ROS1 info for justtina - 1245024


Just before this site shut off all existing conversations (permanently) as part of making web site changes, "justtina" asked about clinicial trials for her husband in this discussion:

I wish I had noticed justtina's conversation right away because as I read it it immediately sounded worth testing for ROS1 and it sounded better in later messages. As she soon discovered, her husband fits the profile for ROS1 as well as anyone possibly could: Stage IV never-smoker adenocarcinoma, closer to 50 than 60, and triple-negative for all of KRAS, EGFR, and ALK.

I'm glad she and her husband went to see Dr. Ou at UC-Irvine (who is participating in the Xalkori-for-ROS1 trial) and hope justtina comes back here to post her husband's results from sending biopsy samples to MGH in Boston for testing.

FWIW, here's a high-level summary about ROS1 that I contributed to Linnea's well-followed blog:…

Here's my own full description:
with the latest trial data results reported here:…

BTW, if ROS1 doesn't work out, MGH also has the ability to test for as many as 130 in tests of dozens of mutations at a time. You can find some info on that here:
and .
As you know, a few of the other rare mutations also have clinical trials. (The most promising ones use the same drug that is already being used for a similar mutation or the same mutation found in another kind of cancer.)

Best hopes,

Craig in PA



Boy, I hope we don't shut down all existing conversations again. It causes too much of a break in important conversation and so exasperating. Really.

Craig, I'm happy you have the understanding and voice to speak out for this population and thank you so for sharing resources.

I must admit I'm not familiar with the subject because it won't help further my husband's cause. But I am fascinated by the quick moving treatment options.

Justine, please let us know what's going on your end.


dr. weiss
Posts: 206

I agree that a never smoker with adenocarcinoma who has tested negative for egfr, kras, and alk should consider ROS1 testing if they can afford the test and/or travel for the trial, if positive. While estimates vary for the various mutations, egfr is roughly 15%, kRAS roughly 25 and alk roughly 5%. Further, ROS1 is far more likely in a never smoker--thus far, it's been found >90% in never smokers, with most of the rest being former/light smokers. So, if ROS1 is 1-2% of adenocarcinoma overall, once you up the odds by being a never smoker and by testing negative for the other mutations, the odds have climbed substantially.

Posts: 330

Although ROS1 has been found more often in ROS1, I don't have data about what the %odds are for ROS1 in smoker vs. never-smoker once one has *already* ruled out KRAS, EGFR, and ALK. KRAS is the most common driving mutation for smokers, so once that has been ruled out in a smoker the odds should improve a lot.

I have seen a table suggesting other rare not-so-useful mutations like PIK3CA and NRAS are more common in smokers than light- or never-smokers, with odds that seem similar to or greater than ROS1's overall 1%-ish figure.…
If that data were representative of what other people might see, smokers could test for PIK3CA and NRAS (or whatever else other studies find is more common in smokers that ROS1) before testing for ROS1 but I'm not sure there'd be much useful point of doing so until there are promising drugs for those, especially if there's only enough tissue for one more test instead of three.

Given the clear benefit of Xalkori for ROS1 in the early Phase I data presented at ASCO, ROS1 still seems like a good 4th mutation to test in never-smokers or smokers, but yes, it it is worth being clear about how the odds of ROS1 in smokers do seem much smaller than in never-smokers.

BRAF (although that comes in flavors that each require their own test, each using up biopsy material) is an example of another driving-mutation that might become useful in the near future and probably has higher odds in smokers than ROS1 does. If it becomes useful and testable in a single test, ROS1 would probably slip to being tested after that in smokers.

It's getting pretty clear that lung cancer needs a way to inexpensively assay NSCLC for a range of mutations without using up material for each test, at least after the most common ones are ruled out.

Best hopes,

Posts: 28

Hi Justtina,

Dr. Liu at USC is my doctor, too! He's the one who got me into the Merck anti-PD-1 trial at the Angeles Clinic. Ask him about it.

Posts: 1

Thanks for keeping this thread going.

We're following in FeistyD's footsteps. We have switched our primary oncology from City of Hope to Dr. Liu at USC Norris. He also turned us onto the MK PD-1 trial at the Angeles Clinic and I'm very happy to share that we start tomorrow!

(FeistyD -- thanks for sharing your continued progress...its given us much hope. We'll be at the clinic most of the day tomorroww and oftern following that, I'm sure. Hope we have a chance to meet you soon.)

Re: the additional genetic testing at UCI...we're still waiting. It seems there was a delay in getting the tissue sample from COH to UCI. In any case, we're still a few weeks out from a result, but will keep you all posted. UCI is sending the tissue to Mass. Gen. They likely have more sensitive lab equipment because UCI is redoing the ALK test. Apparently sometimes there are false negatives. Until our UCI appt., I was unaware that his triple negative actually increases a prob for another + mutation. They are also testing the tissue for ROS-1, MET, and BRAF. My husband is 53, never smoked, no history of cancer in his family nor evident exposure to environmental agents that we can point to.

Thank you Craig, Dr. Weiss...everybody! I hope to be coming back with more information soon, including good news.

Posts: 28

I am so excited for you and your husband! I hope we can meet sometime at the Angeles Clinic. My next appointment there is 9am July 26. I actually look forward to my appointments there because everyone is so nice, and the infusion is only 30 minutes (the labs take a while, though). In my case, it all goes smoothly with NO side effects- no allergic reaction, no burning, no nausea, and no fatigue. And no hair loss- my hair is growing back! AND most importantly, no more cough! BTW, my name is Connie Tucker- tell Dr. Hamid "hi" from me.

Posts: 10

Dear FeistyD and Justtina,

Please keep us posted on the trial result. I am also in LA area, but live close to UCI. I am currently stable under Tarceva with my Onc in Cedar Sinai Beverly hills, but plan to visit Angeles Clinic and hook up with doctors there.


FeistyD, That's great to hear and you've been on treatment for 8 weeks? How often are your infusions?
I see your bio, could you copy it and paste it onto your signature so it will show up on your post? Your signature edit can be found by clicking on your username/avatar.