NEW GENETIC THERAPY SAVES AND EXTENDS LIVES. IF YOU KNOW SOMEONE WITH LUNG CANCER, GET THEM TESTED!
We received amazing news March 3, 2010. My PET scan showed dramatic improvement when compared with my prior PET scan just 2 months before. I am a stage 4 NSCLC never smoker diagnosed almost 3 ½ years ago.
My Mom is a TVaholic who was watching ABC news one night as they detailed a remarkable man, whose doctor’s had nothing left to offer him to treat his stage 4 lung cancer. His last chance was to have his tissue biopsied to look for the presence of a genetic mutation in his cancer cells called the ALK mutation. It turned out he was positive for this mutation and after taking an oral drug targeted specifically for this mutation a miracle happened. His cancer disappeared. The story went on to detail another man with this mutation who had significant reduction of his lung mass.
As a physician and lung cancer advocate, I had never heard of this mutation. I asked my own oncologist about having my tumor tissue tested. It took a few weeks to get the results. Shockingly my result was + for the ALK mutation and after a one month wash out period off chemo, I began taking this same Pfizer drug 1066. I am now 7 weeks after beginning this drug and the PET scan result brought tears to our family’s eyes. Findings consistent with marked improvement of neoplastic process. “Non visualization of the previously seen intensely metabolically active enlarged lymph nodes.” Remaining lymph nodes were reduced by greater than 50%. My bone metastasis also was gone. No new lymph nodes. My remaining right lung showed no evidence for previously seen metabolically active nodules. Simply amazing!
For the past 3+ years I have had problems with long range planning along the lines of ‘don’t buy any long playing records. Planning a trip even in the near future is problematic. I now feel like I’ve been given a longer leash. I feel like I can go out and buy something as simple as a shirt without feeling quilty about how many times I might actually wear it.
After just attending the IASLC (International Association for the Study of Lung Cancer) meeting, it is clear to me we need to shout it out to the lung cancer community and bring awareness to the masses of the importance of asking their doctors to test their cancer tissue for genetic mutations. There are treatments evolving for so many of these genetic mutations. This is what is so exciting about translational research (bench to bedside). This ALK mutation from discovery, testing to treatment just evolved over the past 3 years! New targeted therapies are emerging as we speak. Personalized medicine is the hot topic. The goal of managing lung cancer and prolonging lives is within sight. So remember, testing lung cancer tissue is nothing to sneeze at!
I just returned from Washington where I had the extraordinary honor and opportunity to be a part of the decision-making process for lung cancer research funding. I was nominated by Lori Monroe (LFCA co-founder) as a lung cancer advocate (and stage 4 lung cancer survivor) to be a consumer reviewer for lung cancer research grant proposals submitted to the Department of Defense (DOD). After submitting an application, writing an essay and completing a phone interview, I was appointed by the DOD to become a consumer reviewer. I had the interesting challenge of balancing my being a physician with my now being a consumer reviewer.
I am so exhilarated after returning, as I got a window into the future of lung cancer research ….and the future is quite bright. In fact, my prediction is for exponential growth in the understanding, treatment, and life expectancies during the next few years. The direction we’re headed is towards ‘personalized medicine’, where individual characteristics of your tumor are identified and treatment targets the tumor cells specifically. This will be a huge improvement from traditional chemotherapy where both healthy and cancerous cells are affected by treatment. The ramification of this is less toxicity, fewer side effects, and more manageable disease.
2009 was the first time in history the Department of Defense appropriated dollars for lung cancer research. The first question I usually get is what does the DOD have to do with medical research? If you really want to know….here goes! In 1993 President Clinton was besieged by over 2 million signatures on a petition to do something about breast cancer. President Clinton looked to the DOD as a funding vehicle and indeed Congress declared a “War on Breast Cancer,” funding billions of dollars towards breast cancer research since that time. Great progress and discoveries were enabled by this research. In later years funding was given to other cancers including ovarian and prostate cancer. This is the first year lung cancer is included. I asked why this is finally happening, and the answer I received is that it has all been a result of advocacy efforts. The squeaky wheel gets oiled, and organizations such as LCFA are starting to be heard. Practically nothing gets funded without an advocacy or lobbying group in Washington. Breast cancer, HIV and prostate cancer are direct evidence of the power of advocacy. When I was in training, HIV was a death sentence. But through ACT-UP and other advocates for HIV, it is now a disease that although not cured, is being managed successfully. The death rate has plummeted and life expectancies continue to increase.
My role was to review research proposals and look at them in a unique way. Specifically, I was asked to put on my lung cancer “consumer” hat and not my physician cap. I was asked to look at the relevance of the study and the impact of the research on lung cancer patients, survivors, and family members of these patients. I thoroughly reviewed 17 proposals and wrote an impact statement for each study. Upon arriving in Washington, I met up with other consumer and scientific reviewers in a panel of 10, and went through the proposals one by one, grading each proposal from 1-10. All voices were heard and everyone contributed. I truly believe those studies which held the most promise and merit, with the greatest impact to the lung cancer community, were eventually chosen.
