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Judy M2

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Everything posted by Judy M2

  1. Judy M2

    Seriously?

    Tom, congrats on the brain scan! Yeah, don't wait, just assume it's 2020. Hope you all stay well.
  2. Judy M2

    Nuelasta

    The things you learn on this crazy journey: the stomach area has fewer nerve endings and injections there aren't so painful. While I was in a rehab facility after my abdominal surgery, I had daily injections of a blood thinner in my stomach because I wasn't mobile enough and they wanted to prevent blood clots.
  3. That bile is likely stomach acid. If you can tolerate nausea, then forgo the meds. I'd rather do anything than have nausea!
  4. Thanks, we only had some smoke from the Valley Fire around Labor Day. Fingers crossed that our nice cool weather continues for a while. Nice to meet you too, Zara!
  5. Originally native to the NYC metro area but moved to San Diego, CA 6 years ago to escape the weather and be closer to my stepson. Love it here!
  6. Aren't yoga/stretch pants the pandemic wardrobe anyway? I'm not sure we'll ever go back to our old ways. 😉
  7. MSDHS, I'm so sorry for your daughter-in-law's situation. She's been through the wringer. I'm sure her experience has been hard on the whole family. There are already targeted therapies for certain genetic mutations. I am on Tagrisso for my EGFR mutation. Is her clinical trial for another less common mutation? Lung cancer is scary but has come a long way in the last few years. There are Stage IV survivors here, so there is always reason for hope. I'm one year into my Stage IIIB diagnosis and treatments. How to talk to your daughter-in-law? Listen and be there for her. All of her feelings are valid, and so are yours. If she wants to discuss her mortality, that's OK. I know I frightened my sister when I was very sick and recovering from emergency abdominal surgery (due to treatment side effects). I honestly didn't think I would survive and told her I was at peace if I couldn't. But your daughter-in-law has her young children to consider and she may want to express her wishes for their future care. That type of discussion should take place (and probably already has) whether or not she is ill. Having said all that, try to be hopeful. The science is rapidly changing and more and more of us are living with advanced stage lung cancer. Your daughter-in-law is welcome to join us and see what that looks like. I wish you all the best.
  8. Good luck, Patrick. Hoping for a good outcome for you.
  9. Zara, first of all, I'm glad you ditched that pulmonologist and found a cancer center team. I have never been told by my doctors how long I have to live. My oncologist is a firm believer in hope. But as a practical matter, it's always a good idea to have your affairs in order. Believe me, I know how hard it is to go through treatments. I was very sick and too weak to drive. Rely on your friends, I'm sure they are happy to help. Even if you think you're being a burden, it will involve them in your fight to live. The American Cancer Society also has resources for cancer patients needing help. You will eventually feel better. It took me several months, and I've now pretty much resumed my pre-treatment life. Yes, I have occasional off days but in general I feel good. Please be sure to tell your chemo nurse about all your symptoms. They've seen it all and can give you suggestions. Miralax works well for constipation. Radiation will make you fatigued so just rest and regain your strength. Be sure to stay hydrated. A lot has changed since 2008 when your husband was stricken. If you've had biomarker testing, you may benefit from immunotherapy or a targeted treatment (which I am on). It's keeping my adenocarcinoma stable one year after my diagnosis of advanced lung cancer. You're in the darkest of times but there are better days ahead. Hang in there, you'll get through.
