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Judy M2

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Everything posted by Judy M2

  1. Hi Diane, glad you have posted. I didn't find this site until well after chemo and radiation and certainly wish I had known about it earlier. I assume you've started Tagrisso (or another TKI) and maybe had some radiation. My mutation is EGFR Exon 19 and I've been on Tagrisso since March 2020 and am healthy again. I hope your side effects aren't too bad. There are a few private Facebook LUNGevity groups that you might be interested in. I have learned so much from these groups, but just know that it can sometimes be difficult to read about progression, which can inevitably happen. Tagrisso (osimertinib) Patients & Caregivers Group EGFR Resisters Lung Cancer Patient Group LUNGevity Targeted Therapies Group (this includes first and second generation TKI drugs as well as Tagrisso) LUNGevity EGFR Group Any questions, ask away on any of these forums.
  2. Jen, welcome to group. I'm sorry for your diagnosis and echo everything Lexie said. There is a lot of lung cancer research going on, even with the current level of Federal funding. Avastin is being studied in clinical trials along with the established TKI osimertinib for EGFR mutant lung cancer (my mutation). I haven't yet heard how that trial is going and will post when I do. Disregard the statistics, there have been amazing breakthroughs in the last 5 years alone. For chemo, get a port as Lexie suggested. You may also want to consult with a palliative care doctor so you are prepared for any side effects. Wish I had done that first. I had 6x carbo and taxol and did lose my hair, but it has slowly grown back--very curly. I'm sure you'll be getting a session of chemo ed where they will go through what to expect. My sister also lives in Colorado Springs, but I haven't been there in almost 6 years. It was hard enough for me to breathe at the altitude before my diagnosis!
  3. Judy M2

    Hello

    @hillham, you will have some low days, it can't be helped. Just ride that wave and enjoy the good days when you get them. Soon you'll have more good than bad days.
  4. Judy M2

