ALK or ROS1 NSCLC Patient Group

Portal Forums Lung/Thoracic Cancer Patient/User Groups ALK or ROS1 NSCLC Patient Group

This topic contains 518 replies, has 34 voices, and was last updated by  aliciauk 4 months, 1 week ago.

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July 9, 2012 at 3:51 am  #1244753    

Craig

Since CancerGRACE has a forum category for patient user groups, I thought I’d start one for ALK-driven and ROS1-driven cancers. These two genotypes of NSCLC seem similar (although on different chromosomes) and tend to respond to the same drugs (both Xalkori (crizotinib) and 2nd generation treatments), although maybe to different degrees.

Welcome!

Best hopes,

Craig in PA


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib)-for-ROS1 trial @ MGH, Boston (5 yrs)
– Currently carboplatin + pemetrexed (Nov 2016+)

July 9, 2012 at 5:41 pm  #1244786    

neilb

Craig: I’m in Pittsburgh. How do I join the patient group?–Neil


Never-smoker, male, age 53. Diagnosed with stage 1A adenocarcinoma in 2005. Lobectomy. Recurrence in February 2007. Therapies have included Carboplatin/Taxotere/Velcade (failed); Tarceva (8 months of stable disease before progression); Alimta/Avastin (complete response); treatment break; Alimta (complete response); Xalkori (since February 2012).

July 9, 2012 at 6:34 pm  #1244791    

pamela77

Is the ROS1 marker for nsclc available throughout the united states? I was under the impression that it was only available in certain hospitals on the east coast. If, not,can anyone mail in bloodwork to see if they have this mutation? Thank You

July 9, 2012 at 7:24 pm  #1244804    
Dr West
Dr West

My understanding is that only Massachusetts General and the University of Colorado are doing the test. I believe they may both be offering it commercially to people, though whether it will be paid for by an insurer is another question entirely.

-Dr. West

July 9, 2012 at 9:20 pm  #1244816    

Craig

neilb,

You just did, if when you replied you left the “Notify me of follow-up replies via email” checkbox checked when you replied. This means you should be notified whenever someone else offers a comment to this discussion. (If they start a discussion under a new title, you’d have to notice that on your own or have someone drop a message here to alert us to it.)

I was assuming that just having a running discussion for ALK & ROS1 would be useful to those whose cancer is already known to be driven by either of those. (If I misunderstood the purpose of this category of the forums I imagine someone from “management” will correct me.)

Best hopes,

Craig in PA


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib)-for-ROS1 trial @ MGH, Boston (5 yrs)
– Currently carboplatin + pemetrexed (Nov 2016+)

July 9, 2012 at 10:27 pm  #1244829    

Craig

pamela77,

Short answer: Any doctor can send biopsy samples for testing at one of the labs that Dr. West mentioned for ROS1 testing. There might be other places, but I’m not sure where or if they’d be accepted for eligibility to Pfizer’s Xalkori(crizotinib)-for-ROS1 trial.

Long answer:

Like Dr. West said, Massachusetts General Hospital (MGH) in Boston and U. Colorado in Denver are the two places that do the ROS1 test right now. There will be other places, but I’m not sure where or if it’ll meet Pfizer’s standards for the trial, so you’d have to ask the lab you’re considering.

One person told me Sloan-Kettering in NYC is planning their own test, but didn’t have it a month ago.

One person told me a cancer center in Detroit did test them for ROS1, but there was conflicting info that made me suspect that ROS1 test or procedure or technician judgement was giving a false-positive result (e.g., not testing for the correct kind of ROS1 mutation), so it might not be reliable enough for Pfizer’s trial.

If you are within driving distance of either Boston or Denver, I highly recommend an “2nd opinion” office visit to Dr. Alice Shaw (MGH, Boston) or Dr. Ross Camidge (U.Colorado, Denver area). I believe they are the top two docs in the world for ALK & ROS1 right now (with Alice being a smidgen better, esp. for ROS1, but I’m very biased). If you’re nearby, I think you’ll find it worth the trip. If you are not nearby and you’d like someone at MGH to coordinate things on their end, Dr. Shaw told me she’d be willing to help with that. (You can google her email address or private message me via inspire.com and I’ll share it.)

re: insurance, you’ll have to ask your insurance co about that. Mine covered my ROS1 test just like they did the ALK one. Given the good results Xalkori for ROS1 is showing, I’d think it’d be hard to justify not covering it except that the odds of ROS1 are small.

Best hopes,

Craig in PA


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib)-for-ROS1 trial @ MGH, Boston (5 yrs)
– Currently carboplatin + pemetrexed (Nov 2016+)

July 10, 2012 at 9:25 am  #1244848    

neilb

Didn’t click that box the first time, so I guess now I’m officially a member!–Neil


Never-smoker, male, age 53. Diagnosed with stage 1A adenocarcinoma in 2005. Lobectomy. Recurrence in February 2007. Therapies have included Carboplatin/Taxotere/Velcade (failed); Tarceva (8 months of stable disease before progression); Alimta/Avastin (complete response); treatment break; Alimta (complete response); Xalkori (since February 2012).

