13 posts tagged “lung”

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 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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New partner, Schwartz Center, calls for nominations: National Compassionate Caregiver of the Year

Posted April 6th, 2015 by

Remember a time when you were in the hospital or doctor’s office, feeling nervous and anxious about a shot, treatment or diagnosis? And remember there was someone who made you feel safe, answered all your questions, or did something small that had a big impact?

It’s like what Ken Schwartz said during his battle with lung cancer, “These acts of kindness – the simple human touch from my caregivers – have made the unbearable bearable.” Those experiences inspired Ken to create an outline for an organization to promote compassionate care so that patients and their caregivers can relate to one other in a way that provides hope to the patient, support to caregivers and sustenance to the healing process. And just days before his death in 1995, he founded the Schwartz Center for Compassionate Healthcare.

For 16 of the last 20 years the Schwartz Center has been honoring extraordinary professional caregivers and teams who embody characteristics of compassionate care, like listening carefully, showing empathy, instilling hope and more. We’re proud to be partnered with them in their continued efforts. And you can be a part of it, too.

The Schwartz Center is calling for nominations for its National Compassionate Caregiver of the Year (NCCY) award, and you have until May 1 to submit your nomination.

Award-winning author Atul Gawande will present the award at the Kenneth B. Schwartz Compassionate Healthcare Dinner in November, which coincides with the Schwartz Center’s 20thanniversary. His work focuses on the difficult choices caregivers, patients and families face every day and the issues that can make it hard to provide high-quality, cost-effective and compassionate healthcare.

Do something special
If you have special healthcare providers in your life, honor them for their excellence by nominating them for National Compassionate Caregiver of the Year. It’s a simple but powerful way to show your appreciation for a job well (and compassionately) done.

“Receiving the Schwartz Center award … affirmed that rewarding feeling at the end of an encounter with a patient, when you see hope and relief in their eyes – it’s priceless,”  said Thea James, MD, last year’s Schwartz Center Compassionate Caregiver Award recipient.

More about the partnership
Over the last 20 years, the Schwartz Center focused on providing compassionate care, while over the last 10 years, we’ve brought the patient voice and the patient story to the life sciences community. We’re excited about the new alliance, which will help us better understand the patient’s perception of compassionate care. We can strengthen the relationship between patients and their healthcare providers, which leads to better health outcomes, lower costs and greater patient satisfaction.

Working together, we’ll survey our members to gather their feedback on a proposed Schwartz Center Compassionate Care Scale™, designed to let healthcare organizations measure and reward the compassionate care that doctors, nurses and other caregivers provide to patients and families. Jointly, we’ll create content to teach patients what compassionate care really is and how to ask for it.

Julie Rosen, executive director of the Schwartz Center, commented on the part PatientsLikeMe will play in evaluating compassionate care:

“As in other areas of healthcare, we believe measurement can play an important role in improving patients’ care experiences, and we are thrilled to have a collaborator that can help us ensure that we’re measuring what is most important to patients in language they can understand.”

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“I am not alone in this” – PatientsLikeMe member Rikwood55 shares his journey with lung cancer

Posted March 23rd, 2015 by

New member (and New Zealander) Rikwood55 was diagnosed at age 58 with non-small cell lung carcinoma (stage 4), and he said he joined PatientsLikeMe in the hope of connecting with people on the same or similar lung cancer immunotherapy treatments. Rick took part in a clinical trial, and is now tolerating the immunotherapy treatment well. His scans are looking good, and he sums it up this way:

“Five rounds of Carboplatin Chemo was hard going, as it is for everyone. Now more stability has returned and with it, hope for the future.”

Read Rick’s interview below and share your own experiences.

Tell us a little bit about yourself, Rick.

I am Rick, and I was diagnosed at age 58 with NSCLC stage 4 metastasis. I am a New Zealand-born resident currently receiving immunotherapy treatment in a clinical trial every 3 weeks at Auckland Hospital. I have received 14 treatments to date. Scan results have been good and I am tolerating the treatment well. I have joined PatientsLikeMe in the hope of connecting with people on the same or similar lung cancer immunotherapy treatments. Please, no clinical specific info, which would in any way compromise study results. Let’s talk about living day to day…I think you’ll know what I mean.

