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Judy M2

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Everything posted by Judy M2

  1. I remember the old days (1970s) commuting to NYC in buses with no AC in the summer. Windows open and traffic would stop dead in the Lincoln Tunnel. In those days, gasoline still contained lead. Add post-9/11 exposure, and I don't wonder why I got lung cancer. If you're in the NY metro area, be very careful of the wildfire smoke coming your way from the West. That stuff is toxic too.
  2. And you should read the report to be sure your doctor doesn't miss anything. Ask questions if you don't understand something.
  3. You should definitely ask your primary physician or a pulmonologist for a chest CT scan. It is not expensive if insurance won't cover, around $125 or so. At a minimum, a chest Xray. Don't take no for an answer. I was mis-diagnosed twice (allergies and acid reflux) before being diagnosed in October 2019 (no family history). Persistence is the name of our game.
  4. I know that LUNGevity and GO2 Foundation have clinical trial navigators and most likely are up to date on the EGFR clinical trials available at the Dana-Farber Chen-Huang Center for EGFR Mutant Lung Cancers, but I think it's worth posting: https://www.dana-farber.org/chen-huang-center-for-egfr-mutant-lung-cancers/clinical-trials/
  5. I've had CT scans with and without contrast. Never had a reaction to the dye. If you think you're allergic to it, I don't think they have a choice but to avoid the contrast. I think a PET/CT scan is better for imaging the 1.8 cm nodule, but it is possible the PET won't show SUV/uptake, which could be considered an inconclusive result. In that case, your doctors would just watch the nodule by regular scans.
  6. Having a good relationship with your oncologist is important because they'll be your care team for a long time, hopefully. My oncologist is kooky but he does everything he can for his patients and expresses his love for all of us on a regular basis. That attitude really does transfer from him to us. I also recommend a port for infusions. It's a simple enough procedure, and the port can be used immediately after placement. Best of luck with Keytruda.
  7. Please ask for a liquid (blood) biopsy. It's less invasive than a tissue biopsy and the results come back in days rather than weeks for genetic/biomarker testing. If there is sufficient ctDNA (circulating tumor DNA), and the liquid biopsy shows a genetic mutation, you could be started on a targeted therapy drug without the need for a tissue biopsy or chemo. However, if there is no identifiable ctDNA, then a tissue biopsy would be necessary for a diagnosis. On Saturday I listened to a Targeted Therapies Patient Forum by Global Resource for Advancing Cancer Education (cancerGRACE.org), and there was consensus among the presenting doctors that liquid biopsy is their preferred first diagnostic tool, particularly if a patient has a high symptom burden. And a little off topic, but the future of liquid biopsy looks like when testing becomes even more sophisticated, other bodily fluids (such as urine and saliva) and even breath could be used. We're not there yet though. I agree that a second opinion would be beneficial.
  8. As lung cancer strikes more and more healthy younger people, the article below got me thinking. I've always thought that environmental factors are the culprit, and the urgent call for research in the article is well-founded. https://www.researchgate.net/publication/311844520_Carbon_dioxide_toxicity_and_climate_change_a_major_unapprehended_risk_for_human_health
  9. @hillham, glad you're feeling better! The side effects of entrectinib do look daunting, but I assume you'll get an EKG and echocardiogram before starting on it. I hope you find the TKI tolerable and it does the job for you. You may want to post your experiences under the NSCLC Group/Lung Cancer Mutations/ROS1 heading here so it's easy for others to find. Fingers crossed for you.
  10. Dona, you're in the twilight zone right now, and waiting can be excruciating. So let's take it one step at a time. Insomnia and anxiety are natural reactions to your shocking diagnosis. Your mind is going to race with all these thoughts. I was like that too for a while. You'll need to get a biopsy to determine what kind of cancer this may be and also whether a genetic mutation is the cause. This genetic/biomarker testing is essential but can take weeks to get results. I assume you'll be meeting with a pulmonologist soon too. The oncologist can prescribe something for insomnia/anxiety, so don't hesitate to ask. I've found lorazepam to be helpful for both. While you wait for all your test results, you may want to address those open items that are bothering you. It will give you something else to focus on and will be one less thing to worry about when you start treatment. Especially make an advance directive/health care proxy if you don't already have one. Every medical institution will ask for a copy. It's just good planning that everyone, even healthy people, should do. When I was diagnosed in October 2019, my primary physician told me that lung cancer isn't a death sentence anymore. Of course, I didn't believe her. But you know what, for me she was right. Today I am NED (No Evidence of Disease) and doing well, with my next regular PET scan coming up at the end of the month. All of us have been where you are today. Once you get your treatment plan, you'll be able to start moving forward.
  11. I think it was a combination of location (lower left lung) plus lymph node involvement.
  12. Pam, your brother should also get biomarker testing to determine if there is a gene mutation causing his NSCLC. My pulmonologist performed a bronchoscopy for biopsy and biomarker testing. These days, some mutations are treated with a targeted drug, even for early stage cancer. A chemo schedule depends on the diagnosis. For my Stage IIIB NSCLC, I had 6 infusions of carboplatin and taxol over the course of 6 weeks (one infusion per week), coinciding with 30x radiation over the same period. Unlike Tom, I was not a candidate for surgery. After that, I started a daily targeted therapy pill for my EGFR mutation in March 2020 and will stay on that drug indefinitely. One year later, I was NED (No Evidence of Disease), and my next PET scan is at the end of this month. I believe that all of the treatments have contributed to my survival.
  13. @BrianK, I personally do not believe you can starve cancer by following a high protein/low carb diet. I was on a keto diet for most of 2019, and while I lost weight, I was diagnosed with Stage 3b NSCLC in October of that year. But I do know people who follow different types of diets. Do whatever makes you comfortable.
  14. Paul, there is a lot of discussion about off-label or repurposed drugs. Some oncologists are open to them, some are not. Examples in the EGFR world are aspirin, atorvastatin (cholesterol), metformin (diabetes) and others. I asked my oncologist what he thought but since I'm NED he doesn't want to make any changes. It certainly doesn't hurt to explore these options. Glad you're looking for an integrative medicine physician.
  15. Judy M2

