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Judy M2

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Posts posted by Judy M2

  1. 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!

  2. 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. 

  3. 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. 

  4. 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. 

  5. Dona, you are getting the same exact treatment as I did. After about 2 weeks, fatigue from radiation may set in. It's temporary and should go away in time. Protein helps. I used Biafene lotion after each radiation treatment and had only a painless sunburn on my back. 

    You are very lucky that no lymph nodes are involved. My lymph nodes were right on top of my esophagus, and radiation gave me a wicked case of painful esophagitis. 

    Pay close attention to constipation and I'd recommend taking Miralax proactively. The alternative can be serious. 

    The Benadryl in the infusion might make you sleepy and you can get a nice nap in. Bring a blanket, snacks, water, a book and headphones and you'll be all set. Infusions are pretty boring. 

    You didn't say if you'd gotten a port but I highly recommend one. It can be used the same day it's placed. 

    Be prepared for some hair loss. I shaved my head when it started to fall out. I used cute headcovers for a long time. My hair took a very long time to grow back in. 

    If you have pain, consider a palliative care doctor. Mine was a lifesaver. 

    Good luck with treatments. They were effective for me even though I had a really rough time of it. 

  6. 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. 

  7. At Stage IIIB, I am NED. Since April, my PET scan reports have said "no evidence for recurrent malignancy", and all scanned areas appear normal. I don't consider myself cured but I do think that chemo and radiation (prior to targeted therapy) killed the cancer cells that were present. Radiation is very effective, just be prepared for the side effects which will hopefully be temporary. 

  8. 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.

  9. 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. 

  10. 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. 

  11. You know, during chemo my oncologist was talking about Imfinzi too. (This was before I became educated.) He may have been thinking of another patient, who knows. Maybe that's your case too. 

    Tagrisso is wildly expensive but your oncologist's office can help with an application to Astra Zeneca for financial assistance if your insurance doesn't cover it. 

  12. 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. 


    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.

  13. Michelle is correct. I am also Stage IIIB EGFR/Exon 19 deletion (also inoperable) and had chemo and radiation before starting Tagrisso in March 2020. It took until April 2021 for me to be in remission (NED). I also had a pleural effusion for quite some time. Chest radiation causes all kinds of inflammation that takes months to heal and can be hard to read on a CT scan. 

    So if you are EGFR+, Tagrisso is the right targeted therapy for you. Immunotherapy does not work on this mutation, as Michelle notes. Your biomarker test results are essential to plan for your next steps. Let us know what your oncologist says. 

  14. 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. 

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