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Nadia1
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Nadia1

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      • March 20, 2020 at 10:59 pm
      Nadia1
      Participant
        Thank you for sharing this so we can be aware of this possibility. My mom is on Tylenol because of her blood thinners but has been lucky so far with liver labs (no fuss made about Tylenol during her immunotherapy). Just had a call with the specialist pharmacy for Braf / Mek inhibitors who flagged her BP meds and Zofran too for possible interaction with MEK inhibitor which I hadn’t heard before – every one has a different opinion so I just keep a list of all that I hear and hope for better consensus one day:(. Stay strong! Nadia
        • March 20, 2020 at 10:33 pm
        Nadia1
        Participant
          Thank you Shelby (I did not receive it). I wanted to ask if there is a way to follow up for those of us who attended Hill Day – can we set up a sub-group here or an email list to check on each other, follow up on advocacy work and also to share how treatment/access to care is going (after putting faces to names)? Thank you and stay safe! Nadia J.
          • December 9, 2019 at 2:24 pm
          Nadia1
          Participant
            John, thank you for posting your question. My mom couldn’t tolerate taf/mek or Braftovi/mektovi and after progressing on a clinical trial (PV10 + pembro) her new doctor at MSK suggested Vem/Cobi at 1/4th dosage and she went from being bedridden to fully functioning. Now she is resistant (after increasing and tolerating well increased dosages!) and I’m looking at trials vs ipi/Nivo (despite failing both previously) after SBRT for returning bone met. I feel like many people don’t get the option to start targeted therapy at lower doses!! It might be an option for you.

            That said, thank you so much Celeste for this primer!!! I didn’t know you can call the investigator and (maybe) they would answer questions because the experience we had with our local hospital and trial was so odd- thankfully at MSK now and will also reach out to Dr Weber!!!

            Ed thank you for your list and link! I do hope we hear from Mike soon.

            Mark have you done genetic tests? I would like to post a question asking the board about the best tests- we are doing Impact finally after being told any testing is useless by several previous providers and second opinion docs since 2014!

            Best, Nadia

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