A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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toodotty
Posts: 85
Joined: Sat Jun 09, 2018 4:17 pm

Folfirinox Round 7

Postby toodotty » Sun Sep 09, 2018 3:06 pm

Hi my fellow Folfirinox travellers,
I started round 7 on Friday having been kindly informed by Dr Doom that the side effects would be much worse this time and that I will probably lose the use of my fingers and toes. Thanks for that cheery news mister .... I am taking a much more upbeat approach; firstly I am not jaundiced this time around and I am feeling fitter than I have all year so should hopefully stand up better to this. Also as he has shown no particular interest in my side effects I am taking this as another standard statistic. He doesn't know that I am taking milk thistle to help with the side effects, and I have to say that my tingly fingers and toes are minimal this time around. What did come as a bit of a shock was that I felt quite zapped on the day, but again I have concluded this is because I have been feeling so well. If you are not well, then feeling a bit more unwell is less noticeable. Again it was short lived and mostly a feeling of an upset stomach and some nausea. This cleared by the next day so feeling fine.
I am sticking to my simple diet this week, vegan, small meals and some Ensure to boost me a bit so hopefully this will stop the bloating, constipation and then the dreaded laxatives which also mess me up. Also keeping a close eye on my muscle wastage in the legs. It has taken some time to build these up again so I don't want it to all go to pot.

Onwards and upwards,
toodotty

toodotty
Posts: 85
Joined: Sat Jun 09, 2018 4:17 pm

Re: Folfirinox Round 7

Postby toodotty » Wed Sep 19, 2018 11:50 am

It is never good to feel smug. Just when I was thinking it was all going along nicely, I end up back in A&E with biliary sepsis (infection) and problems with the dreaded plastic stent again. Soooo many blood tests, more antibiotics and virtually the last rites from the A&E Registrar, "Yes I do expect to be resuscitated in the unlikely event of my heart stopping ...... ". Do they ask this of everyone who presents in A&E with an infection? I can joke it off but it hits my husband really hard.

The good news however is that I finally have had a nickel free biliary stent fitted in Hammersmith on Monday. It went like a dream, so hopefully I can put the worry of the plastic stents behind me now.

Further good news, I went to see Dr Doom today, who has had charm lessons since I last saw him. He even said how well I was looking! That is a first. As I am looking so well, he has decided to postpone my next round of chemo which will also give my body time to recuperate, (though all the blood results are looking good). He also he wants a CT scan to review where we are especially given all the poor liver has been through in the last two months which I think is a good idea. I have been struggling with the idea of more chemo when I am feeling so well, (biliary stent issues aside), I have a great appetite and have been gaining weight.

So a two week reprieve for me, yippee!

toodotty