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Saturn_Bound

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  • City
    Santa Ana
  • US State (if applicable)
    CALIFORNIA
  • Country
    United States
  • Gender
    Female
  • Status
    Not a patient
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    Travel, reading, movies, picnics

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  1. Hi Coco, i am so sorry he is experiencing worsening symptoms. I know the struggle all too well as I’m there with my mom right now. She actually can’t even make it to the bathroom next to her room because of rapid desaturation so we are now using a bedside commode. She still desaturates to 80 but at least it’s manageable, we take little steps....first sit on the edge if the bed...wait till oxygen goes back up...then stand up and move to the commode...wait for oxygen to get back....etc i am glad to hear you finally found an oncologist you like. Did they mention any next steps for treatment yet? My mom is dreading her next chemo infusion since it completely wiped her out. I’m starting to wonder if all the chemo is worth it in terms of quality of life but I’m trying to trust what the oncologist has planned!
  2. Hi Coco, I am really sorry to hear about your husband. I can see lots of love in your photo. I am my Mom's caregiver and we are in a similar boat as you. I break down every day just imagining a life without her but I always slowly pick myself back up to be by her side. She is also on 24/7 Oxygen now and cannot walk 2 steps without the oxygen levels falling dangerously low (72%), and it takes a couple of minutes for her levels to get back to 90 after any activity (even with the supplemental oxygen). The physical therapist does not want her oxygen dipping low, so anything (such as using the commode) take a good 5-10 minutes of pacing her. I just wanted to share a little and let you know that you and your husband are also in my thoughts and prayers. I hope more than anything they both will find a treatment that improves their condition and quality of life, and hopefully gives us some good years ❤️
  3. Awesome thanks everyone for your input. Yes @LexieCat, my mom's Oncologist did mention she would look at clinical trial options for her down the line. My concern is that by the time that happens, the cancer will be so progressed that she will not qualify. From my understanding, the eligibility requirements for clinical trials can be quite strict, (no brain mets, etc.). Thankfully my mom has no brain mets (so far), but she needs to use supplemental oxygen a couple times a day, and she can only walk short distances across the house. I guess I just feel like I want to take it into my own hands because I feel like we could be losing precious time. The onc did mention her hopes were that the chemo would keep her stable in the meantime, but I just want to be proactive in case there is a chance getting her on a trial sooner might help save her life.
  4. Hi, Has anyone heard of this clinical trial and, do you think it seems promising? I am wondering if I should try to get my mom enrolled since she had progression after Keytruda: https://clinicaltrials.gov/ct2/show/NCT02973789?term=LUNAR
  5. Hi everyone, I wanted to ask if anyone has ever had to use supplemental oxygen? My mom has had increased shortness of breath, with levels around 90, so the onc prescribed an oxygen supply as needed. It helps her a lot, but psychologically she feels like it means there’s no going back. She gets out of breath walking to the bathroom, etc so she uses it as needed for now. Im just wondering if once on oxygen, is it usually downhill from there or do people bounce back from that?
  6. Wishing for a clear scan ❤️
  7. Thank you Tom as usual you are very helpful and make me feel more at ease about this whole process. I wish someone could just say “everything will be ok and she will beat this” but I know now that this is a marathon.
