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Judy M2

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Everything posted by Judy M2

  1. Here is some info on KRAS lung cancer. A targeted therapy has recently been approved for the mutation KRAS G12C. https://www.lung.org/lung-health-diseases/lung-disease-lookup/lung-cancer/symptoms-diagnosis/biomarker-testing/kras You'll also want to check out the KRAS forum under the NSCLC Group/Lung Cancer Mutations. https://forums.lungevity.org/forum/60-kras/
  2. Two years ago at this time I was undergoing treatment too. It sounds like any side effects you're having are being controlled, so that's a positive. You can expect chemo to mess with your bloodwork for a while. For mouth sores, MuGard is fantastic but awfully expensive. My wonderful chemo nurse simply gave me a bottle! Take things easy and I hope you get through your treatments without any other problems. Happy Holidays to you and yours.
  3. Justin, I can't recall if you did get biomarker testing. You should definitely ask your oncologist whether targeted therapy is applicable. If it is, you'll want to start it as soon as possible.
  4. I can recommend methadone. A palliative care specialist or pain management doctor can prescribe it. I know how you feel, so sorry for you.
  5. It's reassuring when you can get quick attention. Fingers crossed.
  6. Lizzy, I started chemo and radiation 2 years ago on Dec. 3. The mass in my lower left lung was also 6 cm. Today, 2 years later, I'm grateful to be NED. So I understand everything you're going through! It might help you to create a Caring Bridge site so you can give the people you invite updates whenever you want. This way you don't have to tell your story over and over, and it may give people permission to talk about non-cancer subjects when they see you. It takes a little time to set up (gathering email addresses) but afterwards it's simple to update and maintain. In time, I hope your condition becomes one that people can see past your cancer. Today only people who I don't see regularly ask how I'm doing, and that's more a function of politeness. They and I have moved on to my pre-diagnosis life. Best of luck with treatments and I'm looking forward to the results of your biomarker testing.
  7. Ugh, esophagitis. I had a severe case of it and know how you feel. I always suggest a palliative care specialist to get that pain under control. I couldn't tolerate the usual opioids like oxycodone, so I ended up on methadone, which controlled my pain well. All the advice to eat soft foods, stay away from spicy foods, etc. was irrelevant for me because I couldn't eat or drink, and what I could tolerate changed hour by hour. I did eliminate dairy because of the acid reflux the esophagitis caused. I also took pantoprazole (prescription anti-acid) for a while. You'll want to stock up on Ensure in case eating is too difficult. If you get dehydrated, ask your medical oncologist for hydration at your infusion center. I went 3x a week. Get that pain under control quickly so it doesn't cause other complications. The good news is that the esophagitis is temporary. I had it for 5 months, but remember, I had a terrible case. I know of others who have it for only a week or so. Hope you're in that group.
  8. Hi, Lizzy and sorry you're one of us now. But your doctors saved you months of delay by being so diligent about your testing. Many of us (myself included) are misdiagnosed for months because we don't fit the at-risk criteria. As the others have said, biomarker testing is essential to getting your personalized treatment plan. It will take more time to process but the results are worth it. I was diagnosed at Stage IIIB two years ago with an EGFR mutation. I am also NED (in remission) and doing well on targeted therapy. It took some doing to get here but I'm grateful for my status. Let us know what your testing shows. There's lots to learn about this disease but keep in mind that Dr. Google isn't your friend.
  9. Great post, Lana. You are an EGFR veteran with a mindset much like my own. I hope I can "stay the course" (as Tom says) as long as you have. Best wishes for good scans in January. What targeted therapy do you take? I take Tagrisso, and it has worked well.
  10. I always recommend palliative care. And acupuncture can help. I should have engaged palliative care 6 weeks earlier than I did. I also went through rough times with chemo and radiation but have come out on top. Hope you do too, Justin.
  11. I haven't had the procedure but Tagrisso should help after the fluid has been drained. Plenty of people report that Tagrisso dried up their fluid completely. Two weeks is a short time, so give it time to work. For me, chemo and radiation resolved the fluid in my left lung. Best of luck with the procedure.
  12. Most nurses will not explain PET results. That's the oncologist's job. You need your biomarker test results. I had chemo and radiation, and with the location of your lymph nodes, esophagitis from radiation would be very likely. Keep pressing for your biomarker results.
  13. I had a rigid bronchoscopy under general anesthesia. Just had a sore throat for a couple of days afterward. It's an easy procedure.
  14. Wow, what great news. Congratulations!
  15. 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.
  16. 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.
  17. Hi Allie, my father also passed away a few weeks ago but did not experience this. All I can say is to let any guilt go. Some people seem to wait for their loved one(s) to be out of the room. I wish that had happened in my case, because my father's death was traumatic for me. In the weeks afterward, I've worked very hard to move beyond his passing for my own good. Forgive yourself for sleeping, you had no idea when his end would come. In my father's case, we thought he would die at Christmastime but he lingered for almost 6 months with a very poor quality of life. My condolences, and I hope you can find some peace within yourself.
  18. Eric, they are coming up with all kinds of personalized treatments for progression on Tagrisso. Check out LUNGevity's EGFR Resisters Lung Cancer Patients Group on FB to learn what others are doing. There are clinical trials too. Hopefully the radiation you've had will do the job.
  19. KM, MuGard is great for mouth sores but is very expensive. I was lucky that my chemo nurse just gave me a bottle. You might ask your oncologist if they have samples. FYI, my targeted therapy drug Tagrisso also can cause mouth sores (mucositis) because it goes after rapidly growing cells like hair, nails and those in the mouth and stomach lining. Earlier this week I had a recurrence of mouth sores after a busy and stressful week before. I used the leftover MuGard a couple of times and the mouth sores are gone.
  20. 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.
  21. I had all of my estate planning done in 2015, after I moved to CA. That included a power of attorney, health care advance directive, trust and will. So when I was diagnosed in 2019, I did not have any extra work to do. I have already selected a hospice provider (my palliative care team is part of the same organization) and a nursing home, should I need them. I'm not being morbid, just prepared.
  22. @Jesse L., I've never seen one of my scans either, only the radiologist's report, and I really need my oncologist to interpret all the mumbo jumbo. I usually have to wait several days, and up to a week, to get my PET scan results. The report isn't posted to the patient portal until my oncologist reviews it with me. So I have learned to be a patient patient.
  23. Exactly what @LexieCatsays! My oncologist doesn't even post the scan reports to the patient portal until he has discussed them with me first.
  24. I had a rigid bronchoscope and was put under. Had a great anesthesiologist. I asked for propofel and got it, so I had a nice nap. Just a sore throat for a couple of days afterward.
  25. Wow, Michelle what a rough time you had! I had my bronchoscopy on 10/31/19 and I met with my medical oncologist on 11/11/19 and got the tissue biopsy results, including being positive for the EGFR mutation, which my oncologist was "happy" about (he is a very expressive person). At the time I didn't really understand and had a lot of scary information to absorb. I went through 6 weeks of chemo and radiation, and about midway through, my oncologist discussed the plan for after treatments. I am now on a targeted therapy with "continued positive treatment results".
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