Home » Posts tagged 'clinical trial'

Tag Archives: clinical trial

Alive for Thanksgiving

Posted on by | 1 Comment

Today those of us in the USA celebrate Thanksgiving.  I have much for which to be thankful.

I’m thankful I beat the lung cancer odds and lived to see this day. No matter how much longer I may have, each day is a gift.

I’m thankful for my family (whether related by blood, marriage, or adoption)—husband, children, siblings, nieces and nephews, cousins, and companion animals. I’m grateful for the time I get to spend with each of you.

I’m thankful for my friends, who became family through shared interests and experiences. You bring me joy whenever we’re together.

I’m thankful for the beauty and majesty of the Pacific Northwest, and the wondrous, awesome, fascinating universe in which it fits.  I never tire of learning how it all works.

I’m thankful for the arts.  They stimulate my senses and inspire my imagination, often when I most need it.

I’m thankful to have a home and enough resources to live comfortably. I know many people locally and globally are not so lucky.

I’m thankful to live where I’m allowed to say what I think freely.

I’m thankful for the researchers, healthcare professionals, organizations and techies that made it possible for me and other patients to live another day.

I’m thankful for people who care for lung cancer patients.  If a friend or loved one has metastatic lung cancer, ask if you can help them learn about mutation testing, targeted therapies, and clinical trials. You might help buy them more time. And more time is precious.

Happy Turkey Day, everyone!

Scanxiety, Round 30 (ish)

Posted on by | 6 Comments

Tomorrow I’ll have a PET-CT scan plus a brain MRI to determine if my cancer has recurred. I’ve had around thirty scans of one type of another since my cancer journey began twenty-nine months ago. In my current clinical trial, I have a PET-CT every eight weeks and a brain MRI every six months.

You’d think scans would be old news to me by now. In some ways, they are. This past week was pretty normal in most respects, without undue anxiety or sleeping problems. My scanxiety’s been lessening as I accrue more months of NED (No Evidence of Disease) on Xalkori. Life continues to inch towards normalcy. At times I even forget that I have metastatic lung cancer.

I’m not totally immune to scanxiety, however. It finally hit me yesterday evening. When packing for my flight to my clinical trial in Denver, my brain seemed to fight me every step of the way. When hubby came home after working late, I couldn’t shift gears to get my packing prep out of his way. When I finally got to bed, I didn’t fall asleep for hours. When driving to the airport this morning, my mind kept wandering to somewhere other than the highway in front of me. When going through airport security with my oxygen concentrator, I couldn’t help remembering I was a lung cancer patient traveling for treatment.

Despite all that, I’m more hopeful than I’ve ever been going into a scan. I know I’ll likely have to deal with active lung cancer again eventually. Hopefully I’ve finally trained October not to bring me a recurrence (it has the past two years).

Still Dancing — OK, Walking — with NED

Posted on by | 9 Comments

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 …