Today I decided that I want to meet with another oncologist.
When I began this journey (yesterday marked three months since diagnosis), I met with a great surgeon at the University of Pennsylvania. The purpose of that meeting was to a) get his opinion on my case and b) see if I liked him in case I needed a more invasive biopsy.
At that time, the path was very clear. My cancer tested positive for a rare genetic mutation, and the FDA had just approved a non-chemo drug for it. Xalkori held the most promise with mild side effects.
After one month on Xalkori and a whole lot of prednisone, my chest x-ray showed a 15% improvement. The second month showed “slight” improvement. During the Xalkori trial (Study A), 79% of responses were achieved during the first 8 weeks of treatment. This data supports the possibility that I’ve seen all the benefit I will get from Xalkori.
In an article published just last week, Massachusetts General Hospital Cancer Center doctors discuss the various ways patients acquire resistance to crizotinib (Xalkori). One of my peers, known on the Inspire.com forum as ‘Craig in PA’ summarized it well:
This resistance is “an example of how amazingly adaptable the human body is. You can inhibit or break a gene and your body will try to compensate; you inhibit something more, and it tries to compensate again.”
My next PET scan is scheduled for February 23. This will show how the cancer has changed and also look for any metastases. We expect to see the 15% shrinkage and no spread to any other organ. I will get the results when I meet with my oncologist the following Monday.
I expect my doctor will give me his recommendation on whether I continue with the Xalkori for a few more months or pursue chemotherapy. Either way, I’m going to seek a consultation with another oncologist.
I like “consultation” instead of “second opinion.” ‘Second opinion’ sounds as if the first was incorrect. And of course, that’s (usually) not the case. I really like and trust my doctor. But I can’t expect any doctor to know everything.
So where do I go? I’m fortunate to live in a suburb of Philadelphia, home to some of the best cancer programs in the country. I think I’ll take a two-phased approach. First, I’m going to call the Penn surgeon I saw in November and ask him for a recommendation. Second, I’m going to try to get in touch with one of the doctors at Mass General. They are well-versed on ALK+ patients since they are one of the crizotinib trial sites. I’m not sure if those doctors are accepting non-trial patients, but it certainly won’t hurt to ask. It wouldn’t be convenient, but I could take the train to Boston when necessary.
No matter whose treatment plan I follow, I hope to continue to be monitored by my current oncologist. When I was first diagnosed, the nurse assured me that they would work with any other group to get me the care I need.
So that’s my plan. I have a strong sense that I’m approaching crossroads, and I don’t want to make a poor decision. If the next course of action is chemotherapy, what is the cost/benefit analysis? Are the odds of cancer shrinkage worth the anticipated side effects? Or… maybe I should be satisfied with the control I have with Xalkori. After all, the cancer improved a little in month 1 and certainly hasn’t worsened since then.
I hope to have answers to these questions and more by the end of February. Stay tuned…