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Found 11 results

  1. Journey sharing post. My 70+ year old asian mother was diagnosed with lung cancer in 2016 after coughing out blood. Initially detected tumor in one side of the lung. Was given some options, radiotherapy or targeted therapy (Iressa). We had hoped to remove the tumor, so we chose radiotherapy. It successfully removed the tumor, but after a few months, we detected the tumor in the other lung. So we started on Iressa. Iressa managed to control the tumor for many years, up till June 2020 when my mom started having very bad vertigo and vomiting, and progressively became very weak, had tremors, motor function and balance badly affected, brain fog etc. Many sessions with ENTs and neurologists, but they could not identify the cause. Steroids helped the symptoms significantly. We did a brain MRI, found a tumor there (cant remember the size, maybe around 5 cm). Biopsy showed that this was the tumor from the lung. Surgery was done to remove the tumor and things improved. However, after a while, the vertigo and vomiting returned. Another MRI showed some smaller tumors grew to 1cm, and did radiosurgery to remove them. The vomiting continued after the radiosurgery. The many doctors were trying to rule out other possible reasons ie bacterial/viral infection etc, but nothing conclusive was found. Oncologist suggested that there may still be very small tumor cells in the brain lining that cannot be detected by MRI and these tumor cells may be blocking the transfer of fluid between the brain lining, causing all sorts of problems. He suggested to change the Iressa prescription to Tagrisso as Iressa cannot cross the brain-blood barrier while Tagrisso has some ability to do so. We started with double dose (80mg x 2) of Tagrisso, and slowly my mother got better. She's still not her complete self, she gets tired much faster, has infrequent dizziness and vomiting, but at least she's functional now. We have reduced the Tagrisso dosage to 1.5 tablets daily, instead of 2 tablets, no difference noticed from the change. So for now, my mother is functional and does not have much of the previous symptoms anymore. She has been taking Tagrisso for 10 months now. The cost of Tagrisso is a burden but I will try to make it work. My country, Malaysia, has not authorized the use of the generic Osimertinib, and any attempts to order them online will result in warnings and potentially fines and imprisonment. I welcome questions or comments or insights. Note that my memory of this 5 year journey might be inaccurate and my understanding of the doctors' explanations may also not be perfect.
  2. Judy M2

    Tagrisso Rash

    I've had some itchy red patches (no bumps) for the last couple of weeks. I've tried some OTC remedies but nothing has helped. When I saw my oncologist the other day, he suggested I see my dermatologist. I was able to score an appointment yesterday. Luckily he is very familiar with TKI side effects. A common side effect of Tagrisso is rash, because it inhibits fast-growing EGFR cells like skin, hair and nails. Since my rash has no bumps, I'm being treated for eczema. (A rash with bumps would be treated as acne.) So I have a prescription topical steroid and need to moisturize with Aquaphor like crazy. Just posting this for awareness. I've been on Tagrisso for 17 months and this is my first skin flare-up. I guess this side effect can come and go. I was able to get such a quick dermatology appointment because I had a side effect from a cancer drug. They prioritize this type of appointment. Can't wait for some relief to the itching!
  3. Hello, I recently joined and am really amazed by the info and encouragement here. I was recently diagnosed with NSCLC adenocarcinoma in the lower lobe of right lung, stage IV (both lungs and small spots on my liver). I'm EGFR+ and so my oncologist prescribed Tagrisso, not started yet. Yesterday I was thrown for a loop as he is now recommending that I join a phase 3 trial. The trial has 2 arms, one with Tagrisso alone, the other with Tagrisso + Avastin (ECOG-ACRIN). I read that the phase 2 trials were not really successful, so I'm highly conflicted about joining the trial at this time as I was excited to be starting the Tagrisso. Any thoughts?
  4. Annabelle Gurwitch is a member of one of the Facebook EGFR groups, and I've read about her difficult lung cancer story in other articles. She was recently on the Today Show to bring awareness for the need for research and funding: https://www.today.com/health/covid-19-test-leads-lung-cancer-diagnosis-annabelle-gurwitch-t216306 And a Philadelphia chef and his wife are in the news, also to raise awareness: https://www.inquirer.com/food/jim-burke-lung-cancer-tag-time-hapy-hour-20210504.html Great job by both of them.
