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Judy M2

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Everything posted by Judy M2

  1. Hillham, you are doing pretty well in my opinion. You're consuming way more than I could. I never had thrush but it's a fairly common side effect. Best of luck with your remaining treatments. You will start to feel better once it's all over.
  2. The shingles vaccine is for chicken pox, not smallpox, FYI. Most of us of a certain age had chicken pox as children, and sometimes the virus reactivate when we're older. Years ago (before there was a vaccine), my mother had shingles along her jaw, and her doctor was concerned it would travel to her ear, but luckily it did not. The shingles I had were on my torso (a common place). It's super painful.
  3. Had shot #2 yesterday. My arm was sore today and I was WIPED OUT! I was supposed to host game night tonight with our friends and had to cancel. Slept a lot.
  4. Yes, I totally get it. Don't hesitate to contact palliative care. Your radiation oncologist can only prescribe oxy, which may not be enough. Get ahead of that pain or you can get dehydrated and/or deconditioned like I did.
  5. I'm getting my 2nd Shingrix shot tomorrow, so we'll see. After the first, my arm was a little sore for a day or so. But 2 months later, I get tingling up and down the injection arm that comes and goes. Very strange. I'm going to mention it to the nurse tomorrow. Having had shingles, I definitely want to avoid getting it again! BTW, Medicare does not cover the shots. Good luck!
  6. When I was so sick from treatments, my husband and my sister looked for a nursing home for me and also spoke with a hospice provider, just in case. Our wills and trust, power of attorney and advance directive have been in place since we moved to California. So we now feel like we're well prepared when the time comes for either one of us. Prepaying for arrangements is a fine idea too. Perhaps doing all this makes your mother feel that she has control over her life, and I can understand that.
  7. 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.
  8. Have you tried the private LUNGevity Facebook group KRAS Blasters or the KRAS Kickers group? I've got to think some of those members may have been in the clinical trials. Good luck with this breakthrough!
  9. Thank you for having my oncologist, Dr. Steven Eisenberg, on as the keynote speaker!
  10. Sorry to hear this. Tell both your oncologists. They can prescribe anti-nausea meds and be sure to take Miralax. Radiation will probably give you fatigue too, unfortunately. Hang in there, it does get better eventually.
  11. Great story, thanks for posting it!
  12. I also was prescribed pantoprazole and took it for several months. You do have to watch your diet. I eliminated dairy products and substituted mango sorbet and coconut ice cream, which were soothing. Obviously no crunchy, salty or spicy foods. Bland is best. But even avocados killed me! The first time I had that heart-attack level pain I thought it was a heart attack, but it was just the acid reflux. I hope both of you get relief. It may not feel possible now, but I assure you it does get better.
  13. Very sorry to hear this, Nav. I hope your dad can be made comfortable.
  14. I haven't heard of carafate and wish it had been prescribed for me when I had esophagitis. I actually had 4 pains at the time: constant esophageal pain, pain with swallowing, pain from reflux and occasional heart-attack level pain. When I was finally able to connect with palliative care, methadone worked very well, but I had to switch to a Fentanyl patch when I started Tagrisso. Esophagitis should heal at some point after radiation ends. Mine took months but I feel like I was extreme. Don't hesitate to get palliative care on board.
  15. I'm sorry about your mom, Lynn. I agree with Tom's great advice. Treatments would probably be too hard on your mom considering her overall health. Definitely work with hospice to make your mom comfortable, and use their resources to help you as your mom's caregiver. By the way, that phone call from the ENT's PA was completely unacceptable, but you already know that. I know how hard it is to go through both experiences: patient and caregiver. We are here for you if you need our support.
  16. Loss of my voice is what led to my eventual LC diagnosis (2 mis-diagnoses first). My left vocal cord was permanently paralyzed by the tumor in my left lung. I had to get a bulk Teflon injection into the paralyzed vocal cord before starting chemo and radiation. I have some sort of voice now and may have to repeat the procedure if my voice goes away again. My ENT says the injection lasts about 12-18 months, and I'm at about 18 months now.
  17. 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.
  18. Lung cancer in under-40 adults is being studied: https://go2foundation.org/blog/landmark-study-underscores-lung-cancer-differences-in-young-adults/?amp;AddInterest=1261
  19. My condolences to you and your family, Anna. Be grateful your stepdad passed peacefully. Don't hesitate to use the grief services that hospice provides. I hope the memories of your stepdad are of better times. Peace and comfort to you.
  20. This hopeful news was posted on the LUNGevity EGFR Resisters Lung Cancer Patients Group FB page: https://www.prnewswire.com/news-releases/lung-cancer-research-foundation-and-egfr-resisters-announce-partnership-301305473.html
  21. In this study, a patient had progession on first-line osimertinib (Tagrisso), had chemo, re-challenged osimertinib, had more progression and more chemo and again re-challenged osimertinib with good results. https://www.wjgnet.com/2307-8960/full/v9/i11/2627.htm
  22. Here's the thing, Tom. Nav's dad is currently under hospice care. I'm not sure the hospital will treat him at this time. Hospice would direct his care.
  23. Call the hospice nurse or NP with this question. Ask for a visit even if it's not scheduled. Continue supplemental oxygen as prescribed. Lean on hospice while they are providing services.
  24. Judy M2


    Understood. What I'm saying is to use the comfort medications for the time being. Even if your dad has currently engaged hospice, please know that he can terminate their services at any time and undergo treatment, if that is his wish and his (non-hospital) oncologist's recommendation. But the hospice nurse should be called to visit your dad if his symptoms are causing difficulties. Use their services while you wait. You need a consultation with an oncologist and pulmonologist who can review your dad's test results and discuss recommendations. Ask the hospital oncologist why he's recommending hospice without getting test results and second opinion back. Note that you can't receive both hospice care and treatment, it's one or the other. I had a pulmonologist first, who performed a bronchoscopy to get tissue for a biopsy and biomarker testing. After those results came back (in about 2 weeks), I then saw a medical oncologist and a radiation oncologist to develop my treatment plan. From diagnosis to start of treatments was about 5/6 weeks. I didn't have the symptoms your dad has, only SoB, for which I was prescribed an albutirol inhaler, and a dry cough, for which I was prescribed Robafen. So there is a built-in delay while test results are processed and reviewed, and the wait is terribly hard.
  25. Thanks for your advice, @Rower Michelle, and I'm sorry for your experience as well. The hospice social worker told me that there is a bereavement program available to family members for a year. I will call them if need be.
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