My 22yr old son was diagnosed with Pulmonary Langerhans Cell Histiocytosis. Anyone suffering from this and what treatments are you doing?

[MLinder]

[Toci]

Sorry, I had never heard of it before on here. May I suggest you ring the BLF (they close for the weekend at about 5 today but will reopen on Monday morning). To access them, click on the red balloon (top, right) for contact details. Good luck.

[MLinder]

I'm new to this site. What is the BLF?

[teaky-19 in reply to MLinder]

british lung foundation press on red balloon top of page

[Hidden]

Depending on which country you are residing, this will likely affect the treatment available to you and probably based on your son's individual needs as a patient. If you are living in the UK it will depend also if you are an NHS patient or a private patient.

BLF (British Lung Foundation) - to contact - click on the red balloon top right. helpline is manned 10am to 5pm weekdays. You can email or just access their main web home pages, on the BLF website link there is a search box, from there you can search for more information and treatment about LCH.

Best wishes, hope you find the information you are looking for.

[jac493]

I too have adult plch very rare indeed no point phoning blf they tell u to google it . Go to the histio.org website they have a great web community there . Best wishes to ur son .

Ps i was only diagnosed in Aug lst yr there are others on here with it. Feel free to pm me .x Jackie

[IrishM in reply to jac493]

Hi Jackie I will PM you now!

[IrishM]

Hi, please google Jeff Toughil, Histiocytosis community. When I was diagnosed that is what I did and he rang me and recommended doctors and to join the histio community on facebook. It took me a while to do this as I wasn't sure about groups online. I travelled to New York from Ireland to see a doctor, which wasn't as expensive as I though it would be and I have never looked back. I met the doctor once and came back with a treatment plan. I finished 6 months of chemo this year which wasn't as bas as I thought it would be, and I still have my hair. On this facebook site we are all asking questions constantly and everyone helps to answer and give advice. I don't know what I would have done without it. One thing is for sure, I would not have got the treatment as in Ireland all the doctors were doing was monitoring and saying come back in six months which was a joke!

[jac493 in reply to IrishM]

Hi Irish m hope u dont mind me asking did the chemo help and did u ask docs in Ireland for treatment . I live in scotland and am not being treated but am improving. I also contacted Jeff he is going to send me info. Best wishes Jackie .

[IrishM in reply to jac493]

How do I private mail you lol..how stupid do I sound...~Jackie send me a message and maybe then I can reply back

..

[Lin76 in reply to IrishM]

Thats all they doing to me in USA. Pennsylvania. Im 58. Come back in 6mo. I had 5 cts in one year 3 on lungs 2 on my kidney. I have nut cracker syndrome too and hasimotoes thyroiditis. Ncs,very rare. Thought that was bad till now they tell me this Langerhans. Now they calling it esonophil neoplasm,is it cancer right?I got to try face book too. Im leary bout it.

[Kiwi6 in reply to IrishM]

Hi IrishM,

I hope you are on the mend. Was hoping you could answer some questions for me. I have just been diagnosed with Pulmonary Langherhans Cell Histiocytosis. Like you the doctors have spoken only about monitoringand not treatment. Do you mind me asking why they decided on chemo for you? Is it necessary in all cases? Thanks for any info you can give me.

Best regards

[Hidden in reply to Kiwi6]

Hi Kiwi6 I thought I'd best mention that you've replied to a post that is 5 years old. To ensure that everyone can see your question, It might be better to post your question as a brand new post on the main forum to ensure that everyone is able to see it and respond to you

Best wishes,

Ben

[dorie]

Dr Chu I believe is the histio expert there. On Facebook we have an adult community and a family of histio patient! Histio.org is definitely a good choice as they donate 100% to research!! Many adult plch in our group if you or he is on Facebook search "adult histio warriors" and our histio family...Twitter is @Histio Support please join...we can help!!!!

[IrishM in reply to dorie]

Is that you Nicole lol...

[diggerruth]

Hello, I am new to this group ad would just like to say how helpful every appear to be.

Although I have a different complaint to you Irish M I can emphasise with you. I have C.O.P.D. I also hail from Ireland.