Profiles in Lung Cancer – Day 12: Karen Loss – “I am living with lung cancer, not dying from it.”

As you all know, November is Lung Cancer Awareness Month. A bunch of us bloggers have gotten together and are profiling a cancer survivor, caregiver, advocate, or health care professional each day this month.

Karen Loss - HeadshotToday it is my distinct pleasure to introduce you to Karen Loss, a lung cancer patient and advocate who was diagnosed in late November of 2012 with stage 4 carcinoma NSCLC. Here is her story in her own words.

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What is your connection to lung cancer?
I will celebrate my 3rd anniversary since my lung cancer diagnosis on Thanksgiving this year.  When I was originally diagnosed, I was already a nearly 16-year survivor of concurrent primary cancers of the uterus and ovaries.  In January, I will celebrate my 19th anniversary after those diagnoses.  I am currently undergoing my 3rd treatment regimen.  First, I had a combination chemotherapy comprised of Taxol, Carboplatin and Avastin.  That was followed for about 6 months by Avastin maintenance therapy. When progression began again, I was put on my second tier treatment of Taxotere.  After that shrunk my tumors once more, I went off all cancer treatments and stayed off for about 15 months, though I still received CT scans every three months.  The last three scans showed ongoing slow growth in both tumors, but especially in the one on my hepatic dome.  The trend was undeniable, so my medical team and I felt it was time to resume treatment and with a few different potential alternatives to consider, I chose to try Opdivo/Nivolumab.  I have now had four infusions of this drug and have not yet had my first CT scan since beginning this new therapy.  That will happen in the week following Thanksgiving, and I am already looking forward to seeing what it will tell me.  During these past three years, I have never reached NED status, but the treatments I have been given have shrunk my tumors, keeping things well in hand so far.

Describe a typical day
I work full-time at The MITRE Corporation, a large research and development company in the Global Security Services division. In addition to that, I research Karen Loss Channel 8 newsand review new articles, videos and blog postings coming out each day about lung cancer in order to provide daily updates to my Trekking Through Cancerland Facebook page. I also tweet or re-tweet (Twitter handle: @CancerTrek) information about lung cancer on most days as another way to continue efforts at providing increased education and awareness.

Tell us something we’d be surprised to know about you
I published a book of letters about the first nine months of my lung cancer journey as a way to try and provide a personal perspective and hopefully inspiration to those who choose to read it. So far I have distributed approximately 2,300 copies through Amazon.com and its affiliates. Unrelated to lung cancer, I have been sponsoring children in foreign lands through Compassion International for nearly 16 years and have traveled to meet them and learn about their lives, the things they are receiving through the Compassion program, the culture of their countries (Haiti, Colombia and Ethiopia) and simply to love on my kids.

Karen Loss - w TJWhat do want us to know about lung cancer?
I want people to know that everyone with lungs (thus EVERYONE) is vulnerable to lung cancer, but that no matter what may have caused the disease, every person deserves care and compassion. Plus…the great strides in lung cancer research are providing greater hope for patients with each passing day.

What brings you hope?

Seeing stage 4 lung cancer patients on TV commercials and interviews, in documentaries, in magazine articles and blog postings, at conferences, really anywhere they have the opportunity to share with others that they are living their lives. My motto is that I am living with lung cancer, not dying from it. One day, hopefully in the foreseeable future, may we be able to consider this a chronic disease rather than a terminal one…

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Thank you Karen!

Read yesterday’s profile by blogger Samantha Mixon of Kelly Shannon here. Tomorrow’s profile of Diane Legg by Linnea Olson will be available here.

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.

Business as usual. Day at a time.

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