Coping with Side Effects

I have a 20-pound lifting limitation on my right arm from radiation damage. My right brachial plexus — the nerve bundle that controls the right arm — took a full dose hit last summer.

I take an engineering approach to such limitations. I find myself looking at boxes I need to move and thinking, “If I take out these books, then the box is only 40 pounds, and if I divide that by two arms …”

I do not tell my radiation oncologist about these moments.

I hope he’s not reading my blog today.

Still Dancing — OK, Walking — with NED

My August 12 PET-CT scan still shows No Evidence of Disease (NED). Woohoo! Having completed 10 cycles on Xalkori without progression, I now go to Denver at 8-week instead of 4-week intervals for my ROS1 clinical trial, and have labs drawn at my home clinic between Denver visits.

I have muddled my way through hamstring rehab and am back to VERY basic strength training with light aerobic exercise on the recumbent bike and treadmill. The best description I can find for my state of fitness is “wimpy.” If I walk one city block here at sea level at a moderate pace (about 2.5 mph), my breathing speeds up a good bit and my heart rate rises to 140! I have to use an oxygen compressor to walk in Denver without gasping or stopping after 500 feet. The persistent Xalkori-induced edema isn’t helping.

The physical therapist tells me it will take a looooong time to rebuild the muscles that have atrophied due to disuse and cancer treatment. I made sure she gave me clear guidelines about pacing my recovery, because, as you all know, I’m SO good at taking things slow.

I’ve developed something called “trigger finger” in my hands, and the oncologist says he doesn’t think it’s related to taking Xalkori (although edema might play a role). Because of this and some other issues, I’ve scheduled an appointment with my primary care doctor to discuss whether my thyroid is starting to misbehave in response to the radiation dose it received last year. However, other non-cancer conditions could cause my symptoms, too. Rather than diagnose myself (I know, I know — why stop now?) I’ll hear what my PC doc thinks.

So, here I am, just taking life slow, glad I’m around to enjoy the magnificent Pacific Northwest summer. I’ll be speaking at the World Science Fiction Convention in San Antonio this year over Labor Day, then mostly hanging around the house attempting to declutter and find the floor of my den once again.

Wait …

Wouldn’t it be wonderful if I could actually HIKE somewhere next year? Or take a cruise in the Mediterranean? Or …

Moves in the Cancer Endgame

My dad taught me to play chess when I was small. I learned the game fast, and could soon beat other kids older than me. However, when I faced an opponent who was much more skilled than I, my attention eventually wandered. I lost the endgame because I’d lost patience.

A chess game transitions to the endgame when few pieces are left on the board. Whatever strategy positioned pieces prior to the endgame becomes irrelevant. The pawns, which initially were the least powerful pieces, become important.

Recently I was playing a much more highly-rated player online (thank you, Nancy Kress) and realized something in my attitude had changed: I had developed patience for the endgame. Even though I had been outmaneuvered and did not possess enough pieces to win, I kept looking for my next move. I wanted to keep the game going as long as possible.

Metastatic lung cancer is a tough opponent, and the odds favor it winning. Several powerful treatments didn’t finish it off. I haven’t many therapy pieces left. But I keep searching for my next move, even if it can’t give me victory. Clinical trials are now my best pieces in the cancer endgame. I want to keep playing — and living — as long as I can.

Cancer taught me patience for the endgame. Maybe someone else will learn from how I played.

Celebrating World Lung Cancer Day

Today I celebrate World Lung Cancer Day.

World Lung Cancer Day photo WorldLungCancerDay_zps2e0c3e69.jpg

Lung cancer claims more lives than any other cancer. According to the American Cancer Society, each year, more people die of lung cancer than of colon, breast, and prostate cancers combined. Yet the survival rate and funding dollars per death are lower for lung cancer than for those cancers (and almost all other cancers). The CDC lists lung cancer (not breast cancer) as the leading cause of cancer death among women.

Lung cancer deserves more research funding. Anyone who has lungs can get lung cancer. About 60% of newly-diagnosed lung cancer patients are non-smokers or never smokers, and lung cancer in never-smokers ranks among the top 10 fatal cancers in the USA. And, regardless of one’s habits or behaviors, NO ONE deserves to die of lung cancer.

Already more metastatic lung cancer patients like me are living longer thanks to targeted therapies, maintenance chemo, and changes in standard of care. Lung cancer statistics will continue to improve as more patients start to benefit from upcoming early detection methods (like CT screenings and biomarker testing), improvements in treatment options, and an increased national focus on lung cancer research.