July 15, 2012 at 7:53 pm  #1245186    

mj82

If you are on the West Coast, Stanford University tested my husband’s biopsy sample for the ROS1 mutation. He was contacted that he was positive for ROS1.

July 15, 2012 at 8:21 pm  #1245187    

Craig

Wow, mj82, that’s really excellent news!

Welcome to the ROS1 club! It can be quite a blessing (if one has to have lung cancer at all, that is), assuming the testing is accurate. See:

http://www.inspire.com/CraiginPA/journal/i-am-a-ros1-mutation-success/?reply_sort=asc&page=3#cmnt_677793

and in particular the graph at

http://chicago2012.asco.org/ASCODailyNews/Abstract7508.aspx

Since Xalkori for ROS1 would be an off-label use (and not covered by insurance) unless via a trial, what clinicial trial are they recommending & where? If the Pfizer Xalkori-for-ROS1 trial, is there a new location near you now and is the test Stanford did acceptable according to Pfizer’s trial protocol or will it have to be re-done by MGH or U.Colorado? The California location for the the Xalkori-for-ROS1 trial was at UC Irvine, or are they opening a location closer to you now that your husband it there? ;-)

BTW, I’ll be very interested in hearing about his “profile” (age, risk factors, dietary style, etc.) and any thoughts he has about about potential causes of his cancer. ROS1 is so rare that I’m wondering if we might have something in common.

Best hopes,

Craig in PA


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib)-for-ROS1 trial @ MGH, Boston (5 yrs)
– Currently carboplatin + pemetrexed (Nov 2016+)

July 21, 2012 at 2:17 am  #1245601    

certain spring

Just trying to attract the attention of Craig, or anyone else with an interest in ROS, to this post asking about the Ariad trial (for someone whose sister has progressed on crizotinib):

http://cancergrace.org/topic/ariad-26113-for-ros1-patients-resistant-to-crizotinib

I gave the poster a link to a discussion on Inspire, but thought that others might have more up-to-date information on side-effects etc.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

July 21, 2012 at 3:33 am  #1245606    

Craig

Thank you for drawing my attention to that, certain spring. I wouldn’t have noticed that otherwise and it is good that you cross-referenced it here for the benefit of other people who want to follow ROS1.

Best hopes,

Craig


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib)-for-ROS1 trial @ MGH, Boston (5 yrs)
– Currently carboplatin + pemetrexed (Nov 2016+)

July 23, 2012 at 4:32 pm  #1245732    

mj82

Craig – I don’t know the answer regarding Stanford and if their testing is acceptable for any trial. My husband consults with the lung cancer specialist there whenever there is a change in his status and is treated locally by a general onocologist. It was suggested that he remain on Alimta at this time and should their be further developments there was another option.

Both his parents lived into their 90’s+. Dad had cancer but don’t know what kind, passed at 95 (btw he smoked all his life). No other cancer in family that we know of.

(sorry for the delay in response-I’m having a hard time navigating the website these days, I’ve “lurked” in the background for a long time but never been active)

Husband dx 7/07 stage IIIb adeno(age 59 @ dx)
9/07 concurrent rad/chemo-taxol/carbo,11/07 2nd cycle chemo, PET NED, 7/08 PCI,3/09 progression to other lung,5/09 2nd line(Cisplatin,Alimta,Avastin), 10/09 maintenance Avastin, Alimta, 6/11 PET NED, 4/12 PET NED, 4/12 dxProteinuria term’d Avastin, maintenance Alimta, 7/12 positive ROS1

July 23, 2012 at 4:58 pm  #1245735    

Craig

It’s a little hard for me to guess what trial they might have in mind.

I don’t think the crizotinib-for-ROS1 trial is available in northern California at this time (but is at UC-Irvine). Maybe they’d want to expand there if they knew some ROS1’s were found there. ;-)

And even the promising 2nd gen drugs LDK378 and AP26113 don’t seem to have a trial location near there right now. (If my memory is correct, Seattle might be closest for the former unless a withdrawn location at UCLA or nearby reopens, and UC-San Diego for for the latter.) As far as I know, these are the most promising 2nd generation drugs, but crizotinib is a more proven choice (both ALK and ROS1) and might avoid certain kinds of resistance (e.g., it also suppresses MET) whereas the others might be better at other kinds of resistance (based on pre-clinical lab experiments).

For myself, I am happy to travel to my trials as far as I can go by car or train in a day, e.g., 500-600 miles each way, but I currently only have to drive half that for mine (to Boston) currently.

