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Judy M2

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Everything posted by Judy M2

  1. My father would have turned 100 in October. I'm glad he didn't live that long. The last 6 months have been filled with pain and suffering, despite efforts to provide comfort. My father was a WWII veteran and served in the Navy in the Pacific. One of his ships was bombed while in port and many of his shipmates died. He survived that but wouldn't talk about it for 40 years. After the war, he married my late mother and built their home, which my husband and I later bought when they retired and moved away. My father had many chronic conditions: polymyalgia (an arthritis-like condition), gout, congestive heart failure and most recently, COPD. I also believe had undiagnosed depression for many years. He was living in an independent living facility when he fell and was taken to the hospital, where he was diagnosed with COPD. A nurse practitioner diagnosed the COPD. He never saw a pulmonologist. The hospital refused to discharge him back to his independent living facility and forced us to engage hospice care. On Labor Day weekend in 2019, we had 24 hours to find a place for him where he could get 24-hour care. There were 2 choices and we hastily picked what they call a board and care home here in California. Generally his care there was very good, and their Covid response has been stellar. By December 2020, his health took a turn for the worse, and he was no longer able to feed himself. He was slowly declining and was extremely emotional and sad. The hospice provider we were using was nonresponsive (again, over the Christmas holiday), and I had to scramble to engage a new provider over New Year's weekend. We were able to stabilize his emotional state with medication. He started to have difficulty swallowing and clearing secretions from his chest and throat. In the last few months he was bedbound, on thickened Ensure and had a painful bedsore. When he had increasing fits of coughing/choking, I had to request (quite forcefully) that he be given the morphine his hospice NP prescribed. Last week, I had a summit with the hospice nurse, NP and special worker, where we agreed he would be given morphine and kept sedated 24/7, and forego nutrition. Had this protocol been followed, my father's death would have been peaceful. However, I later learned that it was not followed by the caregiving staff, even though it was clearly communicated to them. On Friday night, May 28, my father died in a very unpleasant way (I will spare the details). I am traumatized by his end and have tremendous guilt that, as his health care proxy, I was unable to give him the peaceful death he wanted. The social worker assures me that I did everything I could and the failure was not mine. As my father's caregiver of 6.5 years, I've been through all the worry, anger, frustration, anxiety and other emotions. I regret that my sister and I were powerless against the hospital who decided they would no longer treat a 97 year old. I realized the first hospice provider's limitations too late. I failed in my efforts to ensure comfort care in his final days. My advice to other caregivers is that there are going to be obstacles placed in your way at every turn. Your loved one/patient may be difficult and non-compliant, as mine was, and you can only do so much advocating for them. I wasted years being stressed and frustrated, and I believe those negative emotions played a part in activating my lung cancer (I was diagnosed one month after my father was placed into hospice care). Get the hospice provider with the best reputation in your area and who can deliver comfort medications within an hour. When the end is near, do what you can to be a constant presence to ensure that comfort protocols are being followed. I visited every day but should have been present throughout each day when morphine was administered. And take care of yourself. We need our caregivers, and I believe they have it harder than patients. Thank you for all you do.
  2. Judy M2

    Question

    If your dad is having secretions and cough, you should be using the meds he was given. Morphine will alleviate anxiety for SoB, and you've got to reduce those secretions. Using the hospice comfort care medications doesn't mean you're giving up, it means you are providing comfort, and that should be your current focus. I unfortunately have a great deal of recent experience with hospice and I think I'm going to add a post under the "Caregivers" section.
  3. Morphine is for calming anxiety in the case of shortness of breath. I would also recommend it. Hospitals have a habit of pushing patients into hospice care. Sometimes it's warranted, but in your dad's case you don't even have all the test results back yet. In the meantime, keep him as comfortable as you can.
  4. Hi Nanny, glad you posted. First let me say that I love your town. It's my favorite place in CT. My husband and I used to visit there and Mystic as much as possible when we lived in NY. Going through a new battery of tests and waiting for results will certainly be stressful. If you do need more treatment and are still EGFR+, you might be able to take a targeted therapy pill which can be very effective and well tolerated. I hope you get some quick answers from your new doctors. I have used a Caring Bridge site since my diagnosis in October 2019 to update family and friends about my health. I've found it easy to communicate my point of view, and people have been very supportive in that platform. If someone is uncomfortable dealing with their friend with cancer, they don't necessarily have to be face to face with me. Maybe this could be a resource for you. Please let us know how your tests go. We are here for you.
