#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!

The Side-Effects Samba

Treating side effects of cancer treatment is at times an intricate dance.

Aggressive, long-term cancer treatment can leave one with lingering side effects. Two side effects I live with are peripheral neuropathy and hot flashes. Both are pesky during the day, but are even more bothersome if they decide to flare up during the night and rob me of sleep. When I don’t get a solid eight hours of sleep, my chemobrain (another pesky side effect) gets noticeably worse.

When I started cancer treatment, I took Ambien to help me sleep — without it, I was awake many hours each night. But Ambien suddenly stopped working for me about a year after I started using it. After a relatively sleepless month, my oncologist recommended I take gabapentin about an hour before bedtime to reduce nerve pain from neuropathy, calm my hot flashes, and make me sleepy. I took 300 mg of gabapentin at bedtime and slept well most nights, even though the drug left me groggy for a few hours every morning.

A couple of weeks after starting gabapentin, I started taking Xalkori as part of a clinical trial. A known side effect of Xalkori is edema. If edema occurs with Xalkori, it usually isn’t severe until the patient has been on the drug for several months. Lucky me — my legs blew up like balloons after just a few weeks. The edema and resulting joint pain were severe enough that I asked my trial oncologist about reducing my Xalkori dose. After weighing my options, I decided to stay on the full dose of Xalkori in hopes it would maintain my No Evidence of Disease status longer. I managed the edema somewhat with compression hose, a diuretic, and exercise.

My mental fuzziness seemed to increase gradually over the months, so I had another discussion with the oncologist about managing side effects. I decided to try melatonin at night to help me sleep, and reduce the gabapentin to 100 mg at bedtime. My sleep was unaffected, and I seemed a bit more alert in the morning, although the neuropathy in my feet started to increase.

About a month after this meds change, my edema decreased. I asked my oncologist if the reduced edema might be related to lowering my gabapentin dose, and he said yes. This was the first time I’d heard that gabapentin might cause edema. I reread the gabapentin drug insert, and there it was in the common side effects: “swelling in your hands or feet.”

So, if I completely eliminate the gabapentin, my mental clarity might increase and the edema might lessen or even disappear, but the neuropathy (which was beginning to interfere with my walking) and the sleep problems might increase. Do I dance left, or do I dance right?

Two weeks ago, I chose to stop taking gabapentin. As I’d hoped, the edema has gone down; it’s not completely gone, but I can skip the compression hose and diuretics some days without my legs becoming uncomfortably puffy by evening, and the joint pain has eased. Surprisingly, my neuropathic foot pain is a bit better. However, the nighttime hot flashes came back with a vengeance, and I haven’t had a good night’s sleep since. Ironically, the lack of quality sleep makes me even more groggy during the day.

It’s all a dance. Now if someone could just tell me what step comes next ….

Are insurance computer glitches contagious?

Recently I received a $4000+ bill from University of Colorado Hospital (UCH) for my December 2013 PET/CT scan and labs. When I receive any bill from UCH, it means my healthcare insurance didn’t pay for something.  The same procedures have been covered completely for all previous UCH visits (most recently in October 2013), and my health insurance coverage has not changed in years. I called UCH, and was told my insurance carrier said I did not have coverage at the time the procedure was performed.  My carrier, Blue Cross Blue Shield of Illinois (BCBSIL), helped me resolve the problem by calling UCH directly while I was on hold (thanks for the outstanding customer service, BCBSIL). Together BCBSIL and UCH determined the UCH computer showed the wrong BCBSIL member number for me–not just a digit or two wrong, but completely wrong. I decided to raise the issue when I’m back in Denver on January 27, and put it aside for now. It was probably just a data entry error.

But then …

Today I read this Huffington Post article from January 10, 2014. It tells of a woman who signed up for a new Obamacare Anthem policy in December through an insurance broker, but her hospital was unable to confirm that she had insurance coverage. The story caught my attention for two reasons: the UCH computer has always shown my insurance coverage as being “Anthem,” and this woman’s insurance issue happened about the same time as mine.  Fortunately, her issue was also resolved in her favor.

Now, however, I’m wondering if computer glitches associated with the online healthcare exchanges might be affecting computerized insurance records of longstanding customers. I have no proof, and no way to investigate this theory, but the thought is unsettling.

