my father a non smoker w stage 4 nsclc large cell poorly differentiated

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March 7, 2012 at 5:25 pm  #7407    
Dr West
Dr West

I think it’s very hard to predict how people will tolerate different drugs. Tarceva (erlotinib) is a “wild card” that is pretty different from the chemo and other agents he has received, and often how people tolerate it has little correlation with how they tolerate other treatments. Alimta (pemetrexed) is another standard chemo, but as Dr. Weiss noted, it tends to be among our best tolerated chemo agents for lung cancer, even if there are no guarantees and we do see that a minority of patients have a hard time with it.

-Dr. West

March 7, 2012 at 6:34 pm  #7411    

Dr. Weiss

The combination of gemzar and taxotere is a challenging one. In contrast, alimta and tarceva are much gentler for the average patient. There are certainly some patients who have trouble with every chemo drug, but for others it varies by agent.

I believe strongly in second opinions (for more about this, see http://www.google.com/url?q=http://cancergrace.org/cancer-101/2011/11/13/an-insider%25E2%2580%2599s-guide-to-the-second-opinion/&sa=U&ei=gBlYT_WHBsnEtged4u3UDg&ved=0CAQQFjAA&client=internal-uds-cse&usg=AFQjCNHCTcp-jE75N2kKT3s-1IHRjjW1kA ). If Charleston is close to you, Dr. George Simon is at MUSC (he’s leaving, but at least for a one time opinion, he’s one of the top thoracic docs out there). I’m @ UNC and certainly would be happy to see you if this would be helpful to you.

March 8, 2012 at 11:20 am  #7426    

Craig

FWIW, based on my personal experience, I would personally recommend that adenocarcinomas should be tested at least for EGFR and ALK, and if those and also KRAS have all been ruled out, then test for ROS1 since the research at this point in its progress looks like Xalkori is about as promising for ROS1 as for ALK. Xalkori (crizotinib) for ROS1 has been great for me.

Neversmoker adenocarcinomas are more likely to have a potentially-druggable mutation than not, if you include promising drug trials like the one I’m in. (72%, actually, per http://www.marketwatch.com/story/foundation-medicine-and-dana-farber-cancer-institute-identify-novel-genomic-alterations-in-lung-and-colorectal-cancer-2012-02-13 ).


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib) for ROS1 trial @ MGH, Boston (5 yrs)
– carboplatin + pemetrexed (7 mo)
– TPX-0005 for ROS1 trial @ MGH (starting June 2017)

March 8, 2012 at 4:27 pm  #7435    

matti

thank you all for the input.
There have been a few mentions of seeking a second opinion. Maybe I need to clarify that again. My father has been for a second opinion at NYU Cancer Center. And the consensus was the same as the first oncologist. Stage 4 NSCLC large cell poorly differentiated with sarcomotoid and mesothelioma features. And three biopsies later still the same. He is EGFR & ALK negative. If he decides to go somewhere closer to his home in the south it would be for a third opinion.
I am not clear on wether or not I should see clearly state on his biopsy report EGFR and ALK I see a whole bunch of other acronyms but don’t know what they are. And I was told after the second biopsy that they were sending it out for further testing of mutations.

How is alitma typically given? Is it weekly bi wkly etc.


My father 78 non smoker limited asbestos exposure. dx sept 2011 nsclc giant cell stage 4 poorly differentiated carcinoma and malignant mesothelioma with pleural effusion. 2 rounds chemo gemzar/taxotere (told chemo not working evidence of supraclvicular lymph node involvement) clinical trail jan. 2012. kinase mtor inhibitor nyu cancer center. severe side effects trail stopped 2 wks in.

March 8, 2012 at 4:56 pm  #7437    

Craig

Thanks for clarifying. For Large Cell you might have already had all the currently useful mutation tests, as far as I know. If Large Cell has a chance of KRAS, getting that tested might make you eligible for a drug trial for that. (FWIW, all the cases of ROS1 found have been in adenocarcinoma so far; it might occur in other types of NSCLC, but if it does it would be far rarer than 1%.) If the biopsy sample is being tested for more mutations, I’d be curious what they were. Maybe they’re testing for something else.

BTW, if Large Cell is a type of neuroendocrine tumor, you might want to know about an experimental approach that targets neuroendocrine cells called PRRT (peptide receptor radiotherapy) which may be available via Dr. Ebrahim Delpassand at the Excel D&N Oncology Center in Houston.

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)
– carboplatin + pemetrexed (7 mo)
– TPX-0005 for ROS1 trial @ MGH (starting June 2017)

March 8, 2012 at 5:17 pm  #7438    

matti

Craig thank you.
not familiar w/KRAS but that will be the next research topic. Don’t know about this either but I will find out (neuroendocrine tumor)
So much to absorb and learn about.


