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Thread: NSCLC (EFGR) - Never Smoker

  1. #1
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    Question NSCLC (EFGR) - Never Smoker

    I am a 62 yo female with NSCLC, brain & bone mets. Never smoker. Cyberknife to brain and lumbar spine, which eliminated those lesions and my severe pain. Radiation to iliac crest. EFGR - so Tarceva 9 mos, ineffective (bone mets continued and lung tumors got larger). However, I had all the side effects really bad (severe facial rash, Onc said worse he ever saw). Discounts idea that the worse the rash. the better the Tarceva is working. Lost my hair on Tarceva a well. Now on IV chemo, advastin, carboplatin, alimta. Severe headaches for two months, so they took me off Avastin. Two weeks later I still have the severe headaches. I take anti-nausea medications and still have nausea. Luckily the recent Ct scan - chest shows tumors in my right lung are staple; not smaller but not larger. Oncologist now considering stopping IV Chemo after 5-6 sessions and possibly putting me on Tarceva again or drug in same family. Not sure I want to go through tarceva again since it was ineffective first round and side effects were extremely difficult to handle. Would the Tarceva now work better after the IV Chemo?

  2. #2
    Administrator Top User lisa1962's Avatar
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    Hello SensitiveSoul and sorry we have to welcome you here but welcome we are.

    I am sorry you have been through so much but it is good to know the cyberknife to brain and lumbar relieved you of pain.

    As far as second course of Tarceva, I am not sure on that one. That would definitely be a very good question to present to your doctor. Has your doctor expressed other options as far as treatment?

    As you can see, I have moved your thread to the Lung Cancer forum from the General Forum as it is here, where you will receive more precise answers to your questions based on our members own experiences. Keep posting here and we will do our best to help in anyway we virtually can but do know, you have found a place of support and understanding.

    Lisa

  3. #3
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    Hi Soul!

    I also got NSCLC, i know since Oct 15 , and had two different chemos, they didnt work. Then they put me on Immuno therapy with Nivu, and all shrank. It worked great in my body for a year. Had then recently a Brain Tumor, was removed in surgery. I am lucky i got no pain. But maybe immuno therapy would be an option for you? Ask the doc.
    Petra
    Oct 15 diagnosed NSCLC stage IV , Mets in lymph nodes,
    Chemo 6 months, Tumour didn't grow but lymph nodes
    New Chemo 4 months, not working, new spot 4mm in Liver
    Aug 16, start Opdivo ,immune therapy
    CT Nov 16 , Tumor shrank, Lymph nodes shrank
    CT Jan 17, Tumor all the same, Lymph nodes on Neck and under arm back to normal, in Lung and Chest a bit smaller
    July 17, 2x3 cm Brain Tumor found, removed in Surgery, now radiation on spot,still on Nivu
    Fingers crossed

  4. #4
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    Quote Originally Posted by SensitiveSoul View Post
    I am a 62 yo female with NSCLC, brain & bone mets. Never smoker. Cyberknife to brain and lumbar spine, which eliminated those lesions and my severe pain. Radiation to iliac crest. EFGR - so Tarceva 9 mos, ineffective (bone mets continued and lung tumors got larger). However, I had all the side effects really bad (severe facial rash, Onc said worse he ever saw). Discounts idea that the worse the rash. the better the Tarceva is working. Lost my hair on Tarceva a well. Now on IV chemo, advastin, carboplatin, alimta. Severe headaches for two months, so they took me off Avastin. Two weeks later I still have the severe headaches. I take anti-nausea medications and still have nausea. Luckily the recent Ct scan - chest shows tumors in my right lung are staple; not smaller but not larger. Oncologist now considering stopping IV Chemo after 5-6 sessions and possibly putting me on Tarceva again or drug in same family. Not sure I want to go through tarceva again since it was ineffective first round and side effects were extremely difficult to handle. Would the Tarceva now work better after the IV Chemo?
    Sorry to hear you got the lung cancer,but the good news you have the EGFR mutation,it is correct to take Tarceva and it will be ineffective finally,the facial rash could be controlled by using some medicines,such as loratadine。

    when it become ineffective,you could try to use another target medicine called AZD9291,which is invented by Astrazeneca,the most likely reason that Tarceva become ineffective is because the tumor mutated again to T790M,which could be cured by AZD9291.

    but for sure,I suggest to make the genetic testing to confirm which mutation have now,normally there is T790M,Her-2,Cmet,etc,each type of gene mutation will have the relevant target medicine.

    T790M--AZD9291
    Her-2---299804 or 2992
    Cmet--XL 184 or Crizotinib

    of course,if you take the chemo after Tarceva become ineffective,there is a chance that you could still use tarceva again and it will be effective again,but it would be less chance.


    so right now,I really suggest to take AZD9291 to have a try...

 

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