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Beating Bowel Cancer Community

Raising Awareness

EmilyS

Have you been affected by cetuximab or panitumumab treatment breaks?

We are looking to speak to people who have taken cetuximab or panitumumab as part of their bowel cancer treatment, but have been unable to resume treatment following a treatment break of more than four weeks. If you would like to share your story of how this restriction has affected you, please get in touch with our Press team via our Share your story form here: bowelcanceruk.org.uk/media-centre/share-your-story/

Swan

Hi @EmilyS
My late husband was in this position with panitumumab, it was the only treatment which was effective and he was not allowed back on it after a break for surgery. I will try and get round to sharing this on the bowel cancer.org site.

EmilyS
Quote from @Swan:
Hi @EmilyS
My late husband was in this position with panitumumab, it was the only treatment which was effective and he was not allowed back on it after a break for surgery. I will try and get round to sharing this on the bowel cancer.org site.

Hi @Swan, thank you for your reply - we will look out for your story.

Lynne0426

@EmilyS

I will have been off Cetuximab for 4 weeks tomorrow, as Oncologist said chemo wasn't working. I've since had an EBUS scan and am awaiting results (should be next week) . I'm not sure why you want to know so not sure if I can be of any help?

Caraeliz24

@EmilyS I had cetuximab prior to surgery. I then had a break whilst I had ablation and liver surgery- break of a few months in the end due to delays. My post op chemk couldn’t include cetuximab because funding wasn’t secured. I didn’t go into detail as to why with my oncologist

Baxter2

Hi @EmilyS

I'm not too sure exactly where to post my experience of Cetuximab so have shared on here.

Yes, mine was stopped by my NHS oncologist because I opted to have a diagnostic laparoscopy offered to me to assess whether I was a candidate for Cytoreductive surgery and HIPEC. As this required a 4 week break, it was stopped and I was prohibited from restarting even although it was very effective. At this point, we swapped over to use our private health insurance and it's been prescribed every 2 weeks since with Folfiri (with a six month break for liver resection, CRS and HIPEC) I've just had my 42nd Cycle. 👍

K💛💜💙💚❤️

Polly 1

My husband had 11 cycles of Folfiri/Cetuximab which worked very well. He was supposed to have liver and lung resections in March this year and was told he would have to stop chemo in order for the operations to go ahead.
Before the ops he had to have CT/MRI scans and it took so long to get the results he was in danger of losing funding for Cetuximab. Luckily the Oncologist acted quickly and had a Picc line put back in and gave him Cetuximab just to keep the funding going in case he didnt have the resections.
When the results came in the tumours had shrunk and were now too small to operate on so the operations were both cancelled.
So if we hadnt chased the Oncologist and he hadnt moved so quickly to organise things there would have been no operation and no further Cetuximab. It was a time of great pressure and worry - a ridiculous situation.
Since then hubby recommenced full Folfiri/Cetuximab and had his 18th cycle a couple of days ago. So although he didnt get to the situation of not being able to resume treatment that you are talking about it was a close run thing!

Clancy

Yes @EmilyS, my oncologist had to fight tooth and nail for my Panitumumab after a break, he said it was six weeks. He managed to secure it last time for me, bless him, he was in fact incensed that the two deciding on the panel were pharmacists and not oncology Doctors. He said I can't have it this time though, I have had it twice, I am now on Folfiri.:x:

Polly 1

@Clancy I think the 6 week figure is "4 weeks after the length of the usual chemo cycle". So in my husband's case, as he is on Folfiri/Cetuximab, it is 6 weeks in total after the previous day of chemo.

Jane39

Hi @Polly 1 . That’s helpful to know ... so if your cycle is 14 days ..... the clock starts ticking at this point hence making it six weeks ? Gives me time to have booked scan and results.