Palliative Care for Lung Cancer Patients (#LCSM Chat 16-Jan-2014)

[This is reposted with permission from the #LCSM Chat website]

The next #LCSM Chat will occur on Thursday, January 16, 2014 at 5 PM Pacific (8 PM Eastern). The subject will be “Palliative Care for Lung Cancer Patients” moderated by lung cancer patient and advocate Janet Freeman-Daily. Please note this discussion will focus on comfort care provided to a cancer patient at any time after diagnosis–before, during or after active treatment. We will not be discussing hospice.

#LCSM has invited several palliative care specialists to participate in this chat. Confirmed guests include @ctsinclair (Christian Sinclair, MD, #hpm chat co-founder, editor of pallimed.org), and @chatburn (Andi Chatburn, MD, kansascityhospice.org).

You can learn more about how to participate in an #LCSM tweetchat here. If you find tweetchats are not your cup of tea, please feel free to add your questions or concerns about palliative care in the comment section of this blog post by noon Thursday January 16, and we’ll do our best to address them during the chat if time allows.

Chat Topics

T1: What services and benefits can palliative care specialists provide to lung cancer patients and their families?

T2: How can we help patients, family members and medical professionals understand differences between palliative care and hospice?

T3: How might healthcare providers best introduce the topic of palliative care to their lung cancer patients?

T4: How can we help more lung cancer patients take advantage of palliative care services?

Background

The key points of the National Cancer Institute’s factsheet on palliative care say:

  • Palliative care is comfort care given to a patient who has a serious or life-threatening disease, such as cancer, from the time of diagnosis and throughout the course of illness. It is usually provided by a specialist who works with a team of other health care professionals, such as doctors, nurses, registered dieticians, pharmacists, and social workers.
  • Palliative care is different from hospice care. Although they share the same principles of comfort and support, palliative care begins at diagnosis and continues during cancer treatment and beyond.
  • Hospitals, cancer centers, and long-term care facilities provide palliative care. Patients may also receive it at home. Physicians and local hospitals can provide the names of palliative care or symptom management specialists.
  • Palliative care addresses the emotional, physical, practical, and spiritual issues of cancer. Family members may also receive palliative care.
  • Research shows that palliative care improves the quality of life of patients and family members, as well as the physical and emotional symptoms of cancer and its treatment.

A clinical trial conducted at the National Cancer Institute found palliative care improves survival and quality of life in advanced lung cancer. However, as discussed in a 2011 Los Angeles Times article, the palliative care specialty still faces challenges. A New England Journal of Medicine article recently stated, “Palliative care suffers from an identity problem. Seventy percent of Americans describe themselves as ‘not at all knowledgeable’ about palliative care, and most health care professionals believe it is synonymous with end-of-life care.” The challenges are even greater in developing countries. A global survey by the European Society for Medical Oncology found “a ‘pandemic of untreated cancer pain’ caused by too strict regulation of pain medication.”

More Information About Palliative Care

American Academy of Hospice and Palliative Medicine

Center to Advance Palliative Care and their patient-focused site

National Palliative Care Research Center

About the Manner of My Death

[In case you’re worried, I’m feeling fine, still have No Evidence of Disease and am not in danger of dying soon. My clinical trial oncologist thinks I have a 75-80% chance of making it to 2016 given the current lung cancer treatment options – longer if new treatments are developed in the next couple of years.]

I have lost friends recently to lung cancer, and fellow patients have been discussing hospice and the dying process in the Inspire.com Lung Cancer Support Community. This got me thinking.

I do not fear death, but I must admit I do fear parts of the dying process: stuck in bed, unable to express my wishes, being totally dependent on others to take care of my basic needs. I watched both parents die of dementia, and I know they did not want to go that way. I don’t either.

I’m trying to do my thinking about the manner of my death now when I’m relatively clearheaded and comfortable, because I want to explain my wishes to my family in advance. The problem is that none of us can know for certain what the manner of our death will look like. My lung cancer might return only in my lungs and gradually steal my breath; that can be controlled by pain meds. However, I might experience substantial brain mets or oxygen deprivation that could impair my thinking and gradually take away who I am. That second scenario is the one I fear most. I fear its impact on my family, who would have to watch my cognitive decline as well as care for my physical needs. Losing my parents by inches was hard on me and my siblings, and I don’t want to be the source of that pain for others.

