Jump to content


Popular Content

Showing content with the highest reputation since 07/02/2020 in all areas

  1. 3 points
    Rower Michelle

    I know I have cancer

    I totally understand where you’re at right now. I think most of us here do as well. Feeling consumed is completely normal. I know it’s hard and right now, the intensity of the emotion isn’t something you can will to stop. There’s a gradual process with ups and downs. Eventually the ups outnumber the downs. In the beginning this is an hour by hour process. It took me six months and three CT scans before there was a sense of normalcy. Try not to bottle up, if you want to cry, sob, if you want to yell, scream, angry-hit a pillow. Keep talking to us, we will be here to help along the way. You can do it. Believe in yourself. Michelle
  2. 2 points

    Terrified newbie

    Hi All, The diagnosis is stage IV non-small cell adenocarinoma. I’m waiting for the bio marker results, and I get the pet scan and mri later this week. The dr thinks I’ll be a good candidate for targeted therapy so crossing my fingers and toes for clean scans (other than what I already know), clean mri, and “good” mutation. Feeling all kinds of things! Working hard to remain positive and keep a healthy attitude. ❤️
  3. 2 points
    Lisa Haines

    Newly diagnosed

    Gary, Feel free to ask any questions, we are all happy to share our experiences with you. Much of what we have learned is because of what we've been through or because of others who shared their experiences with us. I am very thankful to people I've met in Support Groups and would have been lost without them. LUNGevety is an amazing group and I'm very thankful to be one of many members. I'm also now very happy to be a Lung Cancer Advocate and love being able to help others. PS: My hip surgery was "hip replacement" surgery and I'm now in the need of having my other hip done, but it's been put on hold because of Covid. Hoping this time it all goes very well and I do not develop any problems. In hindsight we now know that I never did really have "post op pneumonia", it was actually lung cancer that was missed on those chest xrays. Just seems so surreal to think that everything up until the surgery was all fine, then just a month later I find out that I have Stage IV NSCLC that had already spread to my brain and caused the PE! Clearly, this is a sneaky cancer and far too many of us do not find it until it's advanced. Thankfully, we've come a long way in the past few years and now have more treatment options than ever before.
  4. 2 points

    Newly diagnosed

    Gary- My mom had a high PD-L1 prior to beginning the triplet. Keep in mind, this was nearly 3 years ago and lots has changed since then. In fact, my mom was diagnosed in June and the triplet had just been publicly released as more effective than Keytruda alone just 2 months earlier. Although my mom has a high PD-L1 percentage, immunotherapy can be very effective in folks without PD-L1 too. The Keynote-189 trial showed increased survival rates no matter what their PD-L1 number, as long as it was combined with alimta and either cisplatin or carbo for first-line treatment in metastatic non-squamous NSCLC. The triplet has become a standard of care for many. However, as Michelle discussed, ruling out any other biomarkers/mutations is really important.
  5. 2 points

    Newly diagnosed

    GaryG, My mom had 6 sessions with the triplet recommended to you and then went on to about 1.5 years of Keytruda only for her adenocarcinoma recurrence, initially stage 3a. She did have a high level of PD-L1 cells. She had a tumor on the back of her trachea which was closing off airflow in which a tracheal stent had to be placed. Within 6-8 weeks, the tumor had shrunken enough to have the stent removed. It's been nearly 2 years since her final Keytruda treatment and (knock on wood) her lung cancer has not returned. You can read more about her journey here and here. I hope my mom's experience can answer some questions for you and give you some hope. Take Care, Steff
  6. 1 point
    Just bumping this up, I hope to see you tonight!
  7. 1 point
    Co-Survivors! We now have a meetup just for you! LUNGevity Foundation Caregiver Meetups will be twice a month on Thursdays at 7pm E. Join us if you can on Thursday July 16th. The link to join on that date is https://zoom.us/j/96667587148?pwd=YWM5KzdOM3JnNFQ1QVhHMmZUNWxIUT09
  8. 1 point
    Rower Michelle

    The wait begins

    Hi Laura, First of all, I’m very sorry to hear about your Dad’s diagnosis. There’s a saying here in this Forum, the waiting is the hardest part. When we hear the word cancer, action Jackson kicks instincts kick in yet the medical community runs at a glacial pace (even before the pandemic). Lung cancer today is rarely considered an emergency. I know how ridiculous that sounds. In reality, lung cancer has come a long way since 1991. In fact, there have been more treatment advances in the last five years than in the last fifty, even for small cell lung cancer. Initially my prognosis was six to twelve months, but due to a new targeted therapy, doing well nearly two years later. While this is counterintuitive, it’s best to hold off any any internet research about lung cancer. Most of it is really outdated with any study older than six months already being designated as old news. There are great resources here in Lungevity and YouTube sessions from the Go2Foundation. There are several videos on biopsy and something called biomarkers which determines the sub type of cancer. As you alluded, it’s impossible to know what your Dad has until the biopsy and biomarker tests have been completed. A biopsy in normal circumstances takes about 48 hours (in COVID areas it’s up to 5-7 days). The biomarker tests are done by a specialty lab and take 7-10 days. Aka more waiting. Talking was pretty difficult for me in the beginning of all of this so I got a memo pad and wrote things down as a primary form of communication for a while. From the sounds of what you’ve reported it appears as if things are on track. Let us know what questions you have so we can jump in. Welcome to the group. Michelle
  9. 1 point
    Rower Michelle

    Helping my dad with Fatigue

    Hi Olivia, Yes, the fatigue comes with this territory. Walking usually helps but if that’s not an option look for a Zoom restorative yoga class that can be done without props. You might also want to check out some breathing exercises and Qi Gong Tapping on YouTube. Try Andrew Weill MD and Chinese tapping. It’s something that can be done laying down to improve circulation and help boost energy. Keep us posted! Michelle
  10. 1 point

    Ready for yet another new normal

    Things are a little different Down Under. Our office has remained open all along .There are only 6 of us in 97sq.m. so social distancing is not a problem. Everyone drives to the office. I think the Australian death toll stands at 106. Below is my M2C that I got late Feb. The old geezer in the top left is me. That car is a little beast.
  11. 1 point

    I know I have cancer

    It's a roller coaster ride for sure. Initial diagnosis late on a Friday was a gut punch. But after all the consults, tests and getting a treatment plan was very calming. I wont bore you with all the twists in my case but again, starting the treatment with finding its not nearly as horrible as I imagined also calmed me. Now that I am nearing the end of my treatment I am feeling my stress level rise noticeably. I think it's because once all the active treatment is finished I enter the unknown again. Will it come back and where? Plus always waiting on the next scan. Embrace the good days and get thru the bad ones as best you can. You are not alone. Peace Tom
  12. 1 point

    Newly diagnosed

    Thanks again Steff: So much knowledge and wisdom I feel spoiled. I am constantly reading trying to get educated but you ladies put me on the right track in no time. I wish and hope I can help others the way you helped me. I will however read about the Keynote-189 trial in order to catch up. Thank you once more. Gary
  • Create New...