FULFOX Chemotherapy

Hi Jk90 

Sorry your post got no takers, I did a search on the forum for fulfox that you can see here https://community.macmillan.org.uk/search?q=fulfox#serpq=fulfox not many responses and many not very recent I am afraid and possibly why nobody replied here.

Hope that helps a little.

<<hugs>>

Steve

If you have Facebook please.join these  groups For  patients only cholangiocarcinoma support uk & Europe. Also cholangiocarcinoma support (uk & Europe). Also the charity for this cancer AMMF community. I sadly am part of these groups and been fight this awful cancer for nearly 5 years  

Thank you so much Steve 

Hi Nancy, hope you are doing well. What treatments have helped you the most? 
x

1. Hi I was inoperable had 8 cycles of Gem/cis. This then shrunk my tumour to operable . Had a resection left side of liver. 6 months of chemo tablets.  Sadly just over a year later small tumours back in liver. Started on Gem/sis again with am immunotherapy added. After 8 cycles, now just on immunotherapy and waiting for gene testing to see if I can get on a trial. They have talked about folfox with me but not yet as my bloods play up and tumours not big enough. Please join the Facebook groups as this is a rare cancer , I have never meet anyone with type, so it good to take to people on there especially the patient one. Take care x 

Thanks for your reply Nancy. I was asking for my sister who is only 42 and been diagnosed with this a year ago, also a neighbour was diagnosed with it this year.  seems to be getting more common now. I attended the AMMF conference which is on their website now which was really informative with lots of experts dedicated to finding new and effective treatments. Have you had a consultation with Prof Bridgewater? X

Yes I went to london UCH Macmillan hospital. He has advised my consultant about a few things. Waiting for biopsy gene testing to see if I can go on a trial drug. He's a very nice man  I felt very at ease with him and you can ask him anything. 

That’s good to know Nancy, I thought he was amazing at the conference, very committed and compassionate. I will encourage my sister to go. I wish you well with your treatment, stay strong and positive x

Hi nancy thank you so much for your reply.  My must is inoperable as it had spread before it was found. Her oncologist is lovely however she doesn't seem to be very positive about chemo and keeps referring to quality of life. It feels like she's advising not to go ahead.  She is going ahead with chemo. I wondered at what stage did you go to see prof Bridgewater? I have seen alot about him on the Facebook page. I feel her consultant is very good so wouldn't want to undermine her but I do see alot of people going to see thus doctor? I hope you are doing well.  

Thanks 

We paid for a private consultation with Prof Bridgewater. Which cost £400 and should not be.any higher, Face to face in London. Even though I was diagnosed in Dec 2019. I only went to see him this May 2024. He has advised my consultant on things and hopefully when I see her this Friday all those things have been put in place. Don't be afraid to ask to get a referral as not many consultants are up on this cancer and should be willing to do the best for your sister. If you are willing to pay you usually see him within a week f2f or have a zoom call with him. Which hospital are you at, presently X