First folfirinox experience

Hi Kate 2101,

I'm impressed, pub lunch and prosecco! There was me, chuffed because I met up with some friends and managed two pints of squash at a wine bar, slightly surreal. However, I have been feeling pretty good this week, on the exercise bike everyday, a bit of a struggle in the heat but the heart rate and recovery has been good.

I hope that Dr Doom was OK for you today, I took until my last visit to even get a smile out of mine. Had my bloods done today and my bilirubin levels (jaundice) are back to normal, yee-hah. I knew that anyway but it's good to get reassurance. I also managed to drive myself to the blood tests and back (45 mins each way), which was also a first for me. Was so chuffed that I exited the car park via the entrance and then wondered why everyone was waving at me, doh , they shouldn't let me out.

Round 6 on Friday, not looking forward to the heat on the ward, it can get pretty unbearable. My mum had lent me a small portable battery-operated hand fan but I am not sure how helpful that will be.

Good luck for tomorrow, hopefully they will be able to give you something for the swollen tongue?

Best wishes,

toodotty,

xxx

Thank you guys for your responses, certainly makes me feel less lonely. I havent had the first dose yet but have still felt ill! Mainly due to some stuff they gave me to make me go toilet, all it did was make me sick and put me in hospital for 3 days.... They told me to try again with it, but made me sick again! I'm so bloated, but now too scared to take the new stuff in case it ruins the big day Friday!! I'm so nervous but excited too, and it's great to have something to look forward too! Do you guys have my recommendations as for stuff in the u.k that could help. It was these sicklynorange ratchet things called ducolox I think that made me I'll...... According to statistics I will probably have the reverse next Tesday with first day of chemo!

Yes I'm 47, was fit and well I thought, but don't mind telling you I'm pretty scared of being sick....i can cope with pain better than ill if you get me?

Thanks for being here.

P.s not sure how to start my own thread? Haha

Hi!

All set for round two tomorrow. Dr doom had nothing negative to say but I didn’t feel any more hopeful even though I told her how well I’d felt over the last few days. I came home and hoovered the house top to bottom, cleaned bathrooms and kitchen floor......then fell asleep!

Michaela....have you tried lactulose? Drink lots of water if you do.

Toodotty....congratulations on your trip out. My glass of prosecco sounded impressive but took me about an hour to drink! Made me feel I’d joined the human race again for a while! I haven’t driven for about 3 weeks now, I wanted to take myself to blood test yesterday but I wasn’t allowed. I will have to put my foot down next time. My mum also gave me one of those fans, think it might be useful tomorrow looking at the temperature forecast.

Hope all goes well for both of you Friday, two very contrasting days. Congratulations again Michaela

xx

Hi Michaela,

Sorry to hear that you have been sick, they will give you anti-sickness drugs with your treatment. Unfortunately the medics aren't very good at helping with regard the pancreatic conflict between constipation, sickness and diarrhoea, not helped by the drugