Hey everyone
How's it going?
So I just finished my cycle of FOLFIRINOX which gave me every side effect going apart from hair loss.
My CT scan showed a reduction of 1.2cm. The tumour was 5.6 and is now 4.4cm
I am feeling really disappointed.. It's like being on a strict diet for three months but only losing a pound!
Has anyone experienced similar. I am surrounded by loads of PollyAnna people who say at least it hasn't grown or spread and I know that, but I was expecting a better response.
So now waiting for the next course of action. Switching to Gem Cap chemo or radiotherapy.
Anyone got any insights or advice?
Lots of love
Tupah xx
Hi Tupah
i have just had my 10th folfirinox, I too have had lots of different symptoms, with very minimal nothing obvious hair loss. When the symptoms became to much I phoned the helpline and they were a great help, in October I had a scan having had then just 6 chemos , the result was that the tumour was ‘stable’, sorry to be abit of a Pollyanna, but I like you , I thought ‘ ohh so I’ve been through all that and it is not improving , but i stopped myself, and said’ it is stable it has not got worse, and tried to think no further than that ,
I went onto have another 4 chemo, I now have had 10 I have a scan tomorrow and I have been told that if they cannot operate, then I will probably go onto chemotherapy tablets and have a course of radiotherapy and they will look at it again a bit later,
I understand you very much , I am so nervous but I take one day at a time , and some of those days are full of what ifs ect, I like you do not know anything about the next steps at this moment, so I try to go with each day , I find things to do that ‘I’ like , I try and find one thing a day to laugh at and I try to get some fresh air each day , sorry if none of this has been any help I would just like to know you are not alone and I am will to chat anytime you wish , in general or to exchange symptoms/ feeling ect, for now try to think positive and wait for the next step
crackerlakin x
Hi Crackerlin
Thank you so much for your reply. Actually this is most helpful. I don't feel so alone in my experience.
I guess I was expecting instant results but actually that's not what it's about.. The long game as they call it.
I hope you get a good result but thanks for showing me the one day at a time method. I can't fix this and I am in the hands of the experts. But like you say, I can do other things to occupy my mind.
Do let me know how you get on.
Tupah xx
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