeless, depressed, terminally ill cancer victim. How ironic that the years since I was diagnosed with cancer have been some of the best years of my life.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

While nobody has directly asked me what is it like living with Stage IV lung cancer, a terminal disease, I suspect many people want to know. Outwardly, they see me living a normal if not an envious life and simply cannot comprehend how mentally this is accomplished (without folding) knowing that I have a terminal disease. I would tell them that advanced lung cancer patients can be grouped into two large cohorts.

The first group represents 80% of all NSCL lung cancer patients that do not have equal access to breakthrough therapies and are treated with traditional chemotherapy and radiation. These treatments exact a toll on the physical condition of the patients, and others often experience the person as looking sick. Then there is a much smaller group (20%) that can benefit from breakthrough therapies, which are called targeted and immune therapies. I fall into the targeted therapy group where you take a pill(s) that controls the cancer without the debilitating effects on the body of those that receive traditional therapies. This is why people who know that I am sick greet me with the words “Dave, you look great.”

Despite this façade, living on targeted therapies has significant psychological consequences. Dr. Vicki Jackson, chief of palliative care at MGH, commented on the emotional state of long-term survivors living on targeted therapies: “It’s amazing, because people can live like they don’t have cancer, just by taking a pill. But patients either expect it’ll happen forever, or the roller coaster ride of waiting to see whether there’s another trial drug…gets incredibly stressful.” Truer words were never spoken. The life that I live becomes soul searching every two months before my next scans. What will be the outcome and how might it impact my long-term journey with advanced lung cancer? Emotionally the ritual is wrenching to the psyche.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

My advice to a person recently diagnosed with lung cancer would be to take a protracted deep breath so that you have time to absorb the shocking news your provider delivered to you. Once your equilibrium has been restored, develop a partnership with your oncology team so that you can informatively participate in your treatment options. Given your situation, be chary about popping the big question “How long do I have to live?” Your blunt question makes your provider respond in kind and the answer may not serve you well. No one lung cancer presents in the same way. Our immune systems are unique and how our disease responds to a treatment modality can be very different from others treated like yourself. For example, my surgeon told me I had one to three years to live. In December I will be alive for four and a half years living through targeted therapies as though I did not have lung cancer.

The more self-serving first question to ask your oncologist is if a DNA analysis designed to reveal mutations in your tumor has been performed. This is extremely important because the answer will help you and your providers to decide where and how you should be treated. If the analysis reveals the tumor harbors an activating mutation, for which there is a targeted therapy, then where you are treated can become a critical question. If clinical protocols are not available at your hospital do you make the decision to travel several hours to another hospital to enroll in a clinical trial? Know that research data shows that targeted therapies can significantly extend the progression free survival of a patient. Alternatively, if no activating mutation is found does it make a difference in outcome if I am treated locally versus being treated at a research hospital?

For the newly diagnosed my final words of wisdom would be to cautiously use the web for information. There is a natural tendency for our minds to go to dark places in this situation. The web offers a plethora of data to reinforce the darkness, which may compound depression and a sense of hopelessness. What is most important in the early stages of your journey is to form a good partnership with your oncology team and to find an anchor that shines a light of hope and promise in the dark spaces of your mind.

How can you use life insurance to reduce the financial burden associated with lung cancer?

People purchase life insurance for a variety of reasons so that families can absorb the loss of income when you pass. Typically, families need money to pay off medical bills, pay off a mortgage and to provide a spouse to give the family time to readjust to a new standard of living. Most people purchase term insurance which insures people for a stated period of time. Buried in some of these policies is a benefit sometimes called Accelerated Death Benefit or Living Benefit. This policy benefit is intended to help ease the financial burden of an individual who has a terminal disease and is expected to die within six or twelve months of their diagnosis. By default, stage four lung cancer qualifies for this benefit. Therefore, without question this allows a policy holder to cash in half of the value of the life insurance policy. The money is considered a death benefit and is not taxable. The other added value to the family is that the premium on the policy is reduced by half.

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“I had no idea that my thyroid controls so much” — PatientsLikeMe member Barbara shares her experience for Thyroid Awareness Month

Posted January 29th, 2016 by

January is Thyroid Awareness Month. So, how much do you know about the small, butterfly-shaped gland that influences the way your heart, brain, liver, kidneys and skin function? To help spread #thyroidawareness, we asked member Barbara to tell us about living with thyroid cancer and hypothyroidism, a condition that affects over 6,000 PatientsLikeMe members.