You were diagnosed about 2 years ago – what went through your mind after your diagnosis?

Diagnosis day was a tough day. Mentally paralyzing. No soft landing. I dealt with it as best as I could. Fortunately my beautiful wife was there for me. 

You’re a brand-new member of PatientsLikeMe – welcome! What do you think of the community and site so far? 

Thank you for your ‘new member’ welcome to PatientsLikeMe. What I have seen so far, this site looks to me to be very impressive, I found the section on sleep very reassuring. Insomnia is a big issue for me. I see now from your research data that I am not alone in this.

On your profile, you’ve noted that one of your interests is in clinical trials. What about clinical trials makes you passionate about them?

I do not think I am passionate about clinical trials per se. However, I am very enthusiastic about the immunotherapy study treatment that I am fortunate to currently be on. It has given me hope. A sense of hopelessness was never far from my mind in the first year after diagnosis. Five rounds of carboplatin chemotherapy was hard going, as it is for everyone. Now more stability has returned and with it, hope for the future.

Finally, what is one thing you’ve learned over the past two years since your diagnosis that you’d like to share with the lung cancer community?

Maybe one small way that I can try and say thanks to the cancer researchers, biotechnicians, study administrators and clinical care staff is to show support and encouragement for the groundbreaking work they are doing. They deserve all the flag waving acknowledgment possible for giving me back hope.

To paraphrase Mel Bernstein/Harris Yulin in Scarface, (1983), “Everyday above ground is a good day.”

Cheers!

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“Not beyond us” – Recognizing World Cancer Day

Posted February 4th, 2015 by

The Union for International Cancer Control (UICC) has organized today, February 4th, as World Cancer Day. This year’s theme: “Not beyond us.” It’s about highlighting that solutions to cancer are within our reach. Awareness is not beyond us. Prevention is not beyond us. And a cure is not beyond us. The UICC is encouraging everyone to take a positive and proactive approach in the fight against cancer by working towards these four goals:

  • Choosing healthy lives
  • Delivering early detection
  • Achieving treatment for all
  • Maximizing quality of life

You can become part of the World Cancer Day effort and raise awareness about what needs to be done. Whether it’s at an individual, community, governmental or global level, you can help in the fight. Visit the World Cancer Day website to learn how to get involved.

What are PatientsLikeMe members sharing about their journeys with cancer?

PatientsLikeMe member Glow4life was diagnosed with lung cancer (adenocarcinoma) this past June, and her story is a testament to never losing hope. She recently shared her experiences in an interview, and she spared no details in describing her challenges. Despite her terminal diagnosis, four rounds of chemotherapy and the sudden loss of her husband, Glow4life has remained positive, and she’s learned to take every day as it comes and live in the moment. Learn about her journey and how she shares love and hope whenever she can.

“Hope won’t make it happen” is Phil’s (PhillyH) personal motto in life. 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 about her lung cancer journey.

Meet Vickie, a PatientsLikeMe member who has survived cancer not once, but twice. She’s sharing her story, from diagnosis to survivorship, during Lung Cancer Awareness Month. She spoke about her reaction to getting diagnosed, the anxiety filled months leading up to surgery and what recovery was like post-operation. Learn about her journey.

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“Strength will come, somehow, from somewhere” – PatientsLikeMe member Glow4life shares her journey with lung cancer

Posted January 26th, 2015 by

PatientsLikeMe member Glow4life was diagnosed with lung cancer (adenocarcinoma) this past June, and her story is a testament to never losing hope. She recently shared her experiences in an interview, and she spared no details in describing her challenges. Despite her terminal diagnosis, four rounds of chemotherapy and the sudden loss of her husband, Glow4life has remained positive, and she’s learned to take every day as it comes and live in the moment. Learn about her journey below and how she shares love and hope whenever she can.

How did you react after getting diagnosed with lung cancer in 2013? What was the diagnosis process like?

