“Hope won’t make it happen” – PatientsLikeMe member Phil shares about her experiences with lung cancer

Posted October 22nd, 2014 by

That’s Phil’s (PhillyH) personal motto in life – “hope won’t make it happen.” She’s a PatientsLikeMe member who hails from Northampton in the United Kingdom and was diagnosed with lung cancer in 2012. Ever since then, she’s been learning to live with the ups and downs of her condition. She recently shared her experiences in an interview with us, everything from the reaction she had after her blunt diagnosis to her treatment decisions and son’s new tattoo. Phil also shared her thoughts on what every person who has just been diagnosed with lung cancer should know. As she says, “If you don’t know, you can’t do” – read below to learn about her lung cancer journey.

When you were diagnosed with lung cancer in 2012, what was going
through your mind?

My first reaction was defense. Somehow I had to deflect the enormity of what I had been told. I was so disappointed, I had been prepared for pneumonia. After all I felt well, wasn’t sick, wasn’t losing weight, still doing everything I had always done. I was so very angry about the way the doctor gave me the news. Before I had even sat down she bluntly announced “well it’s not good news.” I’m not really sure I heard much after that (if she had said the biopsy shows… then I know that’s fact, not her opinion).

It was so brutal. I asked what my life expectancy was and whether chemotherapy would help me. The response was “it might give you a few extra months.” All I wanted to do was run, hide, escape. The reality was that I had to be strong for both myself and my husband who pretty much fell apart at the news.

We had a brief meeting with a Macmillan nurse who was very sympathetic but not very helpful. There was no treatment plan, I could not have new lungs, I could not have resection, all that I could have was palliative care. Telling our immediate family and friends was hard. It was very emotional in the beginning. The care and kindness shown by friends was overwhelming and amazing. And still is.

My experience confirms to me that you should always have someone with you even if they can’t help much. It deflects some of the isolation, the why me feelings.

That diagnosis was given on 31st July 2012. I was in a very dark place after this as I had no control. I was powerless. It felt like my husband had seen me die there and then. Then I heard nothing from anyone. I was expecting to get some news of what happens next. And waited, and waited and waited. That was scary. I contacted my GP who chased the hospital and eventually on 19th August I had a treatment plan. I also was better informed about the cancer and told it was very slow growing. But incurable. The treatment would hopefully provide some control over the disease and keep it at bay.

Targeted therapy, 1 x 250 g IRESSA tablet (Gefitnib) daily. And blood tests and oncology appointments every four weeks. CT chest and liver scans every 3 months. I felt that was good result.

How has your daily life changed since your diagnosis?

From August 2012 through to July 2014 it really didn’t change that much. I still maintained my full time job as a professional development trainer. I went on holiday, I did gardening, I did write a bucket list and have fulfilled much of it, even going to Chicago. The one thing I didn’t do was a hot air balloon ride. Fear held me back, I wasn’t sure I would be able to breathe properly.

I have lost stamina, and strength in the last two years. I can’t do heavy stuff like digging, and putting up cupboards. I can paint walls and order people about to get things done (in a nice way of course).

I retired in May 2014 for a number of reasons. Firstly my relationship with my boss was not productive and was increasingly frustrating. I was finding full time harder and harder. I could work from home but I don’t possess the discipline to do this long term. Financially, it meant I lost a portion of my pension but I would rather have peace and calm in my life. I can’t be doing with office politics. Never mind the fact that I worked in public service and it is a very challenging and yet fragile environment to work.

The pivotal change came in July when my oncologist told me stop taking the IRESSA tablets. My cancer had become resistant to it. The scan showed an 8mm increase in size over a three month period. I was bereft, alarmed, panicked. It was like my protective cloak had been taken from me. I still have a supply but have stopped taking them as instructed. The latest scan showed a similar increase over three months. So it seems to be growing a 3mm a month. My oncologist still recommends observation so I return again in December.

Most of the time I feel good. I do get tired and some days are better than others. Sweating/flushing especially around waking time and morning nausea don’t last too long. A piece of dry toast usually stabilizes me.

Had a flu jab Tuesday and have felt rough all week. This is compounded by Sciatica, which sneaked up on me about 12 days ago. It’s beginning to ease now. Just have stonking headache now. Probably due to a busy few days. It went something like this. Monday 29th September right leg is painful, when sitting or getting up from a sitting position. Tuesday 30th speak with a friend who suggests sciatica. It’s okay once I’m mobile so put it to the back of my mind. Thursday 2nd Oct drove 180 miles to South Wales to see my son and his family. Sunday weather warnings make me cut short my visit and I leave around 4pm that day. Leg has been hurting more, so take painkillers. Monday see GP who announces immediately that I [have] sciatica. He knows this from the way I stagger into his room. Feel such an idiot when I get up in waiting room full of people and can’t get my limbs in action. Any way he prescribes painkillers but regularly not just when the pain kicks in. Tuesday blood test in readiness for oncology appt. Nurse offers flu jab so I take it. Tell her I have a bit of a sore throat and that’s okay. If you get flu it’s because it’s already there. Wednesday arm is sore as is throat but otherwise okay. Thursday oncology scan shows slight progression again, she’s not unduly worried. She arranges for pelvis and spine xrays because of the sciatica. Thursday have the xrays and they do not show anything. If I’m still in pain on Tuesday/Wednesday next week contact them. They will arrange CT/MRI scans. So alert to my situation. Discussed concerns re chemotherapy as aware it can poison my system. Shared thoughts on alternative meds such as Phoenix Tears. She cannot comment but does say not to mix supplements.

