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@aprilradek

Hi Lisa,

Thanks for the site info I already checked it out, lots of information. I may be stage lV or III it depends on the results of the fluid I had in my lungs. It was such a small amount the surgeon was going to try to get some and send it with the rest of my samples. The NP didn't say anything about my fluid just my lymph nodes. Are you on ALECENSA or a different targeted therapy? There was some talk of my taking ALECENSA pre-surgery, but the team went for chemo first. It is nice to meet another ALK patient. I will let you know what the oncologist recommends next, I live in California I and am getting treatment at Stanford.
April

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Replies to "Hi Lisa, Thanks for the site info I already checked it out, lots of information. I..."

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 :)).