I had a routine X-ray in February 2013, after attending A & E with chest pains (which turned out to be nothing). A few days later I received a letter asking me to return in 6 weeks for a follow up X-ray, as there was a suspect area, probably scarring from a previous chest infection but best to check. My general practitioner reassured me it was unlikely to be sinister, if cancer was suspected I’d be looked into immediately. I thought no more about it and returned for the repeat X-ray as scheduled. The following day my GP rang me to tell me there was a tumor on my left lung that required further investigation, and gave me the number to ring for a scan, which took place within a couple of weeks. I asked if this was likely to be cancer, and he told me it almost certainly was. The scan did, in fact, reveal a cancerous tumor, and I was referred for a PET scan and bronchoscopy. On the 27th of June, I was seen by the specialist who gave me the news that adenocarcinoma was confirmed, and had spread to the other lung, and right adrenal gland, and was given an appointment with an oncologist, who would assess appropriate chemotherapy. It’s impossible to describe how this feels, but you know that your life has changed forever. I saw the oncologist on the 7th of July and was offered a course of cisplatin/premetrexed, a course of 4 to 6 treatments, every three weeks, in an attempt to shrink the tumors and prolong life.

I was told my prognosis was terminal, and that with successful chemo, 20 percent of patients survive a maximum of 12 months. If we were shocked before, nothing compared with this, it was like being hit by a wrecking ball. I started my chemo on the 23rd of July and had the fourth session in October, which was followed by a CT scan. This showed that the tumors had shrunk and no further chemo was necessary. A maintenance course of premetrexed was available but not recommended, as the chemo had made me very ill. Since then I have been on watch and wait, every three months, last time extended to four. I go for X-ray and blood tests before my appointment with Dr. Brown, my oncologist. My cancer is stable, though not cured, and my general health is good, as is my quality of life. I do tire very quickly, but then I’m getting on a bit!

You’ve received treatment for your tumors – what’s it like being on a “watch and wait” plan?

Being on ‘watch and wait’ is like having the sword of Damocles hanging over your head, you never know when it might drop. But I try not to dwell on that, it would be wasting the extra time I have been given in pointless worry and speculation. I try to forget about it between visits, and for the most part I do, though I must admit to a certain amount of anxiety in the couple of weeks prior to the next appointment.

How has your day-to-day life changed since being diagnosed and treated for lung cancer? 

Well, I thought the worst possible thing had happened to me and things couldn’t possibly get worse. But I was about to find out different. It’s hard for me to answer this objectively, as 3 months after the diagnosis, and while I was in hospital having my 2nd chemo, my husband Tim was found dead at home, having suffered a cerebral occlusion. Tim was 11 years younger than me, and in perfect health, so the shock was profound, for all of us. I passed the next few months in a fog of chemo and grief, it was the hardest time imaginable, but the days passed and I got through it.

My life has changed beyond all description and I can say with all honesty that living without Tim is much harder than living with cancer. Loneliness is my biggest issue now, and wishing he was here to help me through this, which I know he would wish he was here to do. One thing I did learn was that having a terminal illness doesn’t make us closer to death than anyone else, and that life can be taken from any of us, at any time. So it’s important to take each day as it comes, and make each one count. When I die, nothing will be left unsaid, no actions regretted or opportunities missed.

I fear death much less than I did, while still embracing what life is left to me. We all have a time to leave this world and move on to whatever adventure lies beyond, and I know that the time is coming when Tim and I will be reunited in spirit. I will be sad to leave my beautiful family, but happy that I’ve been given this time in which we’ve all been able to prepare, and make the very most of the chance to let them know how much I love them. And we all have to leave sometime!

What have you learned from using the InstantMe feature on PatientsLikeMe?

What I’ve learned from PatientsLikeMe is that I’m not alone in this, so many of us are dealing with similar issues, and that while cancer is different to each individual, what is the same is that most of us are devastated by the effect it has on our loved ones. It’s so hard to see their sorrow, and know you are the cause and can do nothing to stop it. I’ve also learned that many people are much worse off than I am, having succumbed so much faster, while I am still here and comparatively well. Each time I go for a scan/bloods/chemo, or to oncology I see the waiting room full, and think, so many of us, all with similar fears and trepidation of what is coming our way.