Friday had my nails done, they are beautiful, my new ring looks even better. Not expensive and life’s little pleasures are important to me.

Reading books on fighting cancer and will adjust diet to build immune system and fight cells. Would love to use my mini trampoline but husband would have a fit. He is a born pessimist, and well you must know that I am the opposite.

The other day my son Carter texted me asking what are you favorite flowers in the whole wide world. I tell him carnations, yellow and white. Thinking that a big bouquet is coming my way, big smile on my face. He then sends a txt pic of his upper arm with a carnation tattooed on it! I still smiled. That’s who he is. He wanted a permanent reminder and told me the flower won’t die. Through tears I still smile.

Sometimes I think I’m in denial, but I know that I’m not. I get up every day thankful I’m still here, still loved, still wanting to live till I’m a hundred.

You recently joined PatientsLikeMe – what have you found useful so far? And what do you hope to learn from your fellow community members?

It has been really helpful to read how other people are doing, what meds they are [on] and compare their treatment regimes to mine. This informs me so that I can ask better questions of my oncologist and Macmillan team. I learn something every time I go onto the site, how people feel, how they are coping or not, what their lives are like. It’s very comforting to be able to dip in and out without any expectations on either side.

Can you share how you’ve gone about making treatment decisions?

My biggest decision so far is not to undertake intravenous chemotherapy. The option offered requires weekly vitamin b12 injections, folic acid 5 days before chemo (a combination of cisplatin and premextred) with anti sickness tablets for the following 2 days, and I know chemo will kill good as well as cancer cells. It won’t ‘cure’ me. It won’t get rid of the cancer. So each time I see my oncologist I discuss my health and make my decision. It doesn’t hurt although I feel a pressure sensation in the left lung on my back. (Imagination?)

If you could share one thing with someone who’s been recently diagnosed
with lung cancer, what would it be?

Take time to absorb the information. If there are words, expressions that you don’t understand ask for clarity. Get in terms that you do understand. Join a site like this. Do be wary of internet information and check out the site’s reputation, reliability and responsiveness to you and your questions.

If it is at all possible ask if the diagnosis meeting can be recorded. That way when you feel more adjusted you can listen in the privacy of home. You’ll pick things up that you missed first time round. It will help you prepare a list of questions to take to your next appointment.

If you don’t know you can’t do.

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“I was just doing my job” – PatientsLikeMe member Lucas talks about his experiences with PTSD after serving in the Marines

Posted October 21st, 2014 by

PatientsLikeMe member Lucas (Freedom666420), or Sarge, as his friends and fellow soldiers call him, served in the Marines during two tours in Iraq and was injured while literally hoisting his entire squad up and over a wall to take cover from enemy fire. He recently spoke with Sarah, a PatientsLikeMe community moderator, and shared about his experiences in an interview. Lucas talked about his recurring insomnia and nightmares, and how quitting alcohol and speaking with fellow veterans has helped him cope with his PTSD. Read what he had to say below.

Will you tell us a little about your story?
I enlisted in the military right before I turned 18, graduated basic training about a week after I turned 18. I was in the Marine Corps for about three years total after all the paper work was done. I was discharged medically- honorable retirement discharge because I was injured.

I was on my second tour, about half way through when we were taking air fire and I was trying to get everybody over the wall and I looked back, after I got the last person over, I looked back to make sure everything was clear and that’s when I saw an RPG coming at us and I pushed the last guy over the way and I was blown up. I was hit by shrapnel and the explosion blew me about 61 feet past the wall and when I landed I shattered my right heel and I had shrapnel across my face and shrapnel in my right hip. I walked back to base.

You want to make sure, whenever you’re a squad leader, you want to make sure everyone is safe before you are.

How many people did you get over the wall that day?
I got 22 people over the wall that day.

Wow, you’re such a hero.
I don’t say I’m a hero, I was just doing my job.  I like to be recognized for some things but I served in the military, I was just doing my job.

