Moderator: volmod
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- Posts: 64
- Joined: Thu Oct 11, 2018 4:39 pm
Re: First folfirinox experience
So lovely to hear you are doing ok. I had round 13 today and hopefully start a immunotherapy trial in XX 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?
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- Posts: 64
- Joined: Thu Oct 11, 2018 4:39 pm
Re: First folfirinox experience
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
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- Posts: 64
- Joined: Thu Oct 11, 2018 4:39 pm
Re: First folfirinox experience
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
Hi Theresa
Be lovely to talk to you and exchange notes, should be here all day. Are you being treated at xx?
Be lovely to talk to you and exchange notes, should be here all day. Are you being treated at xx?
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- Posts: 64
- Joined: Thu Oct 11, 2018 4:39 pm
Re: First folfirinox experience
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
Look forward to talking x
Re: First folfirinox experience
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.