While part of me would like to stay at home as long as possible, surrounded by familiar things and people and pets, another part of me thinks the burden on my family would be too great. I’ve seen the physical toll home hospice can take on the caregiver. Perhaps being placed in a hospice facility when the time comes would be a better approach.

I’m lucky to have a third option. I’ve recently been reviewing my state’s Death with Dignity Act. Under this law, terminally ill patients have the right to self administer meds that will end their lives. Maybe I’ll throw a party to say my goodbyes, then go home and decide the time and manner of my death myself. Yet … are there existential consequences for messing with the Fates timelines?

The angst continues. At least I have choices.

Lung Cancer’s Highlights from 2013 and Predictions, Hopes for 2014 – The First LCSM Tweetchat of 2014

This is a reblog from the #LCSM Chat blog (posted with permission). I changed the post to include links to the blog sites where comments about the chat should be posted.
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Lung Cancer’s Highlights from 2013 and Predictions, Hopes for 2014 – The First LCSM Tweetchat of 2014

By Dr. H. Jack West 

The end of a year is always a time for reflection on the past alongside hope for the future, so our upcoming lung cancer social media tweet chat on twitter (#LCSM on twitter) will focus on everyone’s thoughts of the most significant developments in lung cancer over the past year, along with predictions and hopes for the coming year.

Please join us Thursday, January 2nd at 8 PM Eastern, 5 PM Pacific on Twitter, using the hashtag #LCSM to follow and add to our one-hour chat with the global lung cancer community, where we’ll cover the following three questions:

1) What do you think were the biggest advances in lung cancer in 2013?

2) What do you predict as key changes in lung cancer in the upcoming year?

3) What is your leading possible hope/goal for the lung cancer world in 2014?

It should be a lively, upbeat discussion, so please join us Thursday, or share your thoughts on the #LCSM Chat blog or on Cancergrace.org before or after the live event. Hope to see you there!

December 19 #LCSM Chat: “Lung Cancer Screening – The Good, The Bad and the Indolent”

[This is a reblog of a post on the #LCSM Chat website, shared with permission (it’s really easy to give myself permission to reblog something I wrote).]

The next #LCSM Chat will occur on December 19 at 5 PM Pacific Time (8 PM ET), and will be moderated by Janet Freeman-Daily. The theme will be “Lung Cancer Screening – The Good, The Bad and the Indolent.”

Discussion topics for #LCSM Chat:

T1: For patients who don’t fit “older heavy smoker” profile, should doctor order low-dose CT screening if patient requests it? #LCSM

T2: Some lung nodules are not cancer. When are you comfortable just watching a lung nodule instead of treating it? #LCSM

T3: A new blood test detects w/ 90% accuracy if lung nodule IS NOT cancer (but can’t tell for sure if it IS). Is this useful when combined with low-dose CT screening? #LCSM

Background

The National Lung Screening Trial found 15% to 20% fewer lung cancer deaths among participants who were screened for lung cancer by low-dose helical CT scans compared to those screened by chest x-ray. Participants included 53,454 current or former heavy smokers ages 55 to 74 between 2002 and 2004.

From this statistic, it would seem obvious that lung cancer screening for older patients who are or were heavy smokers would be a slam dunk. However, the screening does raise some concerns. For instance, some studies show 20% to 60% of screening CT scans of current and former smokers show abnormalities, most of which are not lung cancer. Lung biopsies and surgery do carry risk, yet the uncertainty over having lung nodules might cause considerable anxiety for the patient. How do we determine whether or not to biopsy such abnormalities?

A biopsy of a nodule found by screening could determine if the nodule is cancerous. However, according to the NCI, studies indicate some small lung cancer tumors are indolent – that is, they so slow growing that they never become life threatening. This situation, called overdiagnosis, might cause some patients to be subjected to challenging and potentially damaging lung cancer treatment when they have no symptoms and an extremely low risk of death from lung cancer. Are the risks associated with biopsies and cancer treatment ALWAYS less than the risk of lung cancer death?

Another issue: this new CT screening is recommended only for patient who fit a specific profile (generally, current or former heavy smokers ages 55 to 79).Never smokers and some smokers and former smokers don’t fit this profile, but might have other risk factors for lung cancer. If a patient who doesn’t fit the recommended profile requests a low-dose helical CT scan, and agrees to pay for it, should their doctor agree to order the scan?