  10. Hi Citron, so sorry to hear of your brother's diagnosis. I know the natural impulse is to be of help. In my case, I wasn't in any condition to have anyone visit me when I went through treatments in late 2019 and early 2020 (pre-Covid). Except for appointments for treatments and hydration, I was mostly bedridden due to pain and fatigue. Thankfully my husband was a good caregiver. You may want to suggest that his family set up a Caring Bridge site so they can post updates on your brother's journey. This way they won't have to tell the same story over and over. I've found it particularly helpful because it was difficult for me to talk due to vocal cord paralysis. You are already a caregiver with lots of responsibilities. It wouldn't do any of you any good if you traveled during this dangerous stage of Covid. In fact, even though he lives 5 miles away, I haven't seen my 99 YO father for a year now because we are both high risk. It's best to support your brother virtually for the time being. Many of us here never had experience with cancer either but we had to become "experts" pretty quickly. There are Stage IV survivors on this forum. The science has changed so much in the last few years and continues to move quickly. I wish your brother the best and thank him for his service.
  11. I watched it the other day. It was very good. Thanks!
  12. Hi SerpilC, I think you'd want to ask your oncologist and OB/GYN about this, and also Astra Zeneca. I'm on Tagrisso too but am 67. The prescribing info advises against getting pregnant but says nothing about egg freezing. I hope you get the answers you need.
  13. Me too. I'm done with 2020. My healthy husband just sustained some sort of back injury that is sidelining him so now I become the caregiver! Luckily I'm feeling good. Let's move on to better days
  14. Hi Mariella, I'm sorry about your mom's diagnosis and apparent progression. I am also Stage IIIB at age 67 (diagnosed Oct. 2019). My oncologist had originally considered me for Imfinzi after chemo (6 rounds) and radiation (30x) but is instead treating me with a targeted therapy for my EGFR mutation. Right now I'm stable. Please be sure to follow up on the biomarker question, at least for your own information. If your mom does get radiation, it could add to her fatigue but may decrease her SoB. The side effects can creep up on you so just be aware. There are Stage IV survivors on this forum. Take things one day at a time. You're still processing a difficult life change. Your mom is fortunate to have you for support. My own otherwise healthy mother died suddenly of cardiac arrest at age 85, so there was no warning for us. This site has so much useful and current information for patients and caregivers. It has really helped me get through my own journey. Thinking of you and your mom and hoping she gets a new path forward. Please keep us posted.
  15. Palliative care doctors and nurses usually come to the patient, but in Covid days, they're doing more telehealth video and phone calls.
  16. The cost of a chest CT scan is only a couple hundred dollars. I had one in January 2019 looking for coronary artery calcification. That's when my left lung mass was reported but my PCP's office somehow missed the remark. I wasn't diagnosed until October 2019. In addition to all of the screening above, I encourage anyone who was exposed to 9/11 dust to join the World Trade Center Health Program and get annual free screenings. If I had known about this and followed through, my NSCLC could have been found in an early stage.
  17. Judy M2

