What are your experiences with Langerhans Cell Histiocytosis?

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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?

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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)

histiocytosis eosinophilic granuloma langerhans signs of it returning?

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i am aware that many people will not know what this is but i had it when i was younger if anyone is a doctor or knows somebody that had it even they had it and know the answer to my question would be great. my knees have been hurting for no reason and my wrist and ankle have been getting sharp pains every now and then any information is appreciated. im already planing on going to the doctor. thanks
You do not give your age at diagnosis or your age now. You don’t mention if you had chronic conditions due to this or not. This is a rare disease that does not often occur in adults. The extent and treatment varies widely, so there really is no way to answer you. If you were a child when diagnosed you are at an increased risk of developing cancer in the future.  (+ info)

What is the reason for langerhans cells in the fallopian tubes?

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What is the difference between the langerhans cells in the normal and postpartum fallopian tubes?
Langerhans' cells (the L is capitalized) are believed to have an immune function with surface markers characteristic of macrophages and monocytes. That takes care of both your questions.  (+ info)

mediciens used to treat langerhans cell histiocyosis?

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Langerhans Cell Histiocytosis:
Abnormal growth (proliferation) of specialized bone marrow–derived Langerhans cells (LCs) and mature eosinophils (type of inflammatory cells).
Treatment:
Corticosteroids, vinblastine, other chemotherapeutic agents such as nitrogen mustard, cyclosporine, and radiation therapy have all been helpful.
The last reference is also good.
Please see references below.
Good luck.  (+ info)

I am looking for any information on Langerhans Histiocytosis X and/or Lettera-Siwi diseases. Need ASAP?

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Our small town of approx. 8000 people has had three cases, two in the last 3-4 years (1 Lettera-Siwi; 2 Langerhans). 2 of died, one child is hanging on (13 mo. old). Looking for information/help for this child.

Thanks for your time.
What Is It?

Langerhans' cells are white blood cells in the immune system that normally play an important role in protecting the body against viruses, bacteria and other invaders. They are found in the skin, lymph nodes, spleen, bone marrow and lungs.

In Langerhans' cell histiocytosis (formerly known as histiocytosis X), Langerhans' cells multiply abnormally. Instead of helping to protect the body, these cells, in massive numbers, cause tissue injury and destruction, especially in the bones, lungs and liver. Although this overgrowth of cells may be like cancer, most researchers do not consider Langerhans' cell histiocytosis to be a form of cancer. In fact, the cells appear to be normal. There are just too many of them.

Langerhans' cell histiocytosis can develop in only one site or organ, or it can involve several different sites and organs. In most cases, Langerhans' cell histiocytosis that affects many body systems typically occurs in children younger than 2, whereas single-site disease may occur in people of any age.

The cause of the disorder is unknown. However, researchers are studying the possibility that some common substance in the environment — perhaps a viral infection — may trigger the disease by causing the immune system to overreact. However, researchers have not yet identified an infection or substance that triggers the disease. One intriguing observation is that almost all people with the disease whose lungs are involved are current or former cigarette smokers. However, even among smokers, this condition is rare, and smoking seems to play no role in the disease when it affects parts of the body outside the lungs. Other theories suggest that the primary cause of Langerhans' cell hystiocytosis is an abnormal immune system.

Langerhans' cell histiocytosis is rare, affecting one in 250,000 children and one in 1 million adults in the United States. Although it can strike at any age, it is most common in children and young adults, with about 70% of cases occurring before age 17. During childhood, Langerhans' cell histiocytosis peaks between ages 1 and 3.

Langerhans' cell histiocytosis, includes disorders previously considered separate diseases: diffuse reticuloendotheliosis, eosinophilic granuloma, Hand-Schuller-Christian disease and Letterer-Siwe disease.

Symptoms

Symptoms can include:

* Persistent pain and swelling on a bone, especially in an arm or leg
* A bone fracture, especially one that happens without any apparent trauma or after only a minor injury
* Loose teeth, if Langerhans' cell histiocytosis affects the jaw bones
* Ear infection or a discharge from the ear, if Langerhans' cell histiocytosis affects skull bones near the ear
* Skin rash, usually on the buttocks or scalp
* Swollen glands (enlarged lymph nodes)
* Enlarged liver, with or without signs of liver malfunction, such as yellowing of the skin and eyes (jaundice) and abnormal accumulation of fluid in the abdomen (ascites)
* Bulging eyes, caused by Langerhans' cell histiocytosis behind the eyes
* Shortness of breath and cough, if the lungs are involved
* Stunted growth and excessive urination caused by hormone abnormalities

Less common symptoms include fever, weight loss, irritability and inability to maintain weight and fitness ("failure to thrive").

