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Everything posted by Eagle13

  1. 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. 🙏🏻 🦅
  2. 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! 🙏🏻 🦅
  3. 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, 🦅
  4. 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 🍻 🦅
  5. 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 Tho
  6. 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 🦅
  7. 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. 🦅
  8. 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. 🦅
  9. 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. 🦅
  10. 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. 🦅
  11. 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. 🦅
  12. 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 t
  13. 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 measurem
  14. Don’t forget the Organic beet juice. I also take 1000 mg of Tumeric (curcumin) daily. 😬 Kleo - the weird muscle and joint issues are just part of the norm dealing with cancer from what I can tell. It may have been triggered by the chemo and radiation, at least for me. It continued through my Durva and also with my current treatment of Tagrisso. The Tagrisso has cause muscle issues and fluid build up in my lower legs and ankles. You just have to keep moving. 🦅
  15. Bob - that was exactly how I was prescribed Imfinzi without a PD-L1 test. Unfortunately, it did not work for me. I can’t emphasize enough how important the bio-marker testing was for me. In hind sight, I believe the bio-marker test should be done before any treatment is started for NSCLC. My bio-marker test was not done until the Imfinzi showed it was not working for me and I ended up with a Pleural Effusion. 🦅
  16. Kleo, That is wonderful news! Congratulations! 🦅
  17. Kleo- I had 4 thoracentisis procedures that involved a large needle stuck through my back into the pleura around my left lung. They drained over 6 liters of fluid from my left lung through these. They did a local anesthesia each time. I watched the procedure on the sonogram live. The initial stick was similar to the stick for bloodwork. It was surprisingly non-eventful. I suspect the needle biopsy will be similar and actually less of an event. I’m sure they will give you a lidacane shot to numb the area that will actually hurt worse than the procedure. 🙂 🦅
  18. Took ~2 weeks for my biomarker test to come back. Absolutely a game changer for me. I take a Tagrisso pill once a day since I am EGFR. No more infusions since Tagrisso started and my port is being removed next week. This is working for me. I pray you get the right treatment to fight your mutation. Biomarker test was done on my fluid from the thoracentisis. It was essentially blood. BTW - I would ask for a bronchoscopy to check to make sure your lymph nodes are normal. Thats what they biopsied the first time for me. They didn’t make it to the small nodule that they were after
  19. I have been on Tagrisso for almost 4 months with good results. Curious if there are others on Tagrisso and what side effects they are experiencing? I have been experiencing fatigue, edema and muscle pain in my legs. 🦅
  20. Originally I was told needle biopsy was the only option. Except for me, the nodule was too close to my heart so serious surgery was needed. I declined. After monitoring for almost a year, I was told there was a procedure called a navigational bronchoscopy. I opted for that since it was minimally invasive. I am now almost 1 year to the day a cancer patient/survivor stage 4 metastatic adenocarcinoma lung primary from my biopsy via the navigational bronchoscopy in 2017. My CT this week showed results that the targeted therapy is working for me and has shut down the cancer compared to my
  21. Here is the explanation of the biomarkers https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5137804/ 🦅
  22. I was put on Imfinzi or Durva right after my Chemo and radiation treatment completed. (With no testing) I received 8 treatments of Durva before I had to stop due to the Pleural Effusion. I am now Stage 4. Biomarker testing was done on the fluid that was pulled. I sought a second opinion with the agreement of my Onc. My Onc was puzzled the Durva wasn’t working and ordered the biomarker test on the fluid. Results came in right before the 2nd opinion appointment. The 2nd opinion Dr took over my primary care by my choice and put me on the targeted therapy. The targeted therapy is 1 pill
  23. This confirms biomarker testing can be done from blood work. https://www.nccn.org/patients/resources/life_with_cancer/treatment/biomarker_testing.aspx I personally had 11 test tube size viles of blood pulled from me in one sitting to verify the biomarker test results from my pleural effusion fluid. Based on what I have learned I don’t understand why this is not the first test done when you are diagnosed with lung cancer. I am hopeful the current targeted therapy I am receiving will continue to work for me. I’m in the 4th month and go for a CT next week to verify its still wo
  24. Kleo- I too wish they had done the biomarker testing on my biopsy. My biomarker testing was done on the fluid pulled from the thoracintesis. I also had blood pulled that confirmed the finding from the biomarker testing. In my opinion it can be done from bloodwork. 🦅
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