LCH -Langerhans cell histiocytosis in jaw

[mary27bogd]

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 Bulgaria and the more I read about this medical condition the more I think the better solution its surgery. Here the doctors also don't have any experience with that condition and I don't want to be their e

xperimental mouse.Is it here somebody who has that diagnose only in a bones or one located jaw bone,similar how is with me and can give me information about some expiriensed treatment or some clinic in Europe who have expiriance with LCH. I am 27 years old.

PS: I am sorry for my bad english

[sassy59]

Hope someone can help you Mary and l just want to wish you well. Your English is good by the way. Xxxxx

[mrsmummy]

I hope someone here can help you. Welcome to the forum.

[mrsmummy]

If you check here

healthunlocked.com/search/l...

you will find other posts on this subject although I think most of them will be lung related.

[mary27bogd]

i ll check .thank you

[Min97]

Hi, i am sorry you have this disease.my mom was recently diagnosed with this in her lungs. We are in the united states and know one here seems to know much about it either. Frkm what i have read it can affect many areas of the body. Please have your drs look in other areas of your body as well. Do you smoke? If so check your lungs too, your brain, and bones. Prayers for you.

[mary27bogd]

They already made me I had already Computer tonographers and they probed my spinal cord and I am clean everywhere else witch is good. So I have this one located lower jaw bone.I already saw the regular information in internet about smoking and all. I just hope here can be somebody with same one located case as me. And can give me a advise if it's better to do directly surgery or try with treatment (witch I really don't want do it becouse of many reason and also there it's no garantire it ll works.)

And also in my case they told me my jaw it's in it's way to broke.

I hope your mother is gonna be okay

[Jinny455 in reply to mary27bogd]

How are you now?

[Dedalus]

Hello and welcome - sorry I can't help Mary but wish you all the best with your decision & outcome

[Lin76]

Hi I have langerhan of lung. No one seems to know,or im contacting wrong places. I also have dental problems. My gums are turning black and all old fillings falling out teeth crumbling. I dont know what to do either or who to go to. In usa. Im praying now for you too.

[Jinny455 in reply to Lin76]

Have you tried Newcastle they have a team dedicated to LCH. As a child I had LCH for two years before any action was taken. I was dying. I lost my forehead and was fitted with a plate. I get chronic daily headache syndrome. Never had a headache before surgery. Was told that the surgery stopped the disease in its tracks. I wish I had died. I think it was my time. Chemo was not invented in 1967 so glad it wasn’t.

[Jinny455]

I lost my forehead to this disease they cut it out and it gives me pain now 50years after

[Jinny455]

Have you tried Newcastle they have a team dedicated to LCH. As a child I had LCH for two years before any action was taken. I was dying. I lost my forehead and was fitted with a plate. I get chronic daily headache syndrome. Never had a headache before surgery. Was told that the surgery stopped the disease in its tracks. I wish I had died. I think it was my time. Chemo was not invented in 1967 so glad it wasn’t. I also was friends with a gorgeous woman who had surgery on her jaw. She was a croupier. I don’t know why they do chemo it is not cancer.. It is a rare disease with many variants. Also known as an orphan disease, there is an organisation called Orphanet. I am a member, I’m also a member of Histiocytosis Association in America.I just hope that you make the best decision