  5. I've recently joined and posted a couple of comments to others' posts. At LouT's suggestion, I am introducing myself and telling my story. Apologies that it's a long one. In June 2019, I lost my voice and went to the doctor (not my PCP, who wasn't available), who diagnosed me with allergies and suggested I follow up with an ENT. He diagnosed acid reflux. I was on omeprazole for months without improvement, so I went back to my usual PCP in October 2019 and at that time, she heard crackling in my lung. She immediately sent me for a chest Xray and that was quickly followed up with a sinus and chest CT scan. She called me into her office on a Friday at 5 pm and gave me a general lung cancer diagnosis at age 66. Then a flurry of procedures followed in very short order, and the final diagnosis was Stage IIIB NSC adenocarcinoma with Exon 19 mutation. I went back to the ENT in November 2019 and learned that the tumor in my left lung was pressing on the nerve to my left vocal cord, permanently paralyzing the vocal cord. I had a bulk injection of Teflon into my left vocal cord which has given me a partial voice for 12-18 months. This was a surprisingly rough procedure and I am not sure I will repeat it. Both my radiation and medical oncologists planned for aggressive treatment, so I started 30 sessions of radiation and 6 rounds of chemo (Carboplatin and Taxol) in December 2019, ending on 1/15/20. About 2 weeks into radiation, I was fatigued, but worse was painful esophagitis that progressively got severe. I regret not getting a feeding tube that the chemo nurse suggested. I became severely deconditioned and was so dehydrated on my last day of radiation that I could barely ring the bell. I arranged with the chemo center to get hydration 3x per week. I wasn't able to get the right pain management at that time. On the evening of Valentine's Day 2020 I experienced severe abdominal pain that landed me in the emergency room. A CT scan revealed that I had a perforated sigmoid colon and had emergency surgery that night. I did have sepsis and would have died without the surgery. I was in the hospital for 10 days and then a rehab facility for another 10 days. Luckily in the hospital I was able to meet with an excellent pain management doctor and she prescribed methadone (later replaced by Fentanyl patch after I went on Tagrisso) for the esophagitis. After I was discharged I was still so weak but have slowly improved, and today I am lucky to be pain-free and almost back to normal. I do think my hospital and rehab care was excellent. I went on Tagrisso in March 2020 and my PET/CT scans are now showing good progress. My medical oncologist is very happy with my progress to date. So why did I get lung cancer? None of my doctors can be sure, but I was an office worker in the exposure zone in Lower Manhattan pre- and post-9/11. So I've enrolled in the 9/11 Victims Compensation Fund and the World Trade Center Health Program. I did not know that the WTC Health Program offers free annual screenings for different types of cancer (including lung cancer) and I now wish I had enrolled years ago. Anyone who is a 9/11 survivor should enroll even if you are currently healthy. I have had some really difficult experiences these last several months and am very happy to be feeling well again. My poor husband has been an excellent caregiver throughout but I know this has been stressful for him. I am vigilant about Covid-19 precautions and even wear a mask (and face shield) outside while walking my dogs--yes, it can be done!
  6. HI Everyone, My name is Deirdre. I was diagnosed with Non Small Cell, Stage 4, EGFR in May of 2019. I am doing well on Tagrisso. I have mets to the spine and breast. I am "you". I am 50 and was diagnosed when I was 49. I have a 10 and 12 year old, boy and girl respectively. I feel incredibly lucky to work at Johns Hopkins and be from Boston. I have great care. I had a biomarker test right away and was put on Tagrisso immediately. It is working for me. I do have a question about tagrisso side effects. Lately I am experiencing some real fatigue--having a hard time getting up in the morning, sometimes taking naps during the work day, etc. I am also experiencing incredibly itchy skin. Deirdre
  7. I would like to request for help and support for my father who’s just been recently diagnosed with Non-small Cell Lung Cancer. We’ve been told we are at Stage 3B and has been prescribed with Tagrisso. We’re already one month in with this treatment and we are scheduled to have another PET scan on Jan 7, 2021 and meet with our medical oncologist on Jan 11, 2021. I have tried to read and absorb as much as I can regarding my father’s disease and found that given that my father is at stage 3b, I was wondering if we should have pursued surgery or a more aggressive treatment like chemo or radiation for him. I am also trying to understand because on his first PET scan besides his main tumor on right lung and some lymph node involvement, it also indicated the following: “Stable nodular right pleural thickening with hypermetabolic activity, suggestive of metastasis.” He does not have mets anywhere else besides what is in his right lung, lymph nodes and this pleural thickening. I have read and read a lot and most with pleural involvement say it’s Stage 4. But we’ve seen 2 oncologists and both did say Stage 3B. I guess what I think now is if we’re really stage 3B, we should be more aggressive with treatments if we can tolerate those. But I’m not really sure if we are staged “correctly”. I was advised to seek 3rd opinion from US (we’re based in the Philippines), I would love to do that but I’ve seen costs for remote consultation in Dana Farber and it’s USD 2000 - that’s equivalent to 1 month of Tagrisso here. It may seem much less than 16k cost of Tagrisso in US but taking into account our currency value, 2K USD is already a lot of money. So, I’m not sure if 3rd opinion from US can be an option for us. I’ve also read some studies wherein those on Tagrisso also receive local therapy. I’m not sure if this is an option we can pursue given that we’ve already started Tagrisso. I am just so overwhelmed and all I really want so badly now is to get the best treatment option for my father so we’ll have him for a long long time or better, he gets the best chance for remission or even cure. I’m not really sure what my question here is but if you have the same experience, and can give us much needed advice on next steps, or what to ask our oncologist next week with our 2nd PET scan results, that would be great. Thank you so much!