Best hopes,

Craig


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib)-for-ROS1 trial @ MGH, Boston (5 yrs)
– Currently carboplatin + pemetrexed (Nov 2016+)

October 15, 2012 at 4:48 pm  #1249075    

jmpchic

Hi! Just wanted to join the group. My husband is Stage IV NSCLC ALK +. He has been on Xalkori for a year now.

October 15, 2012 at 7:47 pm  #1249083    

joppy

I would like to join the ALK group.

October 16, 2012 at 3:01 am  #1249090    

Craig

Welcome, jmpchic & joppy.

Most of the discussions seem to be separate, but it’s nice to have a way for Xalkori (& 2nd gen ALK/ROS1 drug) users to stay in touch here.

Best hopes,

Craig in PA


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib)-for-ROS1 trial @ MGH, Boston (5 yrs)
– Currently carboplatin + pemetrexed (Nov 2016+)

October 25, 2012 at 12:35 pm  #1249521    

double trouble

Hi Craig! KRAS+ on tissue from left lung… ALK+ on tissue from subcarinal node. I just can’t be normal!
Debra

October 25, 2012 at 1:07 pm  #1249528    

Craig

Welcome, Double-Trouble.

Are your doctors sure you have different driving mutations in the two areas? (That is extremely rare initially, though you’ve had chemo and radiation so maybe that changes the odds.) Could they independent primary tumors? Are they sure neither one is a false-positive test result (as does happen some % of the time)?

If the ALK+ cancer is the front-runner, I would guess that Xalkori might set it back for a bit until the KRAS becomes the front-runner again. KRAS seems the tougher one just because there isn’t a proven accepted targeted inhibitor drug for it yet, though there are experimental trials, e.g., HSP90 inhibitor ganetespib (which also has a chance of working on ALK), etc.. Is there any way to keep the KRAS part under control as though it were a separate primary? What other treatments are your doctors considering? Besides conventional things and things targeted to a driving mutation, maybe an immunotherapy drug like some kind of anti-PD-1 drug?

Best hopes,

Craig in PA


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib)-for-ROS1 trial @ MGH, Boston (5 yrs)
– Currently carboplatin + pemetrexed (Nov 2016+)

October 25, 2012 at 1:49 pm  #1249529    

double trouble

Hi Craig. According to Dr. West there is no way to know if there are two primaries or not, but that is how they have been looking at this. The KRAS positive tissue was from the left lung, which was resected, and no more areas of concern have shown up in that lung since (2 years).

The ALK tissue was from a subcarinal node, presumed to be a met from the second primary in the right lung. The sample was 20% ALK+. (has to be at least 15% to get Xalkori)

So, I now have a clear left lung, a cavitated lesion with no SUV in the right lung (the main second primary tumor, killed with chemorad (?)), a clear paratracheal node that was PET avid prior to chemorad, a very angry hilar lymph node that is growing in size and metabolic activity, a poorly differentiated adeno-like and ALK+ subcarinal lymph node, and now 3 new lesions, all about 1cm, in various locations in the right lung. I would have to re-check but I think they are all in the upper lobe.

I will talk to my onc. tomorrow, I guess, by phone. I haven’t spoken to him about the mutation status or the most recent scan. Right now I’m just trying to get him on the phone about all of the new developments. We were not supposed to meet again until January.

The mutation analysis was done by break apart FISH at Duke University in Durham. I think they’re pretty thorough.

I’m new to some of this so I hope that was clear (and correct) and answered your questions.
Debra

October 25, 2012 at 5:00 pm  #1249533    

Craig

Touble-Trouble Debra,

I think I understand you pretty well.

It sounds like you might be saying that the KRAS cancer might be pretty much gone, is that right? If I’m hearing you correctly it sounds like ALK-driven adenocarcinoma is the front-runner problem (the only visible one), right? I’m no professional, but that makes it sound like it could be worth trying Xalkori at some point.

Are you considered either “Stage 4″ or somehow incurable, or are you considered to be at an earlier stage? Inhibitor drugs like Xalkori don’t have any chance of eradicating cancer; they just inhibit it, often well enough to shrink it and stop some cancer symptoms), so most oncologists will use other methods (ones that might offer a chance of cure, however slim) for earlier stages.

Keep in mind that there is a risk of false-positive at any lab, though some are probably better than others, but a positive test result suggests an 85% or better chance of an ALK inhibitor like Xalkori being useful (either shrinkage or just stability). As far as I know, it’s not possible to predict more precisely.

BTW, just to be safe,I recommend you get a copy of the lab report and read it yourself, or have it read out to you word by word, or have your oncologist (not a nurse) verify it’s definitely saying positive for ALK. I could tell you story of someone who was mis-read their ALK test result over the phone and it led to bad consequences.

Best hopes,

Craig in PA


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib)-for-ROS1 trial @ MGH, Boston (5 yrs)
– Currently carboplatin + pemetrexed (Nov 2016+)

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