Here’s hoping for more successful treatment options for all lung cancer patients, and a cure in my lifetime — which means SOON.

LUNGevity announces its 2013 Research Awards

I received the information below in a news release email from LUNGevity today. It’s encouraging to see the research undertaken for lung cancer patients, especially research related to the KRAS mutation (for which few therapies currently exist), lung cancer resistant to radiation therapy, and acquired resistance to targeted therapies (like Tarceva).

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LUNGevity is proud to announce our 2013 Research Awards!

New LUNGevity awards are enabling promising research into managing lung cancer treatment more effectively, as well as preventing the disease in high-risk populations.

Six exceptional researchers have received 2013 LUNGevity Lung Cancer Research Awards. They join a community of brilliant LUNGevity-funded scientists across the country who are working to help people with lung cancer live longer and better.

 

2013 Career Development Awards for Translational Research were made to the following researchers.

Timothy Burns, MD, PhD, University of Pittsburgh Cancer Institute, is working on targeted therapy for non-small cell lung cancer (NSCLC) patients with mutations in a gene called KRAS, using a new class of drugs.

David Kozono, MD, PhD, Dana-Farber Cancer Institute, will identify which genetic types of lung cancer are the most resistant to radiation, and which of these may be best treated with a combination of radiation and bortezomib, a drug already FDA-approved for another type of cancer.

Meredith Tennis, PhD, University of Colorado Denver, will identify biomarkers that signal whether a patient is likely to benefit from iloprost and pioglitazone, two drugs that have demonstrated promise in reducing NSCLC risk, and whether they work in a clinical trial setting.

 

2013 Targeted Therapeutics Awards for Translational Research were made to the following researchers.

Balazs Halmos, MD, Columbia University Medical Center, is working on a way to increase the effectiveness of radiation and chemotherapy that could also lead to personalized NSCLC treatments, especially for the third of all lung cancer patients with locally advanced lung cancer.

Lecia V. Sequist, MD, Massachusetts General Hospital, will develop models that explain how NSCLC patients can acquire drug resistance to targeted therapies after a period of initial successful treatment, leading to the development of new treatments to help patient overcome the drug resistance.

Frank J. Slack, PhD, Yale University, is studying the KRAS-variant, a recently discovered KRAS mutation found in over 20% of NSCLC patients, which has been shown to predict a patient’s response to cancer treatment. His research aims to confirm the role of the KRAS-variant to direct cancer therapy for lung cancer patients and as a potential future target for therapy.

 

The work of these talented researchers will help ensure continued progress in fighting lung cancer. Special thanks to Genentech and our other donors for their support of the LUNGevity Scientific Research Awards Program. Read more about these exciting projects. In addition to these awards, LUNGevity will announce funding for awards through its Early Detection Awards Program later this year. Please stay tuned!

It’s My Cancerversary — And I’m Choosing to Live

Today is my cancerversary. Two years ago on this date, I was diagnosed with advanced lung cancer.

While my current status is No Evidence of Disease, I know the cancer is still lurking in my body; it’s only being suppressed (not cured) by the targeted drug crizotinib.

I’ve felt myself sliding towards depression this week. I know from past experience what depression feels like, and I do not want to go there again. I suspect subconcious awareness of my cancerversary is part of the reason. Physical discomfort due to treatment side effects (especially hand pain), steroid-induced excess weight and a newly-diagnosed partial hamstring tear aren’t helping matters. It also bugs me that fatigue has kept me from being as supportive as I’d like when my husband recently had cataract surgery.

When I woke up this morning, I realized that somehow, sometime, I had adopted a victim mentality. I have been passively accepting the crap that my body was handing me. That is simply not acceptable.

True, the cancer ain’t gone, but neither am I! Through no small effort of many people, including myself, I am alive. I am not going to waste the gift.

I can’t choose not to have cancer, but I CAN choose how I want to feel about it. Today, I choose to feel empowered and hopeful.

I can’t choose not to have side effects, but I CAN choose not to let the discomforts of my body keep me from exercising. Exercise makes a huge difference in my mood. Today, I choose to go swimming for the first time in years.

I can’t choose not to be fatigued, but I CAN choose how I react when the irritability rises unbidden. Today, I choose to hold my tongue and listen for understanding.

Today, my cancerversary commemorates not just the start of my cancer battle, but my renewed efforts to LIVE.

To celebrate, I bought new underwear. Take THAT, cancer! 😛