Page 5 of 5

Re: First folfirinox experience

Posted: Thu May 16, 2019 7:18 pm
by Theresa Upton
So lovely to hear you are doing ok. I had round 13 today and hopefully start a immunotherapy trial in Liverpool next week. What are the reasons for them not wanting to give you radiation,? I am going to take a break after the trial, hopefully the trial will finish at the end of June. Yes, Ruth did pass on your telephone number, are you free for a chat tomorrow?

Re: First folfirinox experience

Posted: Thu May 16, 2019 7:23 pm
by Theresa Upton
Hi Kate, I am so pleased that you are keeping well and on the up. I had round 13 today, round 12 was horrid so I took an extra week to recover. What's the reasoning behind the 'no' radiation? Yes Ruth did pass on your number, are you around tomorrow for a chat? Theresa x

Re: First folfirinox experience

Posted: Thu May 16, 2019 7:25 pm
by Theresa Upton
Sorry you have 2 messages Kate, I thought I had lost the first one......I will put it down to chemo brain ....lol

Re: First folfirinox experience

Posted: Thu May 16, 2019 7:59 pm
by kate2101
Hi Theresa

Be lovely to talk to you and exchange notes, should be here all day. Are you being treated at Derby?

Re: First folfirinox experience

Posted: Thu May 16, 2019 8:24 pm
by Theresa Upton
I am being treated at XXX, I only live a 20 min walk from the hospital. I will give you a call before midday tomorrow.

Re: First folfirinox experience

Posted: Thu May 16, 2019 8:52 pm
by kate2101
Look forward to talking x

Re: First folfirinox experience

Posted: Sat Sep 14, 2019 10:42 am
by mummy.may
you are blessed to have pain relief that works for you. I had a tough time with pain. Morphine doesn’t work for me it just makes me hallucinate but doesn’t touch the pain. as strange as it may seem, i do much better with iv paracetamol. i also declined the spinal block. something i very much regretted post op. I had talked about my problem with opiates but the message got lost somewhere and i woke up hooked to a morphine pump. when i finally convinced someone that it was no good to me, they gave me iv tramadol instead . when that didn't work i heard a doctor say that i was overly dependent on pain relief and to just hang the bag, but don’t run it through as i didn’t know what i was getting anyway. that troubled me greatly, still does. all i wanted was paracetamol. any way tough time over and done with now and i am doing great. my youngest daughter was 21 yesterday and was 15 when this all started, i was in hospital for her 16 birthday and she was looking after herself at home and visiting me. when i came home she looked after me. i think we are both still a little traumatised by it all, BUT i am still here and so is she and i have had 5 years and intend to have many more. anyone considering this surgery , be warned its tough, but i saw my daughter turn 21 and intend to meet her babies. ( she is not even engaged yet 😆) but i feel better than ever and am happy i am still here. so thumbs up for whipple surgery . best of luck with your treatment.