  5. My pulmonologist prescribed Robafen, which has codeine in it, and I used that for quite a while. Now I just use OTC Delsym when needed for a cough caused by allergies/post-nasal drip.
  6. My palliative care doctor prescribed methadone for my esophagitis pain. It worked pretty well, but she had to switch me to a Fentanyl patch when I started a targeted therapy. I recommend seeing a palliative care doctor or a pain management doctor. At the time of my pain, I also saw an integrative medicine doctor who recommended natural/herbal products and performed acupuncture. This can also help with relaxation and improving your state of mind.
  7. @KarenR, my PCP initially diagnosed lung cancer from an Xray and then a CT scan she ordered after hearing crackling in my lung. She was not involved in my treatment. I recently saw her again for an annual exam, 15 months after treatment ended. Based on my labs, she recommended certain vitamins and electrolytes, but otherwise she is very pleased with my current health. So I won't need to see her until next year, while I get PET/CT scans at my oncologist's office every 3 months.
  8. For your husband's safety, I'd recommend a bedside commode and a Rollator with a seat so he can sit when he needs to, as well as a sturdy shower chair (available on Amazon) and ideally shower grab bars. I used a Rollator and shower chair in the months after my surgery and still have them. It's important to accommodate his current limitations. I'd also encourage the use of urine bottles regardless the cleaning issue. Home health is a good resource to assess needs and provide solutions, but I'm not sure if that's available to you.
  9. I know that people tend to focus on certain technical items called out in a scan report, but your oncologist has the expertise to evaluate and interpret the results at each step of treatment. I have a general (not thoracic) oncologist, but he is very experienced. By now I have a lot of trust in him, so I rely on what he tells me rather than focusing the details of a scan report. My scan reports aren't even available until after he reviews them with me, so I already have an impression of what I'm looking at when I can access them.
  10. Hi Karen, I am one of those Stage IIIB patients who was not a candidate for surgery. I had 6x chemo, 30x radiation (to both tumor and lymph nodes) and now take a targeted therapy pill daily for my EGFR genetic mutation. My particular mutation does not respond to immunotherapy. So, as Lexie says, your oncologist will need the results of your molecular/biomarker test results in order to create a treatment plan for you. My biomarker test results took about 2 weeks after my bronchoscopy. It's hard to wait so long but necessary. The good news is that after 14 months of treatment, I have achieved the goal of No Evidence of Disease (NED).
  11. Here, back at you, lol.
  12. Thanks Lexie, I will download your recommendation!
  13. I just finished reading my oncologist's book about his experiences in life and his journey as a cancer doctor. It was a quick and friendly read. Here is an excerpt that I think captures the spirit of the book: "In truth, I've been an oncologist long enough now to know that fear, confusion and hopelessness can take over very quickly--like a few seconds after bad news. They are the trapdoor--away from healing, away from empowerment, away from peace. The trick to avoiding that trapdoor is remembering that how you are doing is correlated with what you are doing. Tiny actions lead to feeling a tiny bit better, a tiny bit closer to where you want to be. So instead of shutting down, meet one of your most basic obligations, and then another. Eat something healthy, walk when you can, take your medicine, listen to your favorite song, keep your appointments, talk with your family, call your friend, tell someone you love them, watch a funny movie or reread that book you love. Do the things you must and do the things you love--that's the oncology patient's equivalent of putting one foot in front of the other, moving away from that chasm of hopelessness a little at a time. Inching closer to peace." When my husband and I first sat in Dr. Steven Eisenberg's office, he rubbed the top of my husband's head while he told us how he wanted to (aggressively) treat my Stage IIIB adenocarcinoma. I'm not sure why he did that, but I knew then he was like no doctor I'd ever met before. He's been a great cheerleader for me throughout my treatments. I recommend this book for both patients and caregivers. Dr. E tells about his near-death experience as a teenager and the struggles he's had in his chosen profession, the people who motivated him to overcome it all, and how he has come to use music to form a strong bond with his patients. I hope just this post will help someone who is going through a rough time. I think that reading the book could help even more.