What are your experiences living with PTSD?
I have nightmares. Basically I have insomnia because I don’t sleep. Every time I do sleep, all I think about are my brothers that didn’t get to go home to their families. And the men that I served with all the way through basic SOI (School of Infantry) training and all my other training, there were several that I went with and I actually went to their families and gave them all the information they needed to know. I wanted them to know personally what happened and how everything went. Because most families never get closure from the military, they just get a statement saying your son (or daughter) has been KIA (killed in action) and they never give a reason of how they went. I wanted everyone’s family in my platoon to know how they went. I know my family would want closure if I were killed.

Are you currently treating your PTSD?
It’s something that I don’t know that I’m ever going to get past. There are things that are drilled into my mind right now that I don’t know that I’m ever going to get past.

That’s why the VA wanted to send me to a counselor and I told them I’m not going to go talk to someone who’s never been there before. There are people that I’ll talk to about some stuff, and there are people I won’t talk to.

It’s one of those things where you have to be very comfortable with the person you’re talking to. I had a horrible experience when I was younger with a counselor, so I don’t like counselors. I’ve been through ten of them.

I think I’m just better off going to the VFW (Veterans of Foreign Wars) because there’s one right in my town. I quit drinking so I go and drink a non-alcoholic beer or soda and I talk to them. I quit drinking a couple years after the military because for the first two and a half years there wasn’t a day I went sober. I drank constantly. There were days when people worried about me because I was always drinking. But I was able to sleep. I needed to be able to sleep, so I slept. I’ve been sober for going on 4 ½ years now, but I just wish I could close my eyes and not see faces.

What helps you cope?
Mostly I talk to another Vietnam vet. It just seems like talking about it makes it a lot better. It’s very helpful when you talk to somebody about it. I feel like you have to talk to somebody else that’s been through something similar. If you find an older man who maybe fought in Vietnam, they give you great input on everything.

It’s better to connect with somebody who you can open up to because you’re able to speak about it and try to get some relief for yourself because if you keep it all bottled up inside, it just gets worse from there. You know before I started talking to the Vietnam veteran who I’m talking to, there were plenty of times that I thought about killing myself. But after talking to him for the past two years now, I’ve honestly begun to feel like I don’t want to anymore. I’ve started a family and things are going better for me, I just still have nightmares and flashbacks, but things get better when you actually talk to somebody that has been through something similar.

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Seeing [MS]: The invisible symptoms – hot and cold

Posted October 20th, 2014 by

Dimitri Cachia is living with multiple sclerosis (MS), and he experiences dramatic changes in his body temperature every day. These swings can aggravate his other symptoms and leave him feeling suffocated. As he puts it, “a single bead of sweat can bring me to my knees.”

 

You are now seeing hot and cold

Photographed by Jamie MacFayden
Inspired by Dimitri Cachia’s invisible symptoms

He worked with photographer Jamie MacFayden to portray his hot and cold sensations as part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which we also posted about on the blog in July (blurred vision) and August (pain). It’s all about raising awareness and showing everyone the invisible symptoms some people are living with because of their MS. Stay tuned for more Seeing [MS] posts.

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“We are many” – PatientsLikeMe member Laura reports back on her experiences as an panelist at the FDA Patient-Focused Drug Development Public Meeting on IPF

Posted October 17th, 2014 by

Just yesterday, you saw our very own Sally Okun RN, Vice President of Advocacy, Policy and Patient Safety, reported back about her experiences at the FDA Patient-Focused Drug Development Public Meeting on IPF. And today, we wanted to share the patient experience. For each public meeting, the FDA invites patients and caregivers to apply to be a panelist and share their real-world experiences with the disease – and Laura (LaurCT) was selected to attend! So, along with Sally, Laura headed to Silver Springs, Maryland and spoke to the FDA about what life if really like living with IPF. Check out how it all went below.

Laura was officially diagnosed with idiopathic pulmonary fibrosis (IPF) in May 2013, but was living with symptoms for years before that. She’s really an inspirational member of the community and always has her 3-stars (which means Laura is a super health data donor!).

Why did you want to be part of the FDA public meeting?

It was simple for me, I wanted to be part of the solution. When I was diagnosed with IPF I was quite the mess as many of us are. I’m a fighter. I just can’t sit back and do nothing. So, once I got over the total devastation I wanted to fight for me, for others and especially for my children. We all have our strengths and fundraising is not one of mine. I can stand up and tell how hard it is to live with this disease, not just medically, but the changes and decisions we all have to make that seem small to some but are huge to people who are living with this disease. It was important for me to be able to give back in some way to those that helped me through all this.

What did it mean to be accepted?

When I filled out the summary I felt no way will I be accepted so I’m not going to worry about it. When I received that email from the FDA that said, “We would like to extend an invitation to you to present your comments during the panel discussion on Topic 1,” I had to read it twice. My next reaction was of total humility, to represent so many patients on a panel and to tell people what we all face was such an honor. My next reaction was to share the good news with Sarah on PatientsLikeMe because I knew she’d be just as excited for me.