We read that your motto is “Never give up, never give in” – along with that, what else would you say to someone who has been recently diagnosed with lung cancer?

What I would say to anyone recently diagnosed is this: You will wonder how you are ever going to find the strength to cope, how do people do it? But be assured that the strength will come, somehow, from somewhere, and you’ll find your way through. Take one day at a time, and make each one count. Prepare for every eventuality, but never lose hope. Follow good advice, not fads. Try not to look too far ahead and live in the day, or even the moment. Don’t think of yourself as dying from cancer, but as living with it. One of Tim’s favorite sayings, when the times were tough, was “Head up, son” I say that to myself every day.

And don’t Google! You’ll frighten yourself with out-of-date misinformation and meaningless statistics. Listen to the experts.

Finally, share love and hope wherever you can, while you can.

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2014 recap – a year of sharing in the PatientsLikeMe community

Posted December 23rd, 2014 by

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys in short videos and even posted about their favorite food recipes.

A heartfelt thanks to everyone who shared their experiences this year – the PatientsLikeMe community is continuing to change healthcare for good, and together, we can help each other live better as we move into 2015.

Team of Advisors
In September, we announced the first-ever PatientsLikeMe Team of Advisors, a group of 14 members that will work with us this year on research-related initiatives. They’ve been giving regular feedback about how PatientsLikeMe research can be even more helpful, including creating a “guide” that highlights new standards for researchers to better engage with patients. We introduced everyone to three so far, and look forward to highlighting the rest of team in 2015.

  • Meet Becky – Becky is a former family nurse practitioner, and she’s a medically retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer.
  • Meet Lisa – Lisa was diagnosed with Parkinson’s disease (PD) in 2008, and just recently stopped working as a full-time executive due to non-motor PD symptoms like loss of function, mental fatigue and daytime insomnolence. Her daughter was just married in June.
  • Meet Dana – Dana is a poet and screenplay writer living in New Jersey and a very active member of the mental health and behavior forum. She’s living with bipolar II, and she’s very passionate about fighting the stigma of mental illness.

The Patient Voice
Five members shared about their health journeys in short video vignettes.

  • Garth – After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.
  • Letitia – has been experiencing seizures since she was ten years old, and she turned to others living with epilepsy on PatientsLikeMe.
  • Bryan – Bryan passed away earlier in 2014, but his memory lives on through the data he shared about idiopathic pulmonary fibrosis. He was also an inaugural member of the Team of Advisors.
  • Becca – Becca shared her experiences with fibromyalgia and how she appreciates her support on PatientsLikeMe.
  • Ed – Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort.

Patient interviews
More than 30 members living with 9 different conditions shared their stories in blog interviews.

Members living with PTSD:

  • David Jurado spoke in a Veteran’s podcast about returning home and life after serving
  • Lucas shared about recurring nightmares, insomnia and quitting alcohol
  • Jess talked about living with TBI and her invisible symptoms
  • Jennifer shared about coping with triggers and leaning on her PatientsLikeMe community

Member living with Bipolar:

  • Eleanor wrote a three-part series about her life with Bipolar II – part 1, part 2, part 3

Members living with MS:

  • Fred takes you on a visual journey through his daily life with MS
  • Anna shared about the benefits of a motorized scooter, and a personal poem
  • Ajcoia, Special1, and CKBeagle shared how they raise awareness through PatientsLikeMeInMotion™
  • Nola and Gary spoke in a Podcast on how a PatientsLikeMe connection led to a new bathroom
  • Tam takes you into a day with the private, invisible pain of MS
  • Debbie shared what it’s like to be a mom and blogger living with MS
  • Shep spoke about keeping his sense of humor through his journey with MS
  • Kim shared about her fundraising efforts through PatientsLikeMeInMotion™
  • Jazz1982 shared how she eliminates the stigma surrounding MS
  • Starla talked about MS awareness and the simple pleasure of riding a motorcycle

Members living with Idiopathic pulmonary fibrosis:

Members living with Parkinson’s disease:

  • Dropsies shared about her frustrating Parkinson’s diagnosis experience and how diabetes might impact her future eating habits

