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Judy M2

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Everything posted by Judy M2

  1. I got the same spray numbing agent as Lexie and Jesse. My chemo nurse was very good at the "stick".
  2. Sandy, first off, good news! And I wish you well with your chemo treatments. I hear you about hair loss. It took me a year to get my hair back (after carbo/taxol), but my eyelashes continue to fall out at random times. I have to take a biotin supplement (with onc OK) for my hair and also my nails, which are splitting from Tagrisso. But as you say, I'd rather lose my hair than my life. Best of luck with this next phase.
  3. Ale, that esophagitis is enough to get anyone down. It's awful but it does get better. You'll be surprised that you feel good on chemo days because of all the drugs (and possibly hydration) they give you at each infusion. I used to stop at Wendy's on the way home from chemo as a treat until my esophagitis got too bad. Make sure you have anti-nausea meds (from the oncologist) and also OTC meds for constipation. When you get fatigued, rest. Any changes in taste are temporary. Everything will settle and you'll eventually know what to expect after each infusion. You've got this.
  4. This article was posted by a member of the LUNGevity EGFR Resisters Lung Cancer Patients Group. Not only is neratinib being tested as a targeted therapy for EGFR Exon 18 mutations but also HER and HER2 tumor mutations and for other cancers. Go science! https://www.targetedonc.com/view/neratinib-is-effective-against-egfr-exon-18-mutations-in-nsclc
  5. Judy M2


    I've never had a delivery issue before, but I'm coming up against some delay getting my Tagrisso prescription renewed. I've called both Astra Zeneca and my oncologist, and AZ said they would contact my onc. You can bet I'm going to be calling every day now.
  6. Angel, I was diagnosed with Stage IIIB EGFR+ NSCLC on October 2019. Had 30x radiation and 6x carboplatin and taxol, which ended on 1/15/20. In March 2020 I started on the targeted therapy Tagrisso. All of the treatments have worked to date, and my next scan is at the end of this month. I have minimal side effects from Tagrisso. So I agree that biomarker testing is the best way to go. I understand that targeted therapy is now standard first-line treatment for Stage IV disease with targetable mutations, along with radiation to zap any mets. If there is progression or toxicity on Tagrisso (or its
  7. Judy M2

    Brain MRI

    Fingers crossed for you, Deb!
  8. Yup, palliative care would be helpful here, both for knee pain and sleep issues. I have taken lorazepam for sleep (included in the original "package" of prescriptions from my oncologist). Best of luck with the second opinion.
  9. As someone who fought the battle of severe esophagitis, I agree with both Lexie and Tom. Palliative care is a must so that you can get proper pain management. Your radiation oncologist can only prescribe the standard opioid painkillers, which I could not tolerate. I ended up getting a lot of relief from methadone as prescribed by my palliative care doctor. (I had to change to a Fentanyl patch when I started on Tagrisso.) You'll also want a prescription for a sleep aid (I took lorazepam) if you can't sleep. Tom's advice to skip the diet foods is wise, because you need to keep your weight
  10. Could be the start of esophagitis. Definitely tell the rad onc. Liquid Tylenol may help but you could need stronger pain relief. It may get worse before it gets better. Standard advice is to stay away from crunchy/hard or spicy foods and eat soft foods like smoothies (which I personally dislike), applesauce, mashed potatoes and ice cream. Ensure or Boost Soothe are also tolerable and a good source of protein. However, your tolerances may change from minute to minute. This issue is why I recommend getting palliative care on board early on. My pain was severe, and it would take me an hour to get
  11. GramaA, they should be giving you a "chemo teach" session before your first infusion. The NP will tell you everything you need to know and will answer all of your questions. Make sure you bring a list of all meds and supplements you take. I was told to avoid all raw fruits that did not have a peel that could be removed (like berries) and all raw veggies due to potential contamination that may not wash away completely. If you don't have an appointment for that, then you might want to request one. It takes about an hour, more or less.
  12. Judy M2