What was it like being there as a patient representative speaking at the FDA event? Did you feel like your voice was heard?

It was amazing! I wasn’t alone – there were 8 panelists who have been affected by this awful disease and 4 of us were IPF Patients. As panelists were speaking on their experiences, I would look at the FDA representatives and I could see that they were moved. That is what we went there to do and I truly believe we accomplished that.

What did you learn when you were there?

As many of us have had to do, I have had major changes this last year. Changes that really impacted me. After our panel was done there was a break and people were coming up to me and talking to me about their own experience or thanking me.  It was an unbelievable experience. I learned that I still could contribute in some way. It is good to know what we were doing was important. It gave me a bit of that feeling of accomplishment and purpose that I’ve been missing lately.

How do you feel about your pursuits as an advocate for IPF after having this experience under your belt?

I’m still whirling from the experience. I would love being an advocate for IPF, getting the word out is so important. I was just at the COE I go to for the clinical trial I’m in and I was telling them about my experience and showing them the pictures. There are opportunities to be interviewed by some doctors and the center said they would give out my name when the opportunity arises.

When I completed the summary for the FDA I thought ‘I can really do this!’ So, when I was asked to participate in an afternoon education session for 2nd year medical students at UCONN School of Medicine I said yes. The discussion will be on the impact of chronic diseases on patients and family. You can bet I will tell them the disease that I have. It’s exciting to get that word out so when they become practicing medical professionals and they hear idiopathic pulmonary fibrosis or pulmonary fibrosis, they will hopefully remember what it is.

I just want to add the biggest thing the experience gave me. The in person support groups are few for IPF. In my area there is only 1 and it’s quarterly. The virtual support groups like PatientsLikeMe have been a life changing experience. Many of us feel compassion for each other and cry when they cry and laugh when they laugh and praise those who have accomplished milestones like increase in PFTs or Pulmonary Rehab. It was these virtual groups that got me to a COE and on my journey to living with IPF and not dying with IPF. It still brings me to tears remembering looking out into the audience and seeing over 100 IPF patients some that I have spoken to online and seeing them in person literally takes my breath away to know I really am not alone and that we are many. I got to talk to them in person.

The pictures – UGH! I hate my steroid looks but as Diane, another patient said, this is our new normal. So the selfies are there! Sally taking a picture of me at the FDA podium ~ we got to sit when we spoke with Dr. Lederer from NY Presbyterian Transplant Team, with Diane another IPF panelist and with Sally from PatientsLikeMe

PatientsLikeMe helps so many diseases online and we can think of it as just another online place and not realize there are people behind the scenes that really care for us. Meeting Sally from PatientsLikeMe and seeing her stand up and speak with such compassion about IPF puts a face to such a wonderful organization. I want to thank you for giving me the opportunity; you can’t imagine in a million years what it meant to me. I will be forever grateful.

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Sally Okun reports back from the FDA Patient-Focused Drug Development Public Meeting on IPF

Posted October 16th, 2014 by

On September 26th I was at the FDA for the Patient-Focused Drug Development Public Meeting on IPF. This is one of 20 meetings that the FDA is holding to learn directly from patients and their caregivers about daily life with the specific condition’s symptoms and treatments. (You can learn more about these meetings here.) I have attended a number of these meetings and often have meaningful data to share from our own PatientsLikeMe members. So far, however, the FDA has only allowed patients and caregivers to present and participate as panelists.

So to get as much of our members’ real-world health data in front of the FDA as possible, I take full advantage of the public comment period at the end of each meeting. It’s a short 3-5 minutes of time, but it’s a chance to share insights from PatientsLikeMe members and to reflect on some of what’s been discussed during the public meeting. In addition, we submit a full report to the FDA’s public docket that is open for comment two full months following the meeting. The report includes a community profile and the results of any polls PatientsLikeMe members have taken part in prior to the meeting.

This meeting was different
It was my pleasure and privilege to meet and spend time with a member of our PatientsLikeMe community who was selected by the FDA to be one of the panelists. LaurCT did an amazing job sharing her challenge in getting an accurate diagnosis – which took a number of years. She also shared with the FDA and all the folks in the room that she did not learn about the Center of Excellence for IPF located only an hour from her home from her now former pulmonologist after finally getting the diagnosis of IPF – she learned about it from other IPF patients on PatientsLikeMe. (Thank you for sharing Laura!)

Many in the room acknowledged that a cure may not be found in their lifetime but they also conveyed to the FDA a palpable sense of urgency for treatments to slow the progression of the disease to reduce their symptom burden and increase their ability to participate more fully in life. What was startling was how often people shared how the lack of knowledge about IPF among physicians – even among pulmonary specialists – led to delays in their diagnosis and for some resulted in misdiagnosis and inappropriate treatment.