A new blood test announced in October (by Bioinformatics for Integrated Diagnostics and the Institute for Systems Biology) can determine if a detected lung nodule is NOT cancerous with 90% accuracy. However, it can’t reliably detect whether a nodule IS lung cancer. Used in combination with CT screening, this blood test might help determine whether a lung nodule warrants a biopsy. Do doctors and patients feel comfortable using a blood test that can say if the patient does NOT have lung cancer, but can’t say if the patient DOES have it?

For those who wish to do more reading

The National Lung Screening Trial: Results are in

Overdiagnosis in Low-Dose Computed Tomography Screening for Lung Cancer

Harmless lung cancer? Many tumors not lethal

Can Lung Cancer be Clinically Insignificant? The Case for “Overdiagnosis” and “Overtreatment” of Lung Cancer

Blood Test Distinguishes Early Lung Cancer From Benign Nodules

A blood-based proteomic classifier for the molecular characterization of pulmonary nodules.

Blood Test to Define Probability of Lung Nodule Being Cancer? Could Help, but Potential to Backfire

National Lung Screening Trial: Questions and Answers

Prevention vs Risk Reduction Vs. Screening (a reblog)

Breast cancer survivor  @coffeemommy (Stacey Tinianov) gave me permission to reblog the  article below, which she wrote following the #abcDrBchat tweetchat about lung cancer Tuesday December 10 2013.  She’s written an excellent clarification of the differences between cancer prevention, risk reduction, and screening.

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Prevention vs. Risk Reduction vs. Screening
by coffeemommy

After a series of particularly frustrating exchanges, I have decided it will take more than 140 characters to not only explain the distinction between prevention, risk reduction and screening in ALL cancers but to also explain why a distinction is so critical.

Prevention: definition 1. To keep from happening

Reality check:

  • The only way to prevent breast cancer is to not have any breast tissue.
  • The only way to prevent lung cancer is to not have lungs.
  • The only way to prevent skin cancer is to not have that
    useful covering over your flesh and bones.

You get the idea.

But wait! There’s this list you received from your doctor’s office, right? Certainly it’s titled something provocative like: “Prevent Breast Cancer” and includes some or all of the following:

  • Eat a well-balanced, low-fat diet
  • Exercise regularly
  • Limit alcohol intake
  • Maintain a healthy weight
  • Annual mammograms beginning at age 40

I did all those.

And I was diagnosed at age 40 with two tumors of invasive ductal carcinoma, diffuse DCIS and lymph node involvement in my left breast. Did I misunderstand the rules for preventing breast cancer and do something wrong? No. I didn’t. I tried to reduce my risk and it didn’t work. The above list may be a compilation of helpful hints but, even collectively, they do not prevent breast cancer, they help reduce risk.

RISK REDUCTION

Risk reduction in the spectrum of the healthcare industry attempts to lessen our chances of receiving a diagnosis by removing potential harmful exposures and/or behaviors from our lives and, in some cases, replacing them with behaviors that can help fend off disease.

To use skin cancer as an example, we can use sunblock liberally but we are merely attempting to reduce our risk. Skin cancer is still a possibility and a combination of exposure and genetics may render our efforts utterly useless.

Never-smokers without lung cancer who may feel they can cross malignant non-small cell carcinoma off their worry list should meet Janet Freeman who “never smoked anything except a salmon.”

And there are tens of thousands more who followed the list of “prevention” tactics but were diagnosed anyway. Specifically, even if you are a never smoker, you may still have some of the following risk factors for lung cancer:

Risk reduction is limiting exposure to the above but does not guarantee prevention. And a genetic predisposition is hard to shy away from.

SCREENING

If we refer back to the sage if woefully mis-titled “Prevent Breast Cancer” document above, I’d like to call out the last ‘prevention technique’ – the oft-touted annual mammogram.

People. People. People. Regular mammograms don’t PREVENT breast cancer OR reduce risk. EVER.

Mammograms are screening tools. Regular screening is encouraged so anomalies can be found as early as possible,be treated as quickly as possible and, hopefully, result in a better longer term outcome.

