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Diagnosed with breast cancer & primary lung cancer: Next steps?
Lung Cancer | Last Active: Jun 30 5:53pm | Replies (76)Comment receiving replies
@mamajite Thank you so much. That is so helpful. I believe the biggest disagreement is whether I have surgery first or the targeted drug and chemo for 9 weeks prior. Did you have surgery? Are you doing chemo alongside the targeted drug? How have you tolerated side effects? Did you lose your hair? I will call UC Davis today right after radiation. Thank you again and I pray you feel healthy and this is behind you soon. ❤️❤️
Replies to "@mamajite Thank you so much. That is so helpful. I believe the biggest disagreement is whether..."
@bdurel hello. I have the EGFR Exon 19 mutation and was first diagnosed at stage 2b in 2018. Tagrisso is the targeted therapy for this mutation, although it is not helpful for ALL EGFR mutations. So it's important to know which EGFR mutation you have. Tagrisso doesn't hunt down and kill the cancer, but it does keep it from spreading. (Well, most of the time. My brain metastasis seems to be an exception, but that's another story.)
Chemo before or after depends on many factors, so I'm going to agree with everyone else and ask you to get more opinions. You don't have to stop at two!
Finally, in the 5+ years I've been taking Tagrisso, I've only had one payment of a couple thousand dollars. Your hospital or cancer institute should have a social worker that specializes in helping people in your situation.
I wish you all the best. Feel free to ask more questions. I'm a patient research advocate and have had a lot of training on different types of lung cancer and their treatments.
Kind Regards,
Matthew
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@bdurel let us know how it goes with UC Davis. 🫶 Getting another opinion from a tumor board at a NIH Cancer Center (like UC Davis) should clear up the confusion. I'm not sure if your local clinic offers that. But a tumor board will have doctors with expertise from all relevant specialties review your case and decide the best treatment option for you.
I'm not a typical lung cancer patient. I have a genetic mutation that predisposes me to cancer (kind of like the BRCA gene for breast cancer.) I have ~30 lung nodules that were found accidentally and monitored. When I was diagnosed I had 3 primary tumors, each in a different lobe. So at that time, I was not a candidate for surgery. But because the tumors were found early I didn't do chemo. And because they all have EGFR mutations, I have been on Tagrisso for over 2 years now.
The side effects on Tagrisso are annoying but manageable. Around 10 months in I lost most of my hair. I am taking minoxidil and using red light therapy to help it grow. It's not like before, but I can get by without a wig. It doesn't affect everyone's hair, so don't be discouraged. Tagrisso's superpower is crossing the blood brain barrier, which is wonderful since this kind of cancer often mestastasizes to the brain.