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Deb W

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Everything posted by Deb W

  1. Hi 😧 I am sorry you're having this experience. It was so annoying. I stopped wearing eye makeup altogether during that time. I ended up having to stop Keytruda after 7 months because it caused colitis. I noticed my eyes to clear up within 4 weeks of stopping the drug. The opthamologist gave me a steroid for my eyes, but you can't really stay on that for an extended period of time. I was told to use a cool compress. I never went back to Keytruda. I tried a targeted therapy in April and had an allergic reaction. I ended up having 3 weeks of radiation for 3 mediastinal lymph nodes. I will know on 11/18 whether it worked. All the best to you. By the way, the Keytruda worked on me, but I just can't take the side effects.
  2. Tom - This is so helpful. Thank you so much! Now I see why I've been so confused by the terms!
  3. Hi Stephen, My experience was similar to Lexie's. I had 1B - adjuvant therapy was not offered because the margins were clear and there was no lymph node involvement. I didn't know enough at that time or I would have asked for it. One year to the date of the 1B diagnosis - I was diagnosed with Stage IV. Even though I had regular follow-up scans. I was told it was micrometastasis and could not be seen. If I had it to do over and knew what I know now,I would have demanded chemo. Currently I am not having any treatment due to a systemic inflammatory response. My last scan showed remission. Tomorrow is a big day for me as I will be having a PET scan because of all of the side effects I've been experiencing. Good luck to you.
  4. After the triplet, I had Keytruda alone and it worked, but after 7 months I developed Colitis and was not longer able to take it anymore.
  5. Hi Iris, I am so sorry to hear of your recurrence. I have an understanding of how you might be feeling. Did they tell you the stage and is there a treatment plan in place? I was diagnosed with 1B in March 2019. I had a lobectomy and all margins were clear so no chemo or radiation after surgery. I had a recurrence April 2020 - diagnosed with Stage IV. It turned out that I had a mutation MET Exon 14 Skipping but it wasn't known until I had already received chemo and Immunotherapy. In March of this year after 3 NED scans, it came back again. I tried the Targeted therapy drug and had an allergic reaction after 10 days. I had a CT scan and it showed that the drug worked, but I can't take it. I feel good, but anxiously awaiting the treatment plan. There are so many advancements in lung cancer treatment. We will be here to support you in any way we can. Deb
  6. Deb W

    5 Years!

    Great news, Susan!
  7. I was taking Tabrecta for 9-10 days. No edema, but on day 11 I had a serious allergic reaction to the drug and ended up in the hospital so I can no longer take it. I did have what my oncologist called an "immediate response" with Tabrecta. I had a CT scan and the tumor shrunk and there was no sign of cancer in the two lymph nodes. My oncologist is working on a new treatment plan that might include Tepotinib (similar properties as Tabrecta though) he is also including an allergist for a consult - I will see him in a week. I am not having treatment presently as he's figuring out a plan - checking with EMD Serrono about Tepotinib. There also might be an option to go back on Keytruda - however, in the past that I was taken off that due to toxicity which caused colitis.
  8. Deb W

    Brain MRI

    Tom - the new oncologist is working out just fine, thanks.
  9. I have not heard of using Tabrecta and immunotherapy combined together. I did have Keytruda with Carbo and Alimta, then Alimta and Keytruda, then Keytruda alone. The Keytruda was stopped at the end of December and now I'm starting Tabrecta - actually today. My oncologist did say that Keytruda might be used again in the future, but he did not offer it with Trabecta.
  10. Deb W

    Thanks, Kristin!

    Thank you.
  11. Deb W

    Brain MRI

    Thanks so much for your well wishes! I did get the results and there are no mets to the brain! I can't even describe the relief I feel today! The Tabrecta should be delivered today. Thanks again everyone. Deb
  12. Deb W

    Tabrecta

    Yes, be sure to call every day! Update on mine...it turns out the person working on my case went on vacation. Novartis approved the trial sample on March 22. The pharmacist at my medical center was shocked that they would drop the ball like that. I'm told it will be delivered on Friday. Fingers crossed. Lexi, thanks for the link! Deb
  13. Deb W

    Tabrecta

    I think Pharmacy is the issue. I spoke to my oncologist and Novartis was supposed to have Fed Exed it to my home on Friday per my oncologist. My oncologist was surprised to learn I didn't receive it. He's checking on the status. I am hoping to get an answer today. I do know they approved the 4 week free sample. Not sure what happens after that...the copay is unbelievably expensive.
  14. Deb W

