Karen Weiss: She's a 1der
My journey with cancer began 22 years ago when I was first diagnosed with very early stage one melanoma. I had no treatment. I just had surgery to remove the melanoma and to get clean margins. Back then they did not do sentinel node biopsies for melanoma at least where I was treated.
Fast forward 20 years, I felt a lump in my thigh. After being told first that it was probably a cyst I waited awhile and when it persisted I then decided to go back to the doctor and with further investigation and biopsy found out it was likely a return of melanoma now advanced staged. This was December 2018. Fortunately for me it only showed up in two lymph nodes, one in my abdomen and one in my thigh. A stage 3B diagnosis. Needless to say, I was devastated. I thought I was just given a death sentence. We learned quickly that there was a lot of variance of treatment protocols because of the new immunotherapy treatments and the new targeted therapies available. And the very new protocols for neo-adjuvant therapy based on a very new study out of MD Anderson. It was all very confusing. We decided to visit MD Anderson and MSKCC to help us sort out next best steps. I started on 2 new targeted therapies that had just been FDA approved six months prior to my diagnosis. I responded quickly to these medications and after several months (even after a dose reduction) there was no evidence of disease. The current protocol was still to have surgery and remove lymph nodes. I was very unhappy about this because it really did not make sense since there was NED now. I decided to have the surgery because it was the recommendation and I did not want to risk another reoccurrence. I had 10 inguinal lymph nodes removed in April 2019 and in July 2019 I had another surgery to remove five lymph nodes from my abdomen. I live daily with lymphedema in my left leg. While being treated for the melanoma and having scans every three months my doctor noticed that I had enlarging lymph nodes in my chest and a small spot on my lung. The medications I was taking were very toxic and I did have to dose reduce and he thought it could be inflammation from the medication. After four months there was metabolic activity on the next scan and the doctor decided it was time to do a biopsy. In January 2020 I had a lung biopsy and learned that it was not inflammation or the melanoma but that it was ROS1 lung cancer. Of course our heads were spinning and we were very frightened. I was diagnosed with a second advanced stage primary cancer at stage 4 ROS1 nsclc. I had Mets in my spine and hip as well as many enlarged positive lymph nodes in my chest and a tumor in my right lung.
My treatment journey began immediately. My husband had read about the drug Entrectinib that was just FDA approved six months prior to my diagnosis. He found the Doctor that was running the clinical trial on the drug and we made an appointment and met with him at Memorial Sloan Kettering. Dr. Drilon is this Dr and we were very appreciative to get in to see him and felt hopeful. I immediately had to quit taking the melanoma drugs. Taking both would be much too toxic. There was such a whirlwind of emotions at this time while trying to juggle two advanced stage primary cancers. The task seemed daunting. But I was determined and still am to beat these cancers.
After being on the entrectinib and having side effects that seemed minor compared to the side effects I had from the melanoma drugs, we learned from my scans that the drug was working. My cancer was again shrinking and I was responding well. I was feeling very very fortunate once again.
I was also feeling very fortunate when my husband found the Ros1 Facebook group. This group has helped me so much. Thank you to Janet and Lisa and the others that are so dedicated to find answers through research to hopefully eradicate this disease!
I work daily on doing what I can to keep myself as healthy as possible. I do know that it is critical that more research is done immediately for ROS1 and other rearrangements so that more permanent and better treatments become available to all of us!!
Stay well and think positive and as one person told me, BELIEVE you will heal. It is possible.