I've often written about the pro's and con's of clinical trials. On the positive side, the only way we make progress in treating cancer is through evaluating medications and other treatments in clinical trials. On the other hand, clinical trials aren't for everyone.
But whether an inspiring story comes from a clinical trial or something else, it is worthy of sharing.
A woman who I am incredibly honored to call friend is still on this planet due to a clinical trial. One that was made available for certain people with non-small cell lung cancer; those carrying a mutation known as an EML4-ALK gene rearrangement.
It's helpful to take a quick aside at this point. There are several "levels" of clinical trials. Phase 1 trials are the first test of a drug or treatment on humans. After a drug is tested in test tubes and perhaps animals, a small number of people are recruited to use the drug in order to assess safety, and possibly dosage. Phase 2 clinical trials involve more people, and look at efficacy as well as safety. Phase 3 trials ask the important question, "Is this treatment better than other treatments we have?" before the treatment is FDA approved.
The treatment that my friend, Linnea Duff, was given, was being evaluated in a phase 1 trial.
In 2007 a mutation present in some people with non-small cell lung cancer was discovered. Scientists then found a compound that could address this mutation, and temporarily halt the growth of ALK positive lung cancer.
Linnea Duff agreed to take part in this study, hoping that the results would help others in the future. As a young woman, and a non-smoker, with stage 4 non-small cell lung cancer, there weren't a lot of good options. But in addition to allowing scientists to use her body to help others, the drug in question bought her time. In fact, in 2011 the drug crizotinib was approved by the FDA.
This is exciting to say the least, but the downside is that virtually everyone with ALK positive lung cancer that responds to crizotinib, must inevitably face resistance over time. In other words, the drug stops working.
But keeping with progress, Linnea Duff just happened to develop resistance as a new drug (LDK 378) was being tested that could treat people with ALK positive lung cancer who became resistant to crizotinib.
To read more about Linnea's story, check out this article: My Next Good Chance published in the Stanford Medicine publication SCOPE.
Unfortunately only 5% of people with non-small cell lung cancer harbor the ALK mutation, but other mutations may be present signifying a likelhood of responding to another currently available treatment.
To learn more about ALK positive lung cancer and how to find medical studies that may be right for you, check out these articles:
And for those of you who wish to read Linnea's story, check out her wonderful blog:
We are learning more and more about chronic inflammation, and how it may lead to the development of cancer. This can be seen directly in some cancers in which cancer develops from local inflammation. Examples include HPV leading to cervical cancer and chronic esophageal reflux leading to esophageal cancer. But inflammation in one region of the body may also lead to the development of cancer in another region of the body.
There is now evidence that periodontal disease is associated with cancers of the lung, kidney, pancreas, head and neck, as well as leukemia and lymphomas.
Why? How could inflammation in the mouth lead to cancer at distant sites, such as lung cancer or kidney cancer?
Periodontal disease creates inflammation that doesn't stop in the mouth; instead the inflammation results in an increased concentration of inflammatory markers throughout the body. An increased concentration of these inflammatory markers is in turn linked with an increased risk of several types of cancer.
What can you do to lower your risk, or what about if you already have cancer?
- Make regular appointments with your dentist.
- Brush and floss regularly.
- Before beginning chemotherapy it's a good time to talk to your dentist; due to a low white count or platelet count your oncologist may recommend avoiding flossing and using a gentle toothbrush during treatment.
- Learn more about causes and prevention of periodontitis in the article below.
Check out some other effects that gum disease may have on the body:
Cancer fatigue is something those without cancer can't quite understand. A cup of coffee won't do it. Sleeping in won't take it away. And it seems like you would give up almost anything to be able to stay in bed. Those who have experienced mono, or lived through the first trimester of pregnancy may get an inkling, but otherwise? You can't really understand what cancer fatigue feels like until you've been there.
Not surprisingly, several studies have found that exercise can reduce cancer fatigue both during and after cancer treatment. Easily quoted, but harder to put into practice.
If you're struggling with cancer fatigue talk to your oncologist. There are some "reversible" causes of fatigue that can accompany cancer treatment. Things such anemia, depression, and uncontrolled pain. This article lists some of those reversible causes:
Unfortunately, cancer fatigue isn't usually alleviated with a prescription for iron tablets. Which brings us back to the one thing that consistently seems to make a difference - exercise.