My father 78 non smoker limited asbestos exposure. dx sept 2011 nsclc giant cell stage 4 poorly differentiated carcinoma and malignant mesothelioma with pleural effusion. 2 rounds chemo gemzar/taxotere (told chemo not working evidence of supraclvicular lymph node involvement) clinical trail jan. 2012. kinase mtor inhibitor nyu cancer center. severe side effects trail stopped 2 wks in.

March 8, 2012 at 5:28 pm  #7439    

cards7up

Alimta is usually every three weeks. There are no targeted drugs for K-RAS such as for EGFR & ALK.
Could possibly do clinical trial. Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

March 8, 2012 at 7:52 pm  #7447    
Dr West
Dr West

KRAS is actually the most common mutation seen in NSCLC, at around 20-25%, yet as Judy mentioned, we don’t yet have a therapy that is especially efficacious for it. There are a growing number of agents and trials that are looking at KRAS, as it is at least recognized that this is a significant clinical need, especially as more and more patients are getting tested and identified as having a KRAS mutation. It would be wonderful to have one or more treatments particularly for patients with a KRAS mutation, but for now at least we have a growing interest and number of trials.

-Dr. West

March 8, 2012 at 11:59 pm  #7448    

certain spring

Matti, it would be great would be if you could do a “signature” showing your father’s dx and treatments so far (go to “Profile” and fill in the signature box – not the “biographical info” box – then hit submit). It will save you repeating yourself and save us all asking the same questions twice!
I think yes, it is fair to assume that if they had got a positive result for EGFR or ALK, it would have been stated on the biopsy report. As to the acronyms, they are medical shortland and you might see two kinds. There will probably be a set of letters and numbers involving T, N and M. These refer to the size and location of the tumour, the involvement of lymph nodes and the extent of any spread. Then there might be a run of letters such as AE, CK and P, followed by numbers in each case. These are protein markers that help clarify the nature of the cancer, the origin and location of the tumour, and its histology. If you want to know more this is covered in detail by Dr Weiss in his excellent “Introduction to Lung Cancer”, which I recommend:
http://cancergrace.org/lung/2010/04/05/an-introduction-to-lung-cancer/
However I doubt your father’s biopsy details are going to tell you anything you don’t already know. All best.


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.

March 9, 2012 at 12:21 am  #7449    

Craig

FYI, I think that for at least one or two of my initial mutational tests (EGFR, KRAS, ALK) my biopsy report only noted samples were submitted for testing and results (at least some of them) were reported in a different lab test report weeks later.


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib) for ROS1 trial @ MGH, Boston (5 yrs)
– carboplatin + pemetrexed (7 mo)
– TPX-0005 for ROS1 trial @ MGH (starting June 2017)

March 9, 2012 at 12:28 am  #7450    

Craig

P.S. “certain spring”, there is no signature box on my Profile webform page. Can you re-confirm or clarify your directions?


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib) for ROS1 trial @ MGH, Boston (5 yrs)
– carboplatin + pemetrexed (7 mo)
– TPX-0005 for ROS1 trial @ MGH (starting June 2017)

March 9, 2012 at 7:47 am  #7459    

follansbee

Craig, I’ll chime in here re signatures. I was able to add mine so that they would show up on my posts by following Webmaster Mark’s instructions in his Profile Bio & Forum Signature Tips post. It’s in GRACE Site Tips.

March 9, 2012 at 8:30 am  #7461    

Craig

Where would that be found, Follansbee? Do you have a URL link to it? I don’t see where one can find something called “GRACE Site Tips.”


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib) for ROS1 trial @ MGH, Boston (5 yrs)
– carboplatin + pemetrexed (7 mo)
– TPX-0005 for ROS1 trial @ MGH (starting June 2017)

March 9, 2012 at 9:41 am  #7463    

follansbee

Try this link: http://cancergrace.org/topic/grace-site-tips-profile-bio-forum-signature. If the link works, here is what I copied from a post from Dr West of Feb 29:

“Here’s a summary of “how to input your signature”, courtesy of Debra (double trouble):

1.) Sign in
2.) Find one of your recent posts on the forum (if someone other than Myriam is reading this and you haven’t posted yet, do a test post, then follow the steps)
3.) Click on the edit feature next to where your picture will be
4.) Scroll all the way down until you see the two boxes, “Biographical Information” and “Signature”
5.) Type your information into the signature box
6.) Scroll to the very bottom and click on “Update Profile”

If you get a message of an error and that e-mail address not supplied, or something to that effect, just ignore that.

I don’t think formatting for signatures is very sophisticated right now; even line breaks are hard to insert. But we’re working to make the formatting better as fast as we can improve things.

