"Be conservative in what you do; be liberal in what you accept from others.” Jon Postel

"Knit on, with confidence and hope, through all crises." Elizabeth Zimmerman

Wednesday, July 13, 2016

Going Blind

Feet on the sidewalk
I feel kinda sick
Hands out front
I need a white stick
Blurred in the morning
Bruised at night
Falling in the darkness
Could've been a fight

My blind life
I can’t see the road
I can’t see the light
 - My Blind Life by Chris Dreja, sung by The Yardbirds

Those lyrics are exaggerated, but I am going blind. Thanks to rociletinib, the experimental drug I took for eight months, I have rapid onset cataracts.

From Wikipedia 

Fortunately, this problem can be pretty easily fixed. Massachusetts General Hospital sent all of its patients who took rociletinib and developed cataracts to a specialist from Tufts University, but we are lucky to have a very skilled eye surgeon locally. He has scheduled me for surgery as early as possible; I get my right eye fixed on July 26, and my left eye fixed on August 9.

It’s a fascinating experience. The first sign was in late April, when my eyeglasses no longer corrected for distance vision. After years of not seeing anything in focus without glasses, it was weird to have my distance vision apparently improve. That has changed as a white mist deepens over the whole world almost daily. Now my near vision is weakening. I have turned on accessibility options on my electronic devices, which is a big help. Sock and fine lace knitting have been put aside for now, and I have begun a sweater in much bigger yarn. Going from 8 stitches per inch to 4 stitches per inch is just like turning on accessibility options - double the font size!

I have given up driving until after surgery. I certainly should not be driving at night. Trying to drive my husband home from the hospital after dark last week was a failure, as the parking lot looked like a lawn and I struggled to see where the road was. (He had broken his thumb while we were splitting wood, and he was the one to drive home.) Right now we are having an enforced staycation as he recovers from arthroscopic knee surgery. We had an epic grocery shopping trip this past weekend, and are all set to stay home for a while. Friends stand ready to help as needed.

I feel a great deal of sympathy for the genteel ladies in 18th and 19th century novels, who lose their ability to support themselves with fine needlework when their vision weakens. I’ll say this for knitting: many experienced knitters can knit by feel alone. To a limited extent, I can as well.

Cost/benefit analysis of medical procedures is something I think about, and here I am, having more expensive medical procedures when the length of time I’ll be able to use those shiny new intraocular lenses is a great unknown. Still, this is a major quality of life issue, and I am grateful for excellent health insurance which will pay for these surgeries without a quibble.

Sunday, July 3, 2016

Conference Fever

Does it sound strange to spend a weekend with 300 lung cancer patients and caregivers? Does it sound gloomy or frightening? It turns out that if you are a patient or caregiver, such a weekend could be a highlight of your year, one filled with hope and fellowship.

In late April, Robert and I set out on a two week trip that combined conference going with vacation. Our first stop was Burlington, VT, where we attended a day-long Lung Force Expo. This was an interesting day, filled with good information about managing one’s health with a serious lung disease and with information about the great promise of lung cancer screening. I was able to meet some fellow patients and some doctors who are relatively close to me in what is a terrific little city to visit. It also served as a warm up event for what was coming up next: the annual HOPE Summit put on by LUNGevity in Washington, DC.

We flew from Burlington to DC, thanks to a travel grant from LUNGevity that paid for my airfare and for two nights at the hotel where the conference was held. I am very grateful for this travel assistance, awarded to many first year attendees, because it made it possible for us to find out how valuable conferences can be. It was also terrific to avoid the all-day car trip that would have been necessary otherwise. Robert has been dealing with a painful knee for several months, and flying was a lot less wear and tear on our bodies. 

It was heartwarming to arrive at the conference site and enjoy mutual instant recognition with many of the people I have met on the Internet since I started reaching out to the lung cancer community. The feeling of comfort grew as the three days passed. The conference organizers made sure to mix us up so that we would meet as many people as possible, and I discovered that I could sit next to anyone and enjoy a friendly, informative, supportive exchange. Lung cancer patients are a tribe, and conferences are where we gather to celebrate and support each other.

