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My Next Speech: Bringing the Lung Cancer Patient to the Foreground at #ASCO16 CME

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peerview grace asco logo

I’m excited to announce that I have been asked to speak on June 5, 2016, at a dinner symposium titled “NSCLC Forum: Bringing the Patient to the Foreground of Evidence-Based Lung Cancer Care.” It’s sponsored by PeerView Press (a medical education provider) and GRACE (a web resource for cancer patients).

This is an evening event concurrent with ASCO 2016 Annual Meeting in Chicago, usually called just ASCO. ASCO (short for American Society for Clinical Oncology) is the world’s biggest cancer conference—just you and 35,000 of your closest friends.  Attendees hear about results for cancer clinical trials along with prevention, diagnosis, survivorship, policy, advocacy, and oncology career info, and explore a huge exhibit hall.  Last year I clocked five miles a day just walking between sessions!

I’ll be talking about using social media to improve outcomes for lung cancer patients.  The meat of the program includes case studies presented by four research oncologists (including, coincidentally, my Denver oncologist Dr. Ross Camidge), and panel discussions. PeerView tells me this may be the first time a patient has been the lead speaker at an ASCO CME (Continuing Medical Education) program. I’m honored that the sponsors and my fellow speakers believe I’m up to the challenge.

At my request, PeerView modified their registration form so patients and caregivers/advocates can register for this event. If you’d like to see me speak, you can register (no charge) to attend in person (and have a free dinner starting at 6:30 PM Central) or watch the live stream online (starting at 7 PM Central).  The recording will be available later on the web (I’ll share the link when it’s posted).  Several other evening events (including the ASCO President’s Reception, alas) will be competing for the attention of ASCO attendees at the same time, so please attend and help fill the seats. Hope to see you there!

 

Edit 8-Jun-2016:

The unedited, uncut version of the 2-hour webinar in which I spoke at ASCO 2016 is available here. You must register, but it’s free. My talk begins at about 2:40, and runs about 10 minutes.

https://tallen.webcasts.com/starthere.jsp?ei=1104671

An edited version will be available soon.

Mantras of the Cancer Revolution

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Here’s an inspiring and hopeful talk about finding cancer treatments.

Targeted therapies are revolutionizing the way cancer is treated. One of the leaders of this revolution is Dr. Ross Camidge, Director, Thoracic Oncology Clinical Program at University of Colorado Hospital. He recently gave a talk to Colorado State University’s biotech students, using examples of his lung cancer research to inspire the students to careers in biomedical science.

CSU Career Center’s BioTech Connect: Ross Camidge

RECAP — Mantras of the Cancer Revolution:

The revolution in cancer treatment happened when the effectiveness of crizotinib for ALK+ lung cancer was discovered. “The whole drug development industry in cancer changed overnight. It wasn’t about finding one drug that was going to work a little bit in everybody. It was about findiing a drug that worked amazingly well in a small number of people.”

Camidge stated the following “mantras of the cancer revolution”:

1. One size does not fit all
(personalize cancer treatment based on each individual’s cancer)

2. Don’t walk away from a good thing
(if the targeted drug is working, stay on it as long as possible)

3. If the cancer moves, follow it
(if the cancer moves into brain, make a drug to treat the brain)

4. Question everything

Disclosure: Dr. Camidge is my clinical trial oncologist. I feel incredibly blessed to have him leading my lung cancer team.

#LCSM Chat Preview March 13 – Stress, Anxiety and Lung Cancer: How Do You Cope?

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The post below is reblogged with permission from the LCSM website.

Patients and caregivers experience considerable stress and anxiety as a result of lung cancer diagnosis and treatment. How do you handle stress? Is it possible to prevent stress or is it ‘just a part of life’?  Some individuals handle stress and anxiety better than others. We want to explore this topic in more detail during this week’s #LCSM chat.

T1: What kinds of stress do lung cancer patients experience due to their cancer diagnosis or treatment?

 T2: What can healthcare providers do to help reduce stress for a lung cancer patient or caregiver?

 T3: What can patients and caregivers do to help reduce stress for themselves and each other?

Our guest for this chat will be Dr. Niki Barr, (@nikibarrphd), a Dallas, Texas, based psychotherapist who specializes in working with cancer patients and their families and teaches them how to “move through the continual challenges of cancer with emotional wellbeing”.

We know this is a very sensitive subject and we don’t expect anyone to share his or her most personal stories in such an open forum.  So we are offering an opportunity for you to submit questions to Dr. Barr in a confidential setting.  If you have a question you’d like answered or addressed during the chat, please email us at lcsmchat@gmail.com.  Only those of us associated with #LCSM Chat will be privy to the contents of the email. We will then forward the questions to Dr. Barr for possible use during the chat. Please note that if we use your question, we won’t use your name. 

 Please join us Thursday, March 13, 7 CT/8 ET, for an in-depth conversation about stress and anxiety associated with a lung cancer diagnosis. 

Thoughts or questions? Email us directly at lcsmchat@gmail.com, leave a note on our blog or send us a direct message on Twitter, @lcsmchat.

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

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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:
http://www.cms.gov/medicare-coverage-database/details/submit-public-comment.aspx?DocID=274&DocType=nca&DocName=Lung+Cancer+Screening+with+Low+Dose+Computed+Tomography&NCAId=274&bc=AAAAAAAAAAQAAA%3D%3D&

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
http://cancergeek.wordpress.com/2014/02/18/call-to-action-performing-low-dose-ct-lung-cancer-screening-please-comment-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”?

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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

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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.

Love,

A lung cancer patient who never smoked

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

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[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!

The Side-Effects Samba

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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 ….

About the Manner of My Death

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[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

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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!