ROS1 detected now

[GBJ]

Hi, Gautham back here. Intial Dx Feb 2022, stage 4 adenocarcinoma. Been almost 3 years

Had my ups and downs with platinum immuno first line, then moved to paclitaxel based chemo last year. Disease stable as of now. Not completely cured but going on. I am highly active so far so good. 

Recent molecular genetic testing confirm ROS1 mutation. Maybe was missed during initial Dx. 

My knowledge says they might stop chemo and start targeted therapy. 

Thoughts on medication, side effects and response rate. Appreciate it. 

Thanks

 

 

 

 

[LouT]

Hi GBJ,

Happy Thanksgiving.  It's good to hear that you are doing well.  I personally only had surgery as my treatment so I can't share any experience with your mutation or treatment.  But we do have Virtual Meetups and one of those focuses on Rare Mutations.  That may be a good vehicle to hear from others who may be able to provide more experiential information to help you out.  You can find the information for that meetup here.  

Lou

[edivebuddy]

Hopefully you had a great Thanksgiving and didn't spendtoo much time thinking about this. 

Why did they do the most recent genetic tests?if there's no progression I don't think they'll switch to the Targeted therapy.   *Don't fix what ain't broke.  But if they did it because they did see progression then indeed they'll probably switch.  

Crizotinib (Xalkori), Lorlatinib (Lorbrena) and Entrectinib (Rozlytrek) are the current ROS1  treatments I know of.

Crizotinib is usually the first they try because it's been around the longest.(2011) .

Lorlatinib and Entrectinib are newerc2018 & 2019.  They have a better ability to cross the blood brain barrier. They  may also  treat cancers that develop a resistance to Crizotinib like G2032R.

 

I have no personal experience with these treatments so hopefully someone else has some input for you 

 

[GBJ]

Hi edivebuddy. Happy Thanksgiving. Been following your posts. Quite inspiring

Well my doctor has been wanting to do liquid biopsy for the past one year after keytruda stopped working. There was progression at that time. I had to Switch to paclitaxel carplatin for 6 cycles, it regressed and have been on Bevacizumab maintenance since. He suspected a genetic mutation since immunotherapy stopped working. Hence the new genetic testing. 

It could also be that this mutation has been there since diagnosis and was not detected at that time. 

[edivebuddy]

Hopefully the new treatments are effective for many years.