One specialist, Dr. David Lederer, co-director of the interstitial lung disease program at Columbia University Medical Center in New York City and well known to many patients in the room for his work in IPF, used his few minutes in the public comment period to call for therapies that help his patients “live longer, healthier, more normal and independent lives.” He provocatively said that “oxygen should be free” and called for more study of the benefits of oxygen combined with exercise which today are the only things that help people with IPF actually feel better. This was borne out in our poll as well.

A family thing
In addition, there is an important familial connection that many feel is not getting sufficient attention in research. One woman shared her family’s story starting with her father’s diagnosis and death followed by the deaths of each of his 4 brothers of the same disease. A number of people talked about family members who died over the years with similar respiratory symptoms and questioned whether they in fact may have died of undiagnosed IPF.

Your voices transformed
While the opportunity for patients to be heard cannot be diminished, I along with others in policy and advocacy circles remain concerned by the anecdotal nature of these FDA proceedings. At each meeting, there are a few polling questions with audience clicker devices, but there is no systematic way of transforming the very powerful patient narratives that are shared into meaningful and usable data. At PatientsLikeMe, your stories and your voices are best amplified and speak most loudly when transformed into data that is both meaningful and measureable.

All that said, it’s worth watching the free webcasts of the meeting, which you can find here.

PatientsLikeMe member SallyOkun

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MS members share about their PatientsLikeMeInMotion™ experiences

Posted October 15th, 2014 by

PatientsLikeMeInMotion™ is a way to celebrate our three star members (super health data donors) and sponsor them at events so that they can raise awareness for their condition. If you’re passionate about advocacy and you’re participating in a walk, run or other fundraiser on behalf of your condition, learn more and sign up right here. 

We caught up with three MS community members who are active participants in PatientsLikeMeInMotion. They shared about the events they’ve been a part of over the years, why advocacy is important to them and several ways PatientsLikeMe has helped them manage their MS. Scroll down to read what they had to say. 

Ajcoia 

“Since being diagnosed in 2002, and after my sister was diagnosed in 2001, I have participated and captained every event the Greater Delaware Valley MS Society chapter has offered. This includes the one-day walks, MS150, Muckfest MS and Challenge Walk MS. My favorite event is the Challenge Walk MS, in which I have participated all 12 years. I have met so many wonderful and inspiring people through this event, which brings me back year after year.

Advocacy is huge, because without voices out there speaking on our behalf, we would never get any funding or support. I have been to Washington, D.C. 3 times on behalf of the National MS Society, and I know that our stories being told to legislators help.

PatientsLikeMe has been a wonderful tool for support and also a great way to keep track of symptoms. I love that I receive valuable information about MS and data that they have collected. I also love that they support my teams and I when we participate in events, both monetarily and with their great tee shirts.”

Special1

“I have done the Southern California/Nevada Walk MS events every year since diagnosed in 2009. So I have participated in approximately 5 walks. The first year, I was not able to walk far because of fatigue and heat intolerance. The 2nd and 3rd year, I sat and cheered my team on. This year, I was so glad I was able to walk the 5k with my team of 32 members. We have grown from 14 members the first year. When I form the team, I always go with raising awareness and then concentrate on raising funds. The weather was cool this year, a great day to walk, and I am glad I was able to walk. Last year, the Beat MS Dance walk was started by “So You Think You Can Dance” member Courtney Galiano, and I participated in the event for the second time on Sep 13, 2014.

I have always been a people person, and since I have to be home so much because of symptoms from my MS, I love getting out and seeing new people, including people I meet online or through others. All have showed me that as long as I just keep doing what I CAN do in this new life of mine, I will continue to find reasons to smile. This last year one of our team members, a 16 year old, was diagnosed with MS, and it opened everyone’s eyes and reminded them that life can change at any moment. Value today.

I worked in the medical field for 15 years, and I medically retired due to cognitive issues. When working, I would push my patients to fight, whether it was high blood pressure, diabetes or any illness they were being attacked by. They would come back and thank me through the years. So when I was diagnosed the first year, I was glad to know I wasn’t just going crazy, but I didn’t know how to now be the patient. Slowly I fell into the role of patient, advocate and fighter. I have gotten calls from old coworkers to get info from me to give to patients who are newly diagnosed. Those calls made me a little sad, but also made me happy because I was still needed.

I first heard about PatientsLikeMe on a social media site. I signed on and connected with strangers who I now call friends, I log my meds and health info and sometimes print my health info out and take it with me to doctor’s visits. I like how I get an email asking me how I’m doing, and it’s so easy to use. PatientsLikeMe has also helped me raise awareness and funds for my walks and MS events since 2009.” 

CKBeagle

“I walk. I walk every day. I walk my dogs every day. I walk for my physical health. I walk to get outside for my mental health. For the past several years I have walked for the MS Society and I have the t-shirts to prove it.