    Hello

    Hi Delia, at 67 I'm close in age to you. I was also diagnosed at Stage IIIB in October 2019 but with an EGFR gene mutation. I also had 6x chemo and 30x radiation prior to starting a targeted therapy (which is not immunotherapy) in March 2020. I actually had a really rough time with chemo and radiation and was very sick for the first half of last year but have since recovered and am now NED. I think I've gotten past being seen as a patient by my friends and family, mainly because they've seen me get back to almost normal. (My husband probably still worries about me more than he lets on.) It may take some more time for your loved ones to adjust to your diagnosis. After all, they may not be aware that today many of us are living with NSCLC as a chronic illness. We are here for any venting you need to do. On the bright side, your doctors sound very supportive. Glad you've joined us.
  5. If there were any question, I would think they would have at least ordered a chest Xray. That's how my adenocarcinoma was found.
  6. I can only answer question #3: I have a stable 5/6 mm nodule in my upper right lung. It has remained the same size after going through chemo, radiation and now targeted therapy. My oncologist has just been watching it. I get PET/CT scans every 3 months but a nodule of that size doesn't "light up" on a PET scan. As others here will tell you, nodules may or may not be cancerous. Let's hope yours isn't!
  7. Like Michelle, I told everyone as soon as I knew, even my father who was 97 at the time. I started a Caring Bridge site that I still use today, through which I've also tried to raise awareness for lung cancer research funding. My hairdresser was the only one who had a devastated reaction, probably because so many of her clients go through cancer. Everyone has been very supportive and they are all amazed at the progress I've made.
  8. I'm very sorry to hear this, Iris. Will you be getting new biomarker testing to determine whether there is a (new) mutation? Has your oncologist talked about next steps? Hopefully you weren't just given your diagnosis without some treatment information.
  9. Congratulations on your treatment response so far! That's great news. Medicare has approved PET/CT scans for me from skull to mid-thigh every 3 months so far. But I understand that Canada only approves one PET scan in a lifetime! So, many people get only CT scans throughout the course of treatment. But it doesn't hurt to question your oncologist about scans.
  10. Hi Carrie, everyone reacts the same as you have when they get a lung cancer diagnosis. When I started out at Stage IIIB in October 2019, I had a 6 cm mass in my left lung with spread to lymph nodes. My PCP called me in to her office at 5 pm on a Friday, so I knew the news was not going to be good. I was not a candidate for surgery. It's natural to be anxious at these beginning stages, especially when you have 2 differing opinions. Don't hesitate to go for a third. Whether you have surgery or a bronchoscopy, you should request biomarker testing to determine whether there is a genetic mutation in the cells. Several types of mutation (like the one I have) can be managed as a chronic illness and treated with a daily pill. This site is a valuable resource and there are many stories of perseverance and survival. I'm certainly one of those, being NED (No Evidence of Disease) today, 14 months after the start of treatment (chemo, radiation and targeted therapy). Once you have a treatment plan, whether surgery or not, and start moving forward, you'll feel like you're making progress. My best advice is to take one day at a time and stay away from Dr. Google. The GO2 Foundation is also a good resource. Come back here and ask questions. Hang in there, we're all on the same ride.
  11. Thought everyone might be interested in this article about discovery of a new tumor suppressant. Go science! https://www.cancer.gov/news-events/cancer-currents-blog/2021/ambra1-tumor-suppressor-cancer
  12. I hate those questionnaires. Sure, you're bummed out if you don't feel well. Who wouldn't be?
  13. Welcome, Rurumc. I think your rant is well-deserved on a couple of fronts. First, you should never be made to feel bad for seeking a second opinion. It's your right as a patient facing a serious disease. Second, doctors at this point are well aware of the inflammation caused by recent Covid vaccination, and he should have explained that to you when he discussed your scan report. BTW, I agree with LexieCat about not reading scan reports on your own. One part of treatment success is the relationship with your oncologist. My oncologist has written a book on compassion in medicine ("Love is the Strongest Medicine") and I'm trying to get him scheduled for a Friday Zoom session. We have several members who have had poor experiences with their oncologists' communication styles, and I think he could inject some positivity and hope where it's really needed. Your stress at this time is understandable, especially with the recent loss of your sister. My condolences to you and your family.
  14. Here's an interesting article about the benefits of "prehabbing" prior to treatment or surgery: https://www.everydayhealth.com/lung-cancer/exercise-prehab-can-help-lung-cancer-patients/?utm_source=fb&utm_medium=cpc&utm_campaign=eh_cs_ag_6188375542985&utm_content=eh_cs_cid_6188414412785&fbclid=IwAR30P5WNInonSTqIGUazxYd2gz6tTZIj4JCMObvbHiQ1jjmd5I8A_nvA5jE
  15. The GO2 Foundation is launching an initiative to identify the needs of the SCLC community: https://go2foundation.org/blog/go2-foundation-seeks-to-better-understand-needs-of-people-with-small-cell-lung-cancer/