Members living with ALS:

  • Steve shared the story behind his film, “My Motor Neuron Disease Made Easier”
  • Steven shared how technology allows him to participate in many events
  • Steve shared about creating the Steve Saling ALS residence and dealing with paramedics
  • Steve told why he participated in the Ice Bucket Challenge
  • Dee revealed her tough decision to insert a feeding tube
  • John shared about his cross-country road trip with his dog, Molly

Members living with lung cancer:

  • Vickie shared about her reaction to getting diagnosed, the anxiety-filled months leading up to surgery and what recovery was like post-operation
  • Phil shared the reaction she had after her blunt diagnosis, her treatment options and her son’s new tattoo

Members living with multiple myeloma:

  • AbeSapien shared about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding

Caregiver for a son living with AKU:

  • Alycia and Nate shared Alycia’s role and philosophy as caregiver to young Nate, who is living with AKU

Food for Thought
Many members shared their recipes and diet-related advice on the forums in 2014.

  • April – first edition, and what you’re making for dinner
  • May – nutrition questions and the primal blueprint
  • June – getting sleepy after steak and managing diet
  • July – chocolate edition
  • August – losing weight and subbing carbs
  • September – fall weather and autumn recipes
  • Dropsies – shared her special diabetes recipes for Diabetes Awareness Month

Patients as Partners
More than 6,000 members answered questions about their health and gave feedback on the PatientsLikeMe Open Research Exchange (ORE) platform. ORE gives patients the chance to not only check an answer box, but also share their opinion about each question in a researcher’s health measure. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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Shining a light on lung cancer

Posted November 21st, 2014 by

Back in 1995, a few organizations came together to recognize Lung Cancer Awareness Day – there were a few awareness activities and some scattered fundraisers. Fast forward to now. Almost 20 years later, over 125 different lung cancer events are spread across three continents during the month of November. This is Lung Cancer Awareness Month, and the Lung Cancer Alliance (LCA) wants you and everyone you know to help shine a light on this pulmonary condition.

Here is some information you might not know, and can tell others about lung cancer:

  • In 2014, over 220,000 new people will be diagnosed with lung cancer1
  • Lung cancer is the most common cancer among both men and women
  • Lung cancer is the leading cause of death among every ethnic group, and the second leading cause of death in the U.S.2
  • Almost 80% of those diagnosed are former or non-smokers

We got a jump-start here at PatientsLikeMe. Right on November 1st, some on the team joined in the LUNGevity Foundation’s ninth annual Breathe Deep Boston 5K Walk. They’re a new partner of ours, and together, we’ll be collaborating to increase the number of lung cancer members on the site so that more patient-reported information can potentially guide research on the condition. Check out what else our partners at LUNGevity are doing to raise awareness.

How can you help shine your own spotlight on lung cancer this November?

If you’re living with lung cancer, shining a spotlight might mean giving that extra support to someone who’s going through a similar journey. Vickie just shared her story on the blog, and there are more than 1,000 lung cancer members on PatientsLikeMe. Every day, they are giving support and finding answers from others who understand what it’s like to live with lung cancer. Join in.

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1 http://www.cancer.org/cancer/lungcancer-non-smallcell/detailedguide/non-small-cell-lung-cancer-key-statistics

2http://www.lungcanceralliance.org/assets/docs/media/LCA%20Funding%20Fact%20Sheet%202011%20Final.pdf


“In my own words” – PatientsLikeMe member Vickie shares about her experiences with lung cancer

Posted November 20th, 2014 by

Meet Vickie, a PatientsLikeMe member who has survived cancer not once, but twice. She’s sharing her story, from diagnosis to survivorship, during Lung Cancer Awareness Month. She spoke about her reaction to getting diagnosed, the anxiety filled months leading up to surgery and what recovery was like post-operation. Learn about her journey below.

The journey
Occasionally I received cards in the mail offering discount lung or heart screenings. I think most people do now and then. I always throw them in the trash. In May 2012, I received one. For some reason I didn’t throw that one away. I called and scheduled an appointment for the heart and lung scan. Was told I’d get a letter in two weeks letting me know the results.

