A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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Michaela1
Posts: 53
Joined: Sat Jun 30, 2018 11:16 pm

Re: First folfirinox experience

Postby Michaela1 » Wed Aug 15, 2018 9:47 pm

That's great Kate! I still Haven't drove yet, but I'm sure I will when I feel ready. It's sounds reassuring you are having a better 3rd session than the first two. You keep smiling too.x

toodotty
Posts: 165
Joined: Sat Jun 09, 2018 4:17 pm

Re: First folfirinox experience

Postby toodotty » Fri Aug 17, 2018 10:48 am

Hi both,
Great that you are both showing positive improvements, this mirrors my own experience. After round 6 I can say that I feel better than I have since February when this all kicked off. I am even able to eat a bit of meat again and my need for CREON has diminished, I am now only on 40,000 for a meal, down from 100,000. All bloating and constipation has gone. I would agree with you Kate, but also keep your meal options really simple the week following chemo. Nice sloppy foods, and limit fat & diary as much as possible.
toodotty

Theresa Upton
Posts: 56
Joined: Thu Oct 11, 2018 4:39 pm

Re: First folfirinox experience

Postby Theresa Upton » Fri Feb 22, 2019 9:35 pm

Hi Kate, how are you doing following the surgery?

Theresa

kate2101
Posts: 85
Joined: Fri Jun 15, 2018 4:20 pm

Re: First folfirinox experience

Postby kate2101 » Fri Feb 22, 2019 11:19 pm

Hi Theresa

Six weeks yesterday since my op, pleased to say all good so far. The recovery has taken me longer than I expected but my family say I’m too impatient! I’m still uncomfortable but I’m getting better every day, I’m driving again now and slowly getting my energy back. My appetite was non existent for a few weeks and eating was a chore but it’s slowly coming back and I’m putting a little weight back on.

Biopsies of my liver tumours were taken during the op and all samples were benign, (down to chemo), but he ‘blasted’ them anyway. The tumour in the body of the pancreas was ‘Nanoknifed’ successfully. I’m trying to be quietly optimistic. I admit losing Erika has been a real blow, her operation was a success and I thought we were going to share our journeys for some time to come, it’s not fair she lost her fight so soon and not directly to cancer.

I’m back on chemo for a while to ‘mop up’ stray cells, ideally my US doc would like me to have radiotherapy in the next 3/6 months, something I’m persuing with my oncologist here...watch this space. Fortunately, my hospital have been very supportive, unlike Erika’s and encouraged me to travel to America, admitting they could only offer me chemo and a prayer!

Thank you for your message, I’ll keep you updated!

Kate x

Theresa Upton
Posts: 56
Joined: Thu Oct 11, 2018 4:39 pm

Re: First folfirinox experience

Postby Theresa Upton » Sat Feb 23, 2019 5:50 pm

I am so pleased things are going so well. I am so unsure about what to do next, I have been referred for a trial but that was 3 weeks ago and I have not heard anymore. I would have to self fund nanoknife which makes the decision quite difficult as does losing Ericka. My tumours have significantly reduced and I have just had round 9, this chemo and the last one was at 80% and I am not having anymore untill the 21st march as I have a busy march and want to enjoy it. Please keep in touch and I wish you all the luck in the world for a speedy recovery. X

kate2101
Posts: 85
Joined: Fri Jun 15, 2018 4:20 pm

Re: First folfirinox experience

Postby kate2101 » Sat Feb 23, 2019 10:52 pm

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
Posts: 56
Joined: Thu Oct 11, 2018 4:39 pm

Re: First folfirinox experience

Postby Theresa Upton » Sun Feb 24, 2019 7:45 pm

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
Posts: 85
Joined: Fri Jun 15, 2018 4:20 pm

Re: First folfirinox experience

Postby kate2101 » Mon Feb 25, 2019 8:36 am

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
Posts: 56
Joined: Thu Oct 11, 2018 4:39 pm

Re: First folfirinox experience

Postby Theresa Upton » Mon Feb 25, 2019 9:09 pm

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
Posts: 56
Joined: Thu Oct 11, 2018 4:39 pm

Re: First folfirinox experience

Postby Theresa Upton » Mon Mar 11, 2019 7:06 pm

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

Therrsa

kate2101
Posts: 85
Joined: Fri Jun 15, 2018 4:20 pm

Re: First folfirinox experience

Postby kate2101 » Mon Mar 11, 2019 11:27 pm

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
Posts: 56
Joined: Thu Oct 11, 2018 4:39 pm

Re: First folfirinox experience

Postby Theresa Upton » Wed Mar 13, 2019 9:56 pm

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
Posts: 85
Joined: Fri Jun 15, 2018 4:20 pm

Re: First folfirinox experience

Postby kate2101 » Wed Mar 13, 2019 11:59 pm

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
Posts: 56
Joined: Thu Oct 11, 2018 4:39 pm

Re: First folfirinox experience

Postby Theresa Upton » Thu May 16, 2019 12:20 pm

Hi Kate, how are things going for you?

kate2101
Posts: 85
Joined: Fri Jun 15, 2018 4:20 pm

Re: First folfirinox experience

Postby kate2101 » Thu May 16, 2019 4:17 pm

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