Monthly Archives: August 2009

Personalized Cancer Care on ABC World News

In late May, I got a phone call asking if I would appear in a report being filmed for ABC World News. This coincided with the annual ASCO (American Society of Clinical Oncology) meeting in Orlando, and the focus of this meeting was personalized care. A producer for ABC had seen a story about my treatment at MGH that was published in the Boston Globe on March 3rd, 2009  and felt that it was a good illustration of this approach. Over a period of two days, a crew filmed and interviewed Dr. Leif Ellison, Dr. Alice Shaw (my oncologist) and myself. The piece appeared on the ABC World News with Charles Gibson on June 2, 2009.
My brother John and my sister Bink were visiting us the night it aired. Seeing the before and after CT scans of my lungs, broadcast around the world no less, was pretty amazing.
It generated a lot of excitement among other lung cancer patients as well, with the hospital receiving over 2000 phone calls. Only a small number of these callers would fit the genetic profile required to enroll in the PF-02341066 trial and therefore, many were disappointed. That “now you see it, now you don’t” image of my cancer was something that so many people were looking for.
There are two things I should clarify. The first is that only approximately 4% of lung cancer (NSCLC) patients test positive for the ALK mutation. Given how many individuals are diagnosed with lung cancer (219,000 in just the United States annually), this still represents a significant number of people. For those who don’t have the ALK mutation, there are therapies that target EGFR (10% of people with NSCLC)) and K-RAS mutations (15%). But I feel the most important thing to realize is that this is the beginning, the tip of the iceberg if you will, of a radically new approach to treating lung cancer and, cancer in general. As researchers continue to explore the genetic underpinnings of cancer, more targeted therapies will emerge.  The hope is that some of these treatments will prove  to be not only effective, but also that the side effects will be much more manageable than traditional chemotherapies. Quality of life is every bit as important as quantity of life.

The second point is that the treatment I am receiving is not a “cure” for cancer. My cancer is being managed or controlled.  This is still absolutely amazing.  I have terminal lung cancer, and yet I continue to live.  And I believe I will, for at least several more years, something I couldn’t have said prior to starting this treatment.

And now a story about what we are all really looking for in life.  My daughter was googling my name and came up with a blog post from July 12. Sadly, Farrah Fawcett had just passed away after a protracted battle with anal cancer. The person writing the blog had seen the ABC news piece and wrote the following:

“Here’s the link to the ABC News Video on YouTube on their “Personalized Cancer Care” report. It shows the promise of smart drug chemotherapy and genetic profiling. The woman in the video who finds her miracle cure is Linnea Duff. I was hoping that Farrah would be the next Linnea Duff.”

Well. When I started college in 1977 the poster of Farrah and her thousand watt smile and her red speedo was on the wall of more dorm rooms than I could count. Never would I have thought that some day we would be mentioned in the same sentence. Unbelievable that now I possessed something that was unattainable for Farrah: more time.

PF-02341066 trial moving to Phase III

David, Peter and I drove to Boston early this morning for my routine trial appointment. The trial team has decided that I only need to come to the hospital once a month now.   My scan regimen has changed slightly as well. Although I must still have scans every two months, it won’t be necessary to get the abdominal scan each time. That means no more barium milkshakes for the moment. YES for small victories.   My oncologist, Dr. Shaw, just returned from the 13th WCLC (World Conference on Lung Cancer) in San Francisco this past weekend. At the meeting, Dr. Shaw presented updated data on the efficacy of the PF-02341066 trial. The results continue to be very promising and continue to generate excitement in the field of thoracic oncology.
The trial will soon enter Phase III. Prior to FDA approval of a drug, a controlled and randomized trial must be conducted.  It will be at multiple locations around the globe and will enroll many more people.  All those enrolling in Phase III must have the ALK mutation as well as only one failed first line therapy.  The fact that it is randomized means that some subjects will receive standardized chemo rather than the trial drug. However, should they suffer adverse effects from the standard chemo, or have progression of disease at their first scan at six weeks, they will be permitted to switch to the trial drug.  A phase II of the trial will be running simultaneously (the primary goal of Phase I is to assess for safety and dose escalation, Phase II is efficacy of the drug). Those subjects who possess the ALK mutation, but have also had more than one failed first line therapy, may enroll in a Phase II of the trial. So–bottom line–you need to have the mutation.

It was also fun to see images of my CT scans that were used as slides at the presentation. She also showed us a chart of subject response and it was interesting to see the hard data. Although my own response was characterized by my oncologist and the radiologist as “an almost total response”, statistically it is approx. a 70%  PR, or partial response.