They are also where we gather to learn. In the course of three days, I attended an intensive day devoted to improving advocacy and outreach and sessions on research, nutrition, clinical trials, and story sharing. There were also some sessions for caregivers that Robert attended, though he said those sessions were much more emotionally searing than the concurrent sessions for patients and survivors.

Besides the formal sessions, there were serendipitous meetings with other attendees in the unscheduled times. Where else could we meet a couple in the bar where the man had been in the same clinical trial I was in and had had all the same side effects, plus rapid onset cataracts (which I was beginning to develop)?They emailed me the name of the doctor who had fixed his eyes, in case I needed to see a specialist in the future. Where else could I introduce myself to one of the doctors who discovered the driver mutation that I have, and enjoy a very warm and informative short conversation?

What did we look like as a group? LUNGevity had a very talented professional photographer there named Randy Elles, and he took this wonderful group picture. Both Robert and I are in this picture.



Randy Elles also took portraits of anyone who visited his photo booth, and he took this picture of Robert and me:


















What was Robert’s take on these experiences? He’s been letting me be the one who digs up information, and he agreed to go with me to these conferences without being excited by the prospect of attending workshops. When I asked him, he said “I wasn’t bored.”

It turns out that there many conferences, many more than I could possibly afford to attend. A few weeks after the HOPE Summit, the Lung Cancer Alliance held a conference in Washington DC where participants got to go to Congress and advocate for increased research funding. How cool would that be? Recently, Free to Breathe held a Lung Cancer Leadership Conference in Minnesota, also focused on advocacy and including updates on research into the biology of metastasis. Then there are all of the professional conferences such as the ASCO conference held in Chicago in June, many of which are very happy to admit patient attendees (and collect an entrance fee in the process that can be pricey).

Right now I am working on the logistics of attending a different kind of conference, the Targeted Therapies in Lung Cancer Patient Forum, to be presented by CancerGrace in August. There will be no sessions on advocacy or fund raising, simply a group of oncologists getting up-to-date information to a group of patients. We have Robert’s knee surgery and my cataract surgeries to get through between now and August 20, but I am increasingly confident that I will be able to attend. I can hardly wait to get together with my tribe again - and to learn information specific to my lung cancer variant that just might extend my life.

And, I’ve estimated the cost of a return trip to the HOPE Summit next year, and I’m working it into the family budget.

Monday, April 25, 2016

Anita's Excellent Adventure: I Speak Before the FDA ODAC

During a clinical trial clinic visit in January, my trial coordinator at Roswell Park Cancer Institute asked me if I would be interested in speaking before the FDA’s Oncologic Drug Advisory Committee about my experience as a patient taking the experimental drug rociletinib. Clovis Oncology, the company that makes and is testing the drug, was hoping to receive accelerated approval to start being able to sell this drug on the market, and a hearing scheduled for Tuesday, April 12 before this important advisory committee was key. The company was looking for patients to speak about their experience with the drug. 

I immediately said yes. Such opportunities are rare, and it’s exciting to have an opportunity to be part of the important process of drug approval beyond taking a drug as an experimental subject. As a bonus, the hearing would be held in Silver Spring, MD, near where our daughter lives, and I would get to see her and her husband.

In February, I talked with an executive from Clovis, and he confirmed that the company would like me to speak, and would pay my travel costs. The following week I found out that my cancer had started to progress after two dose reductions of the trial drug, and I was no longer in the clinical trial. I immediately emailed my contact at Clovis, told him I’d been booted from the trial, and suggested that I might no longer be a good candidate to speak before the ODAC. I received a most gracious response back saying that they still wanted me to speak. To quote from the email, “If you are still up for it, it would be an honor and a privilege to have you speak to the Committee.” I was up for it.

A woman from an independent consulting firm contacted me to make arrangements. She arranged my flights and sent me a general outline of how these presentations are usually structured. This way Clovis did not know what I was going to say; my talk was not going to be reviewed or approved, and I was to speak candidly.

I didn’t fly first class, but this was a very comfortable trip. Clovis sponsored a dinner at the hotel where the other patients were staying with their families on Monday night, and we enjoyed meeting each other and sharing a delicious meal. Besides me, there were family members of a man who had died but who had five good months on the drug, an 84 year old man who had a nearly complete response, an army officer in his 40’s who had been diagnosed with stage 4 lung cancer while serving in Afghanistan, and Celia, a fellow blogger who I’ve been reading for many months. You can read her post about this experience at https://celpeggy.wordpress.com/2016/05/01/my-co-1686-speech-speech/. When I first found out about this opportunity for patients to speak about their experience, I thought to myself that Clovis really needed to have Celia speak to the ODAC, because she has been stable on rociletinib for more than 2 years, a remarkable run. And there she was!

