Hi all - just feel the need to put a few thoughts down.  

I have previously posted about my squatter which was initially thought "likely" to be a large but benign retroperitoneal ganglioneuroma (discovered in June 2020 during investigation for something unrelated).

Because of the location it was left alone but increased pain and growth in Spring this year meant that surgery was the preferred options.  This took place in August 2021 with numerous side effects and complications.  Histology took a long time - in fact over two months from surgery to a diagnosis of MPNST (malignant peripheral nerve sheath tumour which is a sarcoma).

Unfortunately they were not able to remove the whole tumour due to location so observation was needed.  A CT scan beginning November revealed further growth of the part left behind and also a few smaller "suspicious" nodules on my lungs.  

I am now due to start Doxorubicin chemotherapy on Monday 6th December.  I was advised that due to my current health problems  (bowel problems following most of my pancreas being removed at surgery, significant weight loss etc) it would not be advisable at this stage to combine Doxorubicin with Ifosfamide which I believe is quite a heavy cocktail.

I have done a recent search on the chat room and can't see many current members posting about MPNST or Sarcoma or Doxorubicin so if anybody is in any of those brackets I'd love to hear from you.

I was asked if I wanted to hear "average prognosis for someone with this cancer type" - and I politely declined.  Not sure why - perhaps because I want to feel like an individual and not just part of some statistic ??

Since my initial consultatation with the medical oncologist I have been bouncing off the walls, full of energy, full of prepping my work,  at one point I asked my partner if I appeared "manic" as I just felt like someone had given me a super tonic.  Really not sure what that is all about - I don't think I'm in denial, but am feeling physically that best I've been since March this year (which was when the tumour pain started).

I've asked for a PICC line as my veins are knackered - I had a PICC line in hospital in August for TPN so know what to expect.   I am not considering a cold cap - not sure that I should and even if it's an option ?  I just know that I'm the coldest right now that I've ever been in my life (serious weight loss has seen my BMI shift from 30 in June 2020 till around 18 at the moment so no fat to shoulder the cold weather).

Any thoughts or comments would be welcome.

xxx