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Judy M2

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Posts posted by Judy M2

  1. Hopefully your dad will get biomarker testing when the biopsy is done. If he does have a targetable mutation (like I do), he may not need chemo at all. Targeted therapy is very tolerable and most people have mild to no side effects. So, one step at a time. I know the shock of diagnosis well, but try to be patient while the doctors figure out the right treatment plan. Chemo (carboplatin and taxol) for me was OK, I did lose my hair--but it has since grown back--and my eyelashes periodically fall out a year later! They can manage any chemo side effects very well these days.  I am Stage IIIB and was 66 when diagnosed in October 2019. I underwent 30x radiation and 6x chemo. Doing well today on Tagrisso for EGFR mutation since March 2020. 

  2. I'm a little late to this discussion, but for what it's worth, my 99 YO father, who is extremely weak, has AFib, COPD, is on oxygen 24/7 and is allergic to penicillin, NSAIDs and a host of other medications (with anaphylaxis as a reaction), received both doses of the Pfizer vaccine. The nurse who administered the vaccine left an Epi-pen in case he had a reaction, but he did OK. He is in a small residential board and care home and the entire facility and staff were required to get the vaccine. Two weeks after I get my 2nd shot next week, I will finally be able to go inside to visit him. 

  3. Kwally, you nailed it when you said your father avoided an altered mental state with organ failure. That is a difficult thing to watch your loved one go through. It scars you for life. 

    Although unwanted, cardiac arrest is almost a better death. My mother died from it 7 years ago. She was healthy and working in her food bank when she suddenly collapsed. That afternoon, we told the hospital to remove her from life support. We are comforted that she did not suffer. 

    You are a great writer, and your posts and insights are so appreciated. Thanks for being a member of this family. 

    If you'd like to get together, please message me. We could meet outdoors somewhere at your convenience and just talk if you like. (I'll be getting my 2nd vaccine this coming week.)

    All my best. 

  4. ChiMama, I agree. Sometimes my 6mn stable right apical pulmonary nodule is reported on PET/CT scans and sometimes not. I checked and there are 2 different radiologists who read my scans. For example, my scan in October 2020 showed right lung normal but the nodule was reported again this January. Hopefully my oncologist actually looks at the scans and not just the reports. 

  5. Hi Kristina, welcome. Your shock at the diagnosis is shared by all of us. I too was healthy before my diagnosis in October 2019, the same time you received your breast cancer diagnosis. I hope you are doing well with your health challenge. 

    Tagrisso is a wonder drug for the EGFR mutation. At Stage IIIB, I underwent chemo and radiation before starting on Tag in March 2020. Tag as a first-line treatment for Stage IV means fewer side effects for Jim. 

    There are some Facebook groups (below) you might want to join. The groups discuss all things Tagrisso, including side effects, which are worse for some than others. I am one of the lucky ones with no side effects. My oncologist says I'm doing "amazing", so I hope Jim gets the same result. 

    Tagrisso (osimertinib) Patients & Caregivers Group 

    LUNGevity EGFR Group 

    LUNGevity Targeted Therapies Group 

    Any questions, we are here for you. 

  6. Of course everyone supported my decision to undergo treatments! My oncologist wanted to be aggressive, and boy was it ever.  I suffered severe side effects from radiation and chemo and almost died last year, but I believe my case was extreme. I have stared death in the face and came through it stronger and unafraid. 

    Quite frankly, my decision to go through treatments was mine and no one else's. Yes, my husband of 29 years suffered too, and so did my sister. But this is MY fight. Their job was to be there for me, as I would be for them. My husband was an excellent caregiver, for which I am grateful. 

    Would I do it again? Yes, but I'd be smarter and engage palliative care at the beginning. They are experts at managing pain and other side effects. Had I done so, I could have avoided really painful and unpleasant abdominal surgery and protracted recovery from that.

    At the very least, have your boyfriend speak with a palliative care team so he can get an idea how they would treat chemo side effects. They are so nice and really listen to their patient. Good luck. 

  7. Larsie, I was diagnosed with Stage IIIB adenocarcinoma in October 2019 at age 66. When I had a bronchoscopy, the tissue that was biopsied was also sent out for biomarker testing to see if there was a targetable mutation in the cancer cells (which LexieCat mentioned). I was EGFR positive, have been on a targeted therapy drug since March 2020 and am doing very well. 

    Your daughter should ask her pulmonologist and oncologist whether biomarker testing was done and if she has a targetable mutation. Best of luck. 