  8. I started on Tagrisso on 7/27. I had minor issues with dull headaches and diarrhea and a little nausea. Then I got an infusion of zometa. I felt great the rest of that and early the next day. I met friends to walk 9 miles but could barely drag myself in after 7.5. OK. Lesson learned respect Zometa. I felt great a few days later and was walking 2 miles daily. Then I had another bad weekend - worked until 5 AM Saturday (IT don't ask). Then the grandkids came over the day and overnight. I got a decent night's sleep that night. Still didn't feel great but I was doing some walking. This we i have SOB, my cough is back with a vengeance and I get light headed. And the fatigue. I know these are all side effects and I am fairly certain the SOB and cough are worse due to allergies. Gotta love the Ohio Valley. They have me monitoring my BP which has always been low. Tonight it was 116/67. I keep my fluids up almost exclusively water except for a daily cup of decaf tea. I have started to pay more attention to my diet. Is this the way it continues or will it taper off? I am fairly certain Tag is working because the blueberry sized lump above my left collarbone is almost undetectable. Thanks for reading my rant. I know many of you are dealing with much more frightening things right now. Jenny.
  9. Hi, my mom was diagnosed with Stage 4 - NSCLC in January of 2019. Her main tumor was in her left lung and the cancer had spread to her lymph nodes by the time we found out she had cancer. Her first line of treatment was tagrisso - which was ultimately working fine until March 2020, the month she turned 50. She did have a couple of side effect issues throughout the year, but now we have gotten news her cancer is now resisting the tagrisso. She received a thracentesis and the results are that she has malignant pleaural effusion. The fluid has since come back into her lungs and her oncologist has recommended a Pleurodesis to help stop the fluid from accumulating. As for the MPE, there is new cancer on the lining of her left lung and her main tumor has grown. Her oncologist would like her to begin a clinical study of a combo of chemotherapy + Immunotherapy. Durvalumab + Platinum Doublet Chemotherapy (pemetrexed + carboplatin) I want to know what to expect as my mom has never received any type of chemo. treatment. I want and know my mom will live a long and prosperous life, but I want to make sure she is at ease and doesn't worry too much. Any advice at all is extremely appreciated. I read some of your stories and they are so inspiring and are one of the top reasons I keep strong for my mom. She's my best friend and I still have yet to show her the world. Thank you in advance!
  10. My dad was recently diagnosed with Stage IV Metastatic Adenocarcinoma with cancer in his lungs, bone, and a tumor near his spine. He's currently getting radiation for that tumor. He is in his early 70s (although most people think he's much younger), he smoked in his teens for about 5-6 years, but quit in the 1970s. Six years ago, he had his right middle lobe removed because it was malignant. He hadn't had any symptoms since, we just recently learned about this. He has been tested and the results are negative for PD-L1, ALK, BRAF, and ROS1, but positive for the EGFR analysis (Exon 19 & T790M). He will be starting Tagrisso (osimertinib) as soon as the prescription is ready: 1. Is it worth inquiring about the KRAS test? 2. Is there anyone out there as old as he is? Has osimertinib been working for you? 3. Should we combine chemo with the osimertinib? 4. What has been your prognosis?
  11. Looking for recommendations on how to manage side effect of Tagrisso (diarrhea.) Currently taking 80 mg. Tried Imodium caplets. They didn’t help much. Now I use lomotil 2.5-0.025.
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