Langerhans Cell Sarcoma

Langerhans Cell Sarcoma

Maria Monteverde


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Joined Feb 4 2011
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FEMALE
Sydney, Australia
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Langerhans Cell Sarcoma

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About Me

I am Daniel's mum. I started this website to try and link people with this condition and their friends/ relatives  together. The more we know about the few cases out there and their treatments, the better it will be for those who have been unlucky enough to be afflicted with it. Even though there are so few cases documented in the world, there is still the chance to be able to help our doctors by finding everything there is to know in the literature online and through the experiences of those that have gone through it or are going through it now.

Sarcomas are a rarity in themselves but Langerhans Sarcoma is so rare that doctors can only use their knowledge and expertise to formulate treatments. Knowing what works and what doesn't can help them treat our loved ones. 

We live in Sydney Australia and Daniel is the only case in this country .

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1 Comment

Reply Maria Monteverde
9:06 AM on July 1, 2012 
30 months since Diagnosis and we have had another clear scan! The PET scan showed slightly higher readings in the cervical lymph nodes but further scans have shown no tumors. Brown fat can sometimes increase the SUV readings on a PET scan.