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

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March 4, 2012 at 7:28 am  #7231    

matti

my father a non smoker was dx w/nsclc large cell poorly differentiated stage 4. after 2 rounds of chemo he was told it was not working for him. options- do nothing or look for clinical. we tried a clinical he became very ill from it and was taken off. what other options are available? I can’t believe that we can clone, find the key to longevity but we can’t help someone with lung cancer.Are there any newer drugs that can be offered? was told he didn’t have the EGFR for tarceva or the newer targeted drugs. Just looking for any info available. thank you


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 4, 2012 at 9:44 am  #7234    

Dr Walko

Matti,

I want to welcome you to the CancerGrace family and as you will soon see from the the experts (both physicians but also those with personal experience with the disease), you and your father are not alone in this battle. I know it can be frustrating to see the advances we do have in the face of seeing an area in which we are more deficient. I applaud your dad for at least trying a clinic trial though as this is how we help to correct this deficiency.

In terms of your specific questions, I will defer those to our medical oncologist facutly, but will ask a few more questions from you to help better direct their answers:

1. Do you know what chemotherapy your father first received?
2. Do you know what clinical trial he was on?
3. When he was told the chemotherapy was “not working”, did this mean the cancer grew, a new spot started, or the cancer was not changing? The reason I ask is that “stable disease” or tumor not changing may not be evidence that it is “not working”.

I will say that from what you’ve provided here, there are likely more options depending on your dad’s performance status and personal goals. This may even include Tarceva which has shown benefit in NSCLC even if the EGFR mutation is not present.

Sincerely,
Dr. Walko


Christine Walko, PharmD, BCOP
Clinical Pharmacogenetics Scientist
Moffitt Cancer Center, Tampa, FL

Views expressed here represent my opinion, not those of GRACE or Moffitt Cancer Center. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

March 4, 2012 at 11:06 am  #7244    

matti

Thank you for responding.
My father was on a 21 day cycle gemzar/taxotere. we were told after 2 rounds and a pet scan that there was a small involvement of the clavicular lymph node. no other progression. the dr. said that the chemo was not working for him no other elaboration.

the clinical trial he was on was a kinase mtor inhibitor. the chemo was taken daily 45mg. during the 12 days he was on the clinical he became hyper-sensitive to the side effects i.e.; rash, nausea, dehydration. He couldn’t get out of bed for 4 days and lost 14lbs in the week and a half. And spent a week in the hospital.
That was in the end of January. No treatment given since Jan 21st. (chemo).

During this time he has been taking a natural remedy-astragalus daily. You need some hope to go on.
At this time he is looking for another clinical or some type of newer targeted drug that might help stabilize the cancer.

He has started to sweat a lot- I am guessing this is part of the disease. He has also had some shortness of breath. He was diagnosed in August 2011

I was also told it was classified as stage 4 due to pleural effusion. It was still contained in the chest cavity.
A second opinion with another oncologist stated that the clavicular lymph involvement was insignificant.

One question is- does pagets disease have any correlation to cancer?


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 4, 2012 at 1:38 pm  #7251    

Dr West

Paget’s disease would really be unrelated to a lung cancer and isn’t really relevant compared to the impage of an advanced lung cancer. I would strongly suspect that it can be discounted.

Did the oncologist offtering a second opinion offer suggestions about treatment options for moving forward? It would surprise me if the conclusion offered was that there wasn’t significant progression, but this person had no suggestions at all about subsequent treatment options that might be pursued.

This post describes the leading options that we consider for advanced NSCLC that has progressed (in a meaningful way) on prior chemotherapy:

http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-option/

If there is real reason to doubt that there is clinically significant progression, continuing on first line therapy is appropriate. Otherwise, since he will have already received Taxotere (docetaxel), which is one of the few drugs with an established role for improving survival in previously treated advanced NSCLC, the remaining options that are well studied are Alimta (pemetrexed) or Tarceva (erlotinib). Tarceva tends to be extremely effective for the minority of patients with advanced NSCLC who have an EGFR mutation, but it can also be modestly helpful for the larger population of people who don’t have an EGFR mutation:

http://cancergrace.org/lung/2010/09/21/benefit-from-egfr-tki-if-egfr-wt/

Unfortunately, advanced NSCLC is a very difficult disease, and poorly differentiated large cell lung cancers are a subset that tend to be harder to treat with good results than many others. It is truly humbling to not be able to have more favorable things to say.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

March 4, 2012 at 1:58 pm  #7252    

Dr. Aggarwal

Dear Matti,

I agree with Dr. West. The real question here is whether or not your dad “truly” progressed after first line therapy. Perhaps consideration could be given to re-initiating taxotere if he otherwise tolerated it well.