Here’s a picture of me with Celia, my daughter Ana, and her husband Michael:

 

All of the patients and families, and a representative from Clovis on the far right. We came to speak from California, Oregon, Florida, New York, and Maryland.



The next morning there was a car at Ana and Michael’s apartment at 7:00 AM sharp to take us to the FDA headquarters at Silver Spring. The hearing wouldn’t start until 8:30, but our group needed all that time to get checked through security, which is as tight as at an airport, to sign in, and to find our seating section. Ana and Michael sat behind me. We would be speaking during the public comment period, and I drew number 4.

The hearing was very formal, with a uniformed designated federal officer and chairperson at the head table, members of the ODAC at two tables set up perpendicular to the head table, and a group of chairs for the drug company’s delegation to the left. A stand and microphone were set up near the designated row for open public hearing speakers. It was a big room with quite a few seats for the public and press to attend, and it was full, because there was a lot of interest in this particular hearing.

After opening statements, Clovis Oncology had 45 minutes to make its case. Using a powerpoint presentation, it presented data collected and analyzed from two phase 2 clinical trials, one of which was my trial. Clovis’ representatives discussed the pressing need for additional treatments for non-small cell lung cancer and rociletinib’s efficacy and safety. Dr. Ross Camidge, a leading clinical oncologist an researcher, discussed how the drug could make a positive difference in a clinical setting. The numbers all looked good to me as a lay person without the tools needed to analyze statistics on the fly.

Then the hearing was turned over to the FDA, who had 45 minutes to discuss their analysis of Clovis’ findings. They had a lot of concerns, especially about the drug’s safety and about the company’s proposal to increase the drug’s recommended dose by 25%. They were also concerned about the design of the phase 3 trial that is already in progress, saying that they doubted that the trial would prove one of the two objectives that the company wants to prove: what is the best dose of rociletinib.

The safety discussion was personally interesting to me, because the FDA is very concerned about the high incidence of QT interval prolongation observed during the trial. This is the side effect that ended up getting me booted from the trial  because I could not tolerate an effective dose of the drug (although the reason listed for me is probably disease progression). I was getting EKGs every three weeks, but once this drug is approved for clinical use, patients are unlikely to be so closely monitored. QT interval prolongation is silent, you do not feel it, and it can cause sudden death. I also learned why I had both hyperglycemia and QT prolongation. As rociletinib breaks down in the body, it produces two metabolites that are associated with these side effects. These metabolites are broken down by NAT2 acetylation. 40-60% of white and black people are slow NAT2 acetylators. The metabolites build up in the system for these people, resulting in side effects. I’ll bet you a dollar that I am a slow NAT2 acetylator.

After the FDA presentation, the hearing became a question and answer period, with members of the committee asking Clovis representatives for further explanations of their data. There were a lot of questions, and this section of the meeting ran over time. I’m afraid that the poor Clovis team must have been in a pool of sweat during and after this ordeal, as many of the questions were quite specific about aspects of the studies such as sample sizes.

My daughter the biostatistician was eating up this discussion. Later on she explained that many of the questions were probably based on statistical computations that committee members would be capable of making from the data presented. Her own back-of-the-envelope computation led her to think that the sample sizes in the phase 3 trial that is underway would be plenty big enough to prove efficacy compared to the standard of care treatments that rociletinib is being compared to, but not big enough to settle the question of best effective dose.

After the questions were done, we had a short break, then our group gave our statements, along with a doctor who spoke in favor of the drug and a representative from a public interest group who spoke against it. My nervousness transformed into nearly calm focus, and I spoke clearly. My statement was honest about my side effects, informative about how my medical team found a successful way to control hyperglycemia. and positive about my good quality of life and belief that patients and doctors need options due to the individuality of cancer.