Barbara shares how her thyroid issues have taken an emotional toll on her, as well as some advice on being your own advocate: “Fight for your right to feel normal again.”

Tell us a little about yourself. What are your hobbies and passions?

I really love photography and a new passion is gemstones. I have been taking photos since I was a kid.  I love landscapes and different and interesting people. I still have several film cameras but I love the freedom of digital. I enjoy video and web design as well. I have gotten the opportunity to study gemstones and it has opened up a big new world. I am currently studying how to identify gemstones. It is like being a detective.  There are so many different types. Learning their origins has been fascinating. I also love watching Kung Fu movies with my husband.

When you were diagnosed, what went through your mind?

Barbara took this picture on her trip to Holland.

My diagnosis was a little odd.

I went in for a regular Pap appointment and the doctor felt my glands and made an offhand remark, “Oh, you’ve had that checked,” and then continued on. I sat there stunned. I did not like this doctor so I didn’t say anything about it. When I got home I immediately called and scheduled a physical. It was during the physical that they examined the lump on my thyroid. They sent me to an endocrinologist who did a biopsy after joking that he could do it blindfolded. I did not like that doctor either. The results were abnormal but inconclusive. I was told that I needed surgery and that there was only a 20% chance it was cancer and a 20% chance that I would need thyroid medication.

I thought that I might die. I know that was an overreaction but I was scared.

I didn’t get a real diagnosis until after the surgery.  It was cancer, and within two weeks I knew I needed medication even though I still have half my thyroid.

How has your life changed after having thyroid surgery?  

I have become intimately familiar with exhaustion. I was told by doctors and friends and co-workers that managing my thyroid would be no big deal. Only one person gave me a real glimpse of what was to come. That was a professor that had a friend with extreme exhaustion due to his thyroid issues.

I have been tired, exhausted, angry, unreasonable, irrational and a nightmare to live with. The worst was the first year but it took many years before I started to feel close to normal again. The surgery was nothing compared to my symptoms afterwards especially since I didn’t have any to start with. They have no idea why I got cancer. There is some in my family and I have been told that there can be a link with melanoma, which does run in the family. That is something I am still learning about.

I can empathize much more with people dealing with mental illness because looking back it seems like I was crazy. I know I was not in my right mind.

Barbara took this picture on a trip to Holland.

I have learned to be very sensitive to my emotions.  If I realize that I am not feeling “right,” then I can take precautions. If it is a really bad day I may call in sick to work because it can affect my job performance. I seem to be more prone to migraines when I am off. It can be really hard to tell if I am hypo- or hyper- from my medication. The symptoms can overlap or be very similar. I have charted all of my lab results and read a lot of different research so that I can be my own best advocate. Learning more and paying close attention along with an alarm set for my medication helps a lot. I never ever miss a dose. Depending on my blood work I may adjust my dose by half a pill a week or every other week. I have found that I am very sensitive to dosages. I miss Levothroid — it worked better than the Levothroxine I take now.

In honor of Thyroid Awareness Month, what’s one thing you think people should know about living with and recovering from thyroid cancer?

There are many different ways each person may be affected. If they push you away, please be patient. I did not realize how horrible I was until I came out of the fog. I didn’t feel that sick at the time but looking back, wow. There is help; once I switched doctors the new one listened a lot closer to what I told him and he believed me. Fight for your right to feel normal again. I had no idea that my thyroid controls so much.

In your profile, you mention your doctor: “He doesn’t seem to really understand what I am feeling because by now I should be ‘fine.’” How have you dealt with this? Do you have any advice for someone in a similar situation?

Doctors have been frustrating at times. I have tried to restate things in a different way and if that didn’t work I would request a different doctor. I have also seen a chiropractor that does muscle testing and she helped me a lot even though it seemed an odd way to see what could help. We found that a vitamin and mineral supplements helps me a lot.  We went through a few other supplements to get here but I felt better with each step and she was excited to see me improve. She started with a supplement that helped my liver. I would think that everyone may be a little different. She said that I improved about twice as fast as she thought I would so we were both very happy with the results. Now I have the energy to go out and take some photos.

What has it been like connecting with other PatientsLikeMe members with your condition?

