Hi,
I have only recently diagnosed with Medullary Thyroid cancer after finding a lump in my throat. I have had a total thyroidectomy and was told that it is a slow growing cancer with nothing to worry about. Three months later, my lump is back, my calcitonin level has hit the 20,000 mark and it has spread to my liver, spleen, ribcage, vertebrae, breastbone and pelvic bone.
I was tested for the latest expiriment with 177- radio peptide in fremantle hospital, but unfortunately the cancer cells have not responded enough to be accepted for this trial.
So now I am in my first course of chemo (Temozolomide combined with Xeloda) and yesterday was my first day of good old fashioned vomiting.
Apparently there are no other patients with my disease in Perth so I was hoping to find someone out here. Official name is MTC M.E.N II.
Please if you know of someone that has the same disease could you please ask them to contact me. It is scary seeing it growing so fast and I would like to know if others have experienced the same thing and maybe find a treatment for it.