Most recently, I have been a part of the Journey of Hope Walks that the MS Society uses to help provide additional funding for society-approved MS Clinics and MS Specialty Care Centers. Currently, I am team captain for our AbFab Concord Neurology Team for MS Specialty Care Center walk team. I know, bad name, but I had to make sure that everything was in there, especially the AbFab, because that is important. Why do I do it? I am not a neurologist. I don’t work for Concord Neurology. I don’t even work for Concord Hospital. I do volunteer at the “clinic” once a month as peer support. Did I forget to mention that I have MS?

The clinic is a wonderful service for patients with MS. On clinic days, they have the opportunity to meet with a neurologist, counselor, physical therapist, occupational therapist, social worker, nutritionist, MS Society representative and peer support to discuss any and all aspects of how MS affects their lives and how their life affects their MS. For the most part, I spend a lot of time asking questions and listening. I try to provide direction on what strategies I have tried to deal with different situations and offer an understanding ear for complaints. I encourage people to relay information to the doctor or therapists even if they think it is unimportant. I learn how other people are coping with the changes brought on by MS. I feel I get as much out of it as I give to it. We all have something to offer.

One of the things that I make sure to give people is the information on the PatientsLikeMe website. I have found it to be an interesting resource for information on treatments and also a way to track my health and attitude history. I especially enjoy the researcher interest on the site where you can provide input on treatments or general health through surveys.

On top of that, I LOVE the PatientsLikeMeInMotion™ program. It was how I first became aware of PatientsLikeMe. I got in touch with the community team, let them know when and where my walk was, kept myself as a 3-star patient and bam! I was accepted into the program. They made a donation to my walk and sent t-shirts for the team. Cool beans! The whole team loves the shirts and the donation helps the MS Society and the clinic. Now all I have left to do is the walk. For now that’s the easy part. Because I walk. I walk every day.”

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You’re Not You

Posted October 10th, 2014 by

There’s a greater sense of awareness around ALS lately. The IceBucketChallenge really shined a spotlight on a condition that many have heard of, but maybe not that many really understand. (If you missed it, see everyone here at PatientsLikeMe taking on the challenge, and what Steve, an ALS community member, thinks about it.

So it seems fitting that today there’s a new film coming out about what life with ALS is like. It’s called You’re Not You, and is based on the novel by Michelle Wildgen. Hilary Swank plays a successful classical pianist diagnosed with ALS. Emmy Rossum is also in the film as Bec, a directionless and brash young woman who becomes Kate’s full-time caregiver. This unlikely pair forms an intimate friendship and life-changing bond inspiring each other to live life to the fullest, while being brought together by the most challenging of circumstances. Through their unwavering support for one another, both women are moved to let go of who they were and discover who they are truly meant to be.

 

A special shout out and thank you to Hilary Swank, Emmy Rossum and Josh Duhamel for taking on the IceBucketChallenge, too!

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PatientsLikeMe and Cancer Treatment Centers of America Eastern team up to support survivors

Posted October 8th, 2014 by

Online Network Connects Patients, Offers Valuable Information and Tools

CAMBRIDGE, Mass.—October 8, 2014PatientsLikeMe and Cancer Treatment Centers of America (CTCA) at Eastern Regional Medical Center (Eastern) have joined forces to help ease patients’ transitions from cancer treatment to survivorship. The collaborative effort is designed to give patients undergoing or completing treatment direct access to a powerful online network for daily support, information and tools.

Offering a comprehensive, fully integrated approach to cancer treatment, CTCA at Eastern sees patients from around the world. “Since so many of our patients are from out of town, it’s incredibly important that we connect them with resources that extend their support and care when they go back home,” said Vice President of Marketing John Goodchild. “PatientsLikeMe will be an important addition to what we do and a way for our patients to not only get great support and services, but to contribute data that could prove valuable for future cancer research.”

PatientsLikeMe’s Executive Vice President of Marketing and Patient Advocacy Michael Evers said CTCA at Eastern and its clinicians will be helping patients access one of the most powerful and active patient networks online. “Our members share information about how they’re managing their condition and actively contribute insights and data to help others and advance research. We’re excited to welcome the CTCA community to PatientsLikeMe. Together, we’ll give everyone the support, tools and services they need to be fully empowered on their journey with cancer.”

The relationship with CTCA Eastern is the latest in PatientsLikeMe’s expansion in cancer, which began earlier this year with an agreement with Genentech. PatientsLikeMe welcomes anyone living with cancer to join the community.