After we spoke, the hearing switched gears, At this point, the FDA asked the committee members to make statements about their opinion as to benefit versus risk with this particular drug. The comments were cautious and concerned, and many of the speakers said that they were moved by our statements. Then the FDA asked the committee to vote on whether the FDA should wait until the phase 3 study was completed before approving rociletinib. The committee voted 12-1 in favor of the question. This was a very disappointing end to the hearing for Clovis Oncology. Drug approval may still happen, but not for more than two years in the future, as the phase 3 trial is not expected to conclude until 2018.

As we waited for our car, there was Dr. Ross Camidge on the sidewalk waiting with us. I went over and shook his hand, and thanked him for everything he is doing to advance the treatment of lung cancer. It was like meeting a rock star.

Our work was done, so I went home with Ana and Michael. After lunch, we went to the zoo. It was a pleasant sunny day, not too hot, and we were rewarded by seeing many animals out and about.

Moving otters are hard to photograph!


The lady lions were enjoying the vocalizations of a young male next door.


The next day, a car picked me up and took me to the airport, and my excellent adventure was nearly at an end. An hour later, I was in Syracuse, getting kisses from both my husband Robert and Samwise the labradoodle.

Thank you, Clovis Oncology, for giving me this opportunity to speak on the record about my experience with taking your experimental drug. Thank you for investing in the clinical trail that gave me eight months of good quality life. Your representatives were kind and supportive, and I wish you a path to success.

New adventures start up again, beginning tomorrow!



Saturday, April 2, 2016

One Stop Shopping: The Benefits of Care at a Comprehensive Cancer Center

There are two types of centers that treat cancer: community cancer centers, and comprehensive cancer centers. I recently had an experience that made it clear to me that if you can get yourself to a comprehensive cancer center, you will likely find that the additional travel and related expenses are worth it.

I began care at a community cancer center, the Richard E. Winter Cancer Center in Ogdensburg, NY. I love this center and my doctor there, and continue to have a relationship with it - that’s where I get my bi-monthly Xgeva shot. Community cancer centers are necessary and valuable, especially for standardized treatments, but they offer little access to clinical trials and highly specialized services. I need my local center, because if I need a standard chemo treatment, it’s crazy for me to travel 5 hours one-way for the same treatment I can have only an hour from home. My doctor there is very sharp and good at seeing me and my situation holistically, but she is a general oncologist treating all kinds of cancers, and there is no way that she can keep up with the literature for my particular type of cancer, especially when it’s one where there have been a lot of discoveries and new treatments over the past few years.

Once I decided to enter a clinical trial, that meant going to a comprehensive cancer center, because that’s where the trials generally are. I’m fortunate that there is a center “only” 5 hours from my home, Roswell Park Cancer Institute in Buffalo, NY. Logistically this is relatively easy for me, because I have family nearby in Rochester. We stay at my mother’s, and it’s a win-win - access to a top institution and more time with my mom.

What are the advantages of a comprehensive center besides access to clinical trials? I see a lung cancer specialist rather than a general oncologist, and she is completely up to date in her knowledge about new developments in research and treatment. All of the other staff in the thoracic center, nurses and mid-level practitioners, are very experienced with lung cancer patients and know what questions to ask. The CT scan reports are better, because the radiologists are also specialists. 

I recently had a clinic experience that brought home another advantage: just about everything I need is accessible in one facility, and all of the departments work together to take care of patients with needs. I showed up at the clinic two weeks into my new prescription of Tagrisso, and I had a number of side effects that could have been signs of something serious. I had a nasty looking red rash on my legs and some edema, which could indicate that the drug was affecting my heart. I was also already scheduled for a MRI of my brain because I had had a pesky headache for a few weeks. When I saw my doctor in the morning, she issued orders and what was supposed to be a leisurely day became a busy one. By the end of the day, I had received: a full round of blood work, a doctor visit, EKGs, a trip to the dermatology department where the rash was biopsied, an echocardiogram, a brain MRI, and a follow-up with my doctor. Besides being able to get everything I needed in one place in one day, everyone everywhere was kind, calm, and professional, never indicating that squeezing me into their day caused inconvenience.

By the way, the echocardiogram was probably the most interesting test I’ve ever had. The technician was a very warm and friendly woman, and she enjoyed showing me my heart in action, saying things like, “And here is the miracle of all four ventricles visible at once!”

