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Judy M2

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Everything posted by Judy M2

  1. Debbie, in addition to Karen's good advice, the American Cancer Society can provide financial assistance for travel and lodging. You may want to look into that. Take care.
  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. 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.
  4. Tagrisso should do a good job of drying up the pleural fluid but if it lingers, be sure to ask about having it drained. I'm Stage IIIB and on Tagrisso for almost 3 years after first having chemo and radiation. I was not a candidate for surgery. Hope you get relief soon.
  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. See an opthamologist to determine what's going on with your eyes. My targeted therapy (Tagrisso) can cause vision issues, so a few months after starting it I went to an ophthalmologist for a baseline exam. All was normal, even though I have occasional blurry vision due to Tagrisso.
  7. 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.
  8. When I first started Tagrisso in March 2020, I was recovering from sepsis and life-saving abdominal surgery due to aftereffects of chemo and radiation. I remember not being able to tolerate certain odors, and in fact I still cannot stand the smell of bacon cooking. But I don't think I've had taste changes. I agree with Bridget that an oncology dietician would be a good idea.
  9. 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.
  10. 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.
  11. Hi Kristin, it is best to stay away from Dr. Google, and pay no attention to statistics. It's vital that the biopsied tissue is sent for biomarker testing, as Karen suggests. I'm a 3-year survivor (so far) of Stage IIIB EGFR+ NSCLC. I just want you to know that it is possible to live well with our disease, even at Stage IV.
  12. 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.
  13. 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.
  14. 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.
  15. 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.
  16. This is a rough journey for anyone who travels it, that is for sure, and I'm sorry you and your family are going through this difficult time. My lung cancer isn't curable either, and I have no idea how long I'll survive it. But the reality is that tomorrow isn't promised to anyone. I've learned to live one day at a time. I don't remember if you've looked into a palliative care specialist who can help manage your dad's pain and quality of life. I couldn't tolerate the usual opioid painkillers like oxycodone and morphine, so my palliative care doctor prescribed methadone, which worked very well when I had a severe case of esophagitis from radiation. A sleep aid and anti-anxiety medication can also be prescribed (both are standard chemo comfort drugs). Palliative care is a great resource and I can't recommend it enough. I hope your dad's radiation treatments start soon. Waiting is so awful.
  17. Hi Brian, I'm Stage IIIB EGFR+ but only 3 years post-diagnosis. I've had chemo and radiation before starting Tagrisso in March 2020. I've been NED for a while now. I don't follow any special diet or any alternative treatments. The supplements I take are those recommended by my primary doctor for specific conditions (like osteopenia). You might get more information/answers from the EGFR Resisters Lung Cancer Patient Group on Facebook. I was on a ketogenic diet for most of 2019, and then I was diagnosed in October 2019 (after being misdiagnosed for 4 months). Based on this experience, I don't believe that a keto diet was helpful in preventing or delaying my lung cancer. My medical oncologist works directly with an integrative medicine physician. I saw her for a while when I had radiation side effects. I'd be willing to go back if I needed to.
  18. When I had esophagitis, I needed to go to my chemo infusion center 3x a week for several weeks to get IV hydration. (It was stopped at the beginning of the pandemic.) This is better than ending up in the hospital. Ask your medical oncologist for a hydration schedule. You can always stop if you feel better. I could barely stand to ring the bell on my last radiation treatment. My husband had to hold me up. I don't think the group of friends and family in attendance quite understood how difficult it was for me to do that. I was so weak and sick. One day at a time. I hope you're feeling better soon.
  19. I do know of people who take turkey tail supplements and haven't heard anything negative. Not sure about reishi. As an EGFR patient, I know to avoid antioxidants. They can also encourage cancer cell growth.
  20. I know that people do use FenBen but others are adamantly opposed. Regarding keto diets, I was on one for most of 2019. Then I was diagnosed with Stage IIIB EGFR+ NSCLC in October of that year. That diet did nothing but mask the real cause of my weight loss. After undergoing radiation and chemo and now targeted therapy (for almost 3 years), I am NED and back to good health. The only supplements I take are what my primary doctor recommends for other conditions (like osteopenia). I'm skeptical of claims about both sugar and supplements, and in fact some supplements can interact with targeted therapy drugs.
  21. If you're going to do research online, stick with LUNGevity, GO2 Foundation, Lung Cancer Research Foundation, American Lung Association and American Cancer Society. Like Karen says, Dr. Google is a quack.
  22. I had 30 chest radiation treatments with the Varian TruBeam, along with chemo. My treatments were in a community setting, not an NCI. I don't recall whether your dad has had biomarker testing done. That would be an important piece of the diagnostic process.
  23. This is not the same thing, but I watched my 99 year old father decline for the last 5 months of his nearly 2 years under hospice care. It is hospice's job to make your dad comfortable. Morphine is the standard comfort drug, but there are other options. Toward the end, my father was unable to swallow, and in his final days a decision was made among the care home administrator, hospice nurse and social worker and me to heavily sedate him and withhold all food and water. This was a merciful way to let him go. This is a really difficult time, but I hope you can share some precious moments with your dad.
  24. I've used either melatonin or lorazepam (part of my chemo package) when I had trouble sleeping. I don't need either anymore, luckily.
  25. Hi SATo, all of your husband's reactions are normal when getting a shocking diagnosis like lung cancer. When I received my Stage IIIB diagnosis in October 2019 at age 66, I didn't think I'd make it to the end of that year. I knew nothing about this disease or LUNGevity. I wasn't a candidate for surgery because I had metastasis to lymph nodes. My main tumor was about 6 cm in my lower left lung. I started chemo and radiation almost exactly 3 years ago, and afterward I began taking a targeted therapy pill for my EGFR mutation. I've had No Evidence of Disease (NED) for a while now and am healthy again. You don't say if the biopsied tissue is also being sent for biomarker testing. That's an important part of diagnosis but can add to delay in creating a treatment plan. Treatments and management of side effects have come a long way in the last several years. I hope you'll both use this site to learn about our disease. As my primary doctor said when she diagnosed me, lung cancer isn't an automatic death sentence anymore.
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