Is Anyone Else Dealing with Langerhans Cell Histiocytosis?

Hey Tamie, I don't know anything about your condition. I have lung cancer. What is the prognosis of your condition? All cancers are hard and can be lonely. I suspect that having someone who has a similar condition could be very helpful. Although I don't have the same problem, I do have a very serious, potentially fatal, condition. I'm here to listen if you care to talk. Fight like a warrior!

Hey Garey, thanks for reaching out. Sorry to hear of your condition. It’s never an easy road to navigate is it? I feel your pain even though mine is not terrminal it can affect my organs. I’m on chemotherapy pills 8 per day and losing my hair. At least I’m not sick. Praying for you! Tamie

Tamie, I just had a PET scan on Friday and should see the results by Tuesday or Wednesday? If this one is clear of active cancer cells, that would be two in a row. I'm glad to hear that your condition is not terminal! Mine is potentially, so the second scan being clear would certainly relieve a lot of anxiety but in real terms, none of us are getting out of it alive. I've had a decent life and have a great wife and family. I would love to live another 10+ years but at 75, I can be satisfied. Take good care.

Hola

Hello Juan!

Second PET scan in a row with nothing to report! Hope you're doing well.

Welcome to the community! Langerhans Cell Histiocytosis is indeed quite rare, and connecting with others who understand this journey can be incredibly valuable. This community has members with many different diagnoses, and there's a good chance someone here has experience with LCH or similar challenges - encourage others to share their experiences if they feel comfortable doing so.