Post Script: It has already been decided to reduce the money appropriated for lung cancer research to go from 20 million to 15 million in 2010. This should be our call to action for our advocates. The Veterans’ Administration spends over 350 million a year in treating smoking related illnesses, let alone all the toxic fumes and other carcinogens our smoking and non-smoking soldiers are exposed to. Once upon a time the DOD handed out cigarettes to our troops and many veterans became addicted to cigarettes. One would think that the DOD shares some responsibility in caring for our veterans. We need to lobby our Congressman and Senators to reverse course and add additional monies for lung cancer research. It’s an investment that could pay huge dividends in reducing health care costs through prevention and early detection. Health care reform you can believe in.
Michael
Dr. Michael Weitz is a stage 4 lung cancer survivor, an ER Physician, an advocate representative on LCFA’s Scientific Advisory Board, and lives in the San Fernando Valley in Southern California with his wife Janice and their three delightful teenage sons.
Thank you so much for writing and your kind sympathies. We have had an interesting few months. Not long after losing dad to lung cancer, our shop was broken into and a lot of tools and equipment was taken, including Matt (my brother) and my laptops we keep in the office. I am sorry to say I lost everything including pictures of our event. Let me tell you a little about it though, because it was a great night.
We planned it for November 5th and it was really a struggle to pull it off, we found out a few days before that the city was not going to let us use the fire station after all, but we already had signs made and posted and radio announcements done. So I called the local community center and asked if they had space for us and they did but it cost 100 dollars an hour. So I thought that was out, but on Nov 6th the community center called back and said they had received calls from the fire chief, the police chief and just about every fire fighter in the city wanting to know if there was anything they could do to “donate” the room to me for the night and they came through and said yes. In fact, they were so touched by how much dad meant to this community they offered to host it for me every November as long as I did the event. I was thinking all would be well. I just had to get the word out about the change of venue, so I spent all day making new signs that directed people to the center.
Well the next morning on the 7th, dads kidneys failed and his breathing became very labored. He was no longer conscious except rare moments when he managed to open his eyes. His hospice nurse told us he was “actively dying”, what a stupid phrase, but I understand what she meant. So I called my best friend Veronica who been helping me with this all along and told her she may be on her own that night and of course she was more than willing to do it. I also called Target because they had arranged to have several volunteers come help us as well and I wanted to make sure that they were still coming.
I have to tell you that I worked at Target as a team leader for 7 years before I quit to help our family business, and my mom worked there as a front end leader for over 3 years, so Target is like a second home to us. When I explained what was happening to dad, the 4 volunteers they had arranged turned into 17 including the store manager Jay and most of his executive team. I was so touched. They went around to everyone in the community center (guys playing basketball, girls doing yoga, everyone in the pool, and invited all of them to come in and support us) I ended up going to the event as well, because it seemed like the only thing I could do to make a difference at that point. We had the fire department come over (I should mention that my brother Matt is a firefighter, so they have been with us from the beginning) and so many people from the RV parks who knew dad and all of our family and friends. All of the firemen painted their thumb blue and they wore white cancer bracelets along with their red 911 ones.
When Dad was in the hospital, there was a garden that he would have us wheel him to and drink his coffee every morning. On the wall of that garden was a saying by Ralph Waldo Emerson that said “What lies behind us and what lies before us are tiny matters compared to what lies within us.” We passed that wall everyday and could not help but realize that the very best moments in life come from within us, we create those memories, but at the same time, the very worst battles of our life can also come from within us.
We put that saying on a large piece of white glitter paper and surrounded it with luminaries’ that spelled out help us shine a light on lung cancer. It was a great way to set the tone for the night and started so many conversations. It gave people a quiet peaceful place to share their stories, and as glad as I am that we gave out so much information that night, I am also glad we accidentally found a way to share some of the emotions involved in dealing with such a disease.
Besides the people at the community center who came in there was not much attendance from the general public, but I think the sudden change of venue did not help. All in all though I bet 150 people came out, we gave away all of our materials and even the photo copies the community center let us make. I met 3 people who are currently battling lung cancer and family of another 5 or 6 who had lost someone to lung cancer, including one of our Target volunteers and one of our firemen. It was a great night and when the Director of Activities from the community center stopped by as we were cleaning up, she had several offers for me that were left at the front desk. One, from the manager of Tunex (who was playing ball there) said he would do anything we needed to for next year, he will send people out to clean people’s car lights (shine a light) anything we can think of, he will make it happen. The community center and Target will help again anytime and so will the fire department. Then we have Matt and my RV and Marine shop and my mom’s scrapbook club, all willing to do more events.
Even without public attendance it was an inspiring night and well worth our time and effort. I am so glad it came together and can’t wait to do something else hopefully sooner than next November. I am totally open to new ideas. I would love any tips on what to do next and I would also love to do something in Salt Lake City. I met a few people at the Huntsman Cancer Institute that I bet would help if I asked. As soon as we get back on our feet from this break in, I want to keep working with you to raise awareness. I just need a little guidance, but I will definitely be at your service.
