Disappointed with chemo result

FormerMember
FormerMember
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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

  • FormerMember
    FormerMember

    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

  • FormerMember
    FormerMember in reply to FormerMember

    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