  8. Kwally, I'm sorry that I missed your recent posts, especially about your father's passing. I was attending to my own father's health crisis from which I did not expect he would survive (he did but with diminished quality of life). Covid has made being there extremely difficult. 

    You've been such a great caregiver, and the posts you've written tell a story of the wonderful love between you and your father. We grieve with you and we can only hope to be supported as well as your father was. 

    Please don't have any regrets. You couldn't have done anything more for your father. I hope you can find peace in the coming weeks and months. All the best. 

  9. I got the shock of a Stage 3b diagnosis in October 2019 at age 66. My primary doctor, who delivered the diagnosis, said that lung cancer is no longer a death sentence. Of course, I did not believe her at the time. 

    I am a member of the 9/11 survivor community. I could have died on that day but happened to be in the right place at the right time. However, this disease is my "souvenir" 18 years later. 

    For treatments, I went through 30x of radiation and 6x of chemo. At the time I didn't know to engage a palliative care team, so when I developed severe, painful esophagitis from radiation, I was kind of on my own. I feel like what happened to me was extreme and a failure of my team. But over the next 8 months, I persevered and recovered. 

    I have an EGFR mutation, so I've been on a targeted therapy for 11 months now and doing "amazing" according to my oncologist. I mostly feel good and can walk my dog (wearing a KN95 mask) for our usual 45 minutes each day and have resumed my normal life, with Covid restrictions. 

    I know that someday I will get progression, and I'll deal with that if and when it happens. But for now I am grateful for any additional time I'm given. Plus the research that is happening now gives me hope for the future. My oncologist believes that hope is the best treatment out there. 

    For me, I am giving it all I've got. We are lucky to be living in a time of so many scientific breakthroughs. I'm sure our predecessors would wish they had had our options. Best of luck. 

    P. S. I have health care proxy for my father, whose health  recently declined (not due to cancer). Although he is 99 and has been under hospice care since August 2019, I recently had to sign a DNR regardless of any health condition he might have. Because he has a written advance health directive, I know I did the right thing. But it is guilt-inducing nonetheless. To have control over whether someone lives or dies is, for me, overwhelming. 

  10. @TJM, exactly my thoughts. Last year when I almost died I didn't think about myself, I was only worried about the ones I leave behind. As I told the psychologist who visited me in the rehab facility, we all die at some point and I've made peace with it.

    However, like you and the other warriors, I'm giving it all I've got first. I've gotten a second chance at life and I'm not going to waste it. 

  11. @islandgirls, my biggest regret is that I didn't know to engage palliative care at the beginning. I eventually had a great team. Like LexieCat says, they have lots of tricks up their sleeves to manage pain and other unpleasant side effects, and they really listen to their patient. It is not hospice care. You may also want to consider integrative medicine (which may include acupuncture), but they are likely not covered by insurance. 

  12. Hi @islandgirls, yes, it's a terminal illness but one that can be managed for many of us for some time with today's treatments. Lots of Stage IV folks are surviving and thriving for years. 

    I will admit that for me chemo (carboplatin and taxol) and radiation were a huge challenge, but I recovered and for 11 months now have been doing well on a targeted therapy for an EGFR mutation (I am 67 and Stage IIIB), similar to what your boyfriend's doctor is apparently planning for his HER2 mutation. Research and clinical trials are ongoing for HER2 inhibitors, so that mutation is getting lots of attention. 

    My friend's husband decided not to treat his lung cancer, but that was several years ago, before the new therapies were developed. My friend is amazed at how I'm doing today. I'm very grateful to have the options available to us these days.

    Whether or not to have treatment is a personal choice, but hopefully your boyfriend will make his decision based on today's information and not Dr. Google. 

  13. Rhine, so sorry to hear this. While dry eye seems to be a common side effect, I believe eye problems like double vision are possible but not common. I've heard of people having fatigue at the double dose but not the kind of weakness you describe. Have the doctors checked your legs for blood clots? Has anyone suggested an MRI of your lumbar spine to see if perhaps you have some new disc issues? 

    For dry eye, my optometrist suggested TheraTears. It's OTC and readily available. 

    If possible, you may want to join the closed Facebook group Tagrisso (osimertinib) Patients & Caregivers Group and pose your questions there. There are people who are on the double dose and they may have suggestions for you. 

    You can also report adverse side effects to the manufacturer Astra Zeneca at  https://us-aereporting.astrazeneca.com/adverse-events.html, or call 800-236-9933. Maybe this will help. 

    I hope you get some answers soon. We'd be interested to hear what you find out. 

  14. Hi Mary Claire, you've really been through it. I hope you were able to fully recover from Covid. 

    All of your Tagrisso side effects sound common, and some people report that they lessen somewhat with time. I've been on Tag since March 2020 and am doing well.

