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Looking for people who have cancer with ROS1 mutation
Lung Cancer | Last Active: 2 days ago | Replies (7)Comment receiving replies
@hlolson Hello Heidi, I just started Rozlytrek a couple of weeks ago and I’m really struggling with the side effects. I was specifically concerned about the impact on speech, coordination and balance. My insurance won’t cover the drug because even though I have a ROS1 mutation, I do not have lung cancer. We went through hell to get the drug and I’m quite disappointed in how poorly I’m tolerating it. I foundtheROS1ders FB page but I’m having a hard time navigating the page and finding the info I wanted. No of anyone that is being treated with a dose reduction of Rozlytrek? I’m not even sure that switching drugs as an option for me. I really wanna give this medication a chance since we went through hell to get it. My oncologist may consider doing a dose reduction, but I don’t know if that would be good enough. I’m out of questions to ask already and a little disappointed and anxious about moving forward with this drug. Been looking to find people that have been taking it, but it’s proving harder than I thought.
Replies to "@hlolson Hello Heidi, I just started Rozlytrek a couple of weeks ago and I’m really struggling..."
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@princessmaza
I am so sorry to hear about your current struggles, but I totally understand, except the part of not having lung cancer. Rozlitrek was also hell on me as well. I have learned though from other Ros1ders that they have either reduced their dose to 400mg or taken a break and restarted. Some have said they just stuck it out and it got better after a few months. I did not have that option; it was just to hard on my kidneys. It sounds as though you need to consult or get a second opinion from an Oncologist who is very familiar with the Ros 1 mutation. Please keep me posted.