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.

Journalists vs ePatient — and How It Got Ugly

This is a story of Bill Keller (former executive editor of the New York Times), his wife Emma Keller (a journalist for The Guardian in the UK), and Lisa Adams (a 44-year-old mother of three who lives with metastatic breast cancer and shares her cancer journey in blogs and tweets).  But, in a broader sense, it’s the story of the disconnect between cancer epatients who share their journey online, and journalists more comfortable with traditional approaches to healthcare and media.

On January 8, 2014, The Guardian published Emma Keller’s article about her fascination with Lisa Adams tweets: “Forget funeral selfies. What are the ethics of tweeting a terminal illness?”  Four days later, The New York Times published Bill Keller’s Op-Ed piece titled “Heroic Measures,” which contrasted Lisa Adams’ very public efforts to stay alive with the private death in hospice of Bill Keller’s 79-year-old father-in-law.  From my perspective, and that of many others, both of the articles appeared to blame Lisa Adams for taking her terminal cancer journey public.

Both articles generated some positive response and a LOT of negative comments.  You can read comments on the NY Times page for a sampling of reactions.  Comments on the Guardian article are here, even though the original post “has been removed pending investigation” (Emma Keller revealed she published parts of private communications with her subject, Lisa Adams, without first obtaining Lisa’s permission.)  The Internet and Twitterverse reacted strongly, and major online media are starting to analyze what happened and what it all means (see links at the end of this blog).

My initial reaction to Bill Keller’s Op-Ed piece was to wonder how a former executive editor of the New York Times could have managed to publish a piece with so many errors in it. He hadn’t read Lisa Adams’ online profiles, or he would have known she had three children, not two, and her cancer became metastatic in October of 2012, not seven years ago.  He couldn’t have read many of Lisa’s online posts, or he would have known that she abhors battle metaphors for cancer and honors each patient’s choice to treat or not treat their cancer.  He hadn’t read the article he cited about palliative care and lung cancer, or he would have known the patients in the study received palliative care during active cancer treatment and were not in hospice care. He apparently doesn’t know much about the healthcare system, since he attempted to verify information about Lisa Adams’ treatment with her doctors, who are bound by HIPAA laws not to disclose her information.  I especially did not appreciate how he blurred the distinction between palliative care and hospice (my thoughts about this appear in the comments section of Bill Keller’s op-ed as well as below).

The more I think about it, the more it seems this mess reflects how little major media and the public at large understand the epatient movement and cancer.  The blogs, tweets and forum posts of actual cancer patients are invaluable to those dealing with the life-changing personal crisis that is cancer, and to their families and caregivers.  Epatients like me share our experiences and learn from each other regarding the symptoms, diagnostic process, terminology, second opinions, treatment options, side effects, research, clinical trials, palliative care, hospice, and dying with grace and dignity.  For some of us, it’s been a literal lifesaver.  If I hadn’t read posts from other cancer patients online, I wouldn’t have learned about the ROS1 mutation and I’d be dead now.

Apparently Bill and Emma Keller think we metastatic cancer epatients should just go silently into the night–with emphasis on the SILENT. Maybe if they actually spent some time reading the blogs of Lisa Adams and other metastatic cancer patients, they would understand instead of blame.

My comment to the New York Times article

“Your characterization of ‘palliative care’ and the related lung cancer study does a great disservice to cancer patients. Palliative care is a specialty that provides comfort care to patients and family members from the day of diagnosis — before, during, and after treatment. Cancer patients can be receiving aggressive treatment and still receive palliative care.

“In the lung cancer study you mentioned, patients were assigned ‘to receive either early palliative care integrated with standard oncologic care or standard oncologic care alone.’ This means the patients were receiving active cancer treatment. They were not ‘going gently.’ They were trying to stay alive.

“An article recently published in the Journal of the American Medical Association indicates others suffer from the same lack of understanding as you. It states, ‘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.’ http://www.nejm.org/doi/pdf/10.1056/NEJMsb1305469

“Palliative care may be offered during hospice, but palliative care is NOT the same thing as hospice. Cancer patients in treatment need comfort care too. Misrepresentations such as yours will keep many of them from getting it — they’ll think palliative care means the doctor has given up.”

Commentary in Major Online Media

New York Times Public Editors Journal: Readers Lash Out About Bill Keller’s Column on a Woman With Cancer (Jan 13)

Salon.com: Bill and Emma Keller’s bizarre pieces about cancer patient Lisa Adams (Jan 13)

Wired: Former New York Times Editor, Wife Publicly Tag-Team Criticism of Cancer Patient. Ugh. (Jan 13)

Washington Post: Former NYT editor Bill Keller and his wife under fire for commentary on cancer patient (Jan 13)

The Atlantic: On Live-Tweeting One’s Suffering (Jan 13)

Huffington Post: Bill Keller Criticized For Op-Ed About Cancer Patient Lisa Bonchek Adams (Jan 13)

Slate: There Is No Right Way to Die (Jan 14)

Huffington Post Women: What the Kellers Forgot to Say about Lisa Adams and Cancer (Jan 14)

The Guardian: Why an article on Lisa Bonchek Adams was removed from the Guardian site (Jan 16)

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!