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Judy M2

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Everything posted by Judy M2

  1. I have heard Dr. Marmarelis speak and also viewed her Twitter feed. She is deserving of this award!
  2. Someone just posted this on FB and it is so interesting. I didn't know there were 70 different EGFR mutations. This must be why some people do so well on current targeted therapies and others don't. https://www.mdanderson.org/newsroom/classifying-egfr-mutations-by-structure-and-function.h00-159464001.html
  3. Had my booster shot on Tuesday. Yesterday I was a little tired in the morning. That's it. My arm didn't even hurt like it did from the flu shot. I feel more confident now and am resuming our regular card parties with a few of our vaxxed friends.
  4. I have a 5/6 mm stable nodule that my oncologist just watches. It never changed after all the treatments, so I assume it's non-cancerous. Good for both of you that you went for the CT scans. If I had done that, I bet my LC could have been caught earlier than Stage 3b. And it's great that you survived your bout with Covid!
  5. Immunotherapy (Durva) would depend on the biomarker found. For example, the EGFR mutation doesn't respond to immunotherapy (and it can cause progression). During treatments, I would stay away from any supplements unless approved by both your oncologist and alternative medicine physician. Mine worked directly with my oncologist and was also an acupuncturist. I remember taking botswalia and high doses of Vitamin D for inflammation (and esophagitis) caused by radiation. I had 6x chemo (carboplatin/taxol) and 30x radiation, both of which really kicked my butt. Like Tom Galli, I was so weak I could barely ring the bell at the end of radiation treatments. But I survived, am now on targeted therapy and NED since April. Biomarker testing is essential to find the right treatment plan. Hope you get those results soon.
  6. Judy M2

    Flu shot

    Got the flu shot 2 weeks ago and Moderna booster today. My arm started to feel sore a few hours after the flu shot but I feel nothing with this Covid shot. I slept a lot the day after the second Shingrix shot and was so tired I couldn't go to a party (!). The most unusual side effect was tingling up and down my arm for weeks afterward. It eventually went away. Believe me, it's way better than shingles.
  7. I had a rigid bronchoscopy under general anesthesia. Just had a sore throat for a couple of days afterward. It's an easy procedure.
  8. If you aren't happy and now have an adversarial relationship with your current provider, I'd consult with a couple of other options now while you have the luxury of time. Good luck.
  9. Methadone worked very well for my painful radiation-induced esophagitis. I had tried all the other opioids, including morphine, but they made me so nauseous. One I went on Tagrisso, I had to switch to a Fentanyl patch, which worked almost as well. For cough, my pulmonologist prescribed Robafen. For sleep, perhaps a prescription sleep aid might help. I use lorazepam when I need it, plus 10 mg melatonin every night. I also got some relief from acupuncture. Hope he gets relief soon.
  10. Wow, what great news. Congratulations!
  11. Tom Galli and I had about the same wait and the same first-line treatment (chemo/radiation). During that month of waiting in 2019, I went through a bunch of procedures: got a port, had a bulk Teflon injection into my paralyzed left vocal cord, got my radiation tattoos and had lots of dental work done prior to chemo. So I was busy while I waited and worried. These days there is so much sophisticated (and necessary) testing to be done that it takes time.
  12. I will not set foot in a Target or Walmart right now for that reason. Costco was actually pretty good and our local Sprouts is back to 99% masks. I trust no one.
  13. I don't blame you. That's a long time to live with uncertainty. Do you think they might try a liquid (blood) biopsy?
  14. Lexie, when I went to Walgreens for my flu shot (they are my Rx plan), they told me I could get both shots together but Walgreens only had Pfizer and I need Moderna (at CVS).
  15. Judy M2

