Palliative Chemotherapy

Hi 

Sorry to hear you had such a rough time with chemo . Did they say why they are reluctant to use irinotecan and 5fu? It is certainly used a lot so hopefully someone will be able to assist with your questions .

My own mum had xeloda and a very rough time and they gave 6 cycles which she managed with a few hospital admissions. Following an immediate recurrence she was offered another 6 cycles of xeloda and we prepared for the same reaction . However due to her platelets plummeting they had to reduce her does by 20% . This suddenly made the whole thing doable and no where near the same struggle the first year had been . It brought back the quality of her life . I also think we got more confident at communicating with the team and between them they struck a better balance around dosage and efficiency. The 6 cycles were sufficient to open up other options for her and although she has had a further recurrence four years ago there was a surgical option this time . She has not had chemo again since 2010 . So taking it the second time was certainly worth it for her and like you raised better placed from a position of experience more able to advocate and balance out her life with treatment. Her quality of life was much better . She also was not frightened to move things around a bit for special occasions etc and certainly lived life a lot more the second year .

take care ,

 Court 

Hi Court,

Thank  you for that knowledge and advice.  I’m just pretty scared that if I start the chemo to then after three months they scan me and it hasn’t reduced the tumours in any way and that the side effects if I have them badly again will mean that my last few months will be of me just not functioning well.     Fear of the unknown but knowledge of how poorly I was last time with the absolute need to live and fight for survival.  I’m just not ready to leave my kids who are so young at 21 and 22 with no other family members apart from my 80 year old mum who bless her was diagnosed with lung cancer a few months ago.    
Thank you for letting me say this all “out loud” I just don’t know what to do .

Hi ,

I am not sure if you are familiar with the CEA tumour markers . They keep a close eye on them to see if they come down during treatment . 
It is frightening to think about the possible outcomes . We certainly did but also gave headspace to potentially good outcomes too . Certainly for my mum it was the gateway to other options after it was completed .

You have a lot to press forward for . Forums like this give the opportunity to safely discuss the harder aspects of a diagnosis. We also have our support line 0808 808 0000. They would be happy to chat through any aspect with you .

Ask anything you like here .Many people are in the same position with the same fears .

take care ,

Court 

Dear Court.  

Thank you for your advice, knowledge and input.   It has been appreciated.  

kind regards.