I haven’t blogged much about my cancer status or advocacy activities in 2016. Not to worry — I’m still dancing with NED (No Evidence of Disease), still taking Xalkori (crizotinib) for my stage IV lung cancer, and still advocating for improved outcomes and quality of life for lung cancer patients. Life has just been amazingly, overwhelmingly busy up through July, and my blogging became one of the dropped balls in my juggling act.
How busy, you ask? Here’s a summary of the past nine months. The numbers are estimates, as I had trouble reading the small print I had to use on my calendar to fit everything in.
- Traveled 54 days for advocacy and writing
- Traveled 28 days for my clinical trial in Denver (and got snowed in once)
- Gave 25 formal presentations or informal talks
- Presented a poster at a medical conference (in AACR Scientist-Survivor Program)
- Attended 7 medical conferences
- Attended a 5-day writers’ retreat (wrote a new short story!)
- Participated in working groups for 3 healthcare agencies (including the National Cancer Institute)
- Attended 3 science fiction conventions
- Worked on 2 patient-initiated research projects (ROS1, and biobanking tissue of deceased patients)
- Consulted for 2 pharmaceutical companies
- Moderated a joint #LCSM-National Cancer Institute Google Hangout on Air
- Advocated at the US Capitol for more healthcare funding
- Captained a team for a lung cancer fundraising walk
- Co-moderated biweekly #LCSM twitter chats
And on the personal side …
- Travelled 33 days with family
- Purged unneeded books, college class notes, household items and cruft from 3 rooms
- Helped my son find and move into a new apartment (twice)
Sometimes I was barely home long enough to unpack, pile my collected travel papers on the floor, repack, and perform a couple of necessary household chores before flying out again. Glad I’ve had a few weeks at home in July and August to decompress and spend time with my family.
While compiling the statistics for this post, I begin to realize why I’ve been so fatigued. I’ve never been particularly good at taking things slow. The above list demonstrates that I must fine tune my advocacy work in order to focus on my top priorities. I need to say “no” to some opportunities so that I can have more time to process what I’ve learned and write. Juggling four conferences in April left me drained–one conference a month should do. As my husband has reminded me more than once, I am a cancer patient as well as an advocate.
I’ve been attempting to exercise regularly, give myself enough hours in bed to feel rested, eat healthy, and stay hydrated. Over the past nine months, my medical team and I have also made some tweaks to my treatment plan.
Less frequent scans. Sometime last year, I became eligible to increase the time between my scans for the clinical trial, but I was too anxious about my cancer possibly coming back to do it. However, a long talk with fellow lung cancer activist (and 11 year survivor) Linnea Olson at the World Conference on Lung Cancer in September made me realize I was having a LOT of scans over the past years. I realized reducing my exposure to radiation was probably a good thing. So, as of November 2015–at three years of NED–I asked Dr. Camidge to schedule my scans for every sixteen weeks instead of every eight weeks (I wasn’t confident enough to go with every 24 weeks). I’ve also switched from eyes-to-thighs PET-CT scans to chest and abdomen CT scans, primarily because insurance was denying coverage of the PET-CT scans.
Change of blood thinners. At the beginning of 2016, I realized the frequent labs required to monitor my warfarin dose would be difficult to accommodate with all my upcoming travel. My Denver and Seattle docs all agreed that my pulmonary embolism (remember that pesky blood clot in my lung’s artery?) probably didn’t represent an increased risk of blood clots from cancer, but instead was just a pile of fibrin sheaths that had sloughed off my power port’s catheter (I’m really good at growing fibrin sheaths). So we switched me to a different blood thinner (Xarelto) that doesn’t require regular blood tests. The downside of Xarelto is that it doesn’t have an antidote if I happen to overdose.
Crizotinib is approved! Do I stay in the trial? In March 2016, the FDA approved my clinical drug crizotinib for ROS1-positive lung cancer patients–YAHOO! This meant I had the option of leaving the trial and eliminating my travel to Denver while continuing to stay on the wonderful drug that’s keeping my cancer in check. I thought long and hard (with the help of a great blog from my friend Dann Wonser). Eventually decided I wanted to keep seeing one of the world’s top lung cancer docs (Ross Camidge) in Denver, despite the cost and hassle of travel. I love being a part of the University of Colorado (CU) lung cancer SPORE, and I’ve grown close to many people at CU. The trial will likely continue for a few more years; the crizotinib trial for ALK-positive lung cancer started in 2008 and is still ongoing. So. I’ll keep traveling to Denver for the foreseeable future–which is much shorter nowadays than when I was 20.
