Starting Folfiri treatment soon

27 replies
87 subscribers
4021 views

Hi,

I had 6 cycles of Xelox (Capox) chemo that finished in February 2021. I have stage 4 bowel cancer that has metastasised onto my liver to a degree that it is inoperable. By the end of the treatment my tumours had shrunk and my CEA count was down.

Its been nice not having treatment and enjoying more from life, and joyful seeing my friends and family (particularly my first grandchild, born last summer) when Covid restrictions allowed; but it has been difficult coming to terms with the fact that I will never feel as well again as I did up to the second half of last year.

My 3 month CT scan and oncologist consultation was delayed by a few weeks because of a backlog in radiology, presumably we have COVID-19 to thank for that, but I did have a blood test and a phone call consultation in the interim because I had started to feel increasingly tired. The CEA count was about the same at 56 but my liver function test had changed slightly for the worst, the Oncologist hoped that that might be because of an infection.

I had my face to face consultation with one of my oncologists this week, it was good to meet in person at last. Unfortunately the results are not particularly good. Although the scan has shown the situation as ‘stable’, they think that the tumours may have grown a little, but they found no sign of new tumours. The blood test has also shown that the CEA count is up to 96 and my liver function has worsened slightly. It looks as though the cancer has become active again and the oncologist has recommended Folfiri chemo.

It did its job on the cancer but the Capox didn’t do me any other favours, my metabolism really didn’t take it well. I have quite a bit of neuropathy remaining. I’m not expecting a fun packed experience but I do hope that Folfiri will be just a little bit kinder.

Does anyone has advice for me about Folfiri?

Best wishes,

Sweetsweep

Maddie54 over 2 years ago

My husband is to start Folfiri next Friday. He had 9 rounds of Folfox 6 and the scan showed 3 tumours on h i s liver had grown slightly. He is waiting on right lobe liver resection.

We are afraid there are no guarantee with the Folfiri and by the time four rounds go by the liver resection may not be possible. He had the bowel tumour removed and an illeostomy on the 4-th Dec. That all went well. Now 7 months have passed and he is beat up from the chemo. We live In Ireland and I don't think a lot of the blood markers get tested here. Any advice as to what to say to oncologist when we meet as he i s all set on the Folfiri?

Sweetsweep over 2 years ago in reply to Maddie54

Hi Maddie,

I only know what my oncologist told me about Folfiri this morning and what I read on Macmillan. I know I am likely to lose my hair but that seems a small price to pay. I won’t have the neuropathy that I had with Xelox, but I wonder whether the other side effects will be similar in severity. Like your husband I was flattened by my chemo. It would be interesting to get some first hand experiences.

I am in Bristol and my CEA markers have been checked quite often, six times since October 2020. I assumed that would be standard practice. I’m glad they were checked because I felt that my cancer was active again but that wouldn’t have shown on the CT scan.

I hope the Folfiri works for both your husband and myself. You are obviously a rock as my husband is for me.

Take care,

Sweetweep

Maddie54 over 2 years ago in reply to Sweetsweep

Hi Sweetweep

My husband is-68 and was in pretty good shape before. We want to get h i s liver resected ASAP but t h e oncologist wants to get shrinkage first even though the liver doctor i s happy to carry on.

Its a worrying time for everybody, I hope you get on well with the treatment.

Maddie

Francesst over 2 years ago in reply to Maddie54

Hi Maddie54, we are also in Ireland, in Galway, we've had to ask repeatedly for CEA results, but the CNS now gets them for us ahead of the next chemo. My husband has had 12 cycles of Folfoxiri and Avastin, his blood markers have come down from 14,026 to 86 this week, so he's had a good response, but it's been a tough regime. He's now on maintenance of 5FU and Avastin, we're hoping for further shrinkage. The tumour markers aren't significant for all, they have been for my husband, but it's the scans combined with the tumour markers they compare.

I would tell them of your concerns, you have to be your own advocate, ask whatever is on your mind, and also mention the tumour markers.

Love Frances xx

Maddie54 over 2 years ago in reply to Francesst

Dear F r ances

We are in Galway too. Can I contact you off line. We only found out about these blood markers in the last few days.

Maddie

Francesst over 2 years ago in reply to Maddie54

Oh my, what a small world, of course, accepted your friend request

Maddie54 over 2 years ago in reply to Francesst

We are at the Clinic and we live in Moycullen.

Anniepan over 2 years ago

Hi I have just finished a 3 month cycle of Folfiri this is a combination of 5fu and Irotecan. I also have panatumumab which is a biological treatment. I have had this combination before just before the lockdown last year. But I was then quite under weight so the doses were lower. The side effects I had from the folfiri were minimal the panatumumab gives you a nasty rash. However on this new cycle I’ve had all the side effects but they should give you medication to combat this. I was diagnosed Feb 2019 and still here but I’ve had a lot of other treatments but I’m covered by private health insurance, I’m having another liver resection in three weeks.

Maddie54 over 2 years ago in reply to Anniepan

Anniepan

Did the Folfiri shrink your liver tumours? Wishing you good luck with the resection.

Anniepan over 2 years ago in reply to Maddie54

Hi maddie

i had my first cycle of folfox in 2019, it shrunk my tumors by 50% but I’m really lucky that I am what’s called a super responder to chemo and more so that I am treated privately. I then had a liver resection and one of the tumors in my bowel removed. After recovering I then went on folfiri and panatumumab which shrunk them even more in my liver. Also had radiation treatment in March last year. Then the lockdown hit and had maintenance of capcitabine tablets. My CEA went up to 31 after the latest chemo that went down to 2 after two treatments. I’m having another liver resection in three weeks. My experience with the NHS wasn’t good the consultant said it was incurable inoperable and that I only had about 9 months left. That was 2.5 years ago. You could discuss these other treatments with your oncologist keep on at them