Non- Small cell lung cancer with PIK3CA H1047R Mutation

Posted by ina3 @ina3, Jul 15, 2020

Hi,

Anyone here with PIK3CA H1047R mutations? My dad just did a liquid biopsy and this is the new mutation that we got. He has been on Keytruda for 2 years with PDL1 positive and recently diagnosed with LMD.

Suggested treatments that was included in the reports are these and we have not discussed it with doctors yet.

Alpelisib
Everolimus
Temsirolimus

Any advice will help greatly.
Thanks
Ina

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Colleen Young, Connect Director | @colleenyoung | Jul 19, 2020

When will you be discussing the treatment options with the doctors? What did you decide?

Merry, Alumni Mentor | @merpreb | Jul 19, 2020

@ina3- Good morning. As you probably know we are a patient to patient-oriented community. We can't give any medical advice. I know that you live in a different country than your dad and are very afraid and frustrated and rightly so. However, your father's doctors are the best people to advise your family. Your dad's cancers have mutated to the point where it's difficult to understand what they mean. Your Dad has braved a lot of unusual history with his cancers and he is still fighting. I'm sure that a lot of that has to do with great recommendations from his Oncology team. What do you think will be your dad's choice will be based on what his doctor has suggested?

Lisa, Volunteer Mentor | @lls8000 | Jul 20, 2020

Ina, I’m ALK positive, a different gene mutation than your father has. Each of the mutations are very different in the way they act and in the medications that they respond to.The science behind the targeted therapies is nothing short of amazing. I’ve had remarkable success on a targeted therapy. I was feeling better after the first week of starting the medication. I wish you well, and hope you find a therapy which performs well for your dad. Take care, Lisa