Had enough feel like giving up

Hi HazG 

There are some tricky  rules around the use of Cetuximab. I am really busy over the next day or two but I previously looked into this for someone else and it’s better to go armed with the up to date guidelines for use age to see if there is a loophole.

I totally understand you feel backed against a wall but give me a few days and I will pass on the information to you .

Once you have had a good look at the guidelines you may be able to ask more pointed questions .

Court 

My mum has gotten nine months out of it as a single agent and it’s been so much easier than chemo . Not sure how much longer she will get out of it but it’s done a great job . 

 https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/general/265772/recurrence-in-lymphs/1932382

Actually I found it quicker than I thought . Have a look at this thread . I will also link in Star74 as she is full of knowledge.

But click the links and have a good look at the guidelines . It sometimes good to get informed .

Court 

Sorry to hear this HazG ,

I was in a similar situation.   2 years ago I had good results with folforinox  and Cetuximab, a complete clinical response which got me to a liver resection.  So, after a recurrence a couple of months ago, I was keen to add it in again.  I was told a flat no and I would have to self fund.  I went back to my Onc with the guidelines that court kindly found for me and it was still no.  So, I decided to obtain a liquid biopsy,  I thought if that proves my tumour would respond well to it, I would seriously look at sefl finding.  I'm not sure where you are based but there is a trial called TARGET which gives you the liquid biopsy on the NHS and could potentially help gain access to treatments that you may not be able to access ordinarily. 

I'm really lucky with my Onc as she has now found a way for me to have cetuximab and I had my 1st cycle last week.

I know the makers of cetuximab have a scheme where you pay a fixed fee and can have unlimited cycles, it's not cheap at around £10k but it works out cheaper than paying for each one individually.   I had one of the macmillan finance team round the other day, they were going to help me with a grant from a local charity so it may be worth contacting them.

I would like to know why your oncologist has changed his mind, it may help if you look through the rules, and request a tel consultation with him so he can explain the reasons for not offering it now.  If you are unhappy with his explanation I would seek a second opinion.  

You are your own best advocate, leave no stone unturned!

Michelle x

Thank you both so much Star74 &court great information.

He didn't want yo give it because it causes diarrhoea and because of my ileostomy and previous experiences of it he thought not to give it but my point is he didn't give me that choice he made that decision himself he shoukd have at least given me a choice.

I would push for it, that doesn't seem a good enough reason, unless you have had a bad experience before with diarrhoea?  All treatment can cause diarrhoea, that doesn't mean that everyone will suffer and if you do, there are good remedies like loperamide or stop the treatment. 

Maybe seek a second opinion ?x

Exactly our thoughts. I was interested in the trial you mentioned I'm in Worcestershire how woukd I find out ,? 

Xx

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/clinical-trials-search?search_api_aggregation_1=Bowel%20&f%5B0%5D=field_trial_status%3A4386
You also might like to have a look at some of the current trials . Normally when I look not much is going on but definitely more now . One specifically looking at Cetuximab.

Court 

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-study-of-genetic-characteristics-and-suitability-for-targeted-cancer-treatment-target
I am reading that this one has closed but might not be the case .

Why not phone our helpline and ask about liquid biopsies. They will have all the info .

Court x 

The full name of the trial is:  TARGET National. (Tumour Characterisation to Guide Experimental Targeted Therapy)  

I took part in October, hopefully it's still open.  The Data Controller is The Christie but many hospitals are taking part, I had mine done at Southampton.  The trial looking at cetuximab that court  attached also looks interesting.

Keep us updated!xx