Experiences with

Histiocytosis

The lymph node shows prominent sinus histiocytosis. Features are consistent with a reactive hilar lymph node. In summary, there is a prominent non-specific bronchial inflammatory infiltrate with no obvious evidence of lymphoid neoplasia. Tumour was set for further investigations. Xxx

Does any body on this site, have a very rare lung disease called pulmonary langerhans cell histiocytosis?

I was diagnosed with Histiocytosis type x the x means they haven’t named it yet. Mine was renamed to Langerhans cell Histiocytosis but there are different strains of it. Have you tried the Histiocytosis association in America Hope you can be treated Regards Lynn

I was diagnosed last year and would like to hear from anyone else diagnosed with lch

Hi all, I have just been diagnosed with Pulmonary Langherhans Cell Histiocytosis. I have been told this is not cancer yet some websites I've looked at say it is cancer. My doctor has said there are only about 8 patients with this disease in Ireland.

Tumor came back this time with langerhans histiocytosis cell . It is very RARE. What I know about it is it can effect your bones your organs and ur skin.

I’m biopolar, also have bad arthritis...not sure how there going to treat the Langerhans cell histiocytosis, as I have been diagnosed in feb, 2016, with no on going treatment, just see the oncologist once a year and the blood doctors! So tired of feeling unwell!! I give up!

Hello, Any adult been diagnosed with langerhans cell histiocytosis? Would love a chat

Hello, Has any adult been diagnosed with this rare disease called langerhans cell histiocytosis?

I have pulmonary landerhans cell histiocytosis of the lung, things have stayed the same with the lung, but now worried that it is in my jaw bone!

hello I hope somebody can answer me .I was diagnosed with LCH 1 month ago but I have it located only in my lower jaw? So they offer me radio or chemo therapy because its a big part of my jaw and they said the surgery its going to be not so easy and they have to cut maybe a little more of it.I am from

Feeling let down, it's a year since I've been diagnosed with langerhans cell histiocytosis, and still no further in treatment!

Does any body else get severe night sweats with langerhans cell histiocytosis! Last night I woke up wet thru, as if I had been in a bath! 😩😩also the tiredness I get is unbelievable! 12 hours at night straight thru then another 3 hours in the afternoon! ShTtered!! 😩😩😩

Hi I have been diagnosed with pulmonary langerhans cell histiocytosis last year...I now have cysts in the lung due to this disease does any one else have cysts? I'm also concerned that not many doctors know much about it, does any one else have this problem? Answers appreciated. Thank you

hi there just wondering if anyone else got pulmonary histiocytosis?i hear its very rare i thought i had severe emphysema but just been told its this feeling pretty fed up as i thought i were gonna get valves put in n may get to breath abit easier but not gonna happen now :(

If I do have pulmonary Langerhans cell histiocytosis complete avoidance of specifically cigarette smoke is key. I quit smoking two years ago however, 5 days a week I've been in my work pickup truck right next to a co worker smoking about ten cigs a day.

In some ways, histiocytosis is similar to cancer and has historically been treated by oncologists with chemotherapy and radiation. Unlike cancer, histiocytosis sometimes goes into remission without treatment.

Hi everyone I have Emphysema also Pulmonary Langerhans Cell Histiocytosis my oxygen transfer is 37% I feel so exhausted bad headaches when do people have oxygen therapy would this help me feel better? :)

Hello Is there anyone here that has this like me......:(

her hip bone near the socket, 2 more weeks of antibiotics in hospital, she got home with 4 weeks worth of antibiotics, 1 week to go, had hospital yesterday for X-ray, bones healing but she's not to walk too much, been using a wheelchair the last 6 weeks, then doctor told me she has langerhans cell histiocytosis