Hello

[Deb B]

My journey started Oct.2016.  I was 44 years old, saw & felt a hard lump just above  my right supra clavicle bone.  No prior health issues.  Biopsy confirmed adenocarcinoma of the lung 3b. CT & PET confirmed in lymph nodes & 5.2 cm tumor in my right lung.  Then the doctors did an MRI of my brain to make sure no mets in my brain.  It was then confirmed a large tumor in my brain.  Had surgery that confirmed the brain tumor was not related & it was a rare benign neurocytoma. Had 5 rounds of cisplatin, 30 rad treatments to the lung.  June of 2017 found 3 mets in my brain, had cyberknife. My scans clear until October 2017, scan showed armpit lymph node.  Biopsy of that node tested. Came back 90 percent pdl-1 positive & c-met positive. I started Crizotinib & Tecentriq immunotherapy. Scans showed all clear on brain & body in March 2018 except for a small resistant nodule in right lung.  Just had cyberknife on it 2 weeks ago. It has been quite a journey so far.  I’m trying to connect with others who have had success with Tecentriq for high pdl-1& Crizotinib for c-met.

[BridgetO]

Hi Deb and Welcome.  You've been through a lot!. I haven't had either of those meds so can't be of any help there. I'm sure you'll get some rsponses from members who have.

Bridget O

[Deb B]

Thanks for the welcome!

[Tom Galli]

Deb,

Welcome here.  I answered several of your questions about c-MET and Crizotinib on other threads.  I'm sure you will connect with folks receiving immunotherapy but as you know, c-MET is a rare marker.  But, PDL-1 positive is a strong indicator that immunotherapy will control, even eliminate your lung cancer.  I truly hope it does.

ALL IMMUNOTHERAPY HANDS:  Please give Deb the benefit of your experience.

Stay the course.

Tom

[Steff]

Hi Deb,

By the sound of things, you've been on quite a journey for the past few years.  I am hoping that your new treatment plan will provide an uneventful portion of your journey in that it is easy to tolerate and does its job.  I have no knowledge of Tecentriq or Crizotinib.  However, my mom has been on Keytruda (another immunotherapy drug) since July 2017.  She has a high rate of PD-L1 cells as well, over 90%.  This is her 2nd go around with NSCLC, adenocarcinoma.  Her recurrence came in the form of a mass on her trachea.  Keytruda + alimta + carbo was her first plan for treatment, she completed 6 of the 8 doses.  She was really struggling due to the chemo and her mass was responding well, so they just continued with Keytruda after 6 doses of the triplet.  Since being on Keytruda only (December 2017), side effects and treatment have been pretty uneventful.  Only major side effects have been skin pigment changes on her thighs and itchy skin, all very manageable.  She is currently having some breathing problems that docs are trying to figure out what's wrong, possibly pneumonitis, and she is on a Keytruda break while they figure it out.   I regularly update my mom's health and treatment, you will see a copy of the page below.  There is also a Lungevity Facebook page specifically for immunotherapy patients.  I believe that Tecentriq has been mentioned several times.  If you have Facebook, you might want to check it out too, just search Lungevity Immunotherapy Group.  It is a private group, but they add you pretty quickly once you request it.  

 

[Deb B]

Hi Steff & Tom

Thank you for all of the good information. Steff, your mom has a great supporter in you.  I wish her success with her treatment and will continue to follow your updates. 

Deb