First folfirinox experience

[Theresa Upton]

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?

[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

[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

[kate2101]

Hi Theresa

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

[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.

[kate2101]

Look forward to talking x

[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.

[kate2101]

Hi All,

It’s been a while since i posted so I thought it was time for an update. Its almost two years since my diagnosis, stage VI with multiple liver mets, only hope lovely folfirinox chemotherapy to give me a few extra months. I thought life was over but here I am and feeling good....most of the time!

You can read my story here but briefly after lots of research and the lack of options available to me here, I travelled to America in January 2019 for nanoknife surgery. This was possible due to life insurance and my 12 month terminal diagnosis (proved them wrong!) and some fund raising by my family. This went well for me, i’ve had no complications but i would advise anyone considering this to thoroughly research and ask loads of questions, it’s not a magic bullet and not for everyone. It’s extremely important to make sure your NHS team are behind you for your follow up care afterwards. I’m very lucky my oncologist respects my decision to look outside the box.

I had a break from chemotherapy last summer, had a holiday without picc line in Portugal and a few UK breaks. I resumed chemo i think around August last year at 60% dose, it’s a bit sporadic depending on platelets and what’s going on in my life, 23 treatments to date. i don’t let chemo dictate anymore and don’t stress about missing a week. I still have some pain which is worse after chemo but cope reasonably well, particularly after discovering my ‘magic pill’ for nausea which i take an hour before treatment and lasts for five days. I can’t remember the name but if anyone interested i’ll find out.

Good news!....had a scan Tuesday and my oncologist had the report yesterday which is a miracle in itself! Really good news...pancreatic tumour mainly a cystic fluid filled sack, tumour not ‘lighting up’. I asked about liver and he thought i meant liver function blood test as liver tumours are now just a couple of cysts that he’s not concerned about! I haven’t seen the written report so I hope I heard all this correctly but he’s really pleased and obviously i’m delighted, I live to fight another day!

I know this beast can rear it’s head again and it won’t go away but for now all is good! CA19.9 hovers around 100/150, it was off the scale at 500,000 at the beginning. I wish I could put weight on but I’m maintaining it, my appetite is pretty good, I get tired and Ive lost muscle strength but my energy levels are good and i live a relatively normal life. I’ve started a (very) small business and developed a web site which has helped my mental state enormously, I paint and create and can almost forget about the ‘thing’ somedays. If I drop dead tomorrow I dont want to regret wasting today when i feel ok and the sun is shining, same answer applies if a miracle happens and I live to 100! I know that’s not likely but we can dream.

Stay positive, read as much as you can, research and learn about your disease but filter out the rubbish, there’s lots. You are not a statistic, you are an individual. Two years ago I didn’t think I’d see that Christmas and I thought life was over, I’m almost, not quite, starting to make plans for the next year! I try to eat the right food, limit sugar and dairy, take supplements till i rattle and i’ll continue with chemo while it works but around my life. If all goes well I’ll consider another break, not sure if i’m right but my thinking is that while I’m coping with the effects it’s good to attack the tumour while it’s ‘sleeping’, I may be wrong but seems silly to wait till it starts becoming active again. I don’t know what’s working but the combination seems to be doing the trick along with remaining busy and positive. Hope this helps, particularly if you are newly diagnosed. It’s not over!

Stay safe,

Kate x

[Theresa Upton]

Wow Kate such an inspirational post. I am so pleased that you are doing well and have found a way of living with this horrid disease. Let's hope that a cure is just around the corner. Good luck, stay safe and let's hope for many, many more years. X

[kate2101]

Thanks Theresa, just heard platelets ok so chemo tomorrow, mixed feelings of course but roll on tomorrow night and one more down! Hope you’re ok, speak soon x

[PCUK Nurse Jeni]

Hi Kate,

My apologies for the late reply - I had posted a reply, but due to maintenance on the forum, it doesn't seem to have uploaded.

Lovely to hear your inspiring update - so hope filled and also, quite busy in all the things you have managed to do! You really are doing amazingly, and still managing to balance treatment with your lifestyle.

Well done on opening up your own business too - what a fantastic achievement! It sounds amazing that you are painting and creating too - I am sure there are some stunning creations Kate!

So lovely to hear your good news - keep it up!

Kindest regards,

Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707