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Judy M2

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Judy M2 last won the day on February 4

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About Judy M2

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    Over 100 Posts!

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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 considered a 9/11 survivor 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. Legislation is being reintroduced to expand healthcare eligibility and create a framework for establishing a presumptive service connection for military toxic exposures. I have not read the legislation, but it sounds a lot like the 9/11 legislation whereby your disease is presumed to have been caused by exposure to those toxins. It wouldn't hurt to write to the co-sponsors with your personal story and copy your own Congresspeople. Personal stories are very effective and resonate with legislators and their staff. I hope Congress will take up the TEAM Act with no further delay. https
  2. Welcome, Justin. I am also EGFR+, diagnosed at Stage IIIB in October 2019, and on Tagrisso for 13 months as a second-line treatment. First line was carboplatin/taxol and 30x radiation. You might be interested in the private Facebook groups below. I believe some people are on the same regimen as you, but only after progression. I know that others will be interested in your experience. LUNGevity Tagrisso (osimertinib) Patients & Caregivers Group, LUNGevity EGFR Group, LUNGevity Targeted Therapies Group, and also LUNGevity EGFR Resisters Lung Cancer Patient Group (
  3. Ale, it was for me too and actually became very serious and life-threatening. This is why I'm so supportive of proper pain management and palliative care. I assure you it does eventually heal. The way I see it is I paid my cancer "dues" up front, and it sounds like you're doing the same. Makes you grateful for every day of pain-free life you get later on.
  4. Lexie and anyone else, if you have a single 6 mm nodule that is accessible and you are otherwise stable, does it make sense to ask about removing it? Or would 6 mm be too small? I do intend to ask my oncologist in the next couple of weeks when we go over my next scan. Thanks.
  5. Magic mouthwash isn't going to help with esophagitis. Ale, you need some good pain management and don't be shy about taking it. For me, methadone was the best. Esophagitis can create physical deconditioning when you can't eat or drink. Get on top and ahead of your pain, and ask for IV hydration (through your port if you've gotten it) if you find yourself getting dehydrated. Your brain will not work properly if you're dehydrated.
  6. Sandy, your first sentence is almost a direct quote from my oncologist. He says that no one should be blamed for their cancer, and he really has a lot of empathy for his patients.
  7. Shella, et. al., below is a link to a discussion of targeted therapies vs. chemo. I now understand why EGFR treatment has the side effects that many people experience. https://powerfulpatients.org/2020/09/30/targeted-lung-cancer-therapies-vs-chemotherapy-whats-the-difference/
  8. There you have it: environmental hazards. Anything that smells caustic surely is hazardous. Your medical team should know better than to put the blame on you. In my case, the caustic, smoldering remains of the World Trade Center after 9/11 persisted downtown for months while the EPA said the air was safe to breathe. It obviously was not. The first responders got sick first, and now we civilians are following in their path.
  9. Tom, yesterday someone posted about this on one of the LUNGevity FB pages but now I can't find the link. Interesting.
  10. Shella, other people on targeted therapy also suggest drinking plenty of water to minimize side effects, so you're already ahead of the game. Also, depending on your dosing instructions, some folks find that taking their drug at bedtime (versus morning) helps with fatigue. I'm able to take mine at bedtime and find that time works best for me.
  11. Shella, most Stage IV patients go straight to targeted therapy for actionable mutations and possible radiation for bone or other mets. The platinum-based chemo drugs can be rougher than the targeted therapies. Please note that side effects for every treatment vary by patient, so you can't really go by what others experience. If you find you can't tolerate the initial side effects, your doctor may pause the drug for a short period to give your body time to adjust, and then "rechallenge". This works for many people. Just be sure to report side effects to your doctor. There is a private LUNG
  12. Agree with Lexie. The infusion process is actually a boring time, so bring stuff to occupy yourself. My infusion center had individual TVs, and the recliners were comfy. For your throat, try to stay away from dairy products until it clears up. You'll do just fine.
  13. Targeted therapy drugs are a type of chemo but are not usually referred to as such. For example, the osimertinib I take isn't chemotherapy but yet it is--kind of confusing. Dabrafenib seems to be used for the BRAF mutation, so it's great you have a drug(s) for it.
  14. Good luck, Ale! Hope everything goes well.
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