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Beating Bowel Cancer Community

Bowel cancer treatment and side effects

MikeBuzz50

Can I go back on Cetuximab?

I was diagnosed in May 2016 with bowel cancer which had spread to my liver and later, now, to my lungs.

I had Cetuximab with 5FU and Irinotecan from July 2016 until December 2016 and then a break for 3 months. The Cetuximab was reducing the cancer, the break was because of side effects to give me a chance to get back to 'normal'.

Is there any way that I can go back onto Cetuximab? I am an NHS patient near Southampton.

I have had 2 other types of chemotherapy since December 2016 but both have stopped working so now I don't appear to have any other options.

I am a fit and otherwise healthy 63 year old male.

I had an Ileostomy in July 2016 as I had a blockage which could not be cleared with an operation and had a stent which failed.

I have local support nurses at our brilliant hospice hear in Lymington and will also contact them on Monday but would appreciate any advice please.

Baxter2

Good morning @MikeBuzz50 and a very warm welcome to the forum. I hope you’ll find lots of information, friendship and advice if you want it.

I think the best people to ask about the Cetuximab is your oncologist and your support nurse.

There’s are ‘rules’ around the use of Cetuximab (and similar drugs) whereby if there’s a break of perhaps 4-6 weeks you’re not allowed to restart it. In my area (Fife) I was told that if I had a laparoscopy and a break of 4 weeks, I would not be given Cetuximab again. This is a cost cutting excercise and not based on patient need or benefit. I think different trusts have different rules so it would be worth asking. I also believe that oncologists can appeal decisions and fight your corner but unfortunately my oncologist wasn’t fighting mine! I wrote to the Scottish government about this and was told it is up to individual trusts to manage this and it is not a government decision. It’s probably similar in England. I did contemplate involving my MSP but at that point, I switched from NHS to private care using my health insurance and got Cetuximab again. (I’m still on it)

There are some forum users who have had funding reinstated and hopefully they will be along very soon to share their experiences.

Will you let us know how you get on?

Sending all my very best wishes,

K 💚💜💛💙❤️

Skye

Hi @MikeBuzz50 your situation sounds so similar to mine. I had to determine if there was a potential clinical benefit for going back onto Cextuximab and separate that from the funding issues. My NHS consultant said it may well benefit me again but the funding would not be available. I then decided to go private and I am now on weekly infusions. It is so frustrating that a route back into effective treatment is blocked for so many of us. Good luck to you.

Bear G

Hi @MikeBuzz50 and @Skye
This was one of the crazy rules I highlighted when I presented to a medical conference last year as part of IMPACT. It makes no sense when you’ve seen clinical benefit previously.
There may be a possibility for your oncologists to apply for funding and the local approach may differ.
I’m tagging @Charlotte Nurse Advisor and @RosemaryA for input and to ask if this could be discussed as part of prioritising the new charity’s work.
Big hugs
Bear
:x::x:

Sean

My team managed to get mine back for me within a few weeks it seemed. Hope too god they can do the same for you! Good luck @MikeBuzz50

RosemaryA

Hi @MikeBuzz50 and thanks for tagging me in @Bear G - yes, we're aware of this issue, which does seem very unfair. We're now part of a much larger team which includes policy experts so let me refer this to them for comment. We'll be back to you ASAP, although please do bear with us while we settle into the new organisation.

MikeBuzz50
Quote from @Skye:
Hi @MikeBuzz50 your situation sounds so similar to mine. I had to determine if there was a potential clinical benefit for going back onto Cextuximab and separate that from the funding issues. My NHS consultant said it may well benefit me again but the funding would not be available. I then decided to go private and I am now on weekly infusions. It is so frustrating that a route back into effective treatment is blocked for so many of us. Good luck to you.

Hi Sky and thank you for this.
How is your weekly infusion going and could I please ask what the cost is?
Any other information would be appreciated.

MikeBuzz50
Quote from @RosemaryA:
Hi @MikeBuzz50 and thanks for tagging me in @Bear G - yes, we're aware of this issue, which does seem very unfair. We're now part of a much larger team which includes policy experts so let me refer this to them for comment. We'll be back to you ASAP, although please do bear with us while we settle into the new organisation.

Thanks for your reply Rosemary.
Does your team have any more information yet which could be useful for me?

Skye

Hi @MikeBuzz50 the weekly infusions of Cextuximab are going well so far. I was a bit apprehensive when the Oncologist suggested it weekly but the side effects are very manageble. My regime includes this plus irinotecan every 3 weeks and Capecitabine tablets every day for 14 days. With regards cost,I am extremely fortunate that my Wife's Private medical insurance covers me. Although even then it did take BUPA quite some time to authorise the treatment plan. Good luck to you

RosemaryA

Hi @MikeBuzz50 - I'm so sorry for the slow response. Can I clarify why your treatment with cetuximab stopped in December 2016? Did you complete a cycle? Had your disease stabilised? And I infer from your post that you had liver mets at the time but lung mets have developed subsequently.
Any reinstatement of cetuximab would need to be pursued via your medical team: there is the option of an Individual Funding Request based on clear clinical evidence of your condition responding positively to treatment with cetuximab as opposed to any alternative, however given the passage of time this might be difficult to demonstrate. You can find information about the IFR here https://www.england.nhs.uk/wp-content/uploads/2017/11/ifr-patient-guide.pdf
You may be aware that cetuximab was re-appraised by NICE last year and a recommendation made that it should be made available for routine use (rather than via the Cancer Drugs Fund, as previously). Here is a link to the appraisal https://www.nice.org.uk/guidance/ta439 which also includes some information on costs - although this is the cost of the drug only and obviously doesn't reflect the overall cost of treatment.
However, the criteria for baseline use (see page 35 of the latest CDF list https://www.england.nhs.uk/wp-content/uploads/2017/04/national-cdf-list-ver1-61.pdf) state that "Note: No treatment breaks of more than 4 weeks beyond the expected cycle length are allowed (to allow any toxicity of current therapy to settle or in the case of intercurrent co-morbidities)"
The issue of treatment breaks is something that we are keeping under review from a campaigning perspective but the guidance changes from time to time so it is difficult to pin down.
I'm copying in my colleague @Charlotte Nurse Advisor to see if there is anything she can add here: I'm sorry I haven't been able to provide clearer answers but I hope the information is useful nonetheless.
Please keep us posted on any developments and let us know if there is any additional information we might be able to provide.