We live in the UK. My husband was diagnosed with malignant (metastatic) pheochromocytoma (a very rare endocrine system cancer) in January 2008 aged 39 after collapsing with high blood pressure.
His primary tumour "pheo" (1lb 1oz) was removed along with his Left Adrenal gland in Feb 2008 but the disease had already spread to his lungs. He has multiple pheos spread across both lungs. 3 types of radiation treatment didn't work, chemotherapy was not recommended so after a lot of research and discussion with people in the USA and Canada we decided to pay privately for the drug Sutent (Sunitinib) in September 2009.
He was dying so we had nothing to lose and the 6 pieces of published research we found offered hope. He is on his 2nd course of Sutent now and will be scanned in 2 weeks to see if the tumours have reduced. His biochemical markers had dropped significantly after 2 weeks of taking Sutent so we are hopeful.
Our local health authority won't fund the drug (even though it is funded for renal cell carcinoma in the UK) despite the recommendations of the consultant oncologist because they say there is not enough evidence it will work on this rare condition. As far as we are aware there is no-one else in the UK with non genetic malignant pheochromocytoma and as it is so rare there will never be "sufficient" evidence so we are stuck in a catch 22 situation.
We have fund raised and have enough money to pay for 5 treatments. The expectation is that it will cure him, it is not considered a life prolonging treatment as in renal cell carcinoma, the impressive if limited research suggests a "complete response" is possible.
We would like to hear from anyone, anywhere in the world who has experience of non-genetic malignant pheochromocytoma.
Thanks for listening
Jane & Ian