-Dr. West”

Follansbee

March 10, 2012 at 5:03 am  #7521    

Craig

Thanks. The trick is to *not* use the large “Profile” menu-bar button nor the “Profile” menu item on the pull-down menu in the upper-right corner, but instead click on your own avatar picture to get to a version of the “profile” where there’s a link leading to the signature editor. Strange and confusing.

FYI, had no trouble with line-breaks — it just took them as typed, or I could put in the <br> HTML code equivalent as escape codes.


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib) for ROS1 trial @ MGH, Boston (5 yrs)
– carboplatin + pemetrexed (7 mo)
– TPX-0005 for ROS1 trial @ MGH (starting June 2017)

March 26, 2012 at 8:04 am  #8192    

matti

How to choose between Tarceva or Alimta? If you are egfr and alk negative and given a choice between the two drugs knowing one only has about a 3% chance in egfr negative cases but not knowing if you will turn out to be that small percentage. It is a 50 50 gamble. Any opinions on personal usage?


My father 78 non smoker limited asbestos exposure. dx sept 2011 nsclc giant cell stage 4 poorly differentiated carcinoma and malignant mesothelioma with pleural effusion. 2 rounds chemo gemzar/taxotere (told chemo not working evidence of supraclvicular lymph node involvement) clinical trail jan. 2012. kinase mtor inhibitor nyu cancer center. severe side effects trail stopped 2 wks in.

March 26, 2012 at 8:22 am  #8193    

Craig

I am too ignorant about that choice to suggest one or the other. (If those were the only choices, for myself I might give the Alimta a try first, but I could easily be convinced otherwise. I might prefer to have more choices based on more testing, if there’s time.)

FWIW, if a person is having a hard time picking their next drug but does have the time for an unusual kind of extra testing, some people advocate something called ex-vivo functional testing (e.g., Rational Therapeutics). You’d have a surgical procedure to extract a chunk of live cancer, ship it alive for testing, and test 16 or more drugs against it. But then they could tell you which of the 16 might work. I’d prefer to be tested for EGFR, ALK, & KRASand if triple-negative then test for ROS1, but your odds of getting a “use this one” answer might be better from the former. (If it said “use Xalkori, I think you’d have to get the ROS1 test or re-test for ALK or test cMET to prove you’ve got one of those before you could get the drug.)

I wonder if any of the oncologists or lab experts here have an opinion about ex-vivo functional testing. My oncologists seem not interested in it for some specific reason that I didn’t ask about.

Best hopes,


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
– Dr. Alice Shaw’s Xalkori (crizotinib) for ROS1 trial @ MGH, Boston (5 yrs)
– carboplatin + pemetrexed (7 mo)
– TPX-0005 for ROS1 trial @ MGH (starting June 2017)

March 26, 2012 at 11:42 am  #8199    

matti

i agree with being easily swayed in either direction. and unfortunately with all my research I am not able to provide any information to aid in the decision.
I also wish I knew if time was in his side for further testing. We are getting close to the median time frame given. But I appreciate the information.
I am hoping one of the doctors can weigh in on the situation given the background information.


My father 78 non smoker limited asbestos exposure. dx sept 2011 nsclc giant cell stage 4 poorly differentiated carcinoma and malignant mesothelioma with pleural effusion. 2 rounds chemo gemzar/taxotere (told chemo not working evidence of supraclvicular lymph node involvement) clinical trail jan. 2012. kinase mtor inhibitor nyu cancer center. severe side effects trail stopped 2 wks in.

March 26, 2012 at 1:45 pm  #8209    

Dr. Weiss

I have not seen any good evidence that this kind of chemosensitivity assay really works. To my mind, EGFR and EML4/ALK are the two best validated tests (for erlotinib and crizotinib, respectively). Candidate sensitivity tests include ROS1, veristrat, TS, RRM1 and ERCC1. I wouldn’t even say that the ex-vivo testing we have at this point is even worthy of being called “promising.” Pemetrexed and erlotinib can both control cancer growth and are pretty well tolerated therapies. For patient’s with non-mutated adenocarcinoma, I have a slight bias towards alimta in my practice, but consider both very reasonable.

March 26, 2012 at 6:47 pm  #8228    
Dr West
Dr West

I agree and would add that the work that has actually done a direct comparison has indicated that they are really very comparable in unselected populations. But my secret answer is that I really prefer to give patients both of these agents, so the question is really “which one first, and which one second?”.

If I know that someone has an EGFR mutation or has a minimal smoking history and hasn’t been tested, I’m likely to favor Tarceva (erlotinib). I would also favor it if a person hasn’t demonstrated very encouraging results from other standard chemotherapy agents in the past. On the other hand, if someone has done well on prior chemotherapy regimens, I’m more inclined to favor trying another chemotherapy agent.

-Dr. West

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