By the time I left, I had good indications that my heart is not being affected by the Tagrisso. Whew! A call the next day let me know that my brain is free of metastasis, and the dermatologist called the next week to say no big problems were found in the skin biopsy.

While I continue my relationship with my community cancer center, I cannot imagine discontinuing travel to Roswell Park now that the clinical trial is over for me.

Here is a map of institutions that are members of the National Comprehensive Cancer Network (NCCN). Source: http://www.nccn.org/members/network.aspx


Monday, February 29, 2016

A Tale of a Trial

If there are demerit points for bloggers, I’ve surely earned quite a few by going through a clinical trial from entrance to exit without blogging about the experience at all. I will do my best to make up for this omission of potentially useful information with a synopsis of my experience.

If you have decided that a clinical trial might be your best next option, the first step is finding a clinical trial for which you match the profile of a qualified participant and that is at a logistically possible location. When my search for a clinical trial began in earnest in March 2015, I knew that there were two possible drugs that might be my best second line of treatment. One drug, AZD9291, had closed its trials and was moving towards FDA approval. The second drug, CO-1686, also called rociletinib, had an open trial at Roswell Park Cancer Institute in Buffalo, NY. I met the initial qualifications and I have family in Rochester, just an hour and a half from Roswell. So, game on!

How does a clinical trial start? With paperwork: the informed consent form. The trial I participated in was titled “A Phase 1/2, Open-Label, Safety, Pharmacokinetic and Preliminary Efficacy Study of Oral CO-1686 in Patients with Previously Treated Mutant EGFR Non-Small Cell Lung Cancer (NSCLC)”, and the consent form was 26 pages long. I click right through online consent forms for software upgrades and the like, but I read every page of the consent form the night before the day when I would sign it, April 9, 2015.

For this trial, the next step after signing the consent form was a biopsy of my cancer to see if I had developed a T790M mutation during my first line of treatment. We biopsied a hot lymph node in my neck on April 27, 2015. Then I waited. And waited. And waited for results. It took about three weeks time, which were long weeks, as it was becoming pretty evident that my first line of treatment was failing. Finally the word came on May 15 that I was positive for T790M. 

I took my first dose of the experimental drug on June 11, 2015. This day began a new schedule that would take top priority in my husband’s and my lives for the next 8 months: travel to Roswell every 3 weeks, plus additional travel for CT scans. We could not have done this without support. A dear friend offered to housesit and take care of our pets, and he came to our home nearly every time we went to Roswell. My mother gave us a home away from home in Rochester, treating us to home cooked meals and relaxed evenings reading and watching the news. As an unexpected bonus, special cancer treatment coverage included in my health insurance paid all of my copays and reimbursed us for our travel expenses, because Roswell is a center of excellence in cancer treatment.

After the trial began, there was more paperwork. I was responsible for keeping a log of when I took each dose of my medication. I also logged daily tests of my blood sugar levels. These logs were turned in at each clinic visit, along with all pill bottles and any unused medication. On clinic days I filled out surveys and signed a few additional informed consent forms.

Side effects: there were quite a few, and at times my ability to adapt was put to the test. They included:
  • Hyperglycemia. This began within two weeks of beginning treatment, and for a while I experienced very high blood sugar readings, reaching into the 300’s and 400’s. I spent one night in the observation unit at a local hospital having my blood sugar levels reset with insulin, as the medications prescribed to control the hyperglycemia had not yet become effective. At first I was prescribed metformin and glimepiride, and they were not effective at making my blood sugars become stable. The metformin also made me feel terrible, with exhausting malaise and diarrhea. I cut way back on my intake of carbohydrates which helped with the blood sugar levels, but in combination with the metformin caused me to lose weight rapidly. My trial oncologist decided to work with my family doctor to get my hyperglycemia under control, and he put me on a different drug, Jardiance. This drug worked. My blood sugar levels stabilized, and so did my weight as my diet returned to normal. I also shed that pesky malaise.
  • Muscle cramps. At night time, my legs and feet would cramp painfully. I learned not to stretch in bed, and to walk the cramps away. This was annoying but tolerable.
  • Stuffed up ears. In August, I had an upper respiratory infection which resulted in swollen eustachian tubes that took months to unplug. This side effect probably was the most annoying one I experienced. I didn’t like not hearing clearly, and my husband surely got tired of me asking him to repeat nearly everything he said to me. I believe the slow healing from the infection was caused by lower than normal counts of both red and white blood cells.
  • QT interval prolongation. This is the side effect I could not control, and which resulted in the end of the trial for me. Long QT intervals in the heart rhythm are bad, potentially resulting in sudden death. Twice my QT interval went over the upper limit defined in the trial protocol, and as a result twice my dosage of the experimental medication  had to be reduced. My final reduction was in mid-December 2015, a week after CT scans showed my cancer to be stable. I was now taking half the dose that I was taking at the start of the trial. CT scans done 8 weeks after that dose reduction revealed that my cancer had started to grow again, both in the primary tumor and lymph nodes, plus I had a brand new pericardial effusion. The conclusion: I could no longer tolerate an effective dose of the medication. 
My listing of side effects above might sound discouraging. I need to add that I had many, many days when I felt good during this trial. Overall, I would rate quality of life as decent to good to great, depending on the day,  particularly considering the alternatives available to me during the time of the trial. I have absolutely no regrets, and a great deal of gratitude that this treatment was available to me.

