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    Estes Park
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    United States
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    Caregiver support, survivor stories, patient resources

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  1. Thanks, Tom! We are still celebrating! I know the skin issues are irritating for him (no pun intended), but they are minimal compared to some of the other things he could be dealing with.
  2. I think that is the next step his oncologist wants to take. He prescribed some cream and if that doesn't help, I think the dermatologist will be next.
  3. Hey everyone! It's been a while since Adam or I posted. I have been busy with work and school, and Adam's work in economic development is pretty heavy with the pandemic recovery. Back in January when he was fortunate to receive a NED diagnosis, his oncologist elected to continue his Keytruda infusions every 3 weeks for 2 years. His original treatment was the triplet - carbo/pem/pem. His last set of scans at the end of June showed continue progress, so the oncologist is taking him down to every 6 weeks. He didn't have many side effects initially, but recently he has had lots of skin issues - rashes, itching, and extreme sensitivity to hot water (which we learned on our first vacation since diagnosis where we spent way too much time in a hot tub). The only other thing that we can see is the ever-present fatigue. Some days are relatively normal, others involve several naps. We just go with it. I think all things considered, we're still extremely fortunate for the minimal side effects. We are always sending our best to everyone in this group! Suzanna
  4. 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!
  5. 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!
  6. 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.
  7. 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!
  8. Thanks, Lou. I think you are absolutely right about the benefits of this group! Take care!
  9. 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!
  10. Thank you Judy! I appreciate the support!
  11. 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!
  12. 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.
  13. 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.
  14. 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.
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