This is such a wonderful site. I’ve read, learnt a lot and found out bits and bobs. My wife had colon removed nearly 5 years ago. 12 cycles of FOLFOX as a “Mop up”. All good after that. Regular checkups. Until August 2018. She noticed Bowel changes. Blood indicators were climbing higher too. PETscan followed. It’s back, spread to peritoneum. Started on FOLFIRI escalating to FOLFOXIRI because of a mixed response to FOLFIRI. In March we found it’s spread to her lung. Taken off chemo. Not had any treatment now for 4 weeks. But in meantime we were admitted to Royal Marsden hospital for a trial. Told she was fit enough to go on a particular trial, hoping to start this week. But today our consultant just found out she did not fit the exact criteria for that particular trial. But was told about another one that’s more suitable for her. within the next 2 weeks.
She’s Braf 600e RAS wildtype, MSS. If, for some reason she’s not suitable for the next trial, consultant said he’d put her onto LONSURF. He’s a bit reluctant to get her onto LONSURF right now, because she’s still fit and active, and felt that if he put her on LONSURF now, and a trial then came along, possible side effects or lack of fitness could jeopardise her chances of a trial. But in the meantime I’m going to look for and get other opinions from other hospital’s. Plus consultant is trying to find a way of getting onto BEACON. He is very good, very helpful and is willing to help me in searching for a treatment.
Has anyone here had any experience, gained any knowledge or any help to offer us in this? I’m trying my very best, it’s not easy, but to be honest, I’m really struggling with all this. But obviously not showing it to my wife. But I’d do absolutely anything to help her, she’s my everything.
I am so sorry to hear about your wife and that this disease has spread. I can understand how you are feeling whilst trying to remain strong for your wife and at the same time trying to find alternative suitable treatments for her your mind must be cluttered with all reading you are doing and trying to sift through the endless information that you are collecting.
I wonder if asking questions to our cancer specialist nurses would help you, they can be contacted in two ways.
1. By posting the above thread to the Ask a Nurse page (click on the green text to open up the question page) the nurses aim to give you an answer in two working days.
2. By telephoning the telephone support line and asking if you can speak to a nurse (you maybe told that you'll get a call back) the support line is open every day of the year between 8 am and 8 pm and the number to call is
0808 808 0000
Not only can you speak to a nurse you can also ask questions about anything else that is causing you concern (financial, welfare, benefits and energy) in fact you can speak to the friendly advisers about anything that you want.
Clicking on the green text above will open up new pages for you.
I hope you are successful in finding a suitable trial for your wife, I am sure that the Royal Marsden consultant will be of great help to you in finding a trial.
One thing you will see cropping up here a lot is a reference to Dr Google it's so easy to look at it and search but please remember the information maybe old and out of date or are worst misleading better to stick to this site for asking questions and for advice.
You are always very welcome to come on here to ask questions to have a rant and rave and generally let off steam if you need there's always someone about to listen to you.
It is tough navigating clinical trials on top of everything else . A former scientist in the field of cancer developed a world wide clinical trial finder for CRC MSS patients when he realised from his own experiences how difficult a system it was to navigate . It should give you suitable trails in the UK . Not sure how local they are !! But worth a try .
Hi . I’m afraid I don’t have any experience of this type of mutation although your oncologist sounds to be really good. I just wondered if you’d looked at some of the posts on the Bowel Cancer UK Board or thought about posting on there too? I typed MSS into the search box and a few recent posts came up or you could start your own?
Hope a suitable trial comes along for your wife soon - you sound to be doing an amazing job supporting her.
Another poster had raised it . CXD 101 . I only briefly looking into it but my friend is having a fantastic response to Immuotherapy just now so worth investigating.
