• coco1101's Avatar

    coco1101 wrote on Teachdqs's wall

    I read your comment about AXL Resistence (hope I have that right, I haven't heard of it before). I wanted to drop you a line just to say "please don't assume" anything about your health & treatment!

    There is no expiration date stamped on you and any one of us. Get all the treatment you can, look for another Clinical Trial (clinicaltrials.gov). Talk to your Onc, talk to another Onc, don't stop talking and finding out all you can. LWC was looking at a poor outcome years ago, yet she was treated with a Immunotherapy that has kept her here with us and fairly healthy... still here, driving someone crazy and being a friend to others...

    In my group, there is a lovely lady who was also in a very difficult position due to her Cancer. She's been in 4 clinical trials, took all kinds of meds and last year she had her port removed!!! She must be feeling really confident to remove her medi-port...I'll never remove mine! But I've been fighting Lung Cancer over 6 different diagnosis (28 years), and my Lung Cancer keeps popping up here and there...plus two other types of Cancer - both of which came back more than once. Still on Chemo, still sick as dog, still taking the Chemo, still fighting...

    All the best to you!

  • Teachdqs' Avatar

    Teachdqs wrote on LiveWithCancer's wall

    I dont know if you are still kerping up here but would like to speak with you if you are regarding your treatment. I have same..and treatment no longer working and told 6 months. Was wondering what was so helpful to you that was maybe different.
    Thanks. [email redacted]

    3 Comments
    • LiveWithCancer's Avatar
      LiveWithCancer

      Hi. Yes, I was originally given 4 months. I started on a trial for nivolumab (Opdivo) in July 2013. That was the game-changer for me. I was on it until just this week. I am currently taking a break from it. If you haven't tried immunotherapy, please talk to your doctor about it. Also, have your tumors been tested for genomic mutations? It is possible you might have a mutation that will respond to targeted therapies.

      Best of luck! If you want to leave your email address, you have to trick the system: username @ gmail com

      about 1 month ago
    • Teachdqs' Avatar
      Teachdqs

      Thanks so much and I did read later where you had the discussion and decisiom about radiation. It really sounds like you made the right decision. Best wishes on that and prayers for complete healing.

      I was on Gilotrif for the EGFR mutation for 11 months but tumor created AXL Resistance protein and no chemo will work now. There is a Clinical Trial in the very beginning stage but I didnt qualify for it when they did a brain scan and found there are 2 tumors there now as well as a spot in the liver and increased activity in the bone. So now radiation suggested for brain. But nothing for the cancer now and assumed less than one year.

      Thanks for your response and will keep up with you here.
      Prayers

      about 1 month ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      @Teachdqs, I am so sorry to hear about the new tumors and the prognosis. We all know that we will die someday ... but when we are told it is imminent, that puts a whole different spin on things. I hope the radiation will take care of the brain tumors.

      You are in my prayers. I pray that you won't be in pain, that they'll find something that will work, that you are at peace. Big hugs coming your way. I am always here for you.

      about 1 month ago
  • 2943's Avatar

    2943 wrote on Teachdqs's wall

    So glad you found this site where you can connect with some of us who have walked this path before you. I have taken part in clinical trials. One extremely successful in turning my cancer around and changing a 20% chance of survival into ‘we are going to cure this’. I would participate in any trial that may do this. As others have said.. you can change your mind. Hugs to you!

  • Teachdqs' Avatar

    Teachdqs asked a questionLung Cancer

    Opinion or Experience with Clinical Trial

    6 answers
    • carm's Avatar
      carm

      Hello, I am an oncology nurse and I agree with the above. I have done studies as a nurse clinical coordinator and as a patient. If you don't like the participation or the study once you begin, you can quit at any time and return to traditional therapy. Many of the studies out today are with therapies that have already gained approval from the FDA. Best of luck to you.

      about 1 month ago
    • Terri's Avatar
      Terri

      I have been in 4 clinical trials. Overall a good experience, however I had a couple of bad experiences, notably at the National Cancer Institute in Bethesda, Maryland. I knew I was a guinea pig there. I would do it again. I think I am alive almost 10 years after do with Stage 4 melanoma because of TIL trial. It was the one in Bethesda. It didn’t cure me but sure slowed it down. I have a genetic mutation that makes my cancer more virulent.

      about 1 month ago
    • Woodburn9's Avatar
      Woodburn9

      I am stage 4 NSCLC. At my time of diagnosis only 6% of us lived for 5 years. My first line of therapy failed before my 6 month mark so I was facing a true death sentence. A clinical trial was offered and that drug has kept me alive for 5 1/2 years now. While on the clinical trial I was scared every 8 weeks instead of 12 weeks and my labs were checked more frequently. I saw a doctor, then an NP and then a research nurse every visit so that nothing was missed. Wonderful care and would definately do it again when the need arises

      about 1 month ago
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    Teachdqs started following

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    Teachdqs shared an experience

    Clinical Trial (Other): May be entering one April 30th and nervous about it... Cant decide. Anyone been througj one and how did you feel about it...and your outcome?

    1 Comment
    • LiveWithCancer's Avatar
      LiveWithCancer

      I was in a clinical trial for 4 years. I would go back in one in a heart beat if i could. Keep in mind that you can drop out at any time, should you desire.

      Best of luck!!

      about 1 month ago