It has been very helpful to see what other people try and what they feel works for them.  It has given me hope. I love the thought of all of our data helping others so they will have a faster, easier time with whatever their ailment is. If I don’t feel well I can see that someone else is doing much worse so I better be happy for what I do have.

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#CervicalHealthMonth: Member Laurie opens up about living with cervical cancer

Posted January 8th, 2016 by

Every year, more than 12,000 women in the U.S. are diagnosed with cervical cancer. And every January, the National Cervical Cancer Coalition (NCCC) kicks off Cervical Health Awareness Month. In honor of #CervicalHealthMonth, we asked Laurie (lroz57), who joined PatientsLikeMe in 2012, to tell her story.

Laurie was given a 50/50 chance of survival when she was diagnosed back in 2003, and endured a difficult treatment experience. Here’s how she describes it:

I was diagnosed on 12/18/2003 with Stage 3B cervical cancer. The tumor was as big as a tennis ball, and in the vaginal wall. I had 28 ext. radiations, 2 int. radiations and 3 low-dose chemo treatments. Talk about burns! Now I have more radiation damage than I thought possible. But as I tell people, ‘I’m alive!’”

Throughout it all, Laurie has committed to staying positive and active — bicycling, exercising at the YMCA and volunteering for the National Patient Advocate Foundation.

As for her experience on PatientsLikeMe, she shares, “I love connecting with others in my position. You never know what you might learn.”

If you’re living with cervical cancer, the NCCC has lots of ways to get involved, including a #CervicalHealthMonth twitter chat on January 12. And if you want to reach out to Laurie, or connect to the other 214 PatientsLikeMe members with this condition, strike up a conversation in the forum!

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“I am not a quitter, I never have been” – An interview with lung cancer member Jacquie

Posted November 19th, 2015 by

Jacquie today.

For Jacquie (Jacquie1961), a business owner and entrepreneur from New Mexico, 2013 was the worst year of her life – she’d lost two beloved pets to old age and then was diagnosed with lung cancer, which soon turned into colon cancer. After rigorous chemotherapy and the adoption of a new dog, Roman, Jacquie joined PatientsLikeMe this past

Jacquie in September of 2013, shortly before her diagnosis.

September and has been sharing her positive, never-back-down attitude with the rest of the community. We took time to connect with her recently and this is what we learned…

Tell us a bit about your life.

After a long career of juggling my own real estate firm and landscaping company, I decided to obtain my esthetician’s license in 2011. In late 2012, I opened a spa for skincare. It was in 2013, as I was building up my new business, that I got my first diagnosis of lung cancer.

What I didn’t know was that I also had cancer in my colon that went unnoticed by the first oncologist I had. I was getting sicker by the day, losing more weight, but no one even did any blood work on me or examined me for five months. I asked about chemo and was told every month that my doctor hadn’t decided on that yet. After Christmas of 2013, my parents urged me to change oncologists.

Jacquie with her boxer, Roman.

Because I was severely anemic, I spent a month and a half getting blood weekly before I could have a colonoscopy under the care of my new oncologist. In March of 2014, I was diagnosed with stage 4 metastatic lung to colon cancer. My surgeon told me that there were only 12 documented cases of lung to colon cancer and the prognosis for life expectancy was not good. I had the colon surgery with resection and started a hellish year of chemo. It wasn’t until May that I closed my business because my job was now to save my life!

I have a new dog, a Boxer named Roman. He is my rock! He’s a rescue and came into my life at the right time. He gave me a reason to get up in the mornings, take short walks, laugh and have a constant companion as most of my time was spent in bed if I wasn’t at chemo or the hospital or a doctor’s office. I never had children so animals to me are my family. The only good part of 2013 was finding Roman.

Jacquie and her father on her wedding day.

How has your life changed since your diagnosis?

Wow, I have to say I am not the same person I was before I was diagnosed and gone through everything I did. I don’t think anyone can. I find myself less tolerant of people who complain about the smallest of things like burnt cookies because they don’t matter.

Material wealth means nothing to me anymore. I lived well, worked hard and made good money. Now that is not that important to me. I’ve had all that and lost it due to cancer. And anyone’s life can be changed on a dime. So cherish what you have now, enjoy life and create memories. And take care of your health.

