#LCSM Chat 27-Feb-14: What do cancer patients want from their doctors and online support groups?

[This is a reblog of a post on the #LCSM blog.  Reposted with permission]


The focus for the next #LCSM Chat at 8 PM Eastern (5 PM Pacific) on Thursday, February 27, 2014 will be “What do cancer patients want from their doctors and online support groups?” The moderator will be Dr. Jack West.

Online cancer support groups can provide a wealth of information and understanding for cancer patients, caregivers, and family members. Many in online forums find expertise and credibility among others who have traveled down the same road. “Expert patients” in these forums can provide an understanding and hope that even the best doctor can’t offer, because they’re living proof you can understand your treatment options, and your treatment can work. And online groups are available 24/7, for free.

However, different patients seek out different levels of information, both in these forums and with their doctors. Some want to know all the available facts, including survival data in the tables and figures shared among oncologists. Others prefer to trust their doctors and hope for good results. This leaves doctors wondering if providing a frank discussion of statistics (which might not be encouraging) would inform, confuse, or scare patients.

Also, different patients are comfortable with different levels of self-advocacy. Some express a strong desire for self-determination of their treatments, while others want a clear recommendation from a trusted oncologist about the a best way to proceed.

Given the diversity in cancer patient needs and wants, our upcoming #LCSM tweetchat on will focus on the following questions:

1) Do the shared experiences of patients provide value and credibility that can’t come from medical professionals?

2) Given the growing movement to give patients their data, should doctors share stats like survival numbers with the patients? If so, when?

3) Do engaged, empowered patients want a clear recommendation from their doctor, or a presentation of pros and cons so they can choose among the options?

We hope that those of you who use Twitter as a communication tool will join us by following the hashtag #LCSM on Thursday. Feel free to also comment here, before or after the tweet chat.


Upcoming #LCSM chat: What do patients want and need from online networks and their doctors?
by Dr. Jack West on cancergrace.org

ePatients: Engaging Patients in Their Own Care by Medscape

Society for Participatory Medicine

Are physicians ready for the e-patient movement? on KevinMD.com

What Is an “Off Label” Cancer Drug?

Sometimes the term “off label” comes up in discussions of cancer drugs.  What does “off label” mean?

All prescription drugs sold in the USA have been approved for use by the U.S. Food and Drug Administration (FDA).  After a drug is approved by the FDA, it sometimes is used for different purposes or in different populations.  That is “off label” use of a drug.  As WebMD explains, it’s perfectly legal. Per the National Cancer Institute’s definition, off label is “the legal use of a prescription drug to treat a disease or condition for which the drug has not been approved by the U.S. Food and Drug Administration.”

Consumer Reports states off label drug prescription is actually very common.  More than one in five outpatient prescriptions today are written off label.  For instance, Neurontin (also known as gabapentin) was originally approved to treat seizures.  It is now also used to treat nerve pain and neuropathy – an off label use.  However, one trusts that one’s doctor will only prescribe a drug with good evidence that drug is useful for the patient’s disease or condition.

Two types of off label use occur. The first type is when a drug is used to treat the approved disease, but used in a manner different than stated in the FDA approval.  For instance, use of the antidepressant Zoloft is off label in children (Zoloft is FDA approved for adults only); taking a drug in a larger dose or on a different schedule than that approved by the FDA is also off label. The second type of off label use is when a drug is used to treat a condition or disease different than that for which the drug was originally approved.

Cancer drugs are sometimes used off label to treat metastatic patients who have exhausted traditional treatment options, but only if evidence indicates the drug might be effective against the patient’s particular cancer situation.  For example, crizotinib (Xalkori) was approved by the FDA only for non small cell lung cancer (NSCLC) patients whose tumors tested positive for the ALK translocation (a type of mutation in a specific gene called ALK).  In addition, the approval stated the patient’s ALK-positive (ALK+) status had to be determined by a specific molecular test.  Prescribing Xalkori for patients who test ALK+ using a different type of test (genomic profiling) is an off label use, because the patients weren’t tested with the specific test named in the FDA approval.  This is not a big deal, because research indicates both tests identify ALK+ tissue with high accuracy.

