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

Re: First folfirinox experience

Postby Michaela1 » Sat Jul 28, 2018 11:39 pm

Sorry p.s.....am on lactoluse.....a little easier on the tummy, but not much success yet!

kate2101
Posts: 64
Joined: Fri Jun 15, 2018 4:20 pm

Re: First folfirinox experience

Postby kate2101 » Sun Jul 29, 2018 8:37 am

Hi Michaela

So pleased you had a fantastic day, congratulations again.

Had my round two on Thursday and touch wood, so far better experience than first. Seem to be managing the nausea this time which was a big problem before but I think I was feeling really rubbish pre treatment last time which didn’t help.

Can only ditto toodotty’s advice, write it all down and listen to your body and look for a pattern to emerge. Funny, I don’t eat many sweets but had a craving for fruit pastille, wine gummy type sweets and keep a bag in my chemo goody bag to nibble on. Will try the ice lollies. Also had a craving for Horlicks despite the boiling hot weather!

My blue badge arrived through the post a few weeks ago to the great amusement of my daughter. My stepsons reaction was we could go to Alton Towers and go to the front of the queues! Haven’t felt the need to use it yet but it’s there if necessary.

Loads of luck for Tuesday, you’ll be fine, be positive! xx

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: First folfirinox experience

Postby Veema » Sun Jul 29, 2018 9:19 am

Michaela...congratulations! Pleased the day went well.

To start a new thread, click on the forum you want to post on, Patient Experience Forum will probably be best for you, then there's a little blue button that says 'New Topic' click on that and post away. It will mean we don't miss anything you post about you that might be mixed up in a different thread.

Vx

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: First folfirinox experience

Postby toodotty » Sun Jul 29, 2018 1:35 pm

Hi ladies,
Yes the Bluebadge is a bit surreal, but I think will come in useful when the winter sets in, if only for a swift drop-off or pickup from treatment. I could have done with it when I had the bile stent fitted, I had to leave hospital in a wheelchair as I was unable to stand up without fainting due to very low blood pressure.
Ice-lollies, how do you manage that? I cannot even manage ice cubes in my squash because of the tingling in fingers & toes, I am sitting here with two pair of gloves on.
Michaela1, so glad that the wedding went well and you have some great memories.
Good luck for Tuesday, also pack some wet-wipes, the small package of lemony ones were great for moping my fevered brow last Thursday!
Further posts can be found under the title "battling to get treatment" which charts the start of my journey.

toodotty

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: First folfirinox experience

Postby toodotty » Sun Jul 29, 2018 1:37 pm

Oh, my sweet craving is Jelly Beans, no idea why!
toodotty

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

Re: First folfirinox experience

Postby Michaela1 » Mon Jul 30, 2018 11:28 pm

Good evening people,
Short but sweet just to say out loud that I am so nervous about tomorrow! I want to be brave, by I'm struggling....Everybody around you says "Oh how well your dealing with it, etc etc" but all I can think of inside is 'I have no choice!'
My tummy is so bloated, I resorted to a home enema kit, which worked for about an hour of fairly malleable stomach and then back to feeling 9 months pregnant again with no comfy position to get in and awful cramps! I feel like such a wimp! ☹
Anyway enough of that, I will try as Veena suggested to start a new thread on the new experience page tomorrow as the poison....i mean magic potion is going in!

kate2101
Posts: 64
Joined: Fri Jun 15, 2018 4:20 pm

Re: First folfirinox experience

Postby kate2101 » Tue Jul 31, 2018 7:39 am

Morning Michaela!

Lots of luck for today, it is very nerve racking, something we never thought we would have to do but you will be ok. Hope your tummy settles and no, you are not a wimp! Far from it!

Look forward to an update, lots of love xx

kate2101
Posts: 64
Joined: Fri Jun 15, 2018 4:20 pm

Re: First folfirinox experience

Postby kate2101 » Fri Aug 10, 2018 10:26 am

Morning all,

Update. Had third Folfirinox yesterday, hoping I feel as good as second which was a breeze compared to first. Had good news from oncologist Wednesday as CA 19 levels dropped by about 1/4, can’t remember figures, sounded very high so my brain glossed over those details but at least moving in right direction. Felt well enough to drive myself to hospital for oncologist appointment, also done supermarket shop! I know this horrible thing isn’t going to go away but it’s been great to feel better. No nausea and gained weight!

Toodotty and Michaela.....hope you’re both on the up!

Love to all xx

Lots of love to all

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: First folfirinox experience

Postby toodotty » Fri Aug 10, 2018 12:03 pm

Hi Kate2101,

Good news, fits in with the pattern of treatment for me as well. By round 4 all pain had gone (and still has gone). Last night I even managed to eat some cheese! Currently in limbo until I see Dr Doom next week.

Well done,
toodotty

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

Re: First folfirinox experience

Postby Michaela1 » Fri Aug 10, 2018 4:49 pm

Hi Kate,
Awesome you are feeling better! And Toodotty glad you are not feeling so bad, you are just in front of Kate and i regarding treatment so its always good to see how you are dealing with it! It gives me hope. I had a bit of good news.....i didn't need a drain fitted, although they did find fluid it was not enough to drain and they think the 1st dose of chemo maybe reduced some of it....its great news as it means my 2nd dose can go ahead on Tuesday as planned!

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

Re: First folfirinox experience

Postby Michaela1 » Tue Aug 14, 2018 10:40 pm

Hi guys,
Hole you are feeling ok? Had my 2nd round to day...came straight home and slept the nausea feeling off...i asked the nurse about my CA19 levels even though I don't really know what they are, they were in the 1000 plus range pre treatment, today my last bloods before round two they were in the 2000 plus range....the nurse was telling me not to worry or take much notice of them, but I get a feeling they are important?
Michaela x

kate2101
Posts: 64
Joined: Fri Jun 15, 2018 4:20 pm

Re: First folfirinox experience

Postby kate2101 » Wed Aug 15, 2018 8:12 am

Hi Michaela

I’m sure my figures were way higher than that but I didn’t take it in. It was only after 2nd chemo that it went down which I think is par for course. It’s an indicator that chemo is having some effect, early days for you so don’t worry about it. Hope you’re coping and round two easier. How is the bloating?

Xx

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: First folfirinox experience

Postby toodotty » Wed Aug 15, 2018 5:10 pm

Hi,
CA19-9 is a blook marker for pancreatic cancer but is not reliable. Mine have been showing as less than 2 from day 1, none of my blood tests show any cancer like infection, so I wouldn't get too hung up about it. Your Oncologist will let you know if it is an issue.
Glad that round 2 is out of the way for you,
toodotty

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

Re: First folfirinox experience

Postby Michaela1 » Wed Aug 15, 2018 5:35 pm

Awesome, thanks guys, that makes me feel a bit better! The bloating has almost gone! So hopefully now just deal with side effects of chemo and not all that on top...although I probably should start on the lactulose again as not gone toilet for 3 days. How are you guys? Have you seen Dr Doom yet Kate?
Michaela x

kate2101
Posts: 64
Joined: Fri Jun 15, 2018 4:20 pm

Re: First folfirinox experience

Postby kate2101 » Wed Aug 15, 2018 6:47 pm

Hi Michaela

Glad your bloating issues improved. Think I would introduce lactulose again, I find it’s the kindest to take, I take about 20/30 ml at night if needed and it usually works gently for me. Nothing drastic to report, on the up from third chemo, definitely better than first two. Day 6 today and managed a drive to supermarket!

Keep smiling! Xx