It is beyond me how they determine such things (although Dr. Shaw explained that the methodology is to assess a two dimensional shrinkage of tumor as shown by scans). My CT scan could hardly look much better. However, I know that we are continuing to watch an area that represents either scarring or lung cancer. Only the statistical percentage is surprising, and I learned early in this journey to not pay too much attention to numbers. I just know how good I feel and that I continue to wake up every morning.  Wasn’t it Woody Allen who said that “80% of success is showing up”?
We also talked more about how the trial drug actually works.  The mutation that I have acquired (it is not inherited and so has been caused by exposure to one or more carcinogens) means that my DNA has been permanently altered, and altered in such a way that it makes cancerous cells.  The altered gene has become an oncogene:  a gene that contributes to the conversion of a normal cell into a cancerous one.  By locating where that mutation was (on the ALK gene), researchers were able to pinpoint a target.  The trial drug (PF-02341066) is a targeted therapy.   It is referred to as cancer growth blocker.  Growth factors trigger the cancer cells to divide and grow, and cancer cells are often very sensitive to them.  If these growth factors can be blocked, it is possible to stop growth and division of the cancer cells.

PF-02341066 is a Tyrosine kinase inhibitor.  This refers to the type of chemical that it blocks:  in this case, enzymes called tyrosine kinases.  These enzymes attach to a receptor on a cancerous cell and signal it to divide.  The Tyroisne kinase inhibitor stops that signal.  In layman’s terms:  my cancer has not been cured.  It has been stalled, the growth and division of cancerous cells halted, possibly indefinitely.

Realistically, it is unknown how long this drug will be effective for.  When and if it stops working, the cancer will begin to grow again.  I hope for two things: that the cancer will be held at bay for a long time, and that in the meantime, other treatments are developed.  This is the way it is with cancer.  We, all of us with cancer, are truly at the frontier.  There is so much yet to discover, and I am so grateful to those who are dedicating their life work to this end. My very existence depends on it.

Clues before a missed diagnosis

When I tell people that I have lung cancer, they almost always ask me if I smoked. Many people with lung cancer are offended by this question, but I view it as an opportunity to educate. There is no getting away from the fact that lung cancer has been stigmatized by the perception that it is a disease of smokers (hence, brought on by their own risky habits). I don’t mind being an ambassador for an unexpected face of lung cancer: young, never-smokers. Nor do I feel that anyone deserves to have lung cancer, whether or not they smoked.

The second question is usually along the lines of “how did you know?” and “what were your symptoms?”. People are genuinely curious about (and afraid of) cancer, so if you are willing to talk about your own experience, they really do want to know. And why not. If you tell someone what to look for, they may someday avoid the tragedy of a delayed diagnosis.

I am certain that I would have been diagnosed earlier had I been a smoker.  Even though I was developing symptoms that were suggestive of lung cancer, my status as a never-smoker meant I was in a low risk category.  It would take somebody who could think outside the box to consider that possibility.

Unfortunately, a much greater tragedy had some bearing on my delayed diagnosis as well.  In the late spring of 2000 I went to see Fred Rimmele, my doctor at that time, regarding progressive weakness in my left hand and arm. Fred was a relatively new MD and I appreciated his enthusiasm, his curiosity and his energy.  I felt that he took my concerns quite seriously.  He ordered a nerve conduction test and made an appointment for me with a neurologist as well.   He also ordered a chest x-ray.  His notes from that day read  “I would like to do a chest x-ray to make sure that there are no chest lesions which would be very unusual in this young, non-smoking woman, causing brachial plexus problem.” The chest x-ray was clear–but Dr. Rimmele was aware of something that I had no inkling of.   It is possible to have early symptoms from a paraneoplastic syndrome:  an immune response on the part of the body to substances produced by the tumor.   One manifestation can be muscle weakness.

No clinical reason was found for my symptoms although I continued to follow up with a neurologist.

In June of 2001, I went to Dr. Rimmele with another complaint–nodules on my fingertips.  He sent me to a rhuematologist who also ordered a chest xray.  Once again, I was unaware that digital clubbing was another possible indicator of lung cancer.  This x-ray appeared clear as well.

I had not yet developed shortness of breath, but I believe that it would have been only a matter of time before Dr. Rimmele connected the dots.

And then the unimaginable happened.  Fred Rimmele was a passenger on one of the planes that crashed into the Twin Towers on 9/11.  It was unfathomable that he was gone: such a good guy and a fine doctor as well.  I was devastated.

At this time I was referred to a new general practitioner at the same clinic.  She was gentle, seemed caring, but was terribly complacent.  And in the end–I think she was lacking in imagination.  It is still hard not to imagine how much earlier my cancer could have been caught had she not waited so long to order a CT scan.

In April of 2003 I came to this doctor with a complaint of shortness of breath. There were also specks of blood in my sputum when I coughed (hemoptysis). She ordered a chest x-ray which reported that my lungs appeared to be clear.  In the absence of another explanation, she diagnosed me with adult onset asthma.  I neither wheezed nor had asthma attacks, but my PF’s (peak flows) were low. Even as I developed a chronic cough, hoarseness, and recurrent infections, no other cause was considered.  For two full years I was (mis)treated for asthma.

