Langerhans Cell Histiocytosis
Hi There, my name is Emma and I'm an active listener here on 7 cups. I have a condition called Langerhans Cell Histiocytosis (LCH). LCH is not a cancer but it acts like one, therefore it's treated like one. LCH is a cell condition, everybody has histiocytes, they are good white cells that fight off infections, but unfortunately for me, my body produces to many of them, which multiply and create lesions which attach to my organs, bones and skull. Unlike cancer, this is a life long condition. The only successful treatment available for LCH is chemotherapy, this is because the histiocytes respond to the chemo and zapp the lesions away. I have just completed a 45 weekly course of chemo, and now receive maintenance chemo. I would love to help and supports anyone going through this kind of treatment, weather it's you or a family member, you are all welcome.
@emma
i have seen a few of your posts and I keep being amazed by your great strength, positive spirit, and kindness. You are an amazing woman and an inspiration. Thanks for the piece on chemo emotions that you shared it was fantastic and affirmative. I used to be a chemo nurse and saw the emotions you described. It cannot be be easy to deal with this as a chronic condition.
I hope you will keep on fighting the way you are now - I believe you are making a huge difference in so many lives that you may not even be aware of. But most of all I hope that positive strength and belief will continue to return to you to help sustain yourself
@TrineT
Thank you so very much for this unexpected beautiful message, your kind words of support mean so much to me at this very moment, so thank you with all my heart. X
Im grateful you have taken the time to read the information I complied regarding chemo treatments/emotions, they are there to provide an insight for anyone experiencing this awful illness. My support is there for anyone who needs it, yourself included.
Thank you much, I hope you have a wonderful day
Best wishes
Emma x
I too have a form of Langerhans Cell Histiocytosis. I have it exclusively in my lungs. Pulmonary Langerhans Cell Histiocytosis results in the spongy tissue of my lungs turning into a hard stone-like useless tissue. The chemo trials failed for me as they were experimental to begin with for my condition. I had the disease 25 years before I was diagnosed so now my only hope is a transplant but with my other health conditions that is unlikely. So glad to finally know of another who knows this name even.
@Jdtater1971
If you still out there, how did you decide you had it for 25yrs?
@Blastinbronco Hi there! Welcome to 7 Cups and to the Disability Support Community.
You have replied to a very old post and according to the posters' profiles none of the contributors have been active in the last few years. That said people often pop back or new interested posters join in. But I wanted to let you know.
Is this a condition that you have?
@MistyMagic
yes