What are your experiences with Langerhans Cell Histiocytosis?
I was recently diagnosed with Langerhans Cell Histiocytosis. I've learned that it affects 1-200,00 children and only 1 or 2 per 1,000,000 adults. There is no government funding for this disease. It is like "cancer" although cann't be defined as a cancer because there is know definate proven treatment for it.
I have no experience with it, nor had I heard of it until now. Check with a University hospital near you and a University that speciliazes in rare diseases. Usually, there are grant programs available for those who are researching diseases and want to get funding for it-those people will be your cutting edge of technology for your health. Best wishes to you. (+ info
Does anybody know about Langerhans cell Histiocytosis?
I was dx'd 98 I had a craniotomy and then chemo. that was no good for me. Then I became ill again 18 months after first time, chemo again, that was really bad, so I quit half way thru. I then went to Scripps and that was disaster. I could not seem to get any treatment then I got this dr. to give me 2cda chemo. That seemd to work pretty well and it helped for a good while. But I have been sick again for awhile I really dont want to do chemo again but I will use the 2cda if I get it again. I also recently have been disgnoised with an aneurysm that I need too get repaired with a platnium coil. Wow Iam wondering what could be next. I have a history of Hodgkins in the family as well. My little sis died from chemo and Hodgkins in 1990 and two bro's that have recovered from Hodgkins and two cousins with Hodgkins..And they say it does not run in families. I have been fighting for nine years and will cont to do so any direction or help is appreciated. Thank you JRock
I was born with the disease, and the doctors told my mother that I would die of it. Apparently my immune system fought it off and I show no signs of it anymore. I never did too much research into it so I can't tell you exactly what it does. I guess I was lucky... heh (+ info
Ok so I'll make this as easy to understand as possible if it doesnt then I'm sorry. When I was 10 I was diagnosed with Langerhans Cell Histiocytosis. I'm now 19 and lately I've noticed the same type of symptoms as when I was sick. I had to get an xray and when I went back the doctor and showed it to her she said there was shadowing on my lungs so my first question is what does shadowing on my lungs mean? Contiuing (sp?) on. She then said (she being my doctor) said I should get a ct scan just to be sure so I went to book it and they had a vacancy so I got it done. I picked it up the next day and it was already open so naturally I looked and the report inside said "Finding are similiar (not the exact word but I couldnt think of it) with pulmonary histiocytosis. So my 2nd question is what does it mean when it says findings are similar with pulmonary histiocytosis? I have a doctors appointment tomorrow but I'd like to know as much as possible now so I don't worry later. Thanks in advance
If you don't know Little Nikky then why bother wasting my time with an idiotic answer?
Just adding some other stuff - I was treated with chemotherapy for 6 months via an intravenous drip. I was also on a course of steroids for 6 months and went thru several other tests. Don't know if this is necessary but I thought I would put it in anyway
Thankyou Tsoto, umm where to begin to reply? Lol yes that's probably the word they used I just couldnt think of it. I was looking up stuff regarding pulmonary histiocytosis but it wasnt really getting me anywhere, I'd just start to read it and cry(sad I know) because if it is what I had before that's basically a year of my life gone. The report I read also said something in regard to second hand smoking I think? And if that's true, my mum smokes so it's kinda like "Well do I blame her for me being sick again" I know that sounds horrible but logically that's the way I think, thankyou for your response
Langerhans Cell Histiocytosis is also called histiocytosis X. While it usually affects the bones in 80% of the cases, it can become systemic and affect other organs, specifically the lungs. Pulmonary histiocytosis X, is characterized by inflammation of the small airways (bronchioles) and the small blood vessels in the lungs. It is most common in adults. The inflammation leads to stiffening (fibrosis) and destruction of the walls of the alveoli (parts of the lung). The cause is unknown. People 30 - 40 years old are affected most often. Cigarette smokers make up 90% of patients (the second hand smoke from your mother would make sense). Your CT scans probably revealed the fibrosis sometimes associated with your disease.
If you don't have fibrosis, you may not have too much to worry about. If you do have fibrosis, then I would say you have reason for concern. I suffer from pulmonary fibrosis. While I don't have Langerhans, my disease is an auto-immune disorder (Langerhans is now considered by many to be auto-immune and not cancer). If you have fibrosis, the news isn't great. Unfortunately, the lungs cannot heal scar tissue and it seems that once the process starts, it is difficult to stop. I hope your doctor is a pulmonary specialist. If she isn't, and if you have fibrosis, make sure you are referred immediately to a pulmonary doctor. Since they caught it early, they may be able to intervene with either steroids or Gamma 1 Interferon. For more info on pulmonary fibrosis, go to
I hope you get good news. If not, please know that you are not alone. Over 200,000 of us in the USA have pulmonary fibrosis. It strikes people as young as 8 and as old as 98. That is little solice, but knowing you are not alone can offer comfort. Good luck at your doctor's and keep us posted. Sorry I couldn't give you better news. (+ info
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