← Return to New here: Looking for others who have NSCLC and information

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@lls8000

Hi April, I'm glad you found Connect. This is such a hard time, but you'll get through it. There's so much information, it can certainly be overwhelming. The stage of your cancer can have an influence on what type of treatment your insurance may pay for, so it can be important. There are some clinical trials that are giving alectinib in some earlier stage ALK cancers. But I can't offer too many details there, other than it may be something to ask your oncologist about. If the oncologist determines that you are stage four, then a targeted therapy/TKI (alectinib, lorlatinib, etc.) is likely appropriate. You should be in good hands at Stanford!, they certainly see other ALK patients, and should likely have a team approach to determining what's best for you.
I am stage IV, 53 years old, and have been on alecensa/alectinib as my first line treatment (my only treatment so far). I've made it 3 1/2 years with no signs of progression. Some of the original clinical trial patients are still taking alectinib without progression (~8 years), so there is HOPE. Some oncologists are having patients take loratinib as their first drug now too. Both meds have their own list of side effects, so it really is a personal decision. Both are effective and protect the brain.
Don't hesitate to reach out with questions, I'm happy to help where I can from the patient perspective (I'm obviously not a doctor :)).

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Replies to "Hi April, I'm glad you found Connect. This is such a hard time, but you'll get..."

Hi Lisa, thank you for all that information. I think I told you I am 56. The local cancer care where I live wanted to go straight to Alecensa and then surgery. But I did not want to have surgery here at my local teeny-tiny hospital, so I went to Stanford for a second opinion. The surgeon at Stanford wanted Chemo first- then surgery. I do trust my team. I try not to read too much online then I start to second-guess my treatment plan. Are you having side effects from the alecensa? I am glad your cancer has not spread. I know treatment is evolving rapidly for ALK patients. Do you do a scan every 6 months or so? I really want to return to work as I am the main wage earner in my family and my work provides our health care coverage. I am on medical leave and my work told me to take as much time as I need. I am getting my full salary until mid-December. I really appreciate all the information you have provided. thanks, april