Metastatic Epiteleloid Angiomylipoma /pecoma

[MariusNicholas]

Hey. I am trying to get some responses on behalf of my dear aunt (42years old) who is diagnosed with a very rare type of cancer: Metastatic Epiteleloid Angiomylipoma/  pecoma.

She has had operations earlier, trying to get rid of it. But it has come back. Right now the cancer has spread under the ribs and it's not longer possible for the surgeons (at least in norway), to remove it. She has therefore tried the medications: AFINITOR and VOTRIENT, but the medications have not worked. They have only given her more pain.

Because there are so little information to get, we have shared her story on facebook, and now I am posting it on forums, in hope of getting some input on possible treatments/procedures. Please reply, if you know something that may help her, or know of someone for us to contact to get help or info. 

[Budgie]

Hi MariusNicholas,

 I am very sorry to hear of your Aunt’s illness, & I don’t know if I can be of much help to you as it sounds like a very stubborn form of cancer. 

In Australia there are a couple of treatments available that your Aunt hasn’t had.   One is the immunotherapy treatment called Nivolumab, which is given intravenously.   The other treatment is another oral tablet called Cabozantinib, which is only becoming available on the PBS in Australia from the 1st June.   If you’re Aunt is in Norway, obviously I don’t know if these drugs are available there. 

I do wish your Aunt all the best with her treatment. 

Budgie

[Budgie]

I thought I should add that these drugs are currently used for Renal Cell Carcinoma. I don’t know if they would be of any use for what your Aunt is going through.

Budgie