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 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About Cancer Treatment Centers of America
Cancer Treatment Centers of America, Inc. (CTCA) is a national network of five hospitals that specialize in the treatment of patients fighting complex or advanced-stage cancer. CTCA offers an integrative approach to cancer treatment that combines surgery, radiation, and chemotherapy with nutritional counseling, naturopathic medicine, mind-body therapy, and spiritual support to enhance quality of life and minimize side effects during treatment. The company serves patients from all 50 states at hospitals located in Atlanta, Chicago, Philadelphia, Phoenix and Tulsa. Known for delivering the Mother Standard® of care and Patient Empowerment Medicine®, CTCA provides patients with comprehensive information about their treatment options so they can participate in their treatment decisions. For more information about CTCA, go to www.cancercenter.com.

Contacts
Julia Scherer
Cancer Treatment Centers of America
Julia.scherer@ctca-hope.com
215.537.7469

Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


Jamie delivers keynote presentation at DIA 2014

Posted October 7th, 2014 by

Our co-founder, Jamie Heywood, recently traveled to San Diego to receive the Drug Information Association’s (DIA) 2014 President’s Award for Outstanding Achievement in World Health. With the award in his hand and speaking to everyone who was attending the event, he accepted it on behalf of the quarter million PatientsLikeMe members (this is for all of you!).

During the DIA’s 50th annual meeting, Jamie gave the keynote address, and he touched upon his personal journey in the world of healthcare and patient-reported data. He spoke about his brother, Stephen Heywood, who passed away from ALS in 2006, and how Stephen inspired the creation of the ALS Therapy Development Institute (ALSTDI) and PatientsLikeMe. Jamie also shared about “healthspan” and the potential that personal health data has to change the way we look at treatments and research. But that’s not all – watch the video below to hear everything Jamie said.

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It’s time to recognize mental illness in October

Posted October 6th, 2014 by

Think about this for a second; according to the National Alliance of Mental Illness (NAMI) 1 in 4 people, or 25% of American adults, will be diagnosed with a mental illness this year. On top of that, 20 percent of American children (1 in 5) will also be diagnosed. And so for 7 days, October 5th to 11th, we’ll be spreading the word for Mental Illness Awareness Week (MIAW).

What exactly is a mental illness? According to NAMI, A mental illness is a medical condition that disrupts a person’s thinking, feeling, mood, ability to relate to others and daily functioning. [They] are medical conditions that often result in a diminished capacity for coping with the ordinary demands of life.”

There are many types of mental illnesses. The list includes conditions like post-traumatic stress disorder, bipolar II, depression, schizophrenia and more. MIAW is about recognizing the effects of every condition and learning what it’s like to live day-to-day with a mental illness.

This week, you can get involved by reading and sharing NAMI’s fact sheet on mental illness and using NAMI’s social media badges and images on Facebook, Twitter and other sites. Don’t forget to use the hashtag #MIAW14 if you are sharing your story online. And if you’re living with a mental illness, reach out to the mental health community on PatientsLikeMe – there, you’ll find others who know exactly what you’re going through.

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Getting to know our 2014 Team of Advisors – Dana

Posted October 3rd, 2014 by

Just last month, we announced the coming together of our first-ever, patient-only Team of Advisors – a group of 14 PatientsLikeMe members that will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.

So where did we find our 2014 team? We posted an open call for applications in the forums, and were blown away by the response! The team includes veterans, nurses, social workers, academics and advocates; all living with different conditions. Over the coming months, we’d like to introduce you to each and every one of them in a new blog series: Getting to know our 2014 Team of Advisors. First up, Dana.

About Dana (aka roulette67)

Dana is a poet and screenplay writer living in New Jersey. She is very active in the Mental Health and Behavior forum. She is open to discussing the ups and downs of living with bipolar II and helping others through their journey. She has been through weight loss surgery three times and is very interested in the connectivity of diet to mental health—she believes that psychiatrist’s need to be aware of the whole person, and have an understanding about diet, physical health and mental health, not just focus on medication.

Dana is passionate about fighting the stigma of mental illness, which causes people to self-medicate. She believes there needs to be more positive examples on television. Here’s a fun fact about Dana: she won the people’s choice (top voted by peers) award in the PatientsLikeMe video contest for her video, I am not alone.

Dana on being part of the Team of Advisors 

It’s really quite an honor, considering the amount of people on the site. I’ve discovered what a wonderful group the advisor’s are and have had some meaningful conversations with a few of them online. I appreciate the opportunity in helping others in anyway I can to understand what we go thru on a daily basis. By getting a glimpse into the life of someone with an illness, I feel that I am educating them and helping them understand a person they might love or know or have dealings with in their own lives. And hopefully open their eyes a bit. 

Dana’s view on patient centeredness

Like those commercials for the Cancer Institute, where there are more than one doctor or professional to treat the whole patient instead of just the symptoms of one illness. Many times when you are mentally ill, it seems your body also suffers in physical ways, your diet also becomes poor. Patient-centered to me means that the doctor should look at your diet, your physical and your mental health. Just asking if you are taking your meds is not enough. Psychiatrist seem like pill dispensers and then dismiss you from their office and therapists talk, but really have no interest in the meds. More of a team effort is needed.

