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Judy M2

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Posts posted by Judy M2

  1. Hi everyone, I haven't been checking in for a few months. My husband became disabled last year and I was the caregiver this time. But he has had surgery and is completely recovered. It was a long haul, for sure. 

    I'm sorry I couldn't attend the Hope Summit. I always appreciated the virtual conferences. 

    I'm still doing well and continue to be NED. I've been on Tagrisso for 38 months now (after chemo and radiation). When I was first diagnosed, I didn't think I'd be around at 70, but I will reach that milestone next month. 

    I was so sorry to read that Justin passed away. He and @Izzywent through so much and yet they were so supportive of everyone here. Izzy, if you read this, my condolences to you and the family. 

     

  2. When I was undergoing active treatment, I read that lavender was a soothing/calming scent. I asked my husband to buy me a lavender plant that I kept on my nightstand (I was pretty bed-bound at that point). Ginger and peppermint are also good scents. Maybe get some peppermint-flavored lip balm to focus your brain on that scent. Try only eating cold foods so you don't get a whiff when heating up or cooking food. 

    For your bathroom, buy some PooPouri or M9 spray (made by Hollister). Both will make a big difference. 

    In your case, I'm wondering whether an integrative medicine physician could be a good addition to your team. I really appreciated mine. The downside is that it's usually not covered by insurance. 

    For me, nausea was worse than pain and I had plenty of it after my abdominal surgery. You can get through this. It does get better. 

    P. S. I just learned about NOSA menthol nose plugs, which are used by nurses to mask objectionable odors. Available on Amazon. 

  3. Justin, I'm so sorry for what you're going through. You may not remember my story, but I almost died from sepsis exactly one month after my chemo and radiation treatments ended, almost 3 years ago now. I was extremely sick and I was ready to give up. I couldn't see a way out of my suffering. But somehow I made it through those extremely difficult days. I understand how you feel, and delays only add to your feeling of hopelessness. Try to take one day or one hour at a time. We are all pulling for you, please stay with us. 

  4. James, D3 and a multivitamin are fine to take with Tagrisso. I also take calcium and B-12 as recommended by my primary care doctor for other conditions.

    Your wife should have received literature with her Tag. It's very extensive and should be read. 

    I get my Tag directly from Astra Zeneca through their AZandMe financial assistance program. I've never spoken with a pharmacist. 

    I'm also in San Diego, in Rancho Bernardo. Who is your wife's oncologist? I go to cCare in 4S Ranch and see Dr. Steven Eisenberg. 

  5. JHP, I'm Stage IIIB EGFR+ (Exon 19 deletion) and on Tagrisso since March 2020 after having chemo and radiation first. Everyone is different, but I know of people who've been taking Tag for 7 years.

    I really think it's best to ignore statistics. I never think about possible transformation or what comes next. I know I'm getting the best treatment for my mutation. Live one day at a time and enjoy your time with your dad. 

    By the way, tissue biopsies are the gold standard for biomarker testing, not the other way around. Liquid biopsy is dependent on whether tumor DNA is circulating in the bloodstream, and not all tumors do that. 

  6. Definitely get a palliative care specialist on the team. That's the first thing I'd do if I needed radiation again. 

    When I had severe esophagitis from chest radiation, a feeding tube was suggested by my medical oncologist's NP. But my radiation oncologist's team warned me against it, and I'm sorry I listened to them because not being able to eat or drink caused some really serious complications. 

    Be cautious about Tylenol, excessive dosages can cause liver damage. A palliative care doctor can prescribe a more effective pain medication. Mine prescribed methadone for my severe pain, and when I started targeted therapy, she switched me to a Fentanyl patch. Both worked well. Heavy-duty pain needs heavy-duty medication. 

  7. Good questions, Kamoto.

    When taking Tagrisso, stay away from grapefruit and grapefruit juice. I've also heard that pomegranate juice should be avoided. 

    I've been taking Tagrisso 80 mg since March 2020. My side effects are: dry skin and eyes, itchy rash/eczema, nasal allergies and very sad-looking splitting nails. All manageable. Your wife may or may not get side effects, but regardless I recommend moisturizing well and using products for sensitive skin. 

    Best of luck to your wife. 

  8. A prescription for lorazepam was part of my chemo comfort medications, and it really helped me sleep when I was undergoing treatments (carbo/taxol and radiation). I also take it on the rare occasions when I have shortness of breath. 

    A palliative care specialist might be a good addition to your husband's care team. Mine was invaluable. 

    My personal experience is that things get worse before they get better. 2020 was an awful year for me. But here I am 3 years later, NED and healthy. My husband was a wonderful caregiver but the stress and worry took a toll on his mental health and he needed an anti-depressant and talk therapy to recover. Don't be afraid or ashamed to reach out to your primary doctor if you find yourself struggling. 

  9. Sally, I had acid reflux from radiation, not chemo. It was heart attack-level pain. I was prescribed pantoprozole (Protonix). I also avoided dairy during that time and, of course, acidic foods because I also had esophagitis from the radiation. 

    Acid reflux can also cause nausea, so take those anti-nausea meds (and remember to be proactive about constipation). Dramamine makes an OTC ginger chew for nausea, and ginger tea may also help.

  10. Kamoto, showers were exhausting for me. It helped to get a sturdy shower chair (from Amazon) so I didn't collapse in the shower.

    I too was healthy before starting treatment, and while my treatment after-effects were serious, I think my former good health helped me to eventually recover. Actually, it was 3 years ago that I was starting to feel awful from the side effects of radiation. 

    I actually like shows from the 70s too. One of my favorites is "Emergency!" 

    I hope the New Year brings you relief from the misery of treatment. Take care. 

  11. The cancer itself can cause weight loss, it's called cachexia. I had lost a good 25 pounds before I was finally diagnosed. Calorie-dense foods are usually recommended to try to maintain weight. Things like peanut butter, nuts, trail mix, granola, hard-boiled eggs, milkshakes and cheese. I remember eating a lot of Trader Joe's frozen macaroni and cheese and ice cream. There are also prescription medications that can stimulate appetite. 

    I know how difficult it is to stand by feeling helpless, and the stress takes a lot out of you. It's cold comfort to know that you're doing as much as you can right now. 

  12. LilyMir has given some really good information.

    I also lost my voice, which is what let to my eventual diagnosis, after being misdiagnosed for 4 months. In fact, the American comedian Kathy Griffin also lost her voice as a result of her lung cancer. My left vocal cord was permanently paralyzed by the tumor in my lower left lung. Speaking was such an exhausting effort. While I waited for chemo and radiation treatments to begin, my ENT performed a procedure to add bulk to my paralyzed vocal cord. If this is not a possibility for your dad at some point, a voice amplifier might be a good option. I got one on Amazon and used it while my voice recovered. 

    Can your dad's pulmonologist or GP give a referral to a medical oncologist? I don't know if it works that way in Canada, but you'll need to see one as soon as the biopsy results and biomarker testing come back. 

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