I am also now in the process of starting a new business with my father – a pawn and antique shop. It’s coming along slowly, but we’ll get there soon to open.

Cancer is a mentally and physical life altering journey. Mine was pretty extensive, but I am sure there are a lot of other women and men who can identify with this. If you approach it with knowledge and a positive attitude the transitioning is much easier.

In 2013, Jacquie was recovering from lung cancer surgery and her family wouldn’t let her be without a Christmas tree. Knowing her love for the ocean, they brought her a white tree. In 2014, after recovering from lung and colon cancer, Jacquie added 2 smaller trees as symbols of her strength in fighting cancers.

I lost all of my hair head to toe in the first few treatments of chemo, but I made it work with hats and an assortment of wigs. Cute hats, wigs, and learning ways to use makeup can make a huge difference in how you see yourself and how you feel about yourself. I still went to charity dinners, events, and I’ve done several fashion shows for cancer even on chemo. No one was the wiser that I was even wearing wigs. I never liked looking at myself in the mirror but accepted it as part of my “job.” My hair is growing back in and I’ve gone out in public. It’s not me at all, but it’s who I really am right now.

Now is the part where I pick up the pieces and put myself back together. How do I deal with the hair growing back? I let it breathe, use some cream to style it and a headband. I wear my wigs or a cute cap when I am running errands. I am trying to put together a monthly course to teach women how to apply makeup and wear scarves. I am lucky that I already have the experience, but it surprised me how many women do not know what to do with themselves so they stay home. Not right…Getting cancer is bad enough but having to feel ugly shouldn’t be part of it.

You mention that you had to be your own advocate with doctors. What would your advice be to others who must advocate for themselves?

As I explained above regarding my first oncologist, I learned from that experience that I better watch out for myself. I didn’t have anyone who had experience with cancer to tell me what to do. Having been through this and seen the mistakes made with my care, I’m adamant that if something is not right with me or I don’t feel right I talk to my doctors about it. I read every scan and I ask questions. Doctors are very busy and it’s easy to get lost in the shuffle. Keep a file with all of your tests. Keep a journal of things you need to have done. I know every three months I have to have scans and a colonoscopy. I often have to remind my doctor that it’s time. Keep track of your scripts as well.

You’ve said in a recent forum post that you’re “a firm believer in keeping up a fight even in the face of adversity.” What keeps you going? And how would you encourage others in your situation to keep going?

I am not a quitter, I never have been. Even given a diagnosis I may not live very long, I was sure to prove the doctors wrong. And yes, I am still here. I was ready to start living life again and then recently hit another bump in the road with a diagnosis of coronary artery disease. My cardiologist will decide whether to put in stents or do bypass surgery. Okay, whatever it takes. And now, I’m also supporting father – my best friend – through his first experience of chemo. After a bout of bad health, I took him over to my doctor and she diagnosed him with non-hodgkins follicular lymphoma stage 4. Since I’ve been through this, he is now my patient.

This August, Jacquie modeled for a local cancer charity, CARE. All funds raised go to people of her town for assistance with bills and medical expenses.

Some days I think my world is falling apart, but I still keep going. I think there is more work for me to do on this earth and God picked me to do it. I’m not a religious fanatic by any means but I have had a world of prayers around me. Everyone is different in how they handle traumatic and life-changing events. I try to tell people to find strength within, that there is light at the end of the tunnel. I see the beach at the end of mine and know I will get there someday soon. People need goals, baby steps – and remember that tomorrow is another day. Every morning and day is a gift that was not promised. Take that gift with gratitude. And spread it!

It doesn’t have to be a curse or a death sentence. It is an illness. You’ll have good days and bad days. If people find themselves depressed or anxious and unable to cope there is help. Find a support system, a therapist, a best friend, a forum like PatientsLikeMe. Surround yourself with positive people. You are a survivor and that is something to be very proud of. I have a group of friends and we call ourselves the Warrior Women. We are a tough group who’ve fought the beast and we are winning.

You’ve been very supportive to other members in the PatientsLikeMe forums. What has been your experience on PatientsLikeMe?

I’m very glad that my mother actually told me about this site. It makes me feel good to think that just maybe I can help someone else because of my experience. Or maybe I know of some way that their journey will be easier on them. I’ve enjoyed conversing with several other women. I’ve also learned more about lung cancer than I knew before through others’ experiences and how they are dealing with it now. I know it’s better and helpful to talk or converse with others who’ve experienced the same thing you have or similar. It’s hard with family and friends as I believe one can’t truly understand what you have been through unless they have gone through it themselves. PatientsLikeMe brings like-minded people together.

