RareCan. - any one aware of this - trials for rare cancers

  • 6 replies
  • 46 subscribers
  • 133 views

friend sent through a link as i mentioned the sarong trial, just having a look now, any one have any dealings with

thank you jules x

  • Yes Jules I am on the SARONG trial, they will take over my post chemotherapy surveillance when my treatment is finished 

  • thank you, was also told about that when on the ward, so have just emailed to register interest, although not sure if will be viable if they have cut it out already??my next step is immunetherapy at stoke mandeville, assume  same ward where had chemo for breast cancer, talk about full circle.

    have you started any treatment with sarong, and are you eating grown up food yet, have no appetite, really have a mental block on this, i knew things would never be the same but christ!!

    hope you are doing well BB take care jules

  • You should still be eligible as they don't get involved until after your treatment has finished. I was only on purée food for a couple of weeks post op. I never used the JEJ feeding tube at all. I'm eating everything now albeit in very small amounts 

    Anthony x

  • My advice foodwise would be to concentrate on strong flavours, very sweet, very salty, very sour etc depending on your own tastes! The combination of chemo and drastic stomach surgery leaves you with very little appetite or hunger or taste. I tend to graze all day on a variety of nuts, dried fruits, bananas etc. Also high protein shakes are ideal to increase your calorific intake.

    Anthony x

  • thanks anthony, off to tesco tomorrow then, if i feel up to it, scared im going to overfill it, ridicolous

  • Better to have too much than not enough!! Lol Joy