What kind of exercise helps the most? Aerobic exercise - such as swimming, running, walking at a good pace, washing windows, or an exercise class. It's important to check with your doctor, however, before beginning to exercise.
But how can you motivate yourself to exercise when you're so tired? Here's a few tips.
- Take it slowly. Even if you begin with a brisk 10 minute walk, it's a start.
- Connect with a friend. It's much easier to stick with a program to exercise if you are accountable to a friend.
- Think of activities that involve exercise but don't feel like exercise - things such as a hike in the woods, dancing, walking the dog, or washing windows.
- Check with your doctor about exercise programs. Some cancer centers offer exercise programs at a minimal charge.
- Last but not least, don't give up. So you felt too tired to exercise for a few days. Don't chastise yourself, but simply begin again.
Do any of you have any tips that have helped you exercise despite cancer fatigue? We would love to hear them.
If you've been diagnosed with lung adenocarcinoma, or another form of non-small cell lung cancer, your doctor may have recommended genetic testing. But from people I've spoken with lately, this is very confusing.
(First of all, if you have non-small cell lung cancer and your doctor hasn't ordered testing, talk to her. There is now a general consensus that everyone with advanced or metastatic lung adenocarcinoma have genetic testing (biomarker testing) of their tumor. Yet a recent study found that only 60% of oncologists are following these guidelines.)
The confusion comes from what many of us think about when we think of genetics and gene mutations - something is passed down through families. There are 2 basic types of mutations. The first is hereditary. This is the kind of mutation you inherit from your parents, and is the kind of mutation that is getting a lot of attention in regard to breast cancer. The second type of mutation is acquired. In the process of becoming cancerous, cancers develop many gene mutations, and in fact it is these mutations that cause the development and growth of cancers. These mutations are not present from birth and are not passed on to children.
The importance of testing for mutations is that treatments are now available - both approved drugs and those available in clinical trials. The approved targeted therapies include Tarceva (erlotinib) for people with EGFR mutations, and Xalkori (crizotinib) for people with ALK positive lung cancer.
Since this topic is so confusing, the article below takes you step by step in understanding why genetic testing may be important for those with lung cancer.
Arriving in perfect time for the end of Deep Vein Thrombosis (DVT) Awareness Month, a new study reinforces the importance of recognizing, and preventing when possible, blood clots.
Blood clots in the legs (deep vein thrombosis (DVTs)) which can break off and travel to the lungs (pulmonary emboli) have been an important complication of cancer. And when TV journalist David Bloom died from a pulmonary embolus (PE) while reporting from Iraq, the public began to realize that DVT's and PE's can occur with devastating effects even in people who are healthy and fit.
Why is this extra important for people with cancer?
Overall, the risk of blood clots in cancer patients is elevated for many reasons and 3 to 15% of people with lung cancer develop blood clots during their treatment. But a few other statistics are worthy standing up and taking notice:
Blood clots aren't reserved for those who have been struggling with cancer for a lengthy period of time. Researchers looked at 673 people with newly diagnosed lung cancer within the first week after admission.
6.2% were found to have a DVT alone. 4.9% were found to have a PE alone. And 2.1% had both.
The chances someone with newly diagnosed lung cancer would have a DVT were higher if:
- They had metastatic cancer.
- They had an elevated white blood cell count.
- They had lung adenocarcinoma.
- They had anemia.
- If they had an elevated CEA.
Another disturbing finding from an earlier study was that 78% of people who developed blood clots during chemotherapy (for a variety of cancers) developed these while they were away from the hospital or clinic - hence, making it important for people with cancer to recognize the signs.
What are some of the symptoms?
- Pain in the calf. Redness and swelling in one leg. Sudden shortness of breath. Chest pain.
What can you do to lower risk?
- Blood clots are more common in people who are sedentary. When you are in the hospital, get up and move around when possible. If you are traveling by plane or car, stop if driving and get up frequently and move around if flying.
Many cancer treatments increase risk. But as noted above, blood clots can occur even early on after a diagnosis. Don't put off learning about blood clots, possible symptoms, and methods of prevention.
What are some other things that you should know about cancer and blood clots? Check out this article:
Zhang, Y. et al. Prevalence and associations of venous thromboembolism in patients with newly diagnosed lung cancer. Chest. 2014 Mar 27. (Epub ahead of print).