Imagine my surprise when 4 days later I received a voice mail asking me to call the hospital back as soon as possible. With feelings of dread and fear, I returned the call. Was told they were concerned about 2 places in my left lung. Was cautioned to not jump to any conclusions. They could be any number of things. I needed to have testing done. Was scheduled for MRI and PET Scan. Those results were enough to call for a biopsy.

Had the needle biopsy. My lung collapsed immediately. Very scary. Spent 1 night in the hospital. Sent home with instructions. Two days later began having problems breathing. Drove myself back to hospital and found out lung had collapsed again. This time was hospitalized 4 days.

While I was on a gurney in the ER, a pulmonologist from the hospital cancer center (didn’t know he came from cancer center at the time) came to see me. He asked me if I had been told the results of the biopsy. I told him no. He told me it was positive for cancer. Told me not to worry about it, they were going to take care of me. I remember lying there and I just nodded my head. I thought about it for about a minute then blocked it out.

The hope was to do surgery while I was in the hospital for the second lung collapse. The surgery, a lobectomy and wedge resection, would remove my upper left lobe and a portion of my lower lobe. Unfortunately the original scans showed calcium build up in an area of my heart. It was decided I needed to have the heart issue taken care of before the cancer surgery.

Had a heart stent put in. Had to be on a blood thinner for at least two months to make sure blood clots didn’t form on the stent. I then had to be off the blood thinner for a period of time. I have been seeing my oncologist every three months. Get CT scans every six months. Also see pulmonologist every three months.

The surgery
It was three months between time of diagnosis and my surgery. Seemed much longer. I was very worried the cancer would spread. When the time came for me to stop the blood thinner and no call came from doctor I was on edge. I felt they were forgetting about me. I made a call now and then to the lung cancer nurse navigator to remind them about me. I wasn’t that way all the time but I did have extreme anxiety at times. Earlier my family doctor had offered me something to help with my anxiety. I turned it down. Eventually my anxiety did reach a point where I did tell my PCP I needed some help.

Finally, the day of my surgery arrived. September 24, 2012. My parents had driven in from Colorado. Took me to the hospital. Other family would be joining them. At about 0730, the preparation began. I had no idea what kind of a journey was coming my way. I woke up October 8, 2012.

Nothing had gone as planned. What I know of that time is what I have been told by family and what I have read from my medical records. I was on a vent. I was combative and had to be restrained. I tried to pull vent out several times. I had lost enough blood I became anemic. Three days after the surgery I suffered respiratory failure. I developed an infection.

After waking up, I was very confused. I had and still have memory problems. I had to work on my penmanship. Didn’t have enough hand control to write. That has since returned. Couldn’t speak above a whisper due to a paralyzed right vocal cord from the vent. ENT told me there was a good possibility it would never come back. Ended up spending 6 months in a nursing home undergoing speech, physical and respiratory therapy.

Surviving and sharing
I find PatientsLikeMe to be a source of comfort. It is nice to know I can share my feelings and thoughts with those who have been or are going through similar experiences. It makes me stop and think about how I am doing. It is helpful to look at where I have been and see where I am and think about where I am headed.

Diagnosed June 2012 with lung cancer. Diagnosed April 2013 with uterine cancer. At last week’s checkup with pulmonologist, was shown something on my most recent scan. November 19, 2014 will be having bronchoscopy.

It has not been an easy journey. But when all is said and done, I am still alive.

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Out of the Office: PatientsLikeMe team spreads the word for Lung Cancer Awareness Month

Posted November 12th, 2014 by

Hi all! I’m Kara, a member of the Community team at PatientsLikeMe and the moderator for our lung cancer community. November is Lung Cancer Awareness Month, and what better way to kick it off than to join a fantastic group in raising awareness for this often overlooked condition. Along with some fellow PatientsLikeMe staffers — and little Hugo, our French Bulldog mascot for the day — I recently had the pleasure of walking at the LUNGevity Foundation’s ninth annual Breathe Deep Boston 5K Walk on Nov. 1, 2014.

