Help me get Ready to start FOLFIRINOX

Hi Matthew

Sorry to hear about your diagnosis but its good to hear you are staying positive

I started Folfirinox a year ago yesterday and finished in November

I would guess that most people embarking this course of treatment will have a 'fear' of the unknown I certainly did but in response to your questions I hope my experience will be useful

What you need to know will be covered by the nurses in oncology. a lot of it is written down but take a notebook and pen because there is a lot to remember

I don't reckon you can prepare for chemo but I will always recall the words of my appointed nurse .In essence she said that not all chemo is a horror story which she thought was a common misconception. Of course different people react in different ways to the treatment so it is vital that you give honest and full feedback to the oncology team. 

From my own experience I was made very comfortable by the oncology staff but when you are at home do not try to overdo things. For example the whole process can be quite tiring so if need to go to bed do so.

Obviously my treatment was before covid but in effect I shielded throughout the whole course of chemo. I am sure there are schemes in place locally if you need shopping , medication etc. The gov.uk web site is very useful

I was looked after so well by the oncology team, nothing is too much trouble and there is no such thing as a silly question. Put yourself in their capable hands 

Good luck , please let me know how things progress

Kevin

Hi Matthew.   Sending you best wishes.  I was diagnosed with PC in Feb 2016 and had spells of folfirinox and folfox, most recently in February this year.  For me it was okay, fatigue is the hardest thing to deal with.  Treatment is long so try to occupy yourself with books, videos or whatever.  Steroids also give a couple of sleepless nights so try to plan for that.  I'm coming to this message late so you may have started already? If so hope it's going ok.  I could go on and on but do let me know how you're doing and if theres anything in particular youd like to know.  Top tip, stay positive and keep sense of humour.  Sending you best wishes 

Matthew, please can I ask what your symptoms were and how long you had been suffering symptoms before you were diagnosed.  What tests did you have to determine the diagnosis? Hope you are coping OK with the chemo.

Sorry for the slow response. 

My symptoms were not severe. Some abdominal soreness, bloating and back pain. Started in early Feb and I had various tests via my GP which didn't show anything. I was referred to a Gastroenterologist just before lockdown and had a CT scan on 11th May which showed I have pancreatic cancer which has spread to my liver and lungs. The latter diagnosis was confirmed by a liver biopsy and CT scan respectively. I've developed an occasional tickly cough and sore throat which may be associated with the lung cancer.

I had my first chemo cycle on 4th June and felt a bit rubbish for 2-3 days but this week has been good and I even think my symptoms have abated a little. Having said that my symptoms have never been that bad and can be managed quite well with paracetamol and occasional co-codamol.

My next chemo cycle is on 17th June.

I started on 4th June and can definitely relate to the sleeplessness comment. I wasn't prepared for that and found it hard but it seems to fade after a few days. Next cycle on 17th June and hopefully I'll be better prepared.

Hi Matthew,

Thank you so much for taking the time to respond.  It sounds like once the diagnosis was made the treatment started fairfly quickly.  Please can I ask what chemo has been prescribed and how long you will need to take it?  Also, have you had any problems with sickness or digesting your food?

Best regards

Jo

I have had an upset stomach. Constipation due to the anti sickness meds followed by rather the opposite problem! But nothing very severe at this point I would say. I've been prescribed some creon to help with digestion but to be honest I'm not sure this is a problem I actually have at this point! I've found that eating smaller, more frequent meals is the most helpful thing.

I'm on 12 cycles of Folfirinox every other week. So 6 months of treatment. They will scan me half way through to see what impact the chemo is having.

I have my second chemo cycle tomorrow so let's see how that goes but feeling generally positive so far.

Hello

Glad to hear you are feeling positive. its a year ago I had my second cycle of 12 and at the time the road ahead can seem long it did go quite quickly. the dieticians recommendation to eat little and often was excellent advice 

i am sure you are being well looked after by the nurses in oncology. Keep smiling

Best Wishes

Kevin

Hi Kevin!

Just being nosy but did you have the second cycle straight after the first or was there a gap in between? 

Would also be interested in where you are now with your cancer. If you'd rather not share I'll totally understand.

Cheers, Matthew

Hi Matthew

I had 12 cycles starting at the end of May finishing at the beginning of November. the precise dates are indelibly fixed in my mind but if I trot them off you may think I need to get out more. It was every 2 weeks , the main reason being a 'new' mixture of folfirinox was used and the consultant thought it best for my body to recover between each cycle.

I had a follow up scan in March , luckily before lockdown , and much to our amazement and relief there was no trace of the cancer. The new chemo seems to have worked as well as alleviating a possible prostate problem. 

I am feeling very well and although I have been retired for a few years there were lots of jobs to catch up with during lockdown which physically I was not strong enough to do last year.

This forum was invaluable during the whole of 2019. The main message being ' You are not alone ' . 

Anything you need to discuss don't hessite to get in touch

Good to hear rom you

Kevin