Xalkori is also legally prescribed for a different disease: ROS1+ lung cancer in patients (like me). ROS1 is a different tumor mutation than ALK, but has a similar structure–technically, ROS1+ NSCLC is a different disease than ALK+ NSCLC. This is an off-label use, because Xalkori has not been approved for treating ROS1+ lung cancer.  Xalkori for ROS1+ lung cancer has been in clinical trials for over two years, with a goal of someday obtaining FDA approval (this is the clinical trial in which I am enrolled). Strong evidence from this clinical trial indicates Xalkori has a high response rate in ROS1+ lung cancer patients, so oncologists are now prescribing Xalkori for this use even though it’s not approved by the FDA for that purpose.

Even a drug that’s approved to treat a particular cancer can be used to treat that cancer in off-label ways. Examples are when a drug normally approved for first line treatment is used for maintenance, or when the dosing interval differs from the schedule called out in the FDA approval.  A friend who has metastatic lung cancer could not tolerate the standard combination chemotherapy for lung cancer because he couldn’t have a platinum drug.  He wanted to have Gemzar, a relatively well-tolerated chemo, off label as a single agent (Gemzar’s FDA approval says it must be used with a platinum drug). After consulting several different oncologists, all of whom wanted to put him on hospice, he found an oncologist willing to give him Gemzar off label as a single agent.  My friend was stable on Gemzar for over two years.

As genomic testing identifies more mutations in different types of cancer tumors, drugs that are FDA approved for one type of cancer – say, a BRAF inhibitor for melanoma– might be tried in a BRAF+ lung cancer patient.  Or, an oncologist might prescribe a cancer drug off label after a functional profiling assay indicates a drug approved for a different cancer is effective against a patient’s tumor tissue. Until FDA approval is given for the drug to be used in a different cancer, this is considered an off label use. However, it could also be a life-saving use for the patient.

“As a cancer patient, it’s always a good idea to ask your oncologist what evidence he has for using a drug off label to treat your cancer. Most oncologists will cite results from early research or a clinical trial. If they don’t have such evidence, ask LOTS of questions. You as the patient are ultimately the one assuming the risk of an off label drug.”

Assuming one has an up-to-date and responsible oncologist, a cancer patient’s primary concerns regarding an off label cancer drug are usually side effects, and whether their insurance will cover a non-approved use of that drug. Sometimes insurance companies will not cover a pricey drug used off label.  When oncologists started prescribing Xalkori for ROS1+ lung cancer outside of clinical trials, some insurance companies refused to cover the expensive drug (around US $10,000 per month) because it was not FDA approved for that type of cancer.  However, I’m hearing more ROS1+ LC patients say their insurance is covering Xalkori even without FDA approval. Insurance companies are learning to adapt to the changing molecular landscape of cancer, just as researchers, oncologists, regulators and professional organizations are.

The times they are a changin’.  Off label cancer drugs may be the new black.

Call to Action: Tell Medicare and Medicaid to Cover Lung Cancer Screening

This is a reblog of a post I wrote for the #LCSM website. Reposted with permission.

Anyone can get lung cancer. Screening for lung cancer with low dose CT scans (LDCT) can save thousands of lives every year. Many private health insurers already provide coverage for this screening.

Tell the Centers for Medicare and Medicaid Services (CMS) you want them to provide coverage too. On February 10, CMS opened a 30-day comment period to support their national coverage analysis on Lung Cancer Screening with LDCT. This comment period closes on March 12, 2014.

Please sign this petition to tell CMS to provide coverage for LDCT, and ask everyone you know to sign it too. The results of this petition will be submitted to CMS as a comment on March 11, 2014. You can help save thousands of lives!
Petition: http://www.change.org/petitions/centers-for-medicare-medicaid-services-cms-provide-coverage-for-lung-cancer-screening-with-ldct

People might also want to provide a comment directly to CMS — especially those who are Medicare or Medicaid-eligible and who were either diagnosed with advanced lung cancer or are at high risk for lung cancer.
Comment directly to CMS here:

If you are a health care professional who deals with lung cancer or a medical center offering LDCT, please go to this link to read more about the type of information that would be most helpful to CMS, then provide a comment directly to CMS

For more information about why lung cancer screening with LDCT is important, read on:

Lung cancer is the #1 cancer killer in the world, and the #2 killer of all types in the United States (per the CDC). In 2012 more than 226,000 people received a new lung cancer diagnosis, and almost 160,000 died of the disease – that’s like a jumbo jet full of passengers dying every single day of the year.

Lung cancer kills so many in part because the majority of patients are not diagnosed until the cancer has already spread outside of the lung. Patients in the early stage of the disease rarely display symptoms.

