Langerhans Cell Histiocytosis

This made me laugh! What would you add?

Hi y'all sorry it's been so long I am still Determined with a Purpose 🙏👍🤝💙

You know what I would like to see go viral?

BASIC HUMAN DECENCY

God Bless🙏
you All!
Stay Safe, You are not Alone, You are 💙Loved💙

September is Histiocytosis month please spread the word

😢I just have to say I know that I have been a huge advocate on being strong and fighting but I'm so very sorry but I just can't do this anymore I can't handle life anymore I don't want to, I just hope it doesn't take too long I don't want to be a burden anymore. I know there's at least 1 person who will be happy and free so sorry I have ruined your life💔. To everyone else I'm sorry if I've disappointed you, please don't hate too. Love too you all❣💜😭🥺

I just have to say I know that I have been a huge advocate on being strong and fighting but I'm so very sorry but I just can't do this anymore I can't handle life anymore I don't want to, I just hope it doesn't take too long I don't want to be a burden anymore. I know there's at least 1 person who will be happy and free so sorry I have ruined your life💔. To everyone else I'm sorry if I've disappointed you, please don't hate too. Love too you all❣💜

I haven't posted in a while. I've had a lot going on, I've been thru a lot. I had knee surgery lots of things done to it. Had some other procedures. I had to go back home (Florida) 2 times. My very very dear brother in law Tom had been diagnosed with bile duct cancer in October😢 my husband & I & our 2 girls who both have 1 child each, & grew up with a very special close bond with Uncle Tom❤ & Aunt ❤Cheryl, Tom was in the hospital the 4days we were there so spent as much time as possible there with him we even had him laughing & smiling we had & made more really special memories🤗 it was so very special!!! By far 1 of the hardest good byes ever!!! Unfortunately he was gone less than 2wks later😪😢😭 we returned less than 24hrs after he went home to heaven!! Spent 2wks there helping as much as I possibly could!! Leaving was very hard n very emotional!! But was also a special day for my niece Stefani it was prom so Hoping that kept them busy she looked spectacular, amazingly gorgeous!!!

Merry Christmas and a very happy and healthy new to all!!

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Johns Hopkins Medicine

{{Histiocytosis}}
{{About this Cancer}}

***Histiocytosis, also referred to as Langerhans Cell Histiocytosis (LCH), and formally called Histiocytosis X, represents a group of rare disorders involving specific cells that normally have important roles as part of the immune system. While the cause of LCH is unknown, LCH can frequently behave like cancer and so is treated by cancer specialists.

Histiocytosis is a generic name for a group of syndromes characterized by an abnormal increase in the number of certain immune cells called histiocytes. These include monocytes, macrophages, and dendritic cells.

A histiocyte is a normal immune cell that is found in many parts of the body especially in the bone marrow, the blood stream, the skin, the liver, the lungs, the lymph glands and the spleen. In histiocytosis, the histiocytes move into tissues where they are not normally found and cause damage to those tissues. These proliferating immune cells may form tumors, which can affect various parts of the body.

LCH is often classified as single system, when the disease affects only one part of the body, or multisystem, when it affects more than one part of the body. In children, histiocytosis usually involves the bones and may consist of single or multiple sites. The skull is frequently affected. Children over five years of age usually have the single system disease, with just bone involvement. Young children, especially infants, are more likely to have the multisystem disease.

Most cases of histiocytosis affect children between the ages of one and 15 years, although people of all ages can develop LCH. The incidence peaks among children between 5 and 10 years old. Histiocytosis is thought to affect roughly one to two out of 200,000 people each year.

Risk Factors
The exact cause of histiocytosis is unknown. However, recent studies indicate that it is caused by the development and expansion of an abnormal Langerhans cell that subsequently leads to the accumulation of other cells of the immune system, resulting in collections or tumors in various areas of the body. Some forms are genetic.

Cancer Symptoms
The first sign of histiocytosis is often a rash on the scalp, similar to cradle cap. There may be a pain in a bone, discharge from the ear, loss of appetite and fever. Sometimes the stomach is swollen and painful. Occasionally, an area of the brain known as the pituitary gland is affected, and this can lead to the child passing large amounts of urine and being very thirsty. Other potential signs and symptoms include: weight loss, jaundice, vomiting, limping, short stature, delayed puberty, mental deterioration, headache, dizziness, seizures, protruding eyeballs, and/or a generalized rash.

