i am a medical trial lol

Less than one minute read time.

meant to put this in last blog post, i seem to be some what of a medical trail.  as the type of cancer i have is so rare there aren't enoguh people with it for any medical trials to have been carried out before.  

therefore this means all they know about treating me is roughly which type of chemotherapy to try. 

they have said all they are aiming for is to maintain its size,  if lucky shrink it, but they have made it very clear that it can't be cured.

so by the time i was finished talking to my oncologist i felt like a crash test dummy, or guinea pig, where through hope fully not a lot of trial and error they will find something that will work!!

Anonymous
  • FormerMember
    FormerMember

    Hi my husband also has a rare form of cancer that has now spread and has been offered chemo to delay growth but have been told it is not curable, the trouble is at the moment he acts and looks so well so find it hard to comprehend so I can really empathise with you

  • FormerMember
    FormerMember

    Hi I am just starting on a drug called sutent or sunitinib I too have paraganglioma so far I've had mibg treatment which worked for some of the tumors but not others and I ended up having surgery on my spine and neck due to cord compression aterwards .I also had some external radiotherapy on my neck and back. I've never been offered chemo just radiotherapy.