Lung cancer screening with LDCT can decrease the high mortality rate of lung cancer by detecting the disease before symptoms appear and enabling patients to pursue a cure with surgery. An article in medical journal The Oncologist states “… a national LDCT screening program would save more than 18,000 lives annually.”

At this point, the guidelines recommend LDCT only for older people with high risk factors for lung cancer. Tobacco smoking is the greatest—but not the only—risk factor for lung cancer. An NIH-funded study of 53,454 current and former heavy smokers ages 55 to 74 showed screening for lung cancer using LDCT could reduce lung cancer deaths in that group by 20%.

LDCT is covered by some private health insurance policies, but it is not currently covered by Medicare or Medicaid. Anyone at any age can get lung cancer, but the risk of getting lung cancer increases with age. Older people (who are at higher risk for lung cancer) may not be able to pay for screening if it is not covered by Medicare and Medicaid.
Lung cancer screening with LDCT is now available in a growing number of medical centers. It is included in National Comprehensive Cancer Network guidelines and recommended by the U.S. Preventive Services Task Force, American College of Chest Physicians, American Cancer Society, American Lung Association, Lung Cancer Alliance, and other organizations focused on lung cancer.

It’s time early detection for lung cancer gets the same attention as other top cancers. Screening for breast and colon cancers increased both awareness and survival for these diseases.

Thank you for supporting the fight against lung cancer!

Can we erase lung cancer stigma without mentioning “smoking”?

Some people have indicated my previous post (Dear lung cancer patient who smoked) reinforces a division within the lung cancer community (those who smoked versus those who didn’t).  That wasn’t my intention.  In fact, it was a division I was trying to heal. If I offended anyone, I apologize.

Like any group of people, those of us in the lung cancer community are individuals.  We differ in many ways:  age, physical fitness, financial status, geographic location, family relationships, gender, sexual orientation, smoking history, nutritional choices, weight, desire for privacy.  Our close personal experience with lung cancer is the only thing we all have in common.

Lung cancer patients and advocates talk about the stigma of lung cancer (which is largely associated with smoking) because we and others we know have experienced it. It is real. If we don’t talk about the stigma, who else will?

One approach to erasing the stigma is to show the world the diversity among lung cancer patients. Somehow we need to show the public that lung cancer patients don’t fit one mold.  To do this, we have to reveal our differences. The perception of HIV patients changed in part because patients with different personal characteristics spoke out and showed the world the diversity among HIV patients.

The fact that we talk about our differences doesn’t imply any judgment or preferred categories among us, although some people will always attempt to pigeonhole people in that manner.  We can acknowledge our differences and still accept each other.  Attempting to show the diversity within the lung cancer community in no way implies any judgment that some personal characteristics or habits are “better” than others. But somehow, no matter how carefully phrased, discussions about stigma that involve the word “smoking” seem to make some people feel even more stigmatized.

If you have ideas how we can demonstrate the diversity within the lung cancer community without mentioning the word “smoking,” I’d love to hear them.  Please share them in the comments section here, in our upcoming February 13 #LCSM tweetchat, or in an email to me at jfreeman.wa at gmail.com.

Dear lung cancer patient who smoked

Dear lung cancer patient who smoked:

Please forgive yourself.  No one deserves to die from lung cancer. No one.

We have all done things that could impact our health. Do heart patients deserve to die because one of their habits might have contributed to a heart attack? Do I deserve to die because I used high doses of sugar and caffeine (M&Ms and regular Coca-Cola) to get through late night study sessions in college?

Most people who took up smoking did so when they were teenagers. It looked cool. It looked grown up. Others of us made different not-so-healthy choices at that age. Yes, it’s healthier not to smoke. But it’s not a sin that warrants the death penalty.

You had some help forming your smoking habit. The tobacco and entertainment industries made smoking look “cool” and “mature” through TV, advertising, billboards and movies, especially during the 50s and 60s. Tobacco companies upped the ante over the years by adding nicotine and other chemicals to their products that ensured their customer base got addicted quickly and stayed addicted.

Rather than asking whether you deserve to die, perhaps you should try asking who or what you have to live for.


A lung cancer patient who never smoked

#LCSM Chat 13-Feb-2014: “Brainstorming: How Do We Erase the Stigma of Lung Cancer?”

[This is a reblog of a post on the #LCSM blog.  Reposted with permission]

Erasing the stigma of lung cancer is one of the goals of all advocates who fight for more lung cancer awareness and funding.  But sometimes it’s hard to know how to go about it.