    Question

    I haven't needed to switch because I'm happy with my coverage. But as Lexie notes, I'm free to go anywhere else if I'm not satisfied with my current doctors. When I became eligible for Medicare and selected my Medicare supplement and RX plans, I based my own decision on my experience managing my 99 year old father's health care. He's had numerous chronic health conditions and numerous hospitalizations over the years. I was okay with his supplement plan but had to change his RX plan due to high co-pays or drug tier designations. If you do call and compare plans, be sure to list every prescription drug you take and ask them what tier each drug is in and what your co-pay would be. Be forewarned that RX plans can change tiers mid-year without any notice to you. I've had that happen and was not happy but there wasn't much I could do. Good luck.
  18. Hi Monstermunch, I was diagnosed a year ago with Stage IIIB NSCLC with an EGFR mutation. Surgery wasn't an option for me. Has the tumor tissue undergone genetic or biomarker testing? That's the first place to start before a medical oncologist can create a treatment plan. I had chemo and radiation and am now on a targeted therapy (a once-a-day pill). I've never heard of progesterone as a treatment. The best place for lung cancer research is on this site, it's very up to date. In the last few years, immunotherapies and targeted therapies have been added as treatment options and they can be very effective, depending on the type of cancer and mutation. Definitely seek out an oncology team who are up to date on current treatments. There's a lot to learn about this disease and usually you have to do it quickly. Please let us know if you get more information.
  19. Steve, thanks for the update on your wife. You may want to mention your wife's skin issues (and possibly text a photo) to the hospice nurse. Their pharmacy should be able to deliver something for it, possibly even a diaper rash cream. At this point, her skin is very delicate, so be extra gentle. Also, they make special cushions for pressure wounds (bed sores) that you can order from Amazon. I ordered one for my 99-year old father and can get you a link if you need it. Rely as much as you need to on the hospice provider. You need lots of their support right now and that's their mission. I hope your wife is comfortable when she is awake and peaceful when she is sleeping. Take care.
  20. Lil, I'm so sorry you received your diagnosis and on your birthday no less. For your shortness of breath, you may want to ask your pulmonologist for a prescription inhaler. Before I had treatments, I used mine a few times a day. (Haven't needed it for many months now.) It works quickly to alleviate the SOB. Like Michelle, I was misdiagnosed for several months until last October, when I was diagnosed at Stage IIIB. I had chemo and radiation and am now on the targeted therapy Tagrisso for my particular genetic mutation. This is a good community with some long-term survivors. Glad you found it early on.
  21. That's great news. I follow lungcancer.net and G02 Foundation besides this one. Both of those are good sites. I have occasional unexplained fatigue that can last a day or two. Tom, you make me wonder if that is still a side effect of radiation treatments that ended in January. If so, I can deal with it. Luckily the nausea went away a few months ago. Hopefully with time your annoying symptoms will fade too. But bowel issues can be life-threatening, so if you have severe abdominal pain at any time, don't waste any time in getting to the ER (speaking from experience). I think that mine were caused by chemo or dexamethasone or both. In any event, I now avoid steroids, even when I had shingles in June (that was fun too).
  22. I know that Tagrisso can cause cardiac complications. And cancer treatments can have all kinds of serious side effects. Hopefully the doctors can figure out the cause of your mother's stroke. I'm 67 and I don't think your mother is old! Glad her scans have been looking good. Hope she recovers well from the stroke.
  23. Sorry your mom is going through so much. The advice above is excellent. I'd also add that your mom should have a health care proxy, living will and if possible power of attorney so someone can handle the house sale if she is incapable. The health care proxy and living will are a good way to determine your mom's wishes. I also suggest that your mom broadly authorize her doctors to communicate with you. To engage hospice you need a medical diagnosis that your mom has 6 months or less of life. You're not there yet. I know it's hard to endure the waiting and worrying. Hang in there.
  24. In connection with my initial work-up with the World Trade Center Health Program, I had a chest Xray on Monday. It shows I have a "retracted left hilum". They thought it was due to surgery, but I've never had chest surgery. I haven't been able to find much on Dr. Google using the terms they gave me. Have any of you lung experts heard of this? Had my 3-month PET scan today and will mention this to my oncologist when we speak next week. In the meantime, appreciate any info on this condition. Thanks! UPDATE 11/9: I had a telehealth call with my pulmonologist today about my recent persistent cough. Asked him about the retracted left hilum. He wasn't concerned and said that sometimes this happens with lung cancer. And for my cough, try Flonase for a couple of weeks and see if it helps. If not, he can prescribe an inhaled steroid. But both he and my oncologist said the cough is not caused by cancer (yay!).
  25. Anna Marie, welcome to this forum and sorry you are part of the "club". I was also diagnosed last fall, with Stage IIIB NSCLC (EGFR mutation-Exon 19 deletion). I had 30 radiation sessions, 6 chemo infusions and have been on Tagrisso (targeted therapy) since March with good results. I was not a candidate for surgery. There are a number of Stage IV survivors on this site. These days our doctors have more options than ever before, so if one treatment isn't effective or causes side effects, there are others than can be used. Having said all that, the fear is real, especially when you're not feeling well. You may want to visit the Immunotherapy section of this site where you may get some useful information from others who are on Imfinzi. They may have had experiences similar to yours. I hope you find it helpful.
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