    Question

    Dysphagia is fairly common in the elderly. Liquids can be thickened to slow down them down so the nerves can get ready to swallow properly. I agree that swallowing/speech therapy is a good idea.
  16. I've scheduled my booster for 9/14 (had my flu shot 2 weeks ago). Even though I'm NED, I understand that those of us on TKIs are considered immunocompromised. I think it's a guessing game at this point. But I'd like to do more than stay home so I'll be more comfortable with the booster. Another concern in my area is unhealthy air quality from the fires in Northern California. When I take my morning walks, the AQI is in the range of unhealthy for sensitive groups. The other day I forgot to check the AirNow app and went out without a good mask. I had shortness of breath all day. I just ordered a bunch of new U.S.-made and NIOSH-certified N95s from projectn95.org (a nonprofit group) for both Covid and wildfire smoke protection.
  17. Rikke, sorry you have to join us, but you are in the right place for support and information. Your medical team is taking the right approach although it is hard to wait for all the information to come in. My 2-year "cancerversary" is coming up next month, and back then I'd never have expected to be in remission (NED) as I am now. It's good to have a positive outlook. Hang in there and let us know when you get your treatment plan.
  18. Through LUNGevity, Cure Magazine reached out to me last week for an interview about 9/11 and lung cancer. As a member of the 9/11 survivor community, I've always done my best to avoid each anniversary but this year I am facing 20 years head on. I'm posting this in LC Survivors because I am a survivor twice over. The link to the Cure article is below. They also interviewed Dr. Michael Crane, a medical director of the World Trade Center Health Program Clinical Center at Mt. Sinai Hospital in NYC. The written article weaves our interviews together, but within the article there are links to our separate interviews via podcast. https://www.curetoday.com/view/-the-clock-has-not-stopped-running-on-9-11-related-cancer-incidence-20-years-later I do caution you that any discussion of 9/11 can be upsetting for some. It still is for me, and I can't read many articles being written on this anniversary. So I will understand if you'd prefer not to click through.
  19. I had the same chemo/radiation treatments before starting targeted therapy. Chest radiation can cause pneumonitis, which can exacerbate your dad's existing lung conditions. I would question the radiation oncologist about that possibility. In addition to immunotherapy, targeted therapy is also a potential treatment if the Guardant testing reveals a targetable gene mutation.
  20. At Stage IIIB, I wasn't a candidate for surgery and had chemo and radiation first, then started on targeted therapy for my EGFR mutation. Not gonna lie, chemo and radiation were rough, and I probably could have just gone straight to targeted therapy. But I have no evidence of disease today and I attribute that to all of the treatments. I agree with Lexie, press for biomarker testing. These days targeted therapy can begin after surgery.
  21. I've seen presentations where the oncologists' preference is to forgo the tissue biopsy if a liquid biopsy is conclusive (some are not). So with an EGFR mutation, Tagrisso is the right targeted therapy drug. Side effects may be bothersome in the beginning but usually become more manageable. You may want to join the LUNGevity Tagrisso (osimertinib) Patients & Caregivers Group on Facebook, where we share experiences and tips. Best of luck to your mother.
  22. Like Lisa, I feel like having my port removed would be a jinx, so I go in for flushes every 8 weeks. I actually forgot all about port maintenance last year but my port still works fine. Another reason I want to keep my port is I'm allergic to the adhesive on Steri-Strips and I don't want to get those itchy blisters again.
  23. I had cancerous lymph nodes but no pain in my chest at all. If the anxiety becomes overwhelming, ask your doctor for a prescription to help you cope. Hang in there. Believe it or not, it is possible to live with lung cancer and be happy.
  24. I was actually diagnosed with lung cancer in October 2019 based on a CT scan. At the time, my PCP told me it's not a death sentence anymore. It wasn't until after a bronchoscopy that the biopsy indicated adenocarcinoma and biomarker testing showed an EGFR mutation. I was staged at IIIB. So I understand getting that shock of a diagnosis, but try not to panic if you can. Stay away from Dr. Google. I'm on a targeted therapy (a pill) and have been NED (No Evidence of Disease) since April. Please let us know what your testing reveals.
  25. Judy M2

    Concerts

    With the protocols they have in place, I'd be more comfortable too. If all businesses did that, I'd be inclined to go places like restaurants. Everywhere we go is a calculation of risk these days. Just wear a good mask and enjoy!
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