Polly 1

That's what we were told @Jane39 - obviously you should check the situation with your oncologist though.
C was due to have liver and lung resections in March and had to stop Folfiri/Cetuximab 6 weeks before to clear the chemo before the liver op. Giving up Cetuximab was a very hard decision he had to make in order to get the liver resection.
We then had a very stressful time trying to deal with 4 hospitals trying to get them to talk to each other concerning CT timing/results. The last thing our Oncologist said when he stopped chemo and had the picc line taken out was if for any reason your liver op is delayed or cancelled let me know. He said I'm not letting you lose Cetuximab AND not have a resection.
We finally managed to get the CT's done but to be sure they needed a liver MRI. They were working on getting all the results just before the operations but we needed the results in time to go back onto Cetuximab before the 6 week limit it was vv stressful.
In the end it got to 5 weeks and the Oncologist said he couldnt wait any longer and straight away C had a new Picc line and Cetuximab restarted which shocked the liver team at the other hospital as they had still been working on the original surgery date which would now have to be postponed.
Finally all the scan results came in and everything had shrunk so much that not visible/too small to operate on. So our Oncologist had done the right thing to keep the funding for us but it was a very stressful time and a close call.
All the best :x:

WendySue

@Polly 1 I have just been reading your account of the stress you and your husband experienced just to retain a drug that was working effectively! I should not be surprised in light of my own issues in funding but this just beggars belief. If there was ever an issue that throws light on the perverse arrangements for cancer funding, your experience nails it. Thank goodness the charity @EmilyS is looking into it.
:x::x:

EmilyS

Thanks so much for your responses - I'm sorry to hear of some of your stressful experiences around the treatment breaks. As this post was for a specific media request highlighting the treatment break restrictions, I'll be in touch directly if your story could fit this and see if it would be of interest to be interviewed. If you have any questions in the mean time please do get in touch on press@beatingbowelcancer.org

Jane39

@Polly 1 . Apologies but I thought I had replied to thank you for the information. I’m still waiting to hear what my plan is after I have the initial prescribed 12 cycles this week . Thanks again :x::x:

Polly 1

Hi @Jane39 fingers crossed for good results after 12 :x::x:

Jane39

Thankyou @Polly 1 .... as if we all haven’t enough to worry about without having to be ahead of the game with treatment that so far has been working. Is your husbands treatment ongoing .... how is he managing with side effects after so many cycles ? :x::x:

Polly 1

Hi @Jane39 yes treatment is ongoing as far as we know. Over the years since 2012 he's had 6 months of Folfox, 6 months of just 5FU then the latest 19 Cetuximab/18 Folfiri with the next Cetux/Folfiri due tomorrow.

Folfox in 2013 gave him painful permanent peripheral neuropathy but the 6 months of 5FU in 2015/6 were a walk in the park in comparison.

The first 11 Cetux/Folfiri were reasonably OK. Just one overnight hospital visit last November with diarrhoea after which the Irinotecan was reduced a bit.

He lost most of his hair for a while but that grew back - although all coarse, wavy and curly now! He had spots and red patches on his face but overall his skin wasnt too bad.

After a 5 week break for scans leading up to possible surgery (which wasnt needed in the end) Cetux/Folfiri restarted and since then his skin problems have been really bad. Very painful and red on his face but with hardly any spots on the rest of his body. The Oncologist said having Cetux in the Summer is hard because of sunlight. He's now back on daily Doxycycline after a weeks break while he organised repeat prescriptions. I think the break didnt help as reading on here others have had bad reactions after stopping Doxy.

He has had problems with the skin under the picc line dressing but these days they leave it all uncovered for the 8 hours he's having chemo and smear Sorbaderm cream all over it and it's much better than it was.

He gets cream scaley stuff (like cradle cap) in areas over his face which isn't nice. He uses olive/baby oil to soften it then removes it using a clean flannel which seems to work. He also has to moisturise like crazy as well as nivea lip stuff and factor 50 when he goes outside.

He has mouth ulcers but usually Difflam and Gelclair sort them out in the end. He gets sore areas around his finger nails. By drinking lots of water he is managing to keep constipation at bay - he used to take Senna regularly through chemo days but drinking lots of water seems to be controlling that now fingers crossed.

He is having 1 hour magnesium infusions nearly every fortnight now despite eating loads of broccolli, cashews and dark chocolate etc it's just not enough to stop him falling below the limits.

We are now waiting for the last CT scan results although not expecting it for another 3 to 4 weeks as there's a big backlog due to staff shortage. When we have the results the Oncologist is going to review things although of course Cetuximab needs to continue (if its still working) for funding reasons. He did say he may drop Irinotecan but not sure how that works with funding as I thought you needed to have the full Folfiri???