    Tabrecta

    Hi friends, I have been waiting almost 3 weeks for this drug. Is that common? Deb
  15. Deb W

    Brain MRI

    Hi friends, I'm going for the dreaded brain MRI this afternoon. Asking for good vibes and thoughts my way. 🙏 Deb
  16. Sib, I was told by my oncologist that Tabrecta has an added protective benefit for the brain when compared to Tepotinib.
  17. Welcome. I think it's worth it to be treated. There will be side effects, but we're all different in what we experience and how we tolerate them. I think your father will let you know how he wants to move forward. I am a stage IV lung cancer patient and survivor. I was diagnosed in 4/2020. My last 3 scans have been clear. I'm not going to say it was a walk in the park with side effects, but it was so worth it! All the best to you and your dad. Deb
  18. Deb W

    Swollen legs

    Hi Gary, I went through a period of time where I had pain in my legs - no swelling and the pain went away over time. I didn't experience severe side effects (microscopic colitis) until after 7 months of treatment. I think we're all different as to how this drug affects us. I would definitely ask your doctor. How long have you had the swelling and pain? Deb
  19. Deb W

    Trials?

    Hi Jack, ? This drug was approved for METex14 skipping: http://media.emdserono.com/2021-02-03-FDA-approves-TEPMETKO-for-Patients-with-Metastatic-NSCLC-with-METex14-Skipping-Alterations
  20. Deb W

    Keytruda

    Hi Tom, I had a recurrence and PDL of less than 10% and Keytruda worked for me. Good luck. Deb
  21. Deb W

    METex14

    Hi, The FDA approved a new drug for METex14 patients: http://media.emdserono.com/2021-02-03-FDA-approves-TEPMETKO-for-Patients-with-Metastatic-NSCLC-with-METex14-Skipping-Alterations
  22. Hi, I have MET Exon 14 skipping. I was stage 1B in 3/19, had surgery ULL lobectomy and had clear follow-up scans. In 4/20 I was diagnosed withI stage IV, recurrence micro metestases. I have been in remission since August. I did not learn of the MET mutation (2nd opinion oncologist found it) until after I had already been put on carbo/alimta/Keytruda (changed oncologists). They felt it was better to continue with this plan since it was working. I have been on a maintenance plan with Keytruda,but now after 7 months I've developed colitis so I'm on hold with the Keytruda. I have been able to work through this ordeal, but I don't think I would have been able to had I not had my own practice and limited the number of clients I see. I'll be meeting with my oncologist on Tuesday, and since I'm having the GI issues, maybe it's time to switch to a targeted therapy drug? I'm not sure how we'll proceed. I don't know the answer to your last question. Thanks for the reminder of the MET Crusaders. I did join that group, but haven't been on the site. Deb
  23. Ha Ashwa, I was diagnosed with Stage IV in April 2020. I had the triplet - Carboplatin, Alimta and Keytruda (4 treatments). After that the Carboplatin was dropped, then the Alimta was dropped. I had clear scans in August, October and December. I am in remission. I found out I had the MET mutation , but my former oncologist overlooked it - blamed it on the surgeon who did the endoscopy and said he didn't send him the report. If I had known I had the MET mutation my treatment would have been targeted therapy with Trabecta. My point is the triplet and standard treatment worked for me. I think it's worth the risk of side effects. I was supposed to be on Keytruda for a total of 2 years, however, I recently was told I have immunotherapy induced colitis. I skipped the last treatment and was put on a 4-week course of steroids (my immune system is in overdrive). I will find out in a week or so if they plan on starting me back on the Keytruda.
  24. Deb W

    Please help!

    Hi Tina, As others have said, a low dose CT screen is important (I think most important) - even if it's not covered by insurance. I won't go through my whole story, but I have a strong family history of cancer as well. I didn't know anything about low dose CT scanning - mine was found by my PCP at my annual check up. I was having a conversation with my oncologist the other day about my family history. He said that his belief, and there is a lot of research supporting this, getting cancer over 50 is random. For sure smoking increases your risk, but it won't benefit you in any way to blame yourself for the past. There are many people that smoke for their entire lives and never get lung cancer. I think what's important now is to take the very best care of yourself in terms of nutrition, exercise and hydration. But even then, as we age we are at an increased risk of cancer. Wishing you the best and know that we're here to support you! Deb
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