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progression and update

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Hi all,

I am currently waiting until a clinical trial activates in Boston that will target KRAS specifically.

I did send all my records to NIH as suggested by Tom. However, what they recommended is not as up-to-date or appropriate for my specific cancer as what my doc in Boston is recommending. I shared all the feedback from NIH with my doc and she explained the reasons why those trials and/or treatments wouldn't be in my best interest. So, I'm in waiting mode and trying to enjoy the rest of my summer break!!




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Hi Ro-

Are you going to see one of the “mutant gods”’of Boston?  There’s so much terrific research going on at MGH in the driver mutation space.  That seems to be the place to be!

Keep us posted and we’ll keep praying! 


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Unfortunately, Amgenis only for KRAS G12C- My mutation is KRAS G12D...So, I'm waiting for a trial that will inhibit MEK and RAF downstream. IT's a Phase I and should activate in Boston soonish!


Yes, my doc at MGH is Dr. Alice Shaw...She is wonderful!!


Best, Ro

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Start one by creating a KRAS discussion topic on the forum like Robert did with duva. Then let participants join and when you get folks interested, start a Summit. 

Get the people interested first; a Summit then follows as a natural progression. 

Stay the course. 


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So true Tom. The first ALK Summit was a social meet up of 20 patients last year. This year they were able to get some pharma contributions to land heavy hitter experts. There were over 200 people that showed up!  It was an amazing experience.  Ro I can put you in touch with one of the conference organizers if you’d like at some point.  

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I know so little about the mutations of cells and appropriate treatment, but I'm starting to learn as one never knows when the knowledge will come in useful.  My prayers and thoughts are with you and I'll keep an eye out for your next update.


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