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pheochromocytoma, malignant, not genetic

PostPosted: Thu Dec 03, 2009 4:03 am
by janerichards27
Hello, I have posted elsewhere on this forum, pls bear with a non- techie!
We are trying to contact anyone, anywhere :respond: with a diagnosis of non genetic/non familial malignant pheochromocytoma (phaeochromocytoma = UK spelling). The stats suggest approx 60 people a year receive this diagnosis in the UK - it is very very rare but surely someone else in the world must have the same condition. My husband has recently started Sutent (Sunitinib) to try and reduce his symptoms and tumours in size. Please get in touch if you have any experience of this rare endocrine system cancer, Thanks Jane & Ian