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Hi Lucas, you’re so right – reading all the papers and research on it can be overwhelming. It’s a fine line between knowing enough and knowing too much sometimes; that said we feel lucky to have access to it. Thank you so much for sharing your story with me. Hearing from all of you, your experiences and guidance is the best therapy tbh. Can’t overstate how grateful I am that you and others are still helping others that are just starting their journeys. And, I’m so glad you had such a good response on IPI/NIVO – that’s amazing! Gives us much hope.

We await the PET/CT and are working to schedule appt to get second opinion. Hope to have some answers and a way forward soon. Until then, I hope you’re doing well and thank you again for all of your help.

Heidi

Hi Celeste, thanks so much for taking the time to respond. The information you provided is extremely helpful and exactly what I was hoping for. I’ve put in a call to MD Anderson and am trying to get an appt with Dr. Tawbi. Finders crossed. So very thankful for you and Ellen and so many others here for sharing your stories, experiences and guidance. Hugs, Heidi

Hi Ellen,

Thank you so much for replying. It’s what I needed to make the initial call to MD Anderson today. Thanks again for your guidance! Heidi