It's been the butt of many a joke for years, but waiting time in doctor's offices has been looked at objectively as well as subjectively.
Overall, the average wait in a physician's office is slightly more than 20 minutes - and getting longer.
How long do people wait in your city? If you live in Denver or Seattle, that wait time is only a quarter of an hour, with El Paso having a consistently long wait time of roughly half an hour.
But - and it may be surprising - I'm going to share a few reasons why a short wait time isn't always a positive thing, and furthermore, is a poor measure of the quality of care you will receive once you make it past the waiting room door. After all, I've spent a considerable amount of time on both sides of the white coat.
First, what are the advantages of a short wait time? Here's a few:
- Less time lost from work.
- Less time to pay the babysitter and be away from your children.
- Less time to sit on uncomfortable waiting room chairs - especially if you are seeing your doctor for pain.
- Lower likelihood of catching the germs that run rampant in waiting rooms.
- More time to play tennis after your appointment.
Now, what are some advantages of a longer average wait time?
- Time to catch up on the novel you've been waiting to read but are too busy to pick up.
- An opportunity to read year old "People" magazines.
- But most importantly - and this takes a little thought - a greater likelihood that your doctor will take that extra time with you when you need it.
Think of it this way.
- Have you ever wanted to get in with your doctor even though her schedule was full for the day - something we refer to as "double booking?" If so, this could very well mean longer wait times for the rest of the patients your doctor needs to see that day.
- Have you ever had questions other than those you bring up at the time you make your appointment? Keep in mind that your doctor's receptionist selects a slot in her schedule which will accommodate the average patient with that concern. Receptionists aren't mind readers. They have no way of knowing that you will need another 5, 10, 15 or 30 minutes to bring up other concerns. If so, this could very well mean longer wait times for the rest of the patients your doctor needs to see that day.
How important is this information?
Insurance companies (and other systems that rank physicians) are now often using wait times as an indication of quality of care by physicians. As noted above, the physician ranked "higher" by virtue of shorter wait times may be that physician who refuses to see you when you really wish to be seen by someone who knows you (otherwise her "wait times would be longer.) The physician ranked higher by virtue of shorter wait times may also be the physician who refuses to take the time to discuss a pressing concern you have (perhaps a concern you didn't feel comfortable sharing in detail with the receptionist) and tells you that you will need to make another appointment - which may be a long way off since said physician will not work you in before the next opening in her schedule - again because it would increase wait time.
I found it interesting that a full 10% of people stated that long wait times would be a reason to find a new physician. Interesting because it is 180 degrees different from a recommendation I have made many times. When I had patients who were moving to another city and was unfamiliar with any physicians to recommend, I suggested that they call the clinic nearest to their home and ask the receptionist 2 questions, "Which doctor is hardest to get an appointment with, and which doctor gets backed up the most" and then make an appointment with that physician. Why? Sometimes, though certainly not always, the answer may define the doctor who is most popular and who also takes time with people when they need those extra minutes.
All of this said, there are a few things you can do to avoid long wait times. Our About.com Expert in Orthopedics has these suggestions :
And if you pack a bag of things to do, you may actually end up appreciating those minutes in the waiting room with nothing else to do:
Shortest Average Wait Time for Doctors in Major Cities Increased One Minute Year Over Year. Businesswire.com. March 26, 2014. http://www.businesswire.com/news/home/20140326005955/en/Shortest-Average-Wait-Time-Doctors-Major-Cities#.Uzkr2qhdWSo
With cancer, keeping copies of your medical records is extremely important. For one, having these records can smooth the flow when you get a second opinion, and for two, it can save you a lot of time and worry if you happen to need medical care when traveling.
But another reason to keep copies of your medical records is so that you can check for errors.
Physicians are as human as anyone, and make errors like everyone else. And while electronic medical records have been a boon in information sharing among the doctors you see, they can also send through cyberspace misinformation - misinformation about you and your diagnosis that is difficult to correct. Think of trying to remove a post on facebook...
Errors in medical records can run the gamut from humorous to hazardous. When I think of these errors my first response is to giggle. In the process of reviewing a friend's medical records recently it was amusing to note that if said records were correct, she would have 3 husbands. I honestly don't believe my friend believes in polygamy.