    I just posted the info below for another new member on Tag, hope you find it helpful. These are closed Facebook groups that are easy to join. People discuss their side effects and solutions and generally support each other.

    Tagrisso (osimertinib) Patients & Caregivers Group

    LUNGevity Targeted Therapies Group 

    LUNGevity EGFR Group

    Plus we are here to answer any questions. Welcome. 

  15. Sorry I am late responding, hope it's not too late. 

    @JessC, AZandMe is a financial support program by the manufacturer of Tagrisso. Your mother's oncologist should be able to help you apply. If she qualifies (necessary every year), Astra Zeneca would pick up the entire cost. Good luck and again sorry for missing your post. 

  16. @Curry, welcome to the EGFR family. Tagrisso is highly effective for our mutation. For some people it comes with varying side effects, others not so much.

    If you are interested, below are some closed Facebook groups that are easy to join. The members discuss all things Tagrisso. Hope you'll join. 

    Tagrisso (osimertinib) Patients & Caregivers Group

    LUNGevity EGFR Group

    LUNGevity Targeted Therapies Group

    Good luck with Tag. You should see results fairly quickly. 

  17. I have 2 unrelated cousins with breast cancer. One is 5 years in remission and the other has just had surgery. Cancer has brought us closer, and we totally understand each other's experiences, even if our treatments differed. Unfortunately, there are too many of us out there. 

    I remember that in my parents' day, the C word was never discussed. It was something to be hidden and suffered with alone. I can't imagine how difficult that was for our predecessors.

  18. Hi Terry, I'll pipe in too. I am Stage 3b and was not a candidate for surgery. I first had 30x radiation and 6x chemo (carboplatin and taxol) . When I had a bronchoscopy prior to treatments, biomarker testing was done on the tissue samples that were biopsied, and I was found to have an EGFR mutation, which meant I could benefit from a targeted therapy (this is different from immunotherapy). My oncologist initially planned to put me on Durva but reconsidered after getting the results of the biomarker testing. 

    Fast forward almost a year and I continue to have "continued positive treatment results". I am not NED but all my scans show marked improvement and a lot of "normal" and "unremarkable", and pneumonitis and radiation damage are healing. 

    There is a lot to learn about this disease, and this site is a good place to do that. There is a lot of inspiration here too. I wish you well on your journey. Don't hesitate to ask questions! 

  19. There is a closed Facebook group Tagrisso (osimertinib) Patients and Caregivers Group where people are discussing similar Tag side effects. Some folks take Tag at night to avoid the fatigue/tiredness. Itchy skin is not uncommon either. It's easy to join if you use FB. I don't have any of those side effects on Tag. Hope you get relief soon. 

  20. Here in California, when a person makes an advance directive, they choose specific decisions that their health care "proxy" (or designated decision-maker) should make on their behalf when the person is no longer capable. The questions are thought-provoking, and it really gives the proxy peace of mind knowing they are following their loved one's wishes. 

  21. Last year on Valentine's Day I almost died. Not from lung cancer, as you might expect, but from a perforated sigmoid colon and a great deal of sepsis. I was saved by emergency surgery performed by a skilled team.

    When I was recovering in the ICU, I was suffering so much that I told my sister I was prepared to die. I could see how shocked she was, but I just wanted the suffering to be over. 

    I relate this because none of us knows when our time is up. We have no guarantee of living from day to day. Lung cancer will surely shorten my life, but something else might get me first. 

    My brush with death and subsequent recovery taught me some important things. First, within my support group, no one displayed anything but optimism in front of me. I know my family, particularly my husband, were terrified for me, but they did not let me see it. Maybe this is because they are older and had all experienced loss before. In fact, my husband had just lost his sister to pancreatic cancer just a few months earlier. 

    I also learned to be brutal with myself to not engage in what-if thoughts and to live one day at a time. On New Years Eve 2019, I had bleak thoughts about my future. Today I no longer permit myself to think that way. 

    @catlady91, please reach out to a social worker or your cancer society to help you find strategies for coping. They have seen it all. Lung cancer is bad, but I can tell you that dementia, like LouT's wife has, is a vicious disease. You grieve your loved one every day as you see the person they were slip away day after day. This can go on for years and at the end, the grieving begins anew.

    Finally, I lost an uncle to suicide about 20 years ago. It devastates families. If you are considering this, please immediately call a suicide prevention hotline. They too can help you get through this crisis. I'm sure there are also cancer support groups locally. Find one and join, even if virtually. You need to do this to help your mom. 

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