Has anyone had a reaction to 5 FU che... - Oesophageal & Gas...

Oesophageal & Gastric Cancer

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Has anyone had a reaction to 5 FU chemo with the pump? I started it on may 12 and ended up having every side effect possible hospital 2 days

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18millie5 profile image
18millie5

Hello, I had the 2 chemicals including 5 FU. Was in hospital for one day to start me off and then went home with the pump. Nothing could have prepared me for how dreadful I felt - yes every side effect there is. It turned out that as well as the side effects I had an allergic reaction to the chemo - my face went red and swelled, my hands and feet swelled and my heart was racing. It was all quite frightening. The treatment would have been for 2 cycles of chemo, but because of that reaction I didnt have the 2nd cycle. Had the operation 6 months ago, all successful. When I saw the consultant for follow up appointment he told me that the chemo hadn't dont anything at all to the tumour - I was sure it must have done something after all that !!! Anyway after such a dreadful time with the chemo, the operation didnt seem too bad at all ! Sorry to hear you went through all that as well, but I haven't got any left over side effects at all. Very best wishes and good luck for the future

DavidP profile image
DavidP

Hi,

A small number of people have a deficiency in an enzyme called DPD which metabolizes 5-FU, resulting in worsening of side effects. Something you might want to bring up with your oncologist.

Dave

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listen in reply to DavidP

Hi there I did have a positive test for the enzyme dpd thank you!

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Thank you 18millie 5 & David P for the replies. Had the test for the enzyme dpd still waiting for result! If positive will still use and cut down dose if negative will try something else or what I had pre surgery carboplatin & taxol my oncologist wants 5FU for the cells to see something different! The chemo scares me! Both my parents had chemo & did not make it through, my cancer different and I am much younger and really feel like the chemo will knock any left over out of the park!! No vacancy left in my body for cancer:)

18millie5 profile image
18millie5

Hello, just wanted to wish you good luck. I didnt realise from your first query that this was post surgery chemo. I only had chemo before surgery. The oncologist seemed surprised by my allergic reaction to the chemo, but because I was having surgery didnt suggest any other combinations (I had cisplatin and 5FU). Luckily for me the surgery was successful so I dont need any further treatment - I just have 3 monthly appointments with my consultant. I have been very lucky. I find this website very helpful, it is good when you fine other people have been through similar and I also like to see if I can add anything which might be of help to others. As you said cancers are all different, I do hope you dont have so much trouble with your next chemo. Best wishes

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Hi 18millie5 thank you for the support. Did you have any lymph nodes involved? I had one they were unable to get to so that is why having the chemo pet scan clear but cannot always see? What stage and type was your cancer squamis cell or andecarcinoma? I had the same cisplatin and 5FU also this last time in May. Will know next week what I will continue to have. I have 3 doctors my oncologist radiologist, oncologist chemo and the surgeon from Cedar Sinai telling me I should do chemo to prevent it from reoccurrence and am having Herceptin as my tumor that is gone was originally HERS2 positive! It does help to talk to others. I thank you for help!!

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18millie5 in reply to listen

hello again, mine was squamis and was T2. The consultant was surprised - when I first saw him he said it would be T3 because it is rare for people to catch it before this stage. Also I didnt have any nodes affected. In fact after the operation he said it was the best possible outcome for me. As I said before I know I have been very lucky. The reason I went to my GP - last May - was because I had indigestion which wouldnt go away, and which I had never suffered from, also I had had a couple of times when food got really stuck, I expect you know how horrible that is. Lucky for me he was on the ball and referred me for endoscopy under the 2 week rule. I was actually diagnosed last July and had the chemo in september. Lucky for me all I have to deal with now is the affects of the operation - rib/back uncomfortable, swallowing still a problem, very tired etc - but worth it to still be here ! best wishes

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listen

Hi Millie thank you for the reply! This website has been a godsend! It really helps to read others symptoms, treatments and just all the great information. I feel normal now when I feel tired and tell myself that it is o.k. was the high performance woman and am just learning now how to relax!! Had a fabulous day today and am grateful for it! Again, thank you for listening!

18millie5 profile image
18millie5 in reply to listen

No, I should thank you, it has been great to share with someone. The hospital has been great and looked after me really well (well saved my life with the operation) but they didn't give me much information when I came home and I really didn't know what to expect about how I would feel, what eating would be like etc etc, so, like you said, it has been great to join this website and see how other people are at all different stages. Very grateful to the people setting it up and to everyone who writes in. Glad you had a good day - I find I really appreciate everything much more now - I know it sounds corny but it's true !!