The tumors produce a "punched-out" appearance on bone X-rays. Sometimes, children experience spontaneous fractures as a result of these bone lesions. There is often systemic involvement as well, which may affect the whole body and cause rashes, lung problems, gum infiltration, lymph gland swelling, hormonal problems, enlargement of the spleen and liver, and anemia.

Diagnostic Tests
Diagnostic tests include: a biopsy, in which a small sample of skin and/or bone is taken and examined under a microscope for abnormal cells; routine and sometimes specialized X-rays and scans of the bones, the skull, and the lungs; and blood tests. These tests will help the doctor determine if the disease is the single system or multisystem type.

An X-ray of the entire skeletal system may be done to determine how extensive the disease is and whether or not the systemic involvement is indicated.

Treatment
Depending on the extent of the disease, LCH is often treated with chemotherapy and steroids to suppress the function of the immune system and the production of histiocytes. The length of treatment will vary from child to child. Many patients are eligible for international as well as local institutional trials.

Radiation therapy, treatment with targeted X-rays, or limited surgery may also be used to treat bone lesions.

The majority of children who develop histiocytosis have complete recoveries, with older children having the highest recovery rates. Sometimes the disease can recur, so the child will have regularly scheduled follow-up visits in the outpatient clinic as a precaution.

Research
New ideas are being tested to determine the causes of LCH as well as why some patients respond better to treatment than others. New types of therapies are being developed, including new types of drugs, as are approaches that direct antibodies or small molecules to the abnormal Langerhans cell while sparing the normal tissues.

The Division of Pediatric Oncology has a comprehensive program of consultation and care for treatment of patients with Langerhans Cell Histiocytosis (LCH).

In addition, research is being directed toward the development of antibody-targeted approaches for the diagnosis and treatment of patients with LCH.



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Found a page at John Hopkins site. Interesting read on Histiocytosis Cancer. I will post it.

I Got This!!!!

Once again I call upon my friends and family for some positive thoughts and prayers as I've been in the hospital all week, I had been having lots of problems not feeling well was gttn sick, my leg was hurting really bad had some lumps. My nurse sent me to hospital concerned about a blood clot. So I went in and they ran some tests, they said they didn't think so and sent me home I got home abt 6 n 2hrs later my fever was almost 104, I was in agony, my blood pressure was thru the roof, had to call an ambulance. Even tho I have a port I had nurses on each arm with 1 failed poke after another the Dr himself got 1 in finally they gave me some pain med but I had get a cat scan before they could give me stronger med abt 15mins later they took my blood pressure it 277/167 I kid you not sure freaked me out. Been running all kinds of tests I think it's been a week from hell. But I'm hanging in there I think I could use some support. Thanks so much for listening to me

National Cancer Institute

Langerhans Cell Histiocytosis—Patient Version

Health Professional Version

OVERVIEW

Langerhans cell histiocytosis (LCH) is a rare cancer that begins in LCH cells, a type of dendritic cell (white blood cell ). LCH cells can grow in many different parts of the body, where they can damage tissue or form lesions.

LCH may occur at any age but is most common in young children. In infants up to one year of age, LCH may go away without treatment. Treatment of LCH in children is different from treatment of LCH in adults.

LCH in the skin, bones, lymph nodes, or pituitary gland usually gets better with treatment and is called "low-risk." LCH in the spleen, liver, or bone marrow is harder to treat and is called "high-risk."

ENLARGE

Drawing of a dendritic cell. Langerhans cell histiocytosis is cancer of dendritic cells. This drawing was created from electron microscopy data.

Credit: National Institutes of Health

TREATMENT

CAUSES & PREVENTION

This site can give you as well as your health care provider more information.

National Cancer Institute

Langerhans Cell Histiocytosis—Patient Version

Health Professional Version

OVERVIEW

Langerhans cell histiocytosis (LCH) is a rare cancer that begins in LCH cells, a type of dendritic cell (white blood cell ). LCH cells can grow in many different parts of the body, where they can damage tissue or form lesions.

LCH may occur at any age but is most common in young children. In infants up to one year of age, LCH may go away without treatment. Treatment of LCH in children is different from treatment of LCH in adults.

LCH in the skin, bones, lymph nodes, or pituitary gland usually gets better with treatment and is called "low-risk." LCH in the spleen, liver, or bone marrow is harder to treat and is called "high-risk."

Drawing of a dendritic cell. Langerhans cell histiocytosis is cancer of dendritic cells. This drawing was created from electron microscopy data.

