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Eagle13 last won the day on December 10 2018

Eagle13 had the most liked content!

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    Lung cancer patient/survivor

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  1. Hi Mike, Biomarker test can be done from a blood draw. Durvalumab did not work for me. I was not tested for PDL1 prior to the infusions. I had 8 infusions and ended up with a Pleural Effusion. I recommend finding an NSCLC specialist to get a second opinion and request the liquid biomarker test. 🦅
  2. I had my port removed in Dec 2018. Last Durva infusion was July 2018. I was glad to have it removed and have not needed it since. 🙂 My treatment changed and am fortunate that I have not needed any infusions. I feel very blessed. 🙏🏻 🦅
  3. Request a biomarker test. It can be done with a blood draw. Depending on the results you may match with one of the targeted therapy drugs like Tagrisso. Durva didn’t work for me. I was biomarker tested and prescribed Tagrisso. I have been on Tagrisso for ~18months now with no progression. Never forget the power of prayer! 🙏🏻 🦅
  4. Hi Tomm, I’ve been off of Durva for about 16 months. I still have MRI and PET scans every 3 months while taking a Tagrisso pill everyday. There are side effects from the Tagrisso but, I am managing them. I’m pretty much able to do things I could do before being diagnosed in Jan 2018. I pray that the Tagrisso will keep working for a long time. Thanks for asking! Take care, 🦅
  5. When I was on Durva they told me alcohol was okay. Like your Onc said, moderation. If you like chocolate beer I have a couple recommendations ”Sweet Baby Jesus Peanut Butter Chocolate Stout” - DuClaw brewing or Samuel Smith’s “Organic Chocolate Stout” cheers 🍻 🦅
  6. Barb, I developed a pleural effusion while on Durva. Ultimately, I was taken off the Durva because of it. The Onc had a biomarker test done on the fluid and I learned that immunotherapy would not work for me. I had 4 Thoracentisis done removing 6 liters of fluid from my left lung. The fluid was cancerous and moved me from 3B to stage IV. That was last July,2018. I went to a lung cancer specialist and was put on Tagrisso since I am EGFR exon 19 deletion. I take 1 pill everyday. I am considered stable with no progression. There is a small plural effusion left over from my last Thoracentisis where the fluid septated making it too hard to get it all. I recommend asking for a biomarker test. There are many new treatments beyond immunotherapy. 🦅
  7. Kleo, Did they do the full biomarker tests? I think I would ask for another full test. It can be done with blood. https://www.ncbi.nlm.nih.gov/m/pubmed/29413057/ praying for the best 🦅
  8. Spot on! I use a large 3 ring binder to keep everything together and take it with me when I go to the Dr for checkups. I also ask for a printed copy of reports and get the CD/DVD of the scans or other electronic data collected. The disks have come in very handy when I see someone like my pulmonologist so he can see them without having to search during my appointment. 🦅
  9. There are breakthroughs in treatment taking place everyday. This is why its critical that you stay personally informed about treatment and ask your doctor detailed questions. Don’t be afraid to make an appointment with a no kidding expert who eats and sleeps your type of cancer in their daily practice. It has made a world of difference for me. Forums like this one and other focus groups you can join are a wealth of information. Be sure and do your own verification on things you learn. 🦅
  10. Almost 8 months on Tagrisso now. Scans showing no progression and stabilized. Everyday is a new normal. Managing the side effects and able to do things I could not before Tagrisso. 🦅
  11. I am EGFR exxon 19 deletion. I have been on Tagrisso for ~7 months now. I pray that the Durva works for you. Glad they tested you. 🦅
  12. Have you had a PDL1 test to determine if Durva will work for you? Get a biomarker test done to see what mutation you are if possible. I had 8 treatments of Durva and learned it was not working for me. Biomarker test revealed the mutation I have and have been on another treatment for ~7 months with favorable results. 🦅
  13. Hello Opal, The Durvalamb did not work for me. Even though I was given 8 infusions before they stopped due to my Pleural Effusion. I had no PD-L1 test before the immunotherapy. It would shown from the beginning it would not have worked. That switched me from stage 3b to stage 4. Biomarker tests were done on the fluid that was pulled via Thoracentisis. I went to a specialists with the biomarker test results and they put me on Tagrisso. My mutation is EGFR exxon 19 deletion per the tests. I have been on Tagrisso now for 218 days (~7 months). I have had several CTs and 2 MRIs and the results have shown no progression, the pleural effusion is gone, there is reduction in size of some of the lymph nodes and I am considered stable. Yes, there are some side effects from the Tagrisso but, I feel better every day. I am also aware that the type of cancer I have will eventually figure out the Tagrisso and will progress again. Discoveries are being made everyday. I am hopeful that there will be some other advancement for my treatment when the Tagrisso’s time is up. There are several different mutations that can come back from the biomarker testing. I am fortunate enough to have been EGFR that has several options for treatment. Stay positive, don’t be afraid to ask a true specialist for their opinion, never stop believing in the power of prayer. 🦅
  14. Ask for a biomarker test. At a minimum get a PDL-1 test to see if you are a good candidate for the Durvalamb. The biomarker test is really the way to go. I found out after 8 treatments that I was not a good candidate for Durvalamb since there was no PDL-1 test prior to starting treatment. That is when a biomarker test was done. I have been on targeted therapy now for 150 days taking Tagrisso since I am EGFR mutation. I was 3b went to stage 4 while on the Durvalamb. The targeted therapy has stopped the progression of the cancer and reversed it in some of the lymph nodes based on measurements from CT scans. You are spot on about the power of prayer. 🦅
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