Health update: I can live with the news from Roswell this week.
The scans show that growth is starting, but only a small amount so far. I will stay on Tagrisso for another 3 months with the realization that the next scan will probably officially show progression.
My doctor and I updated our treatment plan. In 3 months time, we plan to do a surgical biopsy to remove a lymph node (she has already identified one of interest) to send for Foundation One comprehensive molecular testing. I may go to standard carboplatin/permetrexed chemo at that time, the Foundation One test may reveal another target we can go after, or there may be a new phase 1 trial that would be a good choice. A lot will depend on timing - getting into a good phase 1 trial is a matter of being in the right place (both geographically and disease status) at the right time. It sounds like there might be something completely new making its way into the pipeline for people with my particular subtype of mutation-driven cancer, but I don't know any details yet - my doctor is not yet ready to disclose details of this new trial.
So onward to live the heck out of the next 3 months. I feel like I can actually make plans for the fall!
- Anita
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Hi I go to Roswell too and was wondering if you know of a support group. Since Gilda's closed and Life Transitions changed, it seems that there aren't any good support groups in real life.
I travel from northern NY so support groups at Roswell aren't an option for me. I saw a sign on a bulletin board about support groups for lung cancer patients, but don't remember details. Maybe the Thoracic Center would know if you called, or the Survivorship Center.
I wish you the best on your journey. This is my 5th primary cancer, and I miss Gilda's Club. I will call Monday and see what I can dig up, but prefer to have a group that isn't focused on just lung ca. Luckily, I live in the suburbs so Roswell is close for me.
Anita, I am sorry to hear that these scan results are not what anyone hopes. Your attitude is admirable and so encouraging. Thank you for sharing. I'm praying for you.
Jennifer, I wasn't surprised which helps with the emotional impact. Targeted drugs are great while they work but at 14 months, I was at the point when most people become resistant. I'm grateful I get to squeeze 3 more months out of the drug I'm on.
Good to hear from you again. Though you results are not what we all hoped for, they are not all bad. It sounds as though you are making some fun plans. Love your spirit and strength. I hope you plan to do some knitting along the way.
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