I'm rare : Hello I got my results... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

5,944 members3,545 posts

I'm rare

winterrose-23 profile image
4 Replies

Hello I got my results yesterday An Iv'e got a rare disease Its called LANGERHANS CELL HISTIOCYTOSIS Iv'e prob always had it but it goes in remission sometimes trying to understand it at mo its something to do ith my white blood cells i make to many so they can cause lung lesions or affect other parts of the body all my symptoms even the little scars that come an go over my skin are to do with it the tiredness aches bad memory breathless is all part of it they are going to send me for reg check ups to make sure it dont get any worse if that happens they treat it ith chemo or radio the lesions can become malignant but their not at the moment yaeh lol they said its usually in children not someone my age so think ive alway had it thats why ive been ill on and off all my lifes a rare disease involving clonal proliferation of Langerhans cells, abnormal cells deriving from bone marrow and capable of migrating from skin to lymph nodes. Clinically, its manifestations range from isolated bone lesions to multisystem disease. LCH is part of a group of clinical syndromes called histiocytoses, which are characterized by an abnormal proliferation of histiocytes (an archaic term for activated dendritic cells and macrophages). These diseases are related to other forms of abnormal proliferation of white blood cells, such as leukemias and lymphomas. has anyone here got this ?

Written by
winterrose-23 profile image
winterrose-23
To view profiles and participate in discussions please or .
Read more about...
4 Replies
Jenco profile image
Jenco

Sorry to hear your diagnosis. It's not something I have heard of. It's good to know that your doctors have diagnosed it and have got a plan in place. It must have come as a shock to have something so rare but a relief to know that there was a cause for all your problems over the years. It can't have been a bundle of fun feeling rough and no one knew why. Not knowing is one of the hardest things to deal with. I hope it behaves itself and you don't have to get bombarded with treatments. Thinking of you. All the very best. Jenny

winterrose-23 profile image
winterrose-23 in reply toJenco

Hi Jenco thanks for replying I'm still here just a tad more tired from hospital visits test ect but at least the Drs are checking me over thoroughly :)

gerribk profile image
gerribk

YES I AM A 59 YR OLD FEMALE DIAGNOSED 2 YRS AGO AFTER AN OPEN LUNG BIOPSY .I WILL BE GOING FOR MY ASSESSMENT AT THE TRANSPLANT CENTER IN CHARLESTON SC ON AUGUST 10, 2015.

winterrose-23 profile image
winterrose-23 in reply togerribk

Hi Gerribk Thats how I was diagnosed They at first told me I had cancer in both lungs and inoperable so Ive something to be great full for don't plain on going anywhere just yet X

Not what you're looking for?

You may also like...

Is No Evidence Of Small Cell Lung Cancer after Three Chemotherapy Cycles a Good Response or the Norm

My Darling Wife after Years Suffering from Lupus was Diagnosed with Limited Stage Small Cell Lung...

I'm on TV! Thanks BBC

After 20 months of endless campaigning to raise awareness for lung Cancer, I have finally got my...

Docetaxel & Nintedanib for Non Small Cell Lung Cancer with Mets to the bones

Feeling quite helpless today. My hubbie was diagnosed in August 2016 (then aged 58 years and...

Biopsy Results

Even though I've commented on other posts, this is my first. In July I coughed up blood, saw the GP...
Ianhick profile image

Cessation of Pembrolizumab immunotherapy after two years

Just wondering how others are faring who have completed the 2 year maximum treatment period on...
Manninmaid profile image

Moderation team

See all

Top community tags

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.