But though this struck my funny bone, medical errors aren't a laughing matter. They've cost people their lives. Lives lost because of a misinterpretation or mistyped word, or because a physician confused two patients, or a multitude of other errors inherent because, well, we're human.
Instead of being shocked by reviewing saddening cases of these transmitted errors, it's important to note that in the case of medical record errors we aren't victims of the system. There are things we can do to ensure our safety. We can be empowered patients.
If you find errors like those in my friend's record, it may not be worth your time to ask that it be changed. For others, the footwork to correct errors could very well mean the difference between receiving the right treatment - or not.
You may wonder how to begin to check over your medical records for errors and correct those that are present. Thankfully our Patient Empowerment Expert for About.com has some great articles to help you:
Over the years I've had several moments in which I'm hit with a profound sadness when it comes to the public's knowledge about lung cancer.
It goes beyond the sorrow I feel as my heart hurts for those facing the stigma.
It goes beyond my wish to rescue those with lung cancer from the all-too-often careless remarks. Yes, many of you have shared that your neighbor's first remark upon hearing about your lung cancer was to tell you about his uncle who lived only 3 days with lung cancer.
There are many ways in which lung cancer is misunderstood, and it's not just the public that carries misconceptions. I've watched those with lung cancer reach out desperately, hoping to hear about someone who has survived long-term with the advanced stages of the disease.
What else would I preach from a podium given the opportunity? Check out these lesser known facts and misunderstandings about lung cancer:
One thing I learned quickly after my diagnosis of cancer, was that traveling just wasn't the same. Something that had previously been fairly effortless now required careful thought and planning ahead - a process I was grateful to have invested time doing.
What are some things to think about before traveling - whether for treatment, or for pleasure?
1. Gather together your medical records and carry them with you. If you need medical care at your destination it will save you the anxiety and delay as your destination doctor attempts to decipher your medical history.
2. Consider that travel insurance the airlines offer in the event that you should need to cancel your flight. Not only may problems arise that could prevent travel, but it gives you a chance to back out on a trip if the side effects of your cancer and cancer treatment would make traveling uncomfortable.
3. Always carry your medications with you in a carry on, and bring extra medications along. If your trip should be delayed by weather, or if you simply wish to spend more time at your destination, you won't risk running out of your medications.
4. Bring a hat and purchase sunscreen on arrival. Both radiation therapy and some chemotherapy drugs predispose to sunburns.
5. If you have any special needs - such as needing portable oxygen or a mobility device - contact the airline at least 72 hours prior to flying to discuss the checkpoint process. Depending on the airline you may be required to have your doctor fill out a statement of need, or find an oxygen concentrator that is approved by the airline.
6. If your white blood cell count is low due to chemotherapy (chemotherapy-induced neutropenia,) ask your doctor if you should wear a mask in flight. It is also important to avoid foods such as raw eggs, meat, and seafood which could result in an infection.
There are many more things to consider before hitting the road or the skies. Check out these tips to help insure that you have an enjoyable journey:
- Flying with Cancer - Planning Ahead, Precautions, and Financial Help
- Tips for Traveling with Cancer
- How Can I Enjoy the Sun Safely During Cancer Treatment?
I was recently asked a very important question - and one that I'm sure many of you have entertained. How can you know if your lung cancer has spread?
Unfortunately the spread of lung cancer to distant regions of the body is all too common - and roughly 40% of people already have metastatic disease (lung cancer that has spread) at the time of diagnosis.
For those who have their lung cancer discovered at early stages of the disease, surgery offers a chance for a cure. But even with surgery, lung cancer can rear it's head later on in the form of metastases. How will you know if this has happened?
First of all it helps to know the most common areas to which lung cancer spread. The most common site is to local lymph nodes. Lung cancer spread to lymph nodes often occurs without symptoms, but can affect the treatment your doctor recommends as well as your prognosis. Other common sites of metastases include the brain, bones, the liver, and the adrenal glands.
When lung cancer spreads to the brain, symptoms may include headaches, seizures, loss of coordination, speech problems, or changes in personality.
Spread to the liver may result in jaundice, a yellowish discoloration of the skin. Itching, often severe, is another symptom that may occur with liver metastases.
Bone metastases often result in pain. These may also result in numbness and weakness of the legs when they occur in the spine.
To learn more about possible symptoms related to the spread of lung cancer, and how metastatic lung cancer may be treated, check out these articles: