Overview of Pulmonary LCH - Dr. Robert Vassallo, MD

Dr. Vassallo gives an overview of Pulmonary Langerhans cell histiocytosis (PLCH) as well as the symptoms, diagnosis, treatment and long-term effects.
Questions:
What is pulmonary Langerhans cell histiocytosis (PLCH)?
What is the link between smoking and PLCH?
What are the symptoms of PLCH?
How is PLCH diagnosed?
What are the treatments for PLCH?
What are the long-term effects of PLCH?
What does the future hold for patients with PLCH?

[@sailorgio]

I am 23 and I was diagnosed a month ago by a CT of the chest due to a 1 week cough crisis. Heaps of cysts and cavities. I feel no cough or dyspnea. I do exercises everyday and surf once a week. Been a smoker since my 16, three months clean now. I'll start chemotherapy next month. I wish I can revert this. God help me

[@Histiocytosis]

Wishing you the best as you start treatment. Quitting smoking is a major step but we know it's not easy. If you'd like to connect with us, please don't hesitate to reach out to [e-mail] or call/txt [phone].

[@sailorgio]

@@Histiocytosis i already have quitted, 3 months now

[@sailorgio]

@@Histiocytosis and I'll sure will contact you guys. Thank you very much !!

[@twinkeez2003]

I am praying for you Giovani.

[@Codysmom29]

I was diagnosed 37 years ago. Over the years, each time I go sick, it was blamed on many things. Now that I'm doing all work up for a lung transplant, I'm tulle that it's not emphysema but the same as when I was 18. There is a good chance it's in my brain now. I'm getting outstanding doctors at UCLA here in Los Angeles area. Good luck! P.s. My doctor said it rare, only 2500 know cases in the U.S.

[@balkhulal2394]

I have this too I'm only 26 years old I fell very bad

[@kimcastiglione2251]

I was diagnosed last year with this disease from I guess
Smoking for 30 yrs ?! Why some get this while others don’t & some people smoke
More then just cigarettes is unknown . I also have chrones disease which is autoimmune disorder that effects my small intestines so I wonder if this has a hand
In getting this disease? None of my doctors have any answers to
That . All I’ve heard after a biopsy and diagnosis is stop smoking 🚬 That’s it. Will this get worse or
better ? I’m not currently on any medication for this at this time and
Praying 🙏 I never have to .
I hope it works & don’t spread to my brain or
Bones . I don’t know
Much about this God knows I have enough to deal with having chrones period & was now diagnosed with cancer of a lymph node and facing radiation ☢️.

[@twinkeez2003]

Its really weird that my biopsies were sent to the Mayo Clinic and they could not determine what I had... It took a major surgery to diagnose me... No one in my state knows how to treat me and I need help.. Prednisone was some what helpful but not enough...
Do you know of a doctor here in Oregon? I need a specialist because my oncologist is inexperienced with Adult Pulmonary LHC.

[@jeffreytoughill8148]

+twinkeez2003 Hello: Try contacting the clinic below. Jeff Toughill
Oregon Health and Science UniversityClinic Director(s) - Matthew Drake, MD / Alan Barker, MD
To schedule an appointment contact:
Katherine Simons
[phone]

[@twinkeez2003]

Thank you so MUCH!!!

[@marymcleod2181]

Mine was diagnosed by doing a lung scrapping

[@sailorgio]

Hey...im 23 and i was diagnosed a month ago. How are you doing out there ?

[@twinkeez2003]

@@sailorgio Hi there. I am in remission since 2016. They used prednisone for me and it actually worked. I had over 75 nodules and they are all gone now. I hope that this helps.