Another important question is whether your dad is fit and strong enough to receive another round of treatment. If he is in good physical shape, and we are convinced that he failed first line therapy, it may be reasonable to consider alimta or tarceva.

One could also make the case for pathology review and mutation testing. Although EGFR mutation is not commonly seen in large cell cancer, it may be worthwhile to do, given your dad’s non smoking history.

Good luck,

Dr. Aggarwal


Charu Aggarwal, MD
Assistant Professor

Views expressed here represent my opinion, not those of GRACE or University of Pennsylvania. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

March 5, 2012 at 12:57 pm  #7279    

matti

thank you both for responding it is greatly appreciated!

At my fathers last onc meeting he was told he could try another conventional chemo treatment but that after the first try there is not much to be expected with a different combo of chemo drugs.
He is willing to try anything I just haven’t heard from the one as to what the next option will be.
Seems that isn’t any urgency in treating him. At that time there had not been a change in his Pet Scan during a 4 week period.

Are there any views on a new drug being offered for lung cancer Zalkori and what gene it targets? As this maybe an option for treatment

Are you able to suggest oncologists in specific areas?

Again thank you for your comments.


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 5, 2012 at 1:06 pm  #7280    

cards7up

Xalori is for the ALK mutation. Has he been tested for the EGFR mutation? I’d get a second opinion preferably at a major cancer center. 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. Chemo carbo/alimta x3.

March 5, 2012 at 2:39 pm  #7284    

matti

Judy,
Thank you. Is Xalori the same as Zalkori? I got the info from an article on cancer treatments.

My father is at a major cancer center(don’t know if we are able to mention locations so I won’t)
And he has been to a smaller one for administration of treatment as prescribed by the major cancer center.
But it is still a waiting game. And unfortunately we don’t have time for waiting

Again thank you for responding :)


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 5, 2012 at 7:18 pm  #7295    

Dr West

They’re the same: Zalkori is a misspelling of XALKORI. If you don’t know how it’s spelled, it sounds like “Zalkori”.

Good luck.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

March 6, 2012 at 3:51 pm  #7331    

certain spring

Matti, not to bombard you with posts, but I thought Dr Weiss’s “Guide to the Second Opinion” might be useful here:
http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide-to-the-second-opinion/
I don’t think there’s any ban on mentioning hospitals on GRACE – people often swap information about who and what is available in their area. Best to you and your father.


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 6, 2012 at 4:45 pm  #7335    

matti

i welcome the bombardment.
I guess I should clarify….my father was first seen at an oncologist in South Carolina we then went to NYU Cancer Center for a second opinion. Then the treatment plan was carried out back in SC. After that onc said the chemo was not working we went back to NYU and started a clinical trial there. At this point since he became so sick on the clinical he went back down south to recover and now we are waiting to see what plan will come next, we were told to look for another trial or back on traditional chemo. It has been 4 weeks and we are becoming anxious.

I am just trying to research treatments options and the use of newer targeted drugs.

So please feel free to weigh in on the situation. Everything helps.

If anyone can recommend a reputable oncologist in the Myrtle Beach SC, Wilmington NC area we would appreciate it.