Rain and winds couldn’t keep us away from Carson Beach in South Boston that Saturday morning as we laced up our sneakers to join Boston area survivors and families as they walked to show their support for those living with lung cancer and honor loved ones who are no longer with us.

Bill Shields, WBZ-TV reporter and Boston area resident, emceed the event. Shields is a lung cancer survivor himself and shared his personal story with the crowd. By far, the biggest highlight of our day was hearing the many touching stories, whether it was Shields or other advocates speaking to the crowd, survivors sharing stories huddled over hot cocoa or loved ones proudly displaying their personal motivations for walking emblazoned on “I walk for _______” t-shirts or in stories written along the walls of the Sign-In tents. Check out some additional photos from the event on LUNGevity’s Flickr account.

Walking in the Breathe Deep 5K was just one small way to do our part to help shine a spotlight on lung cancer, show our support for survivors and help improve research funding for future patients. Everyone was out, not just supporting a great cause, but showing the power of people working together. This camaraderie and dedication to change is something I feel privileged to see in our growing lung cancer community on PatientsLikeMe, where members are working every day to raise awareness, share experiences to advance medical research, and help one another live better, together.

PatientsLikeMe member KaraSmith

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LUNGevity Foundation and PatientsLikeMe Unite for New Partnership

Posted October 30th, 2014 by

Organizations Team Up to Enhance Patient Network for People Living with Lung Cancer,
Expand Reach for Research

Washington, DC (October 30, 2014) – Today, LUNGevity Foundation, the leading lung cancer nonprofit, and PatientsLikeMe, the leading patient network, announced a joint initiative to help people diagnosed with lung cancer. The organizations are collaborating to increase the number of lung cancer members on PatientsLikeMe so that more patient-reported information can potentially guide research on the condition. LUNGevity will also continuously provide information on lung cancer to enrich PatientsLikeMe’s content, and in the longer term, will become the first nonprofit to integrate and display dynamic data from PatientsLikeMe on its own website.

PatientsLikeMe is a unique tool that helps individuals living with lung cancer to learn from others. Members can gain a real world understanding of lung cancer treatments and symptoms, track their condition, and contribute health data for research. “Our work with LUNGevity aims to create the premier lung cancer registry in the world, and to make a lasting impact on research and on those who live with the condition every day,” said PatientsLikeMe Executive Vice President of Marketing and Patient Advocacy Michael Evers.

The initiative will provide a complementary information-gathering resource to LUNGevity Foundation’s powerful educational resources and Lung Cancer Support Community (LCSC). Andrea Stern Ferris, president and chairman of LUNGevity, said it also gives people easy access to firsthand information they cannot easily find anywhere else. “We are pleased to partner with PatientsLikeMe because it is a powerful resource for patients to learn from other survivors and to be more empowered in the healthcare process.”

LUNGevity Foundation’s annual Breathe Deep Boston Walk on Saturday, November 1, 2014 raises awareness for the fight against lung cancer. PatientsLikeMe will participate in the event and will provide information about the registry to interested survivors, family members, and friends. More information on the event is available at www.lungevity.org/boston.

PatientsLikeMe welcomes anyone living with lung cancer to join the website.

About Lung Cancer
More information on these statistics is available at www.LUNGevity.org

  • 1 in 14 Americans is diagnosed with lung cancer in their lifetime
  • More than 224,000 people in the U.S. will be diagnosed with lung cancer this year
  • About 60% of all new lung cancer diagnoses are among people who have never smoked or are former smokers
  • Lung cancer kills more people than the next three cancers (colorectal, breast, and pancreatic) combined
  • Only 17% of all people diagnosed with lung cancer will survive 5 years or more, BUT if it’s caught before it spreads, the chance for 5-year survival improves dramatically

About LUNGevity Foundation
LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as by providing community, support, and education for all those affected by the disease. Our vision is a world where no one dies of lung cancer. For more information about LUNGevity Foundation, please visit www.LUNGevity.org.

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.

Media Contacts
Aliza Bran
LUNGevity
(202) 414-0798
abran@susandavis.com

Margot Carlson Delogne
PatientsLikeMe
(781) 492-1039
mcdelogne@patientslikeme.com


“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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