ROS1 Bloggers

These blogs are written by ROS1+ patients or carers.
All are in English unless otherwise stated.

Thriving with lung cancer
by Beth Stroud
Stage III/IV NSCLC ROS1+  |  dx January 2013 at age 43 |  @iestroud

Lunging it up. Fighting lung cancer at 22
by Corey Wood
Stage IV NSCLC ROS1+ |  dx May 2014 at age 22

Gwen Fights Cancer
by Allisen (on behalf of Gwen Orilio)
Stage IV NSCLC ROS1+ |  dx January 2015 at age 31

Gray Connections
by Janet Freeman-Daily
Stage IV NSCLC ROS1+ |  dx May 2011 at age 55 |  @JFreemanDaily

The dude is the dad…
by Jim Brown
Stage IV NSCLC ROS1+ |  dx May 2015 at age 47

Every Breath I Take
by Lisa Goldman
Stage IV NSCLC ROS1+ |  dx January 2014 at age 41 |  @goldmanlisa

Cancer…An Unexpected Journey
by Luna Okada

Stage IV NSCLC ROS1+ |  dx December 2012 at age 54

Faith, Family & Friends
by Lysa Buonanno
Stage IV NSCLC ROS1+ |  dx December 2011 at age 40 |  @thelysabee

My Journey as a ROS1+ Lung Cancer Fighter
by Marisa
Stage IV NSCLC ROS1+ |  dx October 2015 at age 30

Merel’s wereld(s) in Dutch
by Merel Hennink
Stage IV NSCLC ROS1+ |  dx November 2014 at age 46 |  @merelhennink

Polepole – Breathe 
by Corinne Pert 
Stage IV NSCLC ROS1+  |  dx January 2016 at age 58

Don’t Stop Believin’
by Kelly Keesling
Stage IV NSCLC ROS1+ | dx December 2015 at age 47

A Lil Lytnin’ Strikes Lung Cancer
by Tori Tomalia
Stage IV NSCLC ROS1+ |  dx May 2013 at age 37 |  @lil_lytnin

Voices Silenced by Cancer

Echt jetzt? in German
by Arne Steding
Stage IV NSCLC ROS1+ |  dx October 2012 at age 30

Eddie’s Rollercoaster in Dutch
by Edgar Dinkelaar
Stage IV NSCLC ROS1+ |  dx May 2014 at age 33 |  @Eddydinky

From Lizzie’s Lungs
by Elizabeth Dessureault
Stage IV NSCLC ROS1+ |  dx April 2015 at age 26

Stephanie’s Journey
by Stephanie Polecastro
Stage IV NSCLC ROS1+ |  dx November 2013 at age 28

Grief Stew
by Stuart Grief
Stage IV NSCLC ROS1+ |  dx August 2014

Last updated 14-Sep-2017

6 thoughts on “ROS1 Bloggers

  1. I notice that all comments were 2014 and before. Are there more recent ones out there? I was diagnosed in January 2018 and just started taking xalcori n April 27th 2018 and would like to hear more success stories…

    1. Same here and had hard time on 250 mgs of xalkori however the tumor had shrunk. Liver enzymes were high so took 2 weeks off and felt great before starting back on lower dose, 200 mgs. I feel very good with few side effects…edema in legs, woozy upon standing up and strobe light like flashing at night, but otherwuse i feel just fine. I exercise regularly, walk several miles and even play tennis. My next scan is in July and I will report back. All in all i am grateful !!

    2. Hi Katherine,
      Thanks for your comment. Sometimes we bloggers get so busy living life that we neglect our blogs! Many of the bloggers listed here are still actively posting, however. Have you check their blogs recently?

  2. My son started on drug for Ros1 two days ago. He is coughing up blood. We are in emergency room. Anyone else experience this side effect?

    1. Hi Christie,
      I’m glad you went to the emergency room with your son. Unfortunately, coughing up blood is not uncommon with lung cancer, and can be caused by issues. I hope he is doing better.
      Janet Freeman-Daily

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