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 6, 2012 at 8:10 pm  #7356    

Dr West

I know that MUSC, in Charleston, isn’t next door, but it’s a certainly a good center for lung cancer.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

March 7, 2012 at 1:14 am  #7369    

certain spring

Matti, reading your first post I’m not clear whether your father was in fact tested for the EGFR mutation on diagnosis? If he was, what follows is redundant, but anyway …
For “targeted” drugs, the mutation testing mentioned by Dr Aggarwal and Judy would be done on a biopsy. A lab can usually test for EGFR and ALK at the same time. EGFR confers a sensitivity to Tarceva (erlotinib), whereas ALK makes the patient a good candidate for Xalkori (crizotinib). Both drugs come in pill form so are not associated with some of the rigours of chemo, particularly lowered white and red blood counts. I notice Dr Aggarwal says, above: “Although EGFR mutation is not commonly seen in large cell cancer, it may be worthwhile to do [the test], given your dad’s non smoking history.” This is because the EGFR mutation is more often seen in non-smokers (and women, and Asian patients).
Slightly confusingly, Tarceva is also given, as Dr West notes, as a second-line treatment to patients who don’t have the EGFR mutation, as in the post he linked to (which I’m repeating here).
http://cancergrace.org/lung/2010/09/21/benefit-from-egfr-tki-if-egfr-wt
In other words, Tarceva could possibly be an option for your father even without the mutation testing. The point of the testing would be that if by chance he did have the EGFR mutation, the choice would be much clearer – ie there would be a much stronger argument for giving him Tarceva.
Hope this helps. As you can tell, I like things to be spelt out to me, and I have spent the best part of 18 months trying to catch up with what my doctors are thinking! 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 7, 2012 at 5:09 am  #7371    

matti

certain spring
again thank you for the post. i do know that after my fathers second biopsy (1st needle then open biopsy) we were told they were sending it out to sloan to test for further mutations. I never got the formal result but at the time the onc said my father was not a candidate for tarceva and he mentioned EGFR as the reason. However at that time I was not familiar with that and really had no knowledge of lung cancer or any cancer as we hadn’t had any family history of this. Came out of the blue.
So now I am a bit more knowledgeable- as we all become.
I am going to call the onc to find out about the EGFR and ALK as all of you mentioned. Because as it stands now he is not being treated.

To Dr. West thank you for the suggestion of will certainly look into the feasibility MUSC.


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 7, 2012 at 5:45 am  #7377    

cards7up

Matti, I think a question would be whether he’s likely to have EGFR or ALK due to being large cell poorly differentiated. Maybe the onc will chime in on this. 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. Chemo carbo/alimta x3.

March 7, 2012 at 6:01 am  #7380    

Dr. Weiss

In the original post, Matti said, “was told he didn’t have the EGFR for tarceva or the newer targeted drugs” In my opinion, every non-smoker with adequate tissue should be tested, at the minimum, for EGFR mutation and EML4/ALK rearrangement. I assume that “the newer targeted drugs” means that EML4/ALK testing was done–if not, it would be something to strongly consider.


Jared Weiss, MD
Lead Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or University of North Carolina. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

March 7, 2012 at 1:35 pm  #7397    

matti

As per these posts I called the onc today and was told my father was negative for EGFR and ALK.
I also went back to one of his three biopsy results but was not able to decipher the acronyms. But I didn’t specifally see EGFR or ALK (if that would even show as that and not a different way) . So I would imagine that he was tested for this.

How well is Alimta and tarceva tolerated? As we may consider this now.


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 7, 2012 at 2:37 pm  #7398    

Dr. Weiss

For the average patient, both alimta and tarceva are among the better tolerated agents we have.


Jared Weiss, MD
Lead Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or University of North Carolina. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

March 7, 2012 at 4:50 pm  #7401    

matti

Thank you Dr Weiss.
In your experience if a person has been hyper -sensitive to all side effects from chemo (white cell count dropped drastically after first round of gemzar/taxotere) to neupogen shots (he would get a sore throat after the shot was given) also to the kinase mtor inhibitor,that they would also be hyper-sensitive to the alitma and tarceva side effects?
Also what would be a possibly more effective treatment at this point the alitma or the tarceva? considering the EGFR and ALK were negative.


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 7, 2012 at 4:54 pm  #7402    

Follansbee

Matti, my husband goes to Dr Weiss, who is at UNC, when he feels that he should have a second opinion. Chapel Hill might be closer to you than Charleston. And there is also Duke.

Follansbee

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