Sayonara, clinical trial. Patients say they are kicked off of or booted from a trial, and that’s what it feels like. I didn’t expect the trial to end for me when I went to Roswell on February 18. I had to make a decision as to my next step right then and there, and that was nerve wracking. Chin up, though. I got through the day, and I have not shed a tear. I would sign up for another clinical trial in a heartbeat.

Fortunately there is a good option for my third line of treatment - that drug that had closed its trials back in March 2015. It is now FDA approved, newly named as Tagrisso, and available by prescription. I started taking it just under a week ago, and already I feel better. This is a good alternative because we think the growth of the cancer was due to me not being able to take enough of the drug, not to the cancer becoming resistant to the drug. If resistance was the issue, Tagrisso would be less likely to be effective because it goes after the same target as rociletinib.

I have more trial related news, but that is best saved for a new blog post as this one is quite long enough, and doesn’t even have any pretty pictures to accompany it.

Thursday, February 4, 2016

World Cancer Day: Honoring My Online Patient Community

Today is World Cancer Day, and my thoughts turn to my relationships with other lung cancer survivors. How does one meet other people dealing with the same disease you have? It’s not easy. Doctors and nurses are bound by confidentiality regulations, so they can’t introduce us to each other. I live in thinly populated northern New York, so there aren’t many people in my situation near me. There aren’t support groups near me, indeed there don’t seem to be many support groups for lung cancer anywhere. The joke is that organizers can’t keep the groups together because the participants keep dying.

When I needed to find others who really, really understand, I turned to the Internet. Lung cancer patients have built friendly, lively, and supportive communities online. We friend each other on Facebook, we follow each other on Twitter, we find out about each other’s blogs and read them. We have organized Twitter chats where we trade information and thoughts with patients, medical professionals, and advocates. A handful of people who are very generous with their time have built a website, lcsmchat.com, that pulls us together. We also meet on patient support forums and websites like inspire.com, smartpatients.com, and cancergrace.org.

I will inevitably leave someone off my list of people with whom I have an online relationship that is important to me, but here are some people who give me strength and make me smile:

Janet. She is everywhere, posting information on research and patient empowerment on all of the online communities that I frequent, flying hither and yon to do presentations, organizing Twitter chats and other group projects. Her blog is the first lung cancer blog I followed. Besides being a retired engineer, she is also a science fiction writer.

Linnea. She has an artist’s eye and posts the most marvelous links on Facebook, from the mysteries of nature to high fashion. She has been living with lung cancer for 11 years, and has participated in three phase 1 clinical trials, where she has been one of the first people in the world to take a new drug. That is bravery.

Craig. He has the same mutation I have, and was in a clinical trial for the newly approved Tagrisso, a drug that may be my next line of therapy. He’s currently in a rough patch, beating back new progression with chemo and trying to line up his next clinical trial. He gives great blog, filled with honesty and humor. 

Celia. She is in the same clinical trial that I am in, and about to celebrate two years of stability. Once a month she blogs about her treatment with great humor. She’s also a retired engineer, so her blog is strong on facts. She has reached out to many on the inspire.com forums with information and tactful empathy.

