Group still operational?

Can l ask a question where is your tumour, the reason l ask is in 2014 to 2016 l was told l had cups and as l wasn’t feeling the diagnosis came into question, l had a second bi-posy and found out the tumour in my spine was NOT Adenocarsonoma but in fact it was a Primary tumour called Chordoma which has the same results as CUPs, can you tell me more.  Also have they tried to find your Primary by doing further tests and what are you being offered treatment wise.

Sorry l wasn’t getting iller during 2014 to 2016 it was when my tumours spread that a second biopsy was called for

Thanks for your reply.   I am sorry that I do not have any very useful information for you.  I have had two biopsies in the last two years.  Both have provided a diagnosis of CUP but no more than that.  A primary source has not been identified.  For treatment I have had mainly Taxol.  Sorry not to be more helpful.  David

I have CUP currently having chemotherapy.   I'm having taxol and carboplatin.  My secondary was in a neck lymph node and other lymph nodes were swollen before chemo. I'm due a scan 24th February after my next Chemotherapy..

Thanks for your reply.  I was also diagnosed on the basis of swollen neck lymph nodes.  Unfortunately this type of cancer seems to receive no public interest.  Best wishes for your treatment.  David

It doesn’t but the medics do know about it. Almost 3-5% of cancers are CUP. The key thing is remember is in this case google is not your friend. Trust in the DRs. The fact that you are two years down the line is encouraging and positive, I’m only 4 months in.  Public interest to be honest, makes no difference to our outcomes, there are many many cancers that the public know nothing about, for me the hardest thing is explaining it to people as people presume cancer is of a certain place, which of course it is, in our cases that source has disappeared or gone...

Thanks for this.  I make a point of avoiding Google on the subject.  I agree that it is not helpful.  My original point came out of frustration with being asked a lot if the doctors had found the original source yet.  Sometimes I just wish I could tell people.  Thanks again for your response.  David

I get that. People look at you like your a bit stupid. It's a frustrating diagnosis

For those of you who are having Taxol chemotherapy, I hope you don’t mind me asking if you have been affected by loss of appetite.   At first this was not a problem for me but the more rounds of Taxol I have, the more my appetite reduces.  Of course it could be something else e.g. the daily medications.   Please don’t answer this if you don’t want to and apologies for the potentially intrusive question.   David

I've just finished my fourth round of and this time my appetite is much reduced from the first three... Despite steroids