By January of 2005 I had begun to feel fatigued and unwell in general.  When I lay down at night, my lungs made an awful rasping noise.  I began to have trouble swallowing.  Finally, in March of 2005, I was coughing up a copious amount of blood.  I saw the on call doctor in the clinic on Friday, March 18th.  He felt I had a virus and sent me home.  By the following Monday I was much worse and returned to the clinic to see my doctor.  She ordered a chest x-ray which showed what appeared to be pneumonia in my left lung.  After three weeks of antibiotics and two more x-rays–it was clear that something else was going on.  The radiologist’s report read:  “The lack of change over approximate 3 weeks raises concern for alternate diagnoses, such as atypical pneumonia, abscess, bronchoalveolar cell carcinoma, or a lung mass”  A subsequent CT scan found a large consolidated area that it said was “suspicious for neoplasm”.

I was not familiar with the term neoplasm, but the grave look on my husband’s face indicated the severity of the situation.  I was admitted to the local hospital where I was treated with intravenous antibiotics as we awaited a biopsy.  I also began to educate myself about lung cancer:  just in case.

Just keep on walking

It has been my observation that there are two things you must not do if you want to beat cancer. You can’t stop eating and you can’t stop moving. It’s true for other animals and it is true for us as well–when you lie down and don’t get up again and when you stop taking nourishment, it is the beginning of the end. It is a perfectly logical way to die.
Cancer can make you very, very sick and sometimes the treatment makes you even sicker. We have all had those days when we really can’t do anything but lie in bed. There are other times that the fear and depression brought on by a diagnosis of cancer are overwhelming, and that too can be immobilizing.
But I want to tell you this: you need to fight the urge to sit or lie around. If you weren’t physically active before, you better start now. And it doesn’t need to be anything fancy–walking is actually the perfect activity.

Why walking? Because it requires no special equipment or training. You don’t need a membership. You can do it alone or with any number of partners. It’s free. It takes you places.  You can do it practically anywhere at at any time. It is truly the equal opportunity exercise.
I alway considered myself “fit”, but it was something that I was pretty casual about. No longer. I consider walking as essential to my continuing survival. I feel that I am not only helping to fight my lung cancer, I am making myself stronger and healthier so that I can better withstand the stress that treatment may place on my body.

On July 28, The British Journal of Sports Medicine published a report regarding the results of a Finnish study. 2,560 men age 42-61, none of whom had a history of cancer, had their leisure-time physical activity assessed over an initial period of one year. After an average of 16 years had passed, 181 of these men had died from cancer. Those men who engaged in moderate- to high-intensity exercise for at least 30 minutes a day were 50% less likely to develop cancer than the men who didn’t exercise.
In order to achieve the decreased risk, it was necessary to perform activities that increased individual oxygen consumption by 1.2 metabolic units.  The preventive benefit was greatest for gastrointestinal and lung cancers.

Well–this sounded like a good thing, but I sure didn’t know what 1.2 metabolic units of oxygen represented.  So I did a little research as to what sort of unit a MET of oxygen was.  I found one answer in a book by Paul D. Thompson (M.D.) called Exercise and Sports Cardiology.  He defined a unit of MET as “The amount of fitness, or cardiovascular function, required to perform various occupational, recreational, or physical conditioning activities…represented by the number of metabolic equivalents, or the systemic oxygen transport above rest required for their pursuit.”

It was hard to wrap my brain around this–if you read my previous post about the reunion with my scholarly friends and were trying to decide which one of us shared a Nobel Peace Prize and which one of us was a struggling single mother…well, I didn’t win the prize.

What I really I wanted to know was if I was achieving this level of fitness in my own walks.  I read that daily living requires ❤ METS and is considered very light exercise. Walking at a speed of 2 miles/hour also falls into this category.  If I were to walk at a speed of 3-4 miles/hour it would be considered light activity and would require 3-5 METS. Moderate activity or walking 4.5-5 miles/hour would require 5-7 METS;  jogging 5 miles/hour or heavy activity would use 7-9 METS and very heavy activity or running 6 miles/hour would use >9 mMETS.   For comparison, world class athletes engage in activities that require >20 METS.  An increase of just 1.2 metabolic units began to sound doable.

If I want to achieve an increase of 1.2 mets from my daily use rate of 3 METS–I need to walk at a speed of at least 4 mi/hour or walk 2 miles within 1/2 hour. This is my current routine at least 5 days a week, and although initially I found it a bit of a challenge (particularly going up hill) it is now easily accomplished. When I am tempted to skip this routine, I remind myself that it is essential and frankly a priority.

And now I’m going to go take a walk and I think you should as well.