  8. Hi Everyone, So my mom has started her new chemo regimen which is Taxotere + Cyramza. The plan is to go for four cycles and get a new PET scan from there. As a recap, she was diagnosed at a stage 3b/4a in June 2020 (two oncologists considered her diagnosed 3b vs. 4a). She did chemo starting August 2020 (I think it was Cisplatin + Alimta) for four rounds but the tumor in her lung grew a bit, so was was started on Keytruda in November 2020. We changed Oncologists in March due to insurance changing, so she had a 2 week break in treatment. She continued the Keytruda again about a month ago (now at UCI Medical Center), but she had increased S.O.B, and the new PEt scan showed progression to new lymph nodes and some growth in her lung tumor. On Monday, 3/29 my mom starter her new regim the Taxotere + Cyramza. I'm not sure if its mental, but she seems to be doing better already. Her oxygen levels are a bit higher and she has a LOT less coughing and trouble breathing. A few lingering questions I have: 1) Is it normal for chemo to work so quick on the tumor? 2) My mom has no current mutations, what are the chances she develops a targetable mutation in the future? 3) If Keytruda stopped working (she has a PDL1 of 80%!), does that mean a different immunotherapy will be inneffective as well? 4) Has anyone had progression after Keytruda? Has anyone had any luck with the taxotere + Cyrmza combo? The oncologist has a plan to go from chemo, to immunotherapy, to chemo, and so on. She also hopes she can get my mom on a clinical trial for people with progression after Keytruda. Just nervous and circling back here for any input/hope! Oh also she will be getting another MRI soon to make sure she is clear in the brain. So far the cancer has only metastasized to the other lung and lymph nodes, but distant lypmh nodes, one near the liver.
  9. Wow thank you all so much for your thoughtful responses. Steff, thank you especially for your detailed explanation of the side effects your mom experienced. It makes me so happy to know she is NED! I’ve been a crying mess all week fearing the disease is progressing. The doctor ordered an urgent PET scan which she went to yesterday afternoon. It’s been tough to see her go from walking 2 hours a day (1 month ago) to barely making it through a 10 minute slow walk around the block. She also experienced back to back pleural effusions in October and November, but she improved a LOT after starting the Keytruda, and has had no issues until now (4 months into Keytruda treatment)..luckily her condition right now is not as bad as it was when she had pleural effusions...but it’s still concerning. When she is sitting down her oxygen levels are more normal around 94, but any light activity like walk to the bathroom and she is short Of breath and it falls to 91. I’m praying and hoping this is not what we fear the most, because she has no mutation that would make her a candidate for targeted therapy....and chemo didn’t seem to have much of an effect on her tumor the first time around. Please Keytruda do the work!
  10. Hi Everyone, My mom has been on Keytruda since December and has been doing pretty well. I worry now though because she has recently experienced an increase in shortness of breath and coughing. Also, her oximeter levels are lower than normal, they we usually at about 95/96 and now it’s at 92/93. I will speak to her oncologist about this, but I am wondering could this just be related to the immunotherapy? From what I read, I understand that keytruda side effects include shortness of breath and coughing...but it’s weird to see this pop up after she had been doing so well for months. Should I be worried this cancer is progressing?
  11. Thank you Gary! We will try your suggestions until we can see the rheumatologist 💕
  12. Hi all! Happy to report my mom is breathing A LOT better since immunotherapy started in November. No more pleural effusions since early December! We are waiting on the new pet scan result to see what’s going on with the cancer. But just within a handful of days, her knees have become swollen and hurt a lot. Last week she was walking an hour a day and now she has very little range of motion in either knee. Every time she sits or stands up I can see her wince in pain even when she switched positions while sleeping it caused her a lot of pain. THC helps a bit but she doesn’t like the feeling of being “stoned” or out of it. We will likely see rheumatologist soon. anyone know of similar symptoms on immunotherapy, and, what has worked to manage the pain? Also, do you know if this can get better over time or, will she have severe knee/joint pain for as long as she is on Keytruda? (I must say, we a million times prefer this over the pleural effusion fluid build up she was experiencing before) Thanks everyone, hope you all had a good holiday and new year ❤️
  13. Is it possible for Keytruda to potentially get a stage IV adenocaecinoma patient to NED over time?
  14. Thank you Lisa for the kind words. I am not worried about the catheter down the line, we are willing to do whatever it takes to see her more comfortable. I am praying the treatment can keep her stable for a long long time and I hope she is one of those people that can have it as a chronic disease or even NED ❤️
  15. Has anyone heard of someone or know of someone that has survived malignant pleural effusion beyond the 3-12 month general prognosis?
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