    CBC results

    I agree with @Rower Michelle, my blood work has been all over the place since I started treatments. Low RBC and WBC at varying times, and still on the low end of normal. And my oncologist does test for tumor markers (CEA) every 3 months. In April, my CEA level was in the normal range at 1.8. Before treatments started, it was 120. So when I do peek at lab results on the patient portal, I can tell from my CEA level how my PET scan results will be.
  16. Rick, I don't exactly remember when the nodule was first mentioned, but I think it was found after chemo and radiation were completed. It wasn't picked up on my initial CT scan when I was diagnosed in October 2019. It's probably been a year now that it's being monitored. My next PET scan is at the end of this month. I really see Michelle's point about radiologists needing to see more of us on targeted therapy. I hadn't thought about it before but it makes sense. Even some oncologists don't have much experience with targeted therapies yet.
  17. I also have a 6 mm nodule in my upper right lung but I'm considered NED. After enduring chemo and radiation and now on an EGFR targeted therapy (Tagrisso), I have to believe that all of the treatments have been effective. I don't worry about this nodule but my oncologist does watch it for changes. It is too small to be characterized on a PET scan (every 3 months).
  18. Hillham, you are doing pretty well in my opinion. You're consuming way more than I could. I never had thrush but it's a fairly common side effect. Best of luck with your remaining treatments. You will start to feel better once it's all over.
  19. The shingles vaccine is for chicken pox, not smallpox, FYI. Most of us of a certain age had chicken pox as children, and sometimes the virus reactivate when we're older. Years ago (before there was a vaccine), my mother had shingles along her jaw, and her doctor was concerned it would travel to her ear, but luckily it did not. The shingles I had were on my torso (a common place). It's super painful.
  20. Had shot #2 yesterday. My arm was sore today and I was WIPED OUT! I was supposed to host game night tonight with our friends and had to cancel. Slept a lot.
  21. Yes, I totally get it. Don't hesitate to contact palliative care. Your radiation oncologist can only prescribe oxy, which may not be enough. Get ahead of that pain or you can get dehydrated and/or deconditioned like I did.
  22. I'm getting my 2nd Shingrix shot tomorrow, so we'll see. After the first, my arm was a little sore for a day or so. But 2 months later, I get tingling up and down the injection arm that comes and goes. Very strange. I'm going to mention it to the nurse tomorrow. Having had shingles, I definitely want to avoid getting it again! BTW, Medicare does not cover the shots. Good luck!
  23. When I was so sick from treatments, my husband and my sister looked for a nursing home for me and also spoke with a hospice provider, just in case. Our wills and trust, power of attorney and advance directive have been in place since we moved to California. So we now feel like we're well prepared when the time comes for either one of us. Prepaying for arrangements is a fine idea too. Perhaps doing all this makes your mother feel that she has control over her life, and I can understand that.
  24. Hi Allie, my father also passed away a few weeks ago but did not experience this. All I can say is to let any guilt go. Some people seem to wait for their loved one(s) to be out of the room. I wish that had happened in my case, because my father's death was traumatic for me. In the weeks afterward, I've worked very hard to move beyond his passing for my own good. Forgive yourself for sleeping, you had no idea when his end would come. In my father's case, we thought he would die at Christmastime but he lingered for almost 6 months with a very poor quality of life. My condolences, and I hope you can find some peace within yourself.
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