Worsening bone mets on Tecentriq, ROS1 treatment options

Wed, 10/02/2019 - 21:10

Hi Cancer Grace team, I hope this finds you well.

I'm back for your guidance - this time with my mom's latest PET CT which shows "widespread osteoblastic metastatic PET avid disease within the axial skeleton as well as more extensively within the iliac bilaterally, sacrum and coccyx, and the right humeral head and interochanteric region." 

For background, my mom (NSCLC, Stage 4 since 2014) most recently received 2 cycles of Alimta + Tecentriq, followed by 3 cycles of Tecentriq alone.   Fortunately, she is in no pain and traveling internationally even with this clearly worsening disease.  Her weight unfortunately has dropped from 148 to about 140 lbs over the last few months. 

We are meeting with her oncologist tomorrow.  As she is ROS 1 positive, we may be looking into targeted therapies as well as doing tests (X-ray, MRI, etc.) specifically for the bone mets to determine next steps.  I could really use your help to navigate this latest situation.



JanineT GRACE …
Posts: 544
GRACE Community Outreach Team

Hi Semone,


I'm so sorry your mom has progressed but how nice that she feels alright.  BTW 8lbs in a few months especially to 140 isn't too bad. 


What I can't find in our past discussions is mention of her ROS1 mutation and whether or not she's tried crizotinib.  If not that would seem to be her next treatment choice unless she's got a special reason why not.  This drug has had tremendous efficacy for many with ROS1 and could give the bone mets a really good hit before they start causing symptoms.  There is a newer generation of tki used for those with ROS1 that has better efficacy in brain mets but also has a greater side effects profile. 


I need to read this up to date article on ROS1.  My crizotinib info may be out of date but ROS1 tki is certainly the next step.


I look forward to hearing back.

Good luck,


I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

Posts: 42

Thank you as always Janine!

My mom has been ROS1 positive but never received a targeted therapy for this mutation. I think that’s because her PDL was 75% and the thought was that Immunotherapy might offer more longevity.

I’m curious about Entrectinib (marketed as Rozlytrek) as I’ve heard the results might even be better than Xalcori. Any thoughts you might be able to share.

Many thanks once again!


Dr West
Posts: 4733

Might be, but both are spectacularly active for patients with ROS1-positive NSCLC. The activity of both of these is likely far greater than for immunotherapy in a patient with a driver mutation like ROS1, but they haven't been directly compared, so it's not possible to say if entrectinib is superior. 

Good luck.

-Dr. West

Posts: 42

Thanks so much Dr. West.  I appreciate your input so much. Will keep my Cancergrace friends posted.