Diagnosis

Because Langerhans' cell histiocytosis is rare and tends to cause symptoms that could be caused by more common medical problems, this disease often is difficult to diagnose, and diagnosis can take time. Because of this, your doctor may ask questions that are related to those other medical problems, rather than about Langerhans' cell histiocytosis.

Your doctor will examine you, paying special attention to the areas of your body where you are having symptoms. If you have bone pain or swelling, your doctor probably will want you to have a series of standard bone X-rays and a bone scan. These X-rays may show an area of bone destruction called a lytic lesion, and the bone scan may show "hot spots" where bone is injured and attempting repair. A computed tomography (CT) scan of the spine or pelvis may be recommended if your doctor suspects bone in those areas may be involved. If you have signs of liver disease, your doctor will order blood tests to help determine how well your liver is functioning. A chest X-ray or a (CT) scan may be recommended if you have lung symptoms or if your doctor suspects your lungs are involved based on the physical examination. A CT scan of the head may be recommended if your doctor suspects your brain may be involved.

If your doctor suspects that you have Langerhans' cell histiocytosis, a biopsy may be recommended because this is the only way to confirm the diagnosis. In a biopsy, a small piece of tissue or bone is removed and examined in a laboratory. In most cases, this biopsy sample will be taken from a part of the body that is affected by the disease, such as a portion of bone, lung, lymph node or skin. Blood tests will determine whether the bone marrow is involved.

Expected Duration

How long Langerhans' cell histiocytosis will last is hard to predict. In some cases, it disappears gradually without treatment. This is most likely to happen in people who have Langerhans' cell histiocytosis involving only whose lungs are affected stops smoking. In other cases, the disease can be fatal, most commonly in people who have multiple parts of the body affected. For people who smoke, the disease rarely improves while smoking continues.

Prevention

Because the cause of Langerhans' cell histiocytosis is not known, there is no way to prevent it. However, since almost all cases involving the lungs develop in people who smoke cigarettes, not smoking may prevent the development of Langerhans' cell histiocytosis in the lungs.

Treatment

Treatment depends on the extent of illness:

* Single-system Langerhans' cell histiocytosis — Highly effective treatments include corticosteroids, such as prednisone (sold under several brand names), with or without chemotherapy, and removing the involved are of the bone with a scraping procedure called curettage. For isolated skin involvement, a form of chemotherapy (nitrogen mustard) applied directly to the skin may eliminate the disease. Radiation therapy may be recommended if bone involvement causes a weakened area that is likely to fracture. This may occur in the upper leg or spine.


* Multisystem Langerhans' cell histiocytosis — Chemotherapy may be effective, though success rates are much lower than when only one system is affected. While a number of drugs have been tried, including prednisone, vinblastine (Velban), etoposide (VePesid, Etopophoa, Toposar), cladribine (Leustatin) and methotrexate (several brand names), the best therapy is not known.  (+ info)

Have you ever heard of histiocytosis?

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Have you ever heard of a disease called Langerhan's Cell Histiocytosis? Can you tell me WHY it is not considered a cancer if t acts like one and is treated like one?
Histiocytosis are rare and are more of an immune system disease caused by an excess of white blood cells. The cells look like normal white blood cells. There are just too many of them. These diseases also have the ability to spontaneously go into remission without treatment.

Cancer is when cells loose their normal programming and grow out of control and are able to survive in different environments. The cells are abnormal looking, sometimes barely having any resemblance to a normal cell.

Histiocytosis causes damage by attacking organs as if they were foreign to the body. Cancer usually causes damage by invading organs causing them to malfunction.  (+ info)

Xray, Histiocytosis?

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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

www.pulmonaryfibrosis.org

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)

can anybody tell me more about lagerhans histiocytosis?

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my son was diagnosed w/ that disease when he was 4 yrs old,he undergone chemothephy. he is 10 years old now but he's not completely healed,he is taking a medicine to control his water intake and passing a lot of urine,his growth hormone was also affected,he can't hear from his left ear. .
This is such a rare condition that I have not seen a case in 45 years of treating blood diseases. See WebMD and maybe it can help you.  (+ info)

My friend is from China. Her son, who is in China, has histiocytosis. He needs treatment in america. Help?

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We would like to find a doctor to treat histiocytosis in Bay Area
I believe The University of California, San Francisco has done research on this so you should be able to find a physician there. You should know, he will most likely have his tests done over again here as most physicians will not risk accepting results from another country, even if they could read them. This will obviously add to the cost and teaching hospitals are more expensive than others.   (+ info)

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