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Shining a light on lung cancer

Posted November 2nd, 2015 by

What began as one awareness day back in November of 1995 has grown into Lung Cancer Awareness Month, now in its 20th year, as the lung cancer movement expanded and activities increased. Lung cancer is the second most common cancer in both men and women, but is the leading cause of cancer death in the United States.[1] Although the risk of developing lung cancer is highest in smokers (about 90%[2]), many people who do not smoke develop lung cancer each year.

Luckily, there are plenty of ways for you to get involved and help spread lung cancer awareness throughout the month of November – and year-round.

  • Shine a Light on Lung Cancer: This year’s 7th annual global event, hosted by Lung Cancer Alliance, is taking place on November 5, and is largest coordinated awareness event for lung cancer in the U.S. The lighting of the flashlights in local communities honors survivors and loved ones, and provides hope, inspiration and support for everyone touched by lung cancer. Find the Shine a Light on Lung Cancer event near you!
  • Do your part in fundraising for a cure: Participate in the event of your choice, on your own or with family and friends, and fundraise to support Lung Cancer Alliance or another lung cancer mission of your choice. Don’t forget, PatientsLikeMe will make a donation to your fundraising efforts – and provide team t-shirts – through PatientsLikeMeInMotion. All you have to do is join PatientsLikeMe, get 3 stars on your profile and submit your team details.
  • Take part in local, national or global events: Take part in one of many events hosted by Lung Cancer Alliance, our partners at LUNGevity, or host and attend your own event!
  • Spread awareness through social media: Make a difference in your social networks. Lung Cancer Alliance offers some sample posts to get started.
  • Become a #LUNGFORCEday social ambassador: Launched by the American Lung Association, the LUNG FORCE initiative aims to unite women to stand together against lung cancer and for lung health.

How are you showing your support for those touched by lung cancer this November, or in the months ahead? Share your awareness efforts, and experience with lung cancer, in the PatientsLikeMe forum, and connect with more than 3,380 others living with lung cancer on the site.


[1] http://www.cancer.org/cancer/news/specialcoverage/how-acs-fights-lung-cancer
[2] http://www.cdc.gov/cancer/dcpc/resources/features/lungcancer/

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PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships

Posted October 19th, 2015 by

Cambridge, MA, October 19, 2015—PatientsLikeMe has named 14 members to its patient-only 20152016 Team of Advisors and challenged them to work through an issue that’s central to everyone in the healthcare system: how to redefine patient partnerships. The team will be focused on rethinking what it means for patients to be partners, and on establishing new ways for the healthcare industry to connect with patients to deliver better care.

PatientsLikeMe CEO Martin Coulter said that in an era when patients must be front and center in healthcare discovery and development, the group’s mission is vital to every patient, pharmaceutical company, regulator, payor and provider. “This advisory team includes some of the strongest patient advocates we have ever met. Their experience can empower other patients, and help those serving patients understand what it means to be a good partner. The team’s work will help create a stronger foundation for a more equal and participatory system of care.

More than 1,400 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. The nearly equal mix of men and women are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), bipolar II, cancer, Type 1 diabetes, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lupus, major depressive disorder (MDD), multiple sclerosis, Parkinson’s disease and post traumatic stress (PTS). Members named to the team include: Christel Aprigliano, Craig Braquet, Jeff Demers, Cyrena Gawuga, David Gewirtz, Phyllis Marchand, John Michael, Gus Prieto, Laura Roix, Patti Sanner, Allison Silensky, Angela Stogner, Doug Thornburg and Peggy Zuckerman.

Christel Aprigliano is living with Type 1 diabetes and believes that the key to a good partnership is a focused, data-driven discussion on what matters most to patients. “Patient reported outcomes are crucial to the healthcare conversation. The more information we can share about what life is like for patients every day, the more questions we can ask each other, and the better we can help patients live well with the disease they have.”

The 2015-2016 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times in the coming months. This is the second Team of Advisors the company has formed. Last year, the inaugural group provided feedback to the research team and published a best practices guide that outlines new standards for how researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 350,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039