Donna Johnson: Metastatic Basal Cell Carcinoma
Colorado Springs, Colorado
I am a two-plus year survivor of metastatic basal cell carcinoma. The drug vismodegib (Erivedge) saved my life and renewed my hope that I can continue on this path to a full and vibrant existence.
I was diagnosed with basal cell carcinoma in 2006 and did not think too much about it after the tumor had been surgically removed. My doctors assured me that it was a type of cancer that almost never spreads to other parts of the body, and we all thought that everything would be okay.
How wrong we were. In 2010, after experiencing tremendous pain in my shoulder and neck, my doctor discovered that my basal cell carcinoma had recurred internally. It was not visible on my skin but had invaded my shoulder and neck tissues. I had surgery, during which surgeons scooped out most of my shoulder and neck and removed a lot of my collarbone. They used muscle from my breast to hold my shoulder in place.
The surgery gave me some relief, but the pain returned in early 2011. An MRI scan in April revealed that the cancer had come back with a vengeance. I saw several doctors in Colorado who told me there was little they could do. One suggested cutting the nerves to my shoulder to relieve the pain, while another told me amputation was the only option. I was in unbearable pain—high doses of oxycodone did nothing for me. I was desperate.
My life changed after my stepfather in Arizona told me about a clinical trial for metastatic basal cell carcinoma that he had read about in a local paper. I immediately contacted the center that was running the trial and got enrolled. I began receiving treatment, the test drug vismodegib, at the Virginia G. Piper Cancer Center at Scottsdale Healthcare, in Arizona, at the end of August 2011. By the end of September I had stopped taking all my pain medications. It was unbelievable how quickly my life had turned around.
Not only did vismodegib rapidly eliminate my pain, it also made me feel better all around. One of my affected lymph nodes was three inches in diameter when I started the clinical trial; it had shrunk by 50% within a month. Today, having been taking the drug for almost a year, I can say that my cancer has stopped progressing and that all my tumors are receding. I attribute this almost exclusively to vismodegib, although I did have a six week course of radiation to help things along in March 2012. I live with side effects of the drug—hair loss and muscle cramp—but these are minor compared with pain that I experienced before.
I continue to take vismodegib once a day and will have to do so for as long as it keeps my cancer at bay. But that has become much easier since the FDA approved the drug in January 2012 and I no longer have to travel to Arizona to receive it. My doctors have told me that it is likely that my cancer will be smarter than the drug that I take and that it will eventually return. But I remain hopeful. There are so many amazing minds out there working on the problem that I believe it is only a matter of time before yet more doors are opened to new treatment options.
So what wisdom can I share from my cancer experience? Be your own advocate. Educate yourself about clinical trials because your doctor doesn’t know everything and new treatment options are always being developed. And most importantly keep fighting. I am living proof that it is possible to regain your life.
The AACR was saddened to learn of Donna Johnson’s passing. We are deeply grateful to Donna for sharing her experience with metastatic basal cell carcinoma in the AACR Cancer Progress Report 2012 to help educate others and advocate for continued funding of cancer research. We send our sincere condolences to Donnas’ family and friends.
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