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Lee 75

Bowel cancer that has spread to the liver

Hi All
My name is Lee and in April last year I was diagnosed with secondary bowel cancer.
In June I started chemo/folfiri with Panitumumab with great success. I had 12 tumours on my liver which were scattered all over, after 6 cycles of chemo 8 had disappeared and 4 had shrunk massively. The primary had also shrunk significantly. After another 5 cycles everything had gone from my liver. My oncologist told me to carry on with the chemo as it would get rid of anything that could be left behind and everything had disappeared beyond their detection. In April this year I underwent surgery to remove the primary and have a stoma and ileostomy bag. This was also a success as I am now clear, and going back in for surgery to have the stoma reversed. However I'm basically being told I have to stay on the chemo/panitumumab because it could come back and if I stop having the chemo for longer than 6 weeks I will lose funding for the Panitumumab , I am in hospital on Monday for my 27 cycle. What I'm being told is that I'm clear as far as they can detect and they say that theres no other way of detecting it my liver to see if theres anything left behind. I am grateful for everything they've done but feel like I've got no option but to stay on the chemo. Has anyone else been in the same situation or have any advice?

Thanks Lee

Polly 1

Hi and welcome @Lee 75 great news that Panitumumab has done so well in attacking your cancer.

My husband had his 28th treatment with Cetuximab last week. As you may know it works in a similar way to Panitumumab. There are quite a few people on the forum in the same position and I'm sure they will be along to comment soon.

They are all in the same situation in having to continue with ongoing chemo in order to keep the funding otherwise if they stopped for more than 6 weeks they would lose NHS funding. People covered by insurance are also doing the same as the treatment is working so well.

At the moment I don't think there is a way round it. As a result my husband has to keep going with 'maintenance' chemo but feels so lucky to be in a position to do so as its keeping him well and so far keeping the cancer at bay.

Sarah44

My hubby had the Folfiri and Panitumumab as well (although dropped the Irinotecan after a bit due to side effects) for about 18 months- not sure how many cycles! Good response for several scans so joint decision with Oncologist to stop the chemo. Oncologist felt that as Andy had responded well that we could have further chemo if necessary and wasn’t convinced in Andys case that staying on maintenance chemo would make a difference long term. Six months later there has been progression and growth of cancer. Chemo will be on the cards- just not sure when they are going to start.

Lirio345

Hello @Lee 75 , I am sorry that you find yourself in this position. I am wide wake have just had my 66th infusion of FOLFIRI and Cetuximab (similar in action to Panitumumab) which has been very successful so far in that I am described as NED , - no evidence of disease. I did have recurrence in my liver prior to me starting on this treatment. More details in my profile, - just click on my user name. The funding issue relating to a gap of more than six weeks is the same with Cetuximab. My Oncologist is certain that the cancer is still there, just not visible using CT scans, as tumours are too small to be detected (something like less than 0.5 - 1 cm).

I have a colostomy but we have never discussed reversal and it is not something I would prioritise. The experience of folk on here with reversals is very mixed although it is difficult to gauge the percentage who have post-reversal problems as the tendency is obviously only to post when you are having problems ...... ......So where does that leave you Lee, - between a rock and a hard place really?
Only you can make this decision but hopefully there will be more posts that may help you.with this decision,
Take very good care, Kim :x::x:

tonibates1

@Lee 75 My hubby is on cycle 42 today and yes he does wonder if he is getting better, but you know what, I can see how this medication IS doing its job. Its keeping him alive and yes, he does have 'low days' but if it wasn't for this wonderful site and the fact that every day we are heading nearer to new medicines I don't think he would still be fighting. He lost his funding for the cetux (because he had to take 6 months off due to infected picc line), however, they have found another set of drugs which agree with him and he is still going strong. Now he is back on irinotecan and capethecitine and although he moans about taking tablets he knows he is lucky enough to still be here fighting, if it wasn't for the on-going treatment we would be looking at a different story. He is on maintenance chemo for the rest of his life. You sound as though you are on the right journey and all you can do is keep chatting on here and find as much positivity in your life as you can. It really does help. All the very best to you. Big hugs. Toni