  16. Hi Vicki, it does sound like you're doing great. I'm 6 months behind you (diagnosed in October 2019), and I was also hospitalized, after treatments ended. Last year was miserable between side effects and an extended recovery, but I'm out on the other side now and doing well on a targeted therapy. I think we're always aware that there can be progression, but I just live for each day. I can't control the future so I don't worry about it. Welcome and ask any questions. There is an Immunotherapy section if you have specific questions about your treatment.
  17. Yes, my hair fell out with carboplatin and it took a year to come back. A nice hairdresser will cut yours short or buzz it off for free. I've been using biotin to help it grow back. My new "chemo" hair is curly and I no longer color it. It still may change but nobody knows for sure. My eyelashes have fallen out several times too. The upside is that I have no hair on my legs anymore. I got some cute headcovers from Headcovers Unlimited and I still use one to this day as a warm hat.
  18. @hillham, I think that's a good attitude. Do something nice for yourself, whatever makes you happy. If it's getting a nice coffee or buying yourself some flowers or just reading a good book, do something good for YOU. Treat yourself if you start to feel down. Celebrate each milestone. What works for me is listening to my favorite music while I walk with my dog for an hour every day. It really lifts my spirits, and I reflect on how far I've come since last year. There inevitably are ups and downs, but as someone who has had a second chance at life, I've decided to leave the down times (months!) in the past. I hope your treatments go well. I thought getting those radiation tattoos was so painful!
  19. So Tagrisso was started only a month ago. Some people improve immediately and it's a slower process for others. I count myself as one of the slower ones because I was so weak and had so many health problems before starting Tag due to chemo and radiation. It's possible that the excessive sleeping is actually fatigue from the radiation or a side effect that many Tagrisso users report. Some take Tag at night to combat the fatigue. I take mine at bedtime so I don't forget. It took me about 5 months until I recovered from everything I went through, and I still have radiation-induced pneumonitis, although it doesn't seem to bother me. For the weight loss, try some high-calorie treats like ice cream or milk shakes, or supplementation with Boost or Ensure. Increase that calorie intake whatever way you can. The prognosis of 2-3 years on Tag is just an average. Some people get more and unfortunately some get less. But some have been on the 1st and 2nd generation TKIs for years (Tag being a 3rd generation drug). I think it's more difficult being a caregiver than a patient. Give the drug time to work and keep dealing with issues and symptoms as they come up. Join the private FB group Tagrisso (osimertinib) Patients and Caregivers Group and you'll find others who are in the same early stage of Tagrisso treatment. It really is a wonder drug.
  20. I didn't realize that you should have your port flushed every 8 weeks. I just had mine flushed after 16 months and luckily it was fine. Just an FYI for port maintenance!
  21. Glad you've got your treatment plan. The worst part is waiting for that. Like Jesse says, chemo and radiation may give you fatigue and other side effects after several sessions, but just know that they are temporary--and the treatments are very effective. I had a particularly rough time with both but I'm back to normal now and consider everything I went through to be worth it. You can do this!
  22. Dr. Christian Rolfo, who studied EGFR for his PhD, is leaving Maryland for Mt. Sinai Hospital in NY. One of the members posted that she was sorry to lose him. He may be a good resource for you when he gets there.
  23. Hi Mike, I'm so sorry for your diagnosis. But here is the bright spot: you are EGFR+ and going to start on Tagrisso. The EGFR mutation is most common in never-smokers. I was diagnosed with Stage IIIB EGFR (Exon 19 deletion) in October 2019. I had chemo and radiation and started Tag in March 2020. I would say that your shortness of breath will decrease within a few days of starting Tag, believe it or not. I have heard this from several people. At least in the meantime have your pulmonologist prescribe an albutirol inhaler. I still carry mine in my purse but never need it anymore. Tagrisso does come with a long list of side effects but don't let that scare you off. It's a wonder drug. You will need to get an EKG/echocardiogram first to establish a cardiac baseline. Then if there are no cardiac issues, you'll be cleared to start Tag. Your oncologist will do blood work monthly and eventually graduate to every 3 months. They want to monitor your kidney and liver function, as well as other key factors. My scans over the last year have showed increasing improvement. I was stable for the longest time and then yesterday I got the news that I'm finally NED (no evidence of disease)! I have minor side effects with my nails and a dry cough that is either from Tag or allergies. Very tolerable. There are several private LUNGevity Facebook groups related to Tagrisso and EGFR. I can list them for you if you're interested. If you have any Tag questions, this is the place to ask. And don't hesitate to ask your doctors too. But it looks like they are following the standard of care for your Stage IV.
  24. Annabelle Gurwitch is a member of one of the Facebook EGFR groups, and I've read about her difficult lung cancer story in other articles. She was recently on the Today Show to bring awareness for the need for research and funding: https://www.today.com/health/covid-19-test-leads-lung-cancer-diagnosis-annabelle-gurwitch-t216306 And a Philadelphia chef and his wife are in the news, also to raise awareness: https://www.inquirer.com/food/jim-burke-lung-cancer-tag-time-hapy-hour-20210504.html Great job by both of them.
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