DISTINCTION is NOT A SEMANTICS ISSUE

This is not a tomato – tomato (c’mon, you’re supposed to pronounce those differently when you read them!) issue. Why is the terminology distinction important? Three reasons bubble to the top for me:

  • Continued Diligence: Individuals must remain diligent in personal and professional screening even when they”do everything right” on the risk reduction list. Mammograms don’t “Save the ta-tas” they simply alert people as to whether or not their breasts are trying to kill them. I can personally attest to the fact that people who follow all the published rules for how to prevent breast cancer, and get a mammogram at 40, still get breast cancer.
  • Removing Stigma and Eradicating Blame & Shame: According to anecdotal data, the most common question lung cancer patients field is, “How long did you smoke?” If you advertise risk reduction as prevention you are perpetuating a falsehood. Perpetuating the idea that cancers are preventable implies that, when a diagnosis is given, somebody did something WRONG.
  • Redirecting Research Focus: While a list of ways to reduce risk for disease is helpful, such a list is not a magic bullet. Already genomic research is leading to personalized treatments. We need to expand efforts in this area. When the general public finally realizes that no one is “immune” to a cancer diagnosis, more focus can be applied in the appropriate areas.

Cancer sucks, no one “deserves” it. Please don’t propagate a false sense of security or imply wrongdoing by patients who are diagnosed by claiming cancer is preventable. Please choose your words wisely.

Yet another potential cause of lung cancer — and it isn’t smoking

On November 15, the California EPA’s Office of Environmental Health Hazard Assessment (OEHHA) announced it intends to list emissions from high-temperature unrefined rapeseed oil as known to cause cancer.

I reviewed the studies they cited. Animal studies found high-temperature unrefined rapeseed oil emissions caused lung cancer tumors (primarily adenocarcinomas) in mice and rats (note: unrefined rapeseed oil is not the same as canola oil). An Egyptian study I found while following citations indicates cooking with high-temperature cotton oil may also cause mutations in the lungs of mice.

This provides more evidence that lung cancer ain’t just about smoking.  I suspect with time we will find that no matter where we live, our way of life exposes human lungs to many inhalants that induce mutations and lung cancer.  For instance, the lung cancer mortality rate in Xuan Wei County, China is among the highest in that country, and correlates with burning smoky coal indoors to heat homes.  This study indicates that residents there who had a variation in a gene known to help detoxify coal emissions were more likely to get lung cancer — a genetic susceptibility combined with an environmental trigger to cause lung cancer.

Lung cancers in never smokers may be the easiest way to identify these substances.  However, I suspect we will find the genetic variations and tumor mutations present in never smokers affect smokers and former smokers as well. We already know that the EGFR mutation in lung cancer tumors, while more common in never smoker females, are also found in smokers and former smokers.

As an aside, I think life as a lab mouse must really suck.

Thanks to friend Richard A. Lovett for forwarding the cooking oil article to me.

Edited 12-Dec-2013 18:40  PT:
I incorrectly equated unrefined rapeseed oil with canola oil.  Canola oil is not the same as rapeseed oil.

An Aid for Visualization

Guided imagery and visualization are integrative medicine techniques that any cancer patient can use (for free!) to promote health, manage stress, aid in relaxation, and assist in pain control.  Information about these practices is available online from the American Cancer Society , University of Michigan Cancer Center, and other places.

Some studies suggest guided imagery and visualization may help our bodies fight cancer more effectively.  Using one’s imagination is useful here.  After my first recurrence, I decided to use guided imagery to help the chemo do its job.  For a few minutes every day, I relaxed in a quiet place and envisioned the chemo molecules as a Tolkien army — wizards with spells, hobbits with potions, elves with arrows and dwarves with axes — attacking a dragon (my tumor). My tumor started shrinking 10 days after starting chemo. Whether or not visualization contributed to the rapid shrinking of my tumor, it gave me some sense that I personally was doing something to defeat my cancer. Speaking from the entirely irrational side of my brain, anything that gives me some sense of control over cancer has got to be a good thing.

Others might prefer a more reality-based visualization, like your own immune system mounting an attack on the cancer.  To help you imagine your immune system attacking cancer, check out this image of a white blood cell engulfing a MRSA bacteria:

Hospital-associated Methicillin-resistant Staphylococcus aureus (MRSA) Bacteria

Credit: NIAID/NIH (NIAID Flickr's photostream) [Public domain], via Wikimedia Commons