Friends and Family,
My six and a half year streak on Tagrisso is not over! Genevieve and I have never been more grateful for Dr. Patel, my UCSD oncologist, and for his expertise. If we had listened to my general oncologist, we would have abandoned ship and been ready to start a new one-size-fits-all treatment, plus get radiation. Instead, no changes are needed for now. We’re doing the happy dance!
When we met online today Dr. Patel looked at the same diagnostic images and the same radiologist report that made it seem like my entire body was being taken over by cancer, and said it looked encouraging to him. What is going on here???
The area of most concern to us was the lymph nodes. Dr. Patel thinks there is a strong chance that the lymph node “hot spots” are my body’s immune response to the COVID vaccine, and not cancer at all. This is important info for all women and all of my cancer friends to know: He sees a lot of inflamed lymph nodes in PET scans and mammograms after COVID vaccination, so he is giving anyone with inflamed lymph nodes a “Mulligan” (a do-over). If your oncologist wants to make treatment changes based on enlarged lymph nodes, it might be worth reconsidering. Dr. Patel expects it to take four to six months after vaccination for anyone’s body to adapt and the lymph nodes to settle down to normal.
He noted that the tumors in my lungs hadn’t grown at all, even if they looked “hot.” In fact, one of my tumors had shrunk! I’m still scratching my head over that one. How does that happen, six and a half years after starting a treatment?
That only leaves the “hot spot” at the break in my rib. He didn’t address cause, though Genevieve and I wonder if inflammation in a healing bone is typical. He said we should avoid radiation unless I need it for pain relief, which I don’t.
This is a reminder about slowing things down and getting help from a lung cancer specialist. All doctors are not good at all things. If we had not gotten the second opinion, I would have given up on the most successful, easy-to-tolerate treatment options I could hope for long before I needed to, which likely would have shortened my life.
I often tell people this, but all of the ultra-long-term survivors I know that are still in active treatment are strong advocates for themselves, and all have been in at least one clinical trial.
Thank you to every one of you who has reached out to Genevieve and me to offer your love and support. I am grateful beyond words. Doing the advocacy part is important, but without you I wouldn’t still be here. Love matters.
Genevieve and I are beside ourselves with excitement at this turn of events. My head is spinning and I’m exhausted. What a ride this has been.
This post originally appeared on Dann’s Cancer Chronicles on April 20 2021. It is republished with permission.