The focus of the #LCSM Chat on February 13 will be “Brainstorming: How Do We Erase the Stigma of Lung Cancer?”  Imagine we have unlimited funds, political influence in all the right places, ready access to every medical professional, and all the trained, eloquent workers we need.  What actions would erase the stigma of lung cancer?

Our moderator for this chat, Laronic Conway, will use these topics to get the discussion going:

  • T1: How would you erase lung cancer stigma among individuals? Billboards? Front-page articles? Doorbelling? Be specific.
  • T2: How would you erase lung cancer stigma among healthcare professionals? What would you need to do this?
  • T3: How would you erase lung cancer stigma among government officials and lawmakers? What would you need to do this?
  • T4: How would you erase lung cancer stigma among lung cancer patients and their families?

To prepare for this chat, you might wish to read some of the articles about lung cancer stigma on our new “Lung Cancer in the Media” page.

Guidelines on how to participate in an #LCSM Chat can be found on the “#LCSM Chat” page of the #LCSM website. Hope to see you on Twitter!

American Lung Association Unveils LUNG FORCE Initiative

On January 29, the launch event for the American Lung Association’s new national LUNG FORCE initiative occurred in Seattle.  As stated on the LUNG FORCE website, “LUNG FORCE is a new national movement led by the American Lung Association with a singular mission: to unite women to stand together against lung cancer and for lung health.” ALA chose to focus on women because market research indicated that was the best way to break the stigma of lung cancer and bring it into public awareness. ALA’s aim for LUNG FORCE is to raise money for lung cancer research, education and advocacy. They are extremely responsive to the patients’ voice and are genuinely interested in promoting the concept that ANYONE who has lungs can get lung cancer, and NO ONE deserves to die from it.

Seattle is the launch city for the first LUNG FORCE Walk. I’m on the Patient-Survivor-Family Cabinet of the ALA’s Mountain Pacific chapter in Seattle. This chapter also has a Medical Professionals Cabinet, among them oncologist Dr. Howard (Jack) West, Medical Director of Thoracic Oncology at Swedish Medical Center and Founder of cancerGRACE.org (who was unable to attend the kickoff due to horrendous traffic); Dr. David K. Madtes. Director of the Lung Cancer Early Detection & Prevention Clinic at Seattle Cancer Care Alliance (an NCCN facility); and Dr. Steven Kirtland, Medical Director of the Thoracic Oncology Program at Virginia Mason Medical Center (and, coincidentally, my pulmonologist). We also have a cabinet of women business leaders.

I’m thrilled that an established, large national public health organization has chosen to join the effort to eliminate the stigma of lung cancer, educate people about symptoms, champion early detection, and promote research funding. Although ALA has long had a strong anti-smoking program, they are acutely aware of the need to keep it separate from LUNG FORCE to avoid promoting further stigma. I’m hopeful ALA is the Big Dog that will tip the scales and finally bring lung cancer into the public’s awareness.

And yes, the munchies were yummy!

Thanks to Hello Robin, Cupcake Royale, Trader Joes, and st. clouds restaurant for donating refreshments, and glassbaby for donating the meeting space.

Patients and Doctors Who Spoke at Seattle LUNG FORCE Kickoff 29-Jan-2014. I’m second from the left; my pulmonologist Dr. Steven Kirtland is third from right.

This 17-minute video captures the presentations at the kickoff event. I was the last of three patients who spoke at the event.

#LCSM Salutes World Cancer Day

[This is a reblog of a post on the #LCSM blog.  Reposted with permission]

Tomorrow, February 4th, is World Cancer Day. The focus this year is Target 5 of the World Cancer Declaration:  reduce stigma and dispel myths about cancer. The World Cancer Day campaign seeks to “Debunk the myths” of cancer:

  • We don’t need to talk about cancer
  • There are no signs or symptoms of cancer
  • There’s nothing I can do about cancer
  • I don’t have the right to cancer care

This focus parallels the goal of #LCSM “to educate, develop public support, end the stigma, and facilitate successful treatments for the leading cause of cancer deaths worldwide.”

On World Cancer Day, we hope the #LCSM community will take the opportunity to tweet about lung cancer as well as cancer in general.  Be sure to use “#LCSM” as well as “#WorldCancerDay” in your tweets so followers of both communities can see them. You can find a list of tweet-sized facts and the supporting documents on our Lung Cancer Facts page.  Or, if you prefer, just retweet #LCSM tweets that appear during the day.

Happy tweeting!