Credit: National Institutes of Health

TREATMENT

CAUSES & PREVENTION

So sorry I haven't posted in a while. Things have just been so crazy all year long. I'm just so tired ALL the time mentally & physically. Every since Duke said they can't do the double lung transplant on me because my antibody count is way to high so I feel like the last 5yrs was a waste. They basically said just go home & wait to die I have not 1 but 2 very rare terminal diseases. I've almost not made several times over the past 3yrs thankful for my 2 grankids if it wasn't for them I truly believe I wouldn't be here! Lost my mom last year god how I miss her sooooo much. I know she never loved me the way she did my little brother. But she's my mom. I love her!! I love my step dad very very much he's been in my life way longer than my real dad I lost him to murder when I was 24. I was thankful my step dad walked me down the Isle 34 1/2yrs ago. I'm sorry to sound this way. But I just really don't care anymore my life is just falling apart. I'm so tired I just can't take anymore.

Update: Well I thought things were getting better thought I was maybe gonna get home but in the middle of the night before last, had a major scare they had to call in the RRT team(rapid response team) everything just went haywire my heart rate 190 they had to put me in PCU not sure whats going on they are running all the tests to see what happened? they want to make sure I didn't have a heart attack. They are still trying to stabilize me & my vitals. Thank you to everyone for all your kind thoughts & prayers they are all very much appreciated!!! Guess I could use some more I will update you as soon as I know something.

Unfortunately I would like to ask for your thoughts & prayers please?? As I've been in the hospital since last Thursday, I have pretty bad pneumonia it was just on the left side but tests show sever progression now is right as well. Been very difficult to breathe, I'm coughing up blood like I was in February My Doctor is going to try to drain some of it out yuck!! I will update ya'all when I can ♡♡my love to ya'all

Written by Tammy's husband/caregiver,Just wanted to give Tammy Thompson Swart s friends and family that have been following her situation / health while she has been going back and forth to Duke University for testing and evaluation over the past few years.an update. As sad as it is and as hard as it is to to do, she asked me to let everyone know that the Lung Transplant Team has decided that she will not be able to proceed with a Lung Transplant. They have decided that her High PRA (Antibodies) of 81% would put her at to great a risk for rejection. What is so disappointing to us is that they have known about this for years and have said time and again that it was not an exclusion criteria but after years of trying to overcome High Antibody counts with poor outcomes they are starting to exclude patients at her level. This is still pretty fresh news to us and still sinking in but I am positive that Tammy will remain Strong and keep that Positive attitude that her doctors say makes her a patient they enjoy seeing and one of the strongest they see. We are hoping she can just keep the infections and pneumonia's at bay and keep from getting any Flu's etc so that she can keep defying the odds. Every caregiver says this about their patient and I am sure they all are but Tammy is really amazing and sometimes it is really hard to tell she is as sick as she is. A Heart Felt Thank You to anyone and everyone who has reached out to her and given her their Support and Love and who will continue to do so, I will never forget the Kindness.

Langerhans Cell Histiocytosis

Well I'm back in the hospital, hopefully just a few days. I'm frustrated with my damn body. I've had about all I can take.

Langerhans Cell Histiocytosis

I am a Histio Warrior since 2006 & I have created this so anyone who needs anything to vent, talk, share your story I am here for you!!! If you are family, friends, of histio warrior or angel I am here for you.

I want everyone to know I'm very sorry I haven't been on here lately but between me being very sick & in & out of the hospital so much I'm having a very difficult time with this disease, I came close to not making it to many times! But I am stubborn, hard headed, &:a fighter just like my moma!! It's with great sadness much sorrow to say I lost my Moma Sunday unexpectedly. I love her so much & I dont know how im going to make it through this without her shes my biggest cheerleader & so many other things to me, I'm completely lost!!!!!!!! PLEASE pray for my family we really need it! Thank you

After doing lots of thinking and lots of soul searching, I don't think I'm going to go through with the double lung transplant. After talking to the Dr & finding out the amount of antibodies I have, he said the prognosis is poor & complications & rejections are very high. I think I would rather live my time out feeling better than then the other? I'm not 100% sure? I'm not whining but I would just like to know when does it end? When will it be my turn seems like all I've done lately is get upset I hate being sad & depressed this is not me at all!!! The day after we got from Duke I had to say goodbye to my best friend my heart Cody, was the hardest thing I've done in a long time!! I miss him sooooo much it hurts he was my very special furry child, I know he's in heaven running all over & he will be waiting for me! I LOVE him sooo much & poor Timmy has also been very sad we can see it & feel it!!