scifiknitter

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...

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 oncolo...

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 do...

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 professiona...

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 muta...

Profiles in Lung Cancer: Naomi Farley, Caregiver Lung Cancer Awareness Month 2015 Day 4: Naomi Farley, Caregiver “Hope is so important...” November is Lung Cancer Awareness Month, and each day 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. I knew that I wanted to interview Naomi Farley when I saw that she is a caregiver and that her husband Corky is in a clinical trial. When I talked to her on the phone and read her answers to my questions, I discovered that there are parallels between Naomi and Corky’s life and the life that my husband Robert and I share. Both couples have been together about 40 years, and each family has a child mid-20’s in age. Corky and I share the same EGFR driver mutation, and both Corky and I have retired due to our lung cancers. Finally, Corky and I are in the same clinical trial, a TIGER trial testing the efficacy o...

It’s been too long since I last blogged, and I’ll have a quick update at the end of this warm-up post. Late last fall my sister had a wonderful opportunity to go on a cruise on the Danube. It was a working vacation, because she was representing the public radio station where she works, but her price to be there was commensurate with the fact that she was on the job. She had a great time, and brought back a skein of yarn for me. Opal Sock Yarn, from its motherland! Opal makes the most interesting pre-printed sock yarns, with a wide variety of ever-changing patterns. This one appeared to be designed to be a bit chaotic, from the tiny thumbnail picture on the yarn’s wrapper: These were a pretty fast project, taking me 4 months to knit while interspersed with other knitting projects. Then again, sock knitting is what I do on the road and in medical waiting rooms and I spend a lot of time in such places these days. Focus on the socks: Gosh, my patt...