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Judy M2

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Posts posted by Judy M2

    Choosing a place for radiation

    in GENERAL

    Posted

    This is a rough journey for anyone who travels it, that is for sure, and I'm sorry you and your family are going through this difficult time. My lung cancer isn't curable either, and I have no idea how long I'll survive it. But the reality is that tomorrow isn't promised to anyone. I've learned to live one day at a time. 

    I don't remember if you've looked into a palliative care specialist who can help manage your dad's pain and quality of life. I couldn't tolerate the usual opioid painkillers like oxycodone and morphine, so my palliative care doctor prescribed methadone, which worked very well when I had a severe case of esophagitis from radiation. A sleep aid and anti-anxiety medication can also be prescribed (both are standard chemo comfort drugs). Palliative care is a great resource and I can't recommend it enough.

    I hope your dad's radiation treatments start soon. Waiting is so awful. 

    Stage IV NSCLC non smoker looking to speak with similar fighters of 5+ years

    in GENERAL

    Posted

    Hi Brian, I'm Stage IIIB EGFR+ but only 3 years post-diagnosis. I've had chemo and radiation before starting Tagrisso in March 2020. I've been NED for a while now. I don't follow any special diet or any alternative treatments. The supplements I take are those recommended by my primary doctor for specific conditions (like osteopenia). 

    You might get more information/answers from the EGFR Resisters Lung Cancer Patient Group on Facebook.

    I was on a ketogenic diet for most of 2019, and then I was diagnosed in October 2019 (after being misdiagnosed for 4 months). Based on this experience, I don't believe that a keto diet was helpful in preventing or delaying my lung cancer.

    My medical oncologist works directly with an integrative medicine physician. I saw her for a while when I had radiation side effects. I'd be willing to go back if I needed to. 

    Don’t want to continue

    in CHEMOTHERAPY

    Posted

    When I had esophagitis, I needed to go to my chemo infusion center 3x a week for several weeks to get IV hydration. (It was stopped at the beginning of the pandemic.) This is better than ending up in the hospital. Ask your medical oncologist for a hydration schedule. You can always stop if you feel better. 

    I could barely stand to ring the bell on my last radiation treatment. My husband had to hold me up. I don't think the group of friends and family in attendance quite understood how difficult it was for me to do that. I was so weak and sick. 

    One day at a time. I hope you're feeling better soon. 

    A new therapy for NSCLC?

    in NSCLC GROUP

    Posted

    I know that people do use FenBen but others are adamantly opposed.

    Regarding keto diets, I was on one for most of 2019. Then I was diagnosed with Stage IIIB EGFR+ NSCLC in October of that year. That diet did nothing but mask the real cause of my weight loss. After undergoing radiation and chemo and now targeted therapy (for almost 3 years), I am NED and back to good health. The only supplements I take are what my primary doctor recommends for other conditions (like osteopenia). I'm skeptical of claims about both sugar and supplements, and in fact some supplements can interact with targeted therapy drugs. 

    Feeling helpless and hopeless about my dad’s situation

    in GENERAL

    Posted

    This is not the same thing, but I watched my 99 year old father decline for the last 5 months of his nearly 2 years under hospice care. It is hospice's job to make your dad comfortable. Morphine is the standard comfort drug, but there are other options.

    Toward the end, my father was unable to swallow, and in his final days a decision was made among the care home administrator, hospice nurse and social worker and me to heavily sedate him and withhold all food and water. This was a merciful way to let him go. 

    This is a really difficult time, but I hope you can share some precious moments with your dad. 

    New Here - Husband has Lung Cancer - Not handling it

    in INTRODUCE YOURSELF!

    Posted

    Hi SATo, all of your husband's reactions are normal when getting a shocking diagnosis like lung cancer. When I received my Stage IIIB diagnosis in October 2019 at age 66, I didn't think I'd make it to the end of that year. I knew nothing about this disease or LUNGevity. 

    I wasn't a candidate for surgery because I had metastasis to lymph nodes. My main tumor was about 6 cm in my lower left lung. I started chemo and radiation almost exactly 3 years ago, and afterward I began taking a targeted therapy pill for my EGFR mutation. I've had No Evidence of Disease (NED) for a while now and am healthy again. 

    You don't say if the biopsied tissue is also being sent for biomarker testing. That's an important part of diagnosis but can add to delay in creating a treatment plan. 

    Treatments and management of side effects have come a long way in the last several years. I hope you'll both use this site to learn about our disease. As my primary doctor said when she diagnosed me, lung cancer isn't an automatic death sentence anymore. 

    Mom admitted to ER with pleural effusion now diagnosed with cancer

    in SHARE YOUR LUNG CANCER STORY

    Posted

    I just shared this with the EGFR Resisters Group on Facebook (I'm not in the Exon 20 group). A local oncologist recently presented the findings. One of the EGFR members is in this trial. In California it's available in San Diego, Irvine and Whittier. 

    https://www.targetedonc.com/view/sunvozertinib-shows-activity-and-tolerability-in-egfr-exon-20-nsclc

    Recurrent UTIs

    in MEMBER UPDATES

    Posted

    I just learned that prominent EGFR Resister Annabelle Gurwitch (who is on Tagrisso for Stage IV lung cancer) has had ongoing UTIs for 1.5 years and is switching to a new gynecologist. She may post here but she definitely posts on the Facebook group EGFR Resisters Lung Cancer Patient Group. I've asked her to let us know what her new doctor says. 

    Recurrent UTIs

    in MEMBER UPDATES

    Posted

    Lots of Tagrisso folks adhere to a BRAT diet. And I personally think that consuming dairy without a Lactase enzyme causes problems. 

    I don't think I've heard any complaints about UTIs. However, if your side effects are intolerable, ask your oncologist about reducing your dosage to 40 mg. This has to be done with a new prescription, you cannot cut the pills in half. I know of many people who've had success with the reduced dosage. Maybe you can give your system a rest and try to increase the dosage later. 

    Switching to chemotherapy from immunotherapy

    in MEMBER UPDATES

    Posted

    Rosie, there are other pain meds besides oxy and morphine. I can't tolerate either of them, so my palliative care doctor prescribed methadone first, and she switched me to a Fentanyl patch when I went on Tagrisso. I'm happy to give you my palliative care doctor's contact info, I will send it in a private message. She has privileges at the big Palomar Hospital in Escondido. 

    My husband is finding that CBD oil helps with his painful hip that needs replacement. I'll get the specifics to you also. 

    I'm not sure what oncologist you go to, but if you ever want to make a switch or need a second opinion, there are a couple of names I could give you. 

    Don’t want to continue

    in CHEMOTHERAPY

    Posted

    Like Justin, I had terrible esophagitis after radiation. I couldn't eat or drink, and I couldn't get effective pain management for a while (long story). 

    I basically lived on Ensure or Boost Soothe for a few months. I never knew what I could tolerate from minute to minute. People recommend smoothies but I can't stand them. You need a bland diet for now, and if all you can manage is ice cream, then so be it. 

    My palliative care doctor helped me so much with pain management, but they do more than that by helping manage side effects. And THC can also help minimize some side effects too. 

    When I was so sick, I was miserable and didn't think I could survive, but here I am almost 3 years later. Try to take things one day at a time, even one hour at a time. If your oncologist gave you a prescription for anti-anxiety meds, I recommend taking them. They're sort of standard for chemo patients. Hang in there. 

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