Dana’s contribution to researchers at the University of Maryland

PatientsLikeMe recently invited the University of Maryland (UMD) to our Cambridge office for a three day consortium that kicked off a partnership funded by their PATIENTS program, which aims to collect patient input and feedback on all phases of research, from ideas to published results. As one of the working sessions we invited Dana to join us remotely, to discuss her journey with bipolar II and share her perspective and expertise as a patient. Here’s what she experienced:

I was a little nervous at first, hoping I was able to answer their questions and provide them with what they needed to know. The questions were pretty specific at times and I found that to be interesting. Because it showed me that they really wanted to know and understand my views. I enjoyed the experience and hope that my interview helped them in some way.

I was very honest. Explained what it is like to suddenly become bipolar when you had no reference point in your life to prepare you for the physical and mental storm it brings. I stressed how it’s a 24/7 – 365 a day battle, even when the meds are working. At least in my experience it has been. I feel this was an important point to make and that they should consider this when dealing with participants in their research.

I would tell researchers moving forward to always remember the patient is more than a test subject. That what you are researching addresses them on a daily basis and some days, the best they can do is just get out of bed. That some type of break should be considered and might even work to their advantage.

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Food for Thought: September weather and autumn recipes

Posted September 30th, 2014 by

Around the PatientsLikeMe office in Boston, the leaves are beginning to turn red, yellow, orange and gold, and everyone is starting to bundle up as the weather gets colder. In turn, PatientsLikeMe members have been sharing their favorite fall recipes and some thoughts about how the weather impacts the conditions they live with. Here’s what some have been saying:

 

I love fall. Cooler temps, brisk breezes, my favorite earth colors and long-sleeved tops with soft vests. The more clothes I put on, the better I feel. [I made] creamed chicken and peas with garlic toast. One of my favorites I only make when the husband is off visiting family.”
-Fibromyalgia member

I love recipes from Real Simple because they tend to be very…ah…simple. This is a crock pot one (yay!) and the potatoes are totally unnecessary if you are avoiding them.
-Mood member

“I will be making sautéed Kobach squash w/ onions, broccoli and some Jasmine rice. Spices turmeric, paprika, salt and pepper. Maybe a little scrambled eggs added.”
-Fibromyalgia member

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And don’t forget to check out our other Food for Thought posts if you missed them.


Every three minutes

Posted September 29th, 2014 by

That’s how often a person is diagnosed with blood cancer in the United States, according to the Leukemia and Lymphoma Society (LLS). This means that 156,420 Americans will be diagnosed in 2014, and hundreds of thousands more worldwide.

But that’s just the start of what everyone can learn during National Blood Cancer Awareness Month. Check out the Lymphoma Research Foundation’s (LRF) video below:

Did you know there are actually three main types of blood cancer? Each affects a different kind of cell in your body and can vary greatly:1

Leukemia is found in your actual blood and bone marrow, and it causes abnormal white blood cells to form and disrupt the normal immune system.

Lymphoma affects your lymph nodes and lymphatic organs, which are the parts of the immune system that remove excess fluid from the body and produce special white blood cells.

Myeloma is the cancer that is limited to plasma cells, which are cells in your blood that help produce antibodies and fight disease.

There are many subtypes of these three categories, including conditions like chronic lymphocytic leukemia, non-Hodgkin’s lymphoma and multiple myeloma, to name a few common ones. This month, get involved by participating in a Lymphomaton (a fundraising and awareness walk), finding a LRF chapter or even posting awareness flyers and posters on Facebook and other social media outlets.

 

Don’t forget to check out Bob’s blog interview – he’s a PatientsLikeMe member who shared about his life after being diagnosed with multiple myeloma and how he’s learned to manage his condition.

 

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1 http://www.hematology.org/Patients/Cancers/


Ovarian cancer – taking early action

Posted September 26th, 2014 by

Do you know why teal is the official color for Ovarian Cancer Awareness Month? It’s an acronym for Take Early Action and Live. This September, we can all do our part to help people understand what it’s like to live with this condition, including spreading awareness and education for early signs and symptoms.

In 2014, the American Cancer Society (ACS) predicts over 20,000 women will be diagnosed, and more than 14,000 others already living with ovarian cancer will die from complications. Here are the straight facts about ovarian cancer from the ACS:

  • 1 in every 73 women will be diagnosed with ovarian cancer at some point in their lives.
  • Ovarian cancer ranks 5th in cancer deaths among women.
  • The lifetime chance of passing away from ovarian cancer is 1 in 100.

If you’re in the area, you can attend one of the National Ovarian Cancer Coalition’s (NOCC) many events this autumn, and you can also share the TEAL poster on social media. And if you’re living with ovarian cancer, you can also connect with other women like you in the PatientsLikeMe community.

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