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JoWell

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Profile Information

  • City
    Alhambra
  • US State (if applicable)
    CALIFORNIA
  • Country
    US
  • Gender
    Female
  • Status
    Lung cancer patient/survivor
  • Interests
    Prolong the lives of lung cancer patients, improve quality of lives of lung cancer patients.

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  1. @catlady91 yes, Baba Vanga
  2. A Bulgarian clairvoyant predicted that we would find a cure for cancer in 2021. I chose to believe her! Sure many of you have seen the headlines but if you haven't it can be found on the internet. I hope this post doesn't offend anyone. I count on anything that gives me hope. Thanks.
  3. Hi Judy @Judy M2: Thank you for answering my question Have to admit that I felt lonely here for a while. My mom's lung responded well to Tagrisso, but the lymph nodes on her neck are still showing high SUV. She had a biopsy done this morning, we're waiting for results. What could be the cause? Have you heard similar situations? I'm so glad that your recent PET scan showed success! I wish you many many many more clean scans! JoWell
  4. Hi everyone: My mom was stage IV adenocarcinoma with MPE (pleural effusion). Yesterday we learned that she is EGFR positive, she began taking 80mg Tagrisso yesterday. In terms of symptoms, she has shortness of breaths, light dry coughs, and she has 3 enlarged lymph nodes. I was told that the drug will start to show results after two weeks. I hope to find out from you if Tagrisso really will help with MPE? The doctor said it should but I can't find much info yet online and from this forum. Would love to get some info from you. Thanks much! Josephine
  5. Hi, I'm back! Joined my mom's first appointment w/ her oncologist yesterday via video. My mom is EGFR positive, her doctor put her on Tagrisso. My mom's PD-L1 is also high. I asked about Immunotherapy. The doctor said Kaiser does offer the treatment, but for now the first line of treatment for my mom is Tagrisso. I asked about if my mom were tested for ROS1, ALK, KRAS, BRAF, etc. The doctor said that those results weren't back yet; but these mutations were "mutually exclusive" meaning that my mom is only EGFT+. The doctor will give my mom a panel of blood tests after two weeks (one of which is to check her liver), and will see my mom two weeks after the blood tests are done. I didn't successfully record the appointment (forgot to hit the "stop recording" button). What do you guys think? I think it's quite straight forward, standard treatment for EGFR. Shall I go get a 2nd opinion? From reading our forum and "googling", I think Tagrisso sounds right. What do you guys think? I'lI join the EGFR discussion board after this post. But please do reply to me here. I'm interested to hear your opinion. Thanks much as always! Josephine
  6. Thank you so much for your replies. I can tell that you are well taken care of by top doctors at world-class facilities. And you are dearly loved by your families. My mom is deeply loved by our family, I just need to ensure that she's getting good medical care. My mom has been feeling weak for a year. Last August she had a full-body CT scan, and was given the all clear. Since March I moved in with my parents to quarantine together (easier that way as I can shop for them), I noticed that my mom slept in more and took more naps. She and I agreed to see her doctor once the pandemic is over or when it is a little safer to go out. My mom is 68. In the past she had periods of feeling weak, but nothing a cross-country trip or a cruise vacation wouldn't fix. So we weren't too worried, we agreed that she should exercise more. Fast track to mid August (it pains me to think that we wasted 5 months to get her care), one night her legs began trembling when making dinner, and she complained about shortness of breaths. That night I send her to the ER. Doctor told me my mom had just "a little fluid" in her right lung and he would keep her in the hospital. That little fluid turned out to be 1200ml of MPE (pleural effusion) on 8/14. Initial cytology report was out on 8/19 indicating adenocarcinoma cancer, genetic testing was ordered on 8/20. Her oncology was assigned to her. There are only 3 oncologists at our Kaiser location to treat her illness. Yes, fully understood MPE would make its way back, my mom drained another 1500ml on 9/4. She had CT scans and MRI while at the hospital, no PET scan. She has enlarged hilar lymph node(s), I believe a total of 3 enlarged lymph nodes. No cancer in other parts of her body. Past several weeks have been a torture. Lots of gloom news, numbers quoted on ncbi.nlm.nih.gov (and other sites) were swords going through my heart. Now because of you, I'm cautiously optimistic that my mom can live longer than 3 to 12 more months. God I hope she will. I can't lose her. Thank you again. Armed with the info you offered I'm feeling a tad more confident for tomorrow. I'll be back. TTYL.
  7. Hi everyone: I'm Josephine. My mom has stage IV lung cancer, adenocarcinoma, with MPE. Not confirmed yet (pending final cytology report and genetic testing). But with the MPE, and they found a stain matches adenocarcinoma in the initial cytology report, we know what we're dealing with. I was devastated and shocked (my mom never smoked, no cancer in her family). I cried for days, then I thought I had to be strong and be my mom's advocate. Then I found this forum, I'm glad I found you. Tomorrow is our first consultation with her oncologist. This is the appointment where we'll learn what's in the final cytology report and the results of her genetic testing. We live in Los Angeles, our city and our state is dealing with wild fires. The doctor has a family emergency, our appointment was changed from in-person to a video appointment. My mom and I are disappointed, we were hoping to meet with the doctor, assess our chemistry etc. But we understand the situation. I assume tomorrow she'll tell us the treatment plan etc. The appointment is an hour long. If you guys have any advice (what to ask, etc.) please let me know. My mom is with Kaiser. She's been using Kaiser for a good 20+ years. Kaiser has been convenient and effective (my dad had a bypass surgery and a hip replacement surgery there, both were successful), but when I ask around about Kaiser treating cancer, I get somewhat negative feedback. Reading their online resources, it seems they don't offer immunotherapy. Are any of you familiar with Kaiser and can give me advice there? Advice on anything. Open enrollment is coming up. Shall I try to switch and get my mom treated at Cedar Sinai or City of Hope? Is switching to a new medical provider isn't viable as my mom now has "preexisting" conditions. So many questions to ask. Appreciate any information you guys can offer. I'll be a regular here. Talk to you soon. Josephine
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