    Pulmonary embolism

    @LouT, I also had sepsis so bad I almost died when I had a perforated colon last year. It was a good thing I went to the emergency department when I did. It took me months to recover.
  13. Berrypatch, so sorry to hear of your diagnosis and pneumonia. I agree with Tom, it is very early and you haven't received a stage yet or results of biomarker testing or a treatment plan. So one step at a time. Try not to plan anything until you have complete information. I know that others on this forum have been through the SSDI process and can speak to that. My cousin had breast cancer 5 years ago and also went through surgery and chemo. From what I understand, that surgery is more difficult and the chemo is stronger than what lung cancer patients go through. But your treatment plan sh
  14. Judy M2


    I am participating in the PEER/LUNGevity patient study. I don't know if this is the same as PEER Medical. My stepson looked at the study's security and thought it was fine. I did not have to share medical records. You log in every day, report your weight and then once a month answer questions about how you've been feeling, whether your finances have been affected by treatment and things like that. In exchange you get an Amazon gift card based on points you accumulate. I haven't found it to be intrusive.
  15. Judy M2

    Pulmonary embolism

    Tom, glad it's not a PE. Just FYI, if they can't get your heart rate or blood pressure under control with meds, they may suggest a pacemaker. It's very effective and the procedure is tolerable. Several of my family members have them. Good luck with the beta blockers.
  16. And Tagrisso is likewise expensive. Astra Zeneca has a financial assistance program through AZandMe, which is income-based.
  17. Ale, lean on whoever you can during this time. I'm sure your loved ones and friends will want to help. This too shall pass. I was fortunate to have a lot of support last year when I needed it. You will drive again, you'll know when you're ready.
  18. Judy M2

    Pulmonary embolism

    All I know is that PE is not something to mess with. Luckily you're already on blood thinners, but you may get switched to a different one. You should be characterizing your condition in the call to your pulmonologist as URGENT.
  19. Kathy, Lexie gives you wise advice. As she says, 2 and 9 mm are very small. I have a stable 6 mm apical nodule in my right lung that is too small for a PET scan to characterize. My oncologist is just watching it with my regular 3-month scans. But you should definitely see a pulmonologist.
  20. Yes, I'm willing to talk. I'll check my medical records in the meantime to see what I can find out.
  21. Today I watched the opening presentation of the GO2 Foundation's Lung Cancer Voices Summit, the purpose of which is to advocate to Congress for increased Federal funding for lung cancer research, as well as passage of The Women and Lung Cancer Preventative Services Act of 2021. This Act is meant to look at why lung cancer is striking more younger women and never-smokers. Regrettably, I registered too late to participate in the virtual meetings with members of Congress (or their staff). One of the keynote speakers was the wonderful Dr. Christine Lovly, who spoke at LUNGevity's 2020 Inter
  22. Yikes, no. Good thing you were sent so quickly though. Fingers crossed for you.
  23. I'm piling on with Lexie. I'd also recommend engaging a palliative care team now, so that if you do have pain, they'll be familiar with your case and can treat you quickly, rather than figuring out that aspect when you're feeling rotten. Let's see if you do actually have an EGFR mutation. Tagrisso is a 3rd generation drug that is very effective and well tolerated by many (including myself). There are other mutations that have their own targeted therapy. You need your biomarker test results. Take this one step at a time. Hang in there.
  24. Ale, I didn't have that reaction to radiation, but your doctor or NP can certainly prescribe some anti-nausea medication to alleviate it. Please let them know about this.
  25. PCW, I totally get your regret because I have it too, but for a different environmental reason. I'm a member of the 9/11 survivor community, and I although I couldn't get to my job in Lower Manhattan that fateful day, I did return to work the following week when everything reopened. I continued working in the exposure zone for more than a year. My lung cancer is presumed to have been caused by the toxic dust we all inhaled, mask-free. (I am enrolled in the 9/11 Victims Compensation Fund.) Initially, I berated myself for not changing jobs at that time and working in Midtown. But I've had
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