  14. It took 2 weeks for my biomarker test to come back. Biopsy was much quicker. This is when waiting is the hardest, but it's essential to first determine whether there are any targetable mutations so a proper treatment plan can be created. For now, using an inhaler and nebulizer will help alleviate the SoB.
  15. Jon Stewart is an excellent advocate for this legislation. We owe him our thanks for his untiring efforts on behalf of the 9/11 community. Like Sen. Tester says, they need to push, push, push. Thanks for posting this.
  16. CoCo, it is great that you are in therapy. In addition, there are oncology counselors who can help the entire family. Your husband's new oncologist may be able to refer you. I do agree with Bridget and Lexie about palliative care. They are experts and really listen to patients and their families. While I had a palliative care team for pain management when I needed it, they also help with quality of life. My experience has taught me to take one day at a time, like you are doing. It really takes discipline for me to compartmentalize my thoughts, but that is my coping strategy. You are doing enough just by supporting your husband, and I'm sure he appreciates everything you're doing for him. Hugs to you.
  17. Oh wow, how rough for him. I can understand the desire for a quality of life after everything he's been through. Feel free to vent here any time. I always say that illness can be hardest on caregivers. You both need support. Glad you joined us.
  18. Hi CoCoNG, we get you, and this is a good community to be a part of. You guys are a cute couple! I had major emergency abdominal surgery after undergoing radiation and chemo. That experience was, as you say, hellacious, so I completely understand your husband's situation. It took me months to recover last year. You don't say what LC treatment your husband has had. After my surgery, I started on a targeted therapy for the mutation that caused my Stage IIIB NSCLC. But all the treatments have worked and I'm doing very well today. I hope your husband is also feeling good.
  19. Daisy, loss of my voice is what led to my Stage IIIB EGFR+ NSCLC In October 2019. After 2 mis-diagnoses, it was determined that my left vocal cord was permanently paralyzed by the tumor in my left lung. I had a bulk injection of Teflon into my vocal cord in November 2019 and I have some sort of voice now. Tom has given you great advice. I can tell you that there are Stage IV survivors out there doing well thanks to targeted therapies for their particular genetic mutation, combined with precision radiation. I personally have taken a targeted therapy since March 2020 and today am NED (No Evidence of Disease). My genetic mutation was acquired and not inherited (or what they call germline).
  20. Carbo can also cause constipation, so stay on top of it and be brutal about it (Milk of Magnesia) if nothing else works. During chemo and radiation treatments, the goal was not to lose weight (but I really failed there). I was told to stay away from all raw fruit and vegetables that did not have a peel that could be removed, due to contamination concerns. Even a small amount can make you very sick because the immune system is being compromised. Other than that, I don't recall any dietary recommendations. For lifestyle, just stay away from others or wear a mask for the same immune system concerns.
  21. So much innovation these days: https://www.eurekalert.org/pub_releases/2021-05/uoz-ntm051721.php
  22. Exon 20 can be hard to treat, so this is good news. https://www.fda.gov/news-events/press-announcements/fda-approves-first-targeted-therapy-subset-non-small-cell-lung-cancer
  23. When I had esophagitis I saw an integrative medicine doctor for acupuncture who works with my oncologist. She was focusing on inflammation and my esophageal pain. Each session was very relaxing. Unfortunately, I had to stop going due to abdominal surgery and then Covid. I'd do it again though. I don't follow any particular diet, just try to avoid sugar to maintain normal blood sugar.
  24. Hi Karen, I'm echoing what Lexie said. I was diagnosed with Stage IIIB non-small cell adenocarcinoma in October 2019 with an EGFR mutation that was discovered in the biomarker (molecular) testing. I take a daily targeted therapy pill and am NED (No Evidence of Disease) today. There are many options for treatment, so hang in there while you wait for your treatment plan.
  25. Diane, I have heard of some people who had to come off Tagrisso to let liver enzymes normalize and then resume with better results. Or try a 40 mg dose instead of 80. I don't know what the optimal liver numbers your doctor would be looking for. I think chemo in the meantime isn't a bad idea. Personally I don't follow any special diet, although I try to avoid sugar to keep my A1C level in the normal range. I use monkfruit in lieu of sugar for all my home baking. And I've become a fan of Impossible and Beyond "meats" so I can indulge in burgers and sausage without guilt.
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