First folfirinox experience

[kate2101]

Hi Theresa

It’s a big decision to make, especially when things are going well for you at the moment. I was convinced I wasn’t going to come home! The fact that my hospital were supportive swung it for me and i was able to fund it with my life insurance. I have no regrets, it wasn’t easy but hopefully it’s given me a fighting chance. It sounds like you are responding really well. Which trial are you hoping to get on?

I’m back on chemo (75%) every 3 weeks, my platelets are always too low after 2. Exception was number 11 which I should have had last week, had a stand in registrar as my oncologist on holiday. My liver function results were high due to Nanoknife (will be for 3/4months), he didn’t take this on board and said I have to have scan, wait for results etc which will be getting on for 2 months since last chemo. I spoke to my specialist nurse who fortunately understands and will hopefully be able to arrange for this week.

Enjoy your time off in March. Are you going to the PC annual summit in London on 14th? I shall be as long as I can organise chemo this week.

Keep in touch.

Kate x

[Theresa Upton]

Hi Kate, sounds like things are going well for you and I hope you get the chemo sorted soon. The trial is immunotherapy at Liverpool, my oncologist has spoken to them and was told that I was a good candidate but then my papers never got to the right department so had to be resent. We are in London on the 14th to see a show but won't be getting there until late afternoon, I do not know where the conference is or what time.

Keep on fighting, you are doing brilliantly. X

[kate2101]

Hi Theresa..and anyone else interested.

Details for annual summit can be found on the home page here. Scroll past Erika and ‘demand faster treatment’ on top banner.

[Theresa Upton]

Hi Kate, I hope you are keeping well, unfortunately the conference is full but that said I don't think we could get to London that early.

Theresa

[Theresa Upton]

Hi Kate, not seen any posts from you, are you ok and did you start the chemo

Therrsa

[kate2101]

Hi Theresa

I’m fine! Just had a few days away in Cornwall, blew a few cobwebs away in the gales! Back on chemo, last one about 10 days ago. Not too bad, bit of sickness for a couple of days, descended into the tired phase now on the way up. Had some stomach issues over the weekend, usual cramps and feeling like I have a fire in my stomach, joy!!

My appetite is finally returning thank goodness. I need to work on putting a bit of weight on. I still get very tired but getting better every week.

I had a CT scan last week, should get results at my next oncologist appointment next week. Fingers crossed! Hope all ok with you x

[Theresa Upton]

That's great news Kate, let us know how your it goes next week. I have 3 more chemos to go and will need to plan my next move. I have been referred to a trial that involves immunotherapy and I just hope I get the chance to try it. Hopefully I will speak to you next week. Take care and my very best wishes are with you. X

[kate2101]

Hi Theresa, In London at the moment, I think you are too? Hope you manage to get on the trial, I’m hoping to pick up some info re trials, new treatments etc tomorrow. I’m looking for that elusive magic wand but I don’t think I’ll find it! Hope you’ve enjoyed your ‘time out’, I’m hoping for a chemo break too, be lovely to get rid of my picc line for a while. Scan results next week then we’ll see! Keep in touch x

[Theresa Upton]

Hi Kate, how are things going for you?

[kate2101]

Hi Theresa,

Still here! All ok at the moment, had number 13 Folfirinox last Thursday and admit this week has been a bit challenging. Nausea and tiredness are definitely worse this time but I feel much better today so hopefully on the way up. My US doctor wants me to have radiotherapy now but hospital here don’t want me to. I have to decide whether to carry on with chemo as it is, at a reduced rate or have a break. Leaning towards a break at the moment, dilemma, I’ll see how bloods are at my next test in a couple of weeks. How are you? Did Ruth pass on my number? xx

[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

[kate2101]

Hi Everyone! It’s been a while since I posted but I thought it was time for an update and tomorrow, 10 Jan, is a significant anniversary, three years to the day I had nanoknife surgery in Florida for stage 1V pancreatic cancer. My story in more detail is on this site but briefly, diagnosed June 2018 and thought life had finished, or so I was led to believe. I’m still here, feeling ok, not exactly as well as pre diagnosis but life has returned to some sort of normality and of course I’m nearly four years older! We moved house last September and I’ve been busy painting, wallpapering, making curtains and planning a new kitchen and bathroom. I am also still enjoying art and craft, I sell a few pieces occasionally which is a bonus! 

 

Since my last post I have continued sporadically with folfirinox at 60% dose until June this year. My platelets etc were protesting and as we were coming up to our house move it was decided a break would be good. I had an excellent scan in September, just a tiny lesion left in my liver and no activity in the pancreas, the tumour now ‘cystic’. My chemo break has been extended (a bit nervous about this but enjoying feeling better) and I’m now waiting anxiously for the results of the latest scan I had last Friday. 

 

I don’t know whether it’s chemo, nanoknife, all the many supplements I take, diet changes or a combination of all that is the reason why I’m still here but I’m not complaining! I know what I have and what may happen in the future but for now I’m counting my blessings and enjoying life as much as possible. I walk most days, I can easily manage a few miles, my appetite is pretty good and my weight stable. I have some pain which tends to increase as the day wears on but I also have some collapsed vertebrae which doesn’t help and difficult to know if it’s back or cancer related but it’s manageable. Never give up! 

 

 

[PCUK Ellie]

Thank you so much for taking the time to update us, Kate. Congratulations on yesterday's anniversary, and on the house move! Sounds like you're keeping yourself busy with lots of creative endeavours. It's really great to hear how well you are and I'm sure this will be a welcome update for everyone who has followed your journey so far.

 

I know it must be an anxious wait for the results of Friday's scan, so hoping you hear soon and it's more good news. 

 

For anyone new to the community who might want to know more about NanoKnife, you can read more on the Pancreatic Cancer UK website.

[Support Team]

Hi Kate,

 

Thank you for the update on the forum and sharing your incredible journey. Your resilience and amazing positive attitude is so important for others to hear of and read about.

I am so thrilled to hear you are still well and living some normality of life.

 

Wishing you well and thank you for being so inspirational for others on this forum.

 

Dianne