Jump to content


  • Posts

  • Joined

  • Last visited

Profile Information

  • City
    Estes Park
  • US State (if applicable)
  • Country
    United States
  • Gender
  • Status
    Not a patient
  • Interests
    Caregiver support, survivor stories, patient resources

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. You have found exactly the right group of people to help you through this. When my husband was diagnosed with Stage IV lung cancer non small cell adenocarcinoma back in September, I immersed myself in my own "research" which also turned out to be grim, overwhelming, and just upsetting. I have no advice to offer that hasn't already been said here, other than to tell you that this organization and this forum will be a wealth of resources for both of you. Sign up for the caregiver forum and join any of the virtual get togethers that you can. My husband found great success with immunotherapy and despite a really grim diagnosis in September, complete with 8 tumors spread throughout his body, he received a "no evidence of disease" diagnosis in January. When talking statistics, our oncologist was very clear that they are old (at least 5 years back in most cases) and many do not count for the constant advances in treatment. As Tom said above, finding some resolution is more the rule than the exception. I also recommend reading all of the resources he provided - they were a great help to us and will be while we continue this journey. Make sure you and your father like your oncologist. If you don't, find a new one. That is my only other piece of advice. Take it one day at a time and know that you are not alone!
  2. Thank you so much for this!!! These kinds of discussions are exactly why this forum is so valuable. I appreciate your advice more than you know!
  3. Good news! Yesterday's scan revealed no nodules, masses or pleural effusions! He did have some groundglass opacity which we are sorting through, but the team assures us this is not related to cancer and often presents with any number of respiratory ailments. He just had his first dose of vaccine, so I'm wondering if that has any impact. I appreciate you all reassuring me (time and time again, and many more to come...) that I am not overreacting here.
  4. Thanks, Tom! Always appreciate your insights. I purchased Scanziety and have it on my Kindle. Now would be a great time to start reading it, because this will definitely be our life for (hopefully) many years!
  5. Thanks, Lou. I think you are absolutely right about the benefits of this group! Take care!
  6. If it feels this way for me as a caregiver, my heart just aches for the patients and survivors like you and my husband. Wishing continued good news and good scans for you!
  7. Thank you Judy! I appreciate the support!
  8. LexieCat, I have played over in my mind every physical activity he's done from bringing in wood to shoveling snow. I am very glad to hear your aches and pains were just those and nothing more!
  9. Very sorry to hear about your father, but as others have stated, you are in the right place. My husband used to always say that he would never put himself through chemo, until he was faced with his own stage IV diagnosis in September. He had 8 tumors that were spread from his spine to his hip. He went on the "triplet" and had minimal side effects. In fact, I think radiation might have been the hardest thing for him as it absolutely knocked him out. He never lost his hair, never really lost his appetite, no skin issues... just fatigue and an occasional fever. He received the best possible diagnosis in January with no evidence of disease and will continue to have scans every 2 months and stay on immunotherapy for 2 years. It's an individual choice, but you'll see as you spend time on these forums, many people are managing the diagnosis and treatment. You won't find a better support group and a place to get real information rather than the terror you might find on Google. Best of luck to you on this journey.
  10. Hey fellow caregivers! I had a moment last night that I think you all are uniquely positioned to understand. Adam's journey began with a stage IV diagnosis Sept. 2 and by early January his post-treatment scans showed NED. What an incredible gift! Last night he shared with me that he's having some dull pain again near his rib cage that he can feel both in the front and back. I'm acutely aware that NED does not mean that he is cured or that cancer is out of our lives forever, but I was surprised by my reaction to this news. Fortunately, his next scans are on Tuesday of next week, so we don't have to wait long to see if there is already a recurrence. I'm also realizing that the curse of NED is letting your guard down, which I think I've done for the past several weeks. Granted, this could be something completely different and unrelated. He said it is a dull pain and not at all as severe as the pain that led him to the doctor when he was diagnosed. He is on Keytruda for the next two years, every three weeks, and I am confident that if another tumor has appeared, we are in good hands for treatment. I'm not seeking anything specific with this post, just needed to vent to a group who understands. Hope you are all well.
  11. I apologize for being late to respond, but would love to contribute if it is still applicable. Like everyone else, the news of my husband’s diagnosis was earth shattering. Further, when we learned it was stage 4 and began doing our own research in what that meant, it was even more terrifying. Finding Lungevity was a gift that I cannot describe. As the caregiver, it was a relief to see others in real time sharing advice - applicable advice - and offering words of support and encouragement. It is a unique and terrifying place to be and knowing there is a whole community out there who understands your unique challenges is so comforting. Further, the advocacy that this organization promotes makes me feel like there is someone in my corner, fighting for me every step of the way.
  12. I am so grateful for your insights - they really help! A new twist has developed for us in that unfortunately, we were evacuated from our home because of the wildfire burning close by (about 5 miles right now) and our community is in imminent danger. Not at all what we need, but we are trying to make the best of it. Adam's next treatment is Monday, so we're hopeful that we can be home for that, but if not, we are safe and comfortable and will do the best we can. Adam is handing all of this incredibly well. As for me, this put me just a little over the edge. Good character building or something like that.
  13. Thank you!! Fantastic advice and I really appreciate it, especially that last reminder. I’m tempted to print that out and tape it all over the house.
  14. Thank you both - these are helpful responses! I just want to be sure I'm doing the right thing and either not pushing too hard or not being too lax. It's encouraging to hear your experiences!
  15. Hello all, As you know, I'm completely new to this and haven't yet had a chance to participate in a Zoom meetup or other group discussion. Adam's first treatment was two weeks ago today, so in one week we go back for the next. The side effects have not hit him as hard as we expected, with the exception of fatigue. I recall early on in this journey that it was advised to try to continue hiking, though maybe smaller hikes (we usually put in 8-10 miles), and that remaining active would help him feel better. That thought just baffles me now as I cannot even imagine getting him to take a 30 minute walk. We're shooting for a 15 minute walk occasionally at this point. He is still working when he can, so between that and the fatigue, exercise seems like an impossibility. I struggle with finding the balance of letting him sleep because I know he needs it, to feeling responsible for getting him up and moving around. I realize it's likely that I'm overthinking this. Thanks for any advice you can give.
  • Create New...