Regaining my balance. After my three falls in nine months, I had several sessions of physical therapy to strengthen my leg and core muscles. It improved my balance and helped me get back into exercising. Alas, I fell again at a conference earlier this month. **grumble** I’ve become a klutz in my old age. At least I’m around to see what my “old” looks like.
Dose reduction of crizotinib. I’ve struggled with swelling of my legs and belly–edema, a known major side effect of crizotinib–since my second month on the drug. Alas, it’s gotten worse with time. As of January, I couldn’t bend my ankle at the end of the day if I didn’t wear my thigh-high compression hose and take a diuretic (Lasix). My weight can go up by eight pounds in two days solely from water retention. I’m told edema is the reason patients most often cite for stopping crizotinib therapy. Dr. Camidge first offered me a dose reduction of crizotinib last year (from 250 mg twice daily to 200 mg twice daily), but I didn’t want to reduce the dose while I was also increasing time between scans–much too anxiety-making for me. However, in July 2016 I’d had enough of puffy feet and legs, and decided to try the lower dose. Dr. Camidge says he wouldn’t lose a second of sleep over the dose reduction, because he’s seen the lower dose work for many patients. I think it’s helping me. I can always increase the dose again in the future if necessary, although I’d have to leave the clinical trial if I did.
I’m de-ported! I’ve kept my power port while on oral meds, although I only use it for blood draws and scan contrast. The docs have always said it’s my choice, so I’ve left it in because it was easier than getting stuck every month (and my veins tend to misbehave). At my June 2016 clinical trial appointment, however, my power port decided it would cooperate with neither the blood draw nor the scan contrast. I’ve had the little beastie since December 2011, which is a good long run, but I finally decided it was time to pull it out. The surgeon who installed it was thrilled to be taking it out of a metastatic lung cancer patient more than four years later. So, as of July 21, I am no longer Borg. Now that I no longer have a catheter in a vein, I probably won’t be forming piles of fibrin sheaths in my pulmonary artery. My docs say if my next scan in October shows my pulmonary embolism looks good, I may even be able to go off blood thinners. Wahoo!
Coping with chemobrain. My continuing fatigue and mental fuzziness are a great frustration. Caffeine and exercise help, but don’t eliminate the problem. I finally asked my oncs what could be done, and they both suggested Ritalin, a stimulant commonly used to increase ability to attend for people who have ADHD. I take 5 mg twice daily on days when I need energy and focus (especially useful at conferences and speaking events). However, it masks how tired I truly am, and results in something of a crash when I stop taking it. I’ll be visiting a neuro-oncologist soon to explore other medication options–Dr. Camidge mentioned Provigil (a narcolepsy drug) and Effexor (an antidepressant) as possibilities, and another patient said she found Concerta (long-acting Ritalin) helpful.
So, that’s what happening with me. I promise to blog a bit more often so I won’t have as much news the next time.
Thanks for the update, Janet. You’ve been incredibly busy! I hope our group will see more of you in the coming months. I’m glad to hear that your health situation is improving. Congrats on the removal of your port and your continuing NED.
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Thank, Sandy. Hope I’m home for more Tiny Rhino critique sessions.
I’m so glad to hear how well you’re doing. Many hoorays on your progress!
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Thank you Deborah. Hope we can connect again soon.
Janet, thank you for your most recent update. I love receiving your posts. I have been battling lung cancer since May 2000 beginning with a lobectomy and traditional carboplatin/taxol chemo followed by 12 years of remission and relapse in 2013. This time it was stage 4 inoperable, port was inserted but not used for chemo because biopsies came back ALK positive. I had radiation this time and this past June I began my fourth year on Xalkori, many ups and downs with various side effects but through it all still NED and enjoying and appreciating life to the fullest. L’CHAIM to us all!
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Thank you for sharing, Beverly! Best hopes that Xalkori continues working for you.
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