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Judy M2

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Judy M2 last won the day on May 8

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    San Diego
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    Lung cancer patient/survivor
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    Originally from Rockland County, NY, worked in NYC for many years. As an office worker in Lower Manhattan, I'm a member of the 9/11 survivor community and am enrolled with the 9/11 Victims Compensation Fund and World Trade Center Health Program. Moved from NY in 2014.

    My husband and I are retired. We have 2 crazy dogs (sisters) who we adopted at 3 months old. They are now 8 but still love our walks in the neighborhood and seeing their friends.

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  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.
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