Denise. She is another longer term survivor of lung cancer who is very well informed and generous in reaching out to others with information and treatment ideas on the patient support forums. She has a big heart and lots of good ideas. She suggested today’s blogging activity by several lung cancer bloggers on this theme.

Neal. She’s a new online friend with a very entertaining blog. She’s also learning how to knit!

Tori. One of the first blogs I found, she’s a mother of young children going through a second major cancer in her lifetime. She also wields humor skillfully, and is very open about the emotional side of what her cancer means to her loving family. She and her husband recently opened the Pointless Brewery and Theater in Ann Arbor, MI, and I was glad to be a backer of their Kickstarter campaign.

Nancy. I met her on SmartPatients.com. She and her husband ended an idyllic retirement in the midst of her illness to make a new home for their daughter and grandchildren. She also deals with a long-term autoimmune disease on top of her lung cancer. We spent a few hours together enjoying lunch and a long chat this summer, and we are looking forward to seeing each other again in a few months at the National Hope Summit.

  Nancy and I do lunch.

Deana. She is @FacesofLungCancer on Twitter, and is a pioneer in using the Internet to pull everyone involved with lung cancer together to create the community we have today. She is tireless and skilled and warm.

Naomi and Kelli, the two people I interviewed in November 2015. We shared much with each other as we created the interviews together, and I’m deeply grateful to them both for being so open to me.

Then there are the people I interact with on inspire.com’s forums. Judy, who is an encyclopedia of knowledge and bracingly candid, answering questions posed by everyone who posts. Louise, who posts fun videos and snarky e-cards to cheer us up, and also reaches out to others with the deepest empathy I’ve ever witnessed. Kate, whose husband was in the same trial I’m in for a while. 

It takes courage to reach out (and a device that connects to the Internet), but more and more of us are doing so and discovering that we are not alone. The information we share with each other is valuable, and the friendship we share is priceless, and our community has no borders.



#WorldCancerDay #lcsmchat #lcsm

Monday, November 16, 2015

Profiles in Lung Cancer: Kelli “Cat” Joseph, Survivor

Profiles in Lung Cancer: Kelli “Cat” Joseph, Survivor

Lung Cancer Awareness Month 2015
Day 16: Kelli “Cat” Joseph, Survivor
“If there was ever a time in history to get lung cancer, that time is now.”

Each day during Lung Cancer Awareness Month (November), a lung cancer blogger will share a profile of someone involved with lung cancer. The person profiled might be a patient, caregiver, advocate, researcher, or healthcare provider.

My own observation about the online lung cancer advocacy community: although smoking causes an awful lot of lung cancer, most advocates whose work I know about are never-smokers. Why aren’t more people with a history of smoking involved in advocacy work? I don’t know. The stigma against lung cancer runs deep in our culture, so shame and guilt may keep people silent, even when it’s in their own best interest to speak up.

I’ll say up front that I am an ex-smoker. I quit in 1981 after accumulating a 7 pack-year history. My cancer’s driver mutation is not usually seen in smokers so smoking probably didn’t cause it per se, but no one knows whether or not the first mutation that started me down this path happened back then, waiting patiently for other mutations to join it and create a cancerous cell. This post is Kelli’s show, not mine, but I have first hand experience from both myself and my loved ones of how cultural influences can make it easy to smoke, and of how hard it is to quit.

Kelli “Cat” Joseph is open about being an ex-smoker, and she is also open about believing that smoking caused her cancer due to the type she has. She quit her tobacco addiction 6 years before she was diagnosed with lung cancer. I’m very happy that she was asked to be interviewed during Lung Cancer Awareness Month to share her perspective on and experience with this disease. 

I interviewed Kelli over the phone, writing furiously as she shared her experience and ideas. She also shared her warmth and humor with me, and I hope you can see a glimmer of them in the interview.

Kelli, tell us about yourself.

I’m a 48 year old lung cancer survivor, currently NED (no evidence of disease). I am a wife to a gorgeous, caring, patient husband, and we are parents to a beautiful, loving, smart teenage boy who has been so resilient throughout the ups and downs of this cancer ordeal. He is amazing. I’m also a business owner. I have a bar called The Cuckoo’s Nest.

That sounds like a recipe for being very busy. Is it fun to be a bar owner?

Yes it is, and it’s even more fun now that the bar is smoke free. When I think of how much second hand smoke I breathed in from the age of 17, I’m very happy that smoking in my bar is now against the law.

What is your diagnosis, and what treatments have you had?

I was diagnosed with squamous cell lung cancer on Friday the 13th, January 2012 after a year of being treated for asthma. Nope, I didn’t have asthma after all. I had a lower and middle lobectomy of my right lung, followed by 35 rounds of radiation. Then I had a recurrence in a lymph node on my heart in 2013. My local doctors wouldn’t touch it so I went back to Northwestern University in Chicago, where the awesome surgeon who did my original surgery said she could take care of it. She did a VATS (video assisted thoracic surgery) procedure that involved going into the pericardial sac. I struggled with pneumonia and shingles for a year while recovering from this surgery. I’m also thankful for the fantastic, groundbreaking lung cancer oncologist who keeps me alive today. I’ve been NED since my last surgery.

What is a typical day for you?

I keep up with lung cancer social media as best as I can, but my family and business keep me busy. I do my best to enjoy each day. I couldn’t do any of this without help from family and friends because tiredness and nerve pain are still issues for me.

What is something that we might not know about you?

I’ve been heavily involved with an online smoking cessation support community for 12 years. Not everyone with lung cancer was a smoker, but the majority were and the more people I help quit now, the less disease we’ll have in the future.

My quit smoking sponsor’s birthday is August 1st which is also World Lung Cancer Day, and he was devastated when I was diagnosed. This year I decided to go all out to celebrate World Lung Cancer Day: I went sky diving. I loved it, and I’m going to do it again!

Here’s an odd story from my life: 18 months before I was diagnosed my beloved cat Rocco died of lung cancer. (Yes, I had smoked in the house when he was young.)

What do you want us to know about lung cancer?

The polarization between lung cancer victims who were smokers vs. non-smokers needs to end now so that we have a chance to get more funding. Funding for AIDS increased when people with AIDS stepped forward and said we don’t deserve this, no one deserves this. We need all lung cancer people to unite and step forward in the same way. We perpetuate the stigma when we ourselves in our LC community are shameful about smoking history.

Every lung cancer patient has had the experience of telling someone he or she has lung cancer, and having that person respond by asking “Did you smoke?”, rather than by saying they are sorry, or asking how you are doing. How do you respond to that question? Does it sting?

This question doesn’t sting me, because I hold myself accountable for my prior actions. I love this question because it gives me a chance to advocate against cigarettes. I grin and say, “Yes I did. If you smoke or have a loved one who smokes, please, please quit or help them to quit!” Hey, I don’t mind being a bad example, I’ve been one all my life one way or another. I’ll admit, there are ways of being a bad example that are a lot more fun.

The lung cancer advocacy effort focuses on a message that “anyone can get lung cancer”, and can get perturbed when major cancer organizations focus on smoking cessation as part of lung cancer awareness campaigns. How can we better balance positive attention to our disease with an important message of disease prevention that could save many lives?

Common sense would dictate that if we could eliminate smoking, we could eliminate 80% of lung cancer cases. Just think of how many resources that would free up to help non-smoking lung cancer victims. We need to come together and support lung cancer prevention as well as better treatments.

I support low dose CT scans for everybody starting at age 30, with repeat scans every five to ten years for those who have negative scans. Anybody can get lung cancer, so let’s screen everybody, not just people over age 55 with a long-term smoking addiction. I hope that’s something the entire LC community can also support.

What brings you hope?

If there was ever a time in history to get lung cancer, that time is now. New discoveries are happening in leaps and bounds. Government funding is increasing but we still have a lot of work to do to make it comparable to the funding that is awarded to other, less deadly cancers.

Twitter handle: @thecuckoosnest


Yesterday’s interview with Lucy Kalanithi was on Lisa Goldman’s blog Every Breath I Take.

Tomorrow’s interview with Kim Ringen will be on Tori Tomalia’s blog A Lil Lytnin’ Strikes Lung Cancer

All profiles can be found the day after posting on the #LCSM Chat blog at http://lcsmchat.com/. A list of links to all the profiles on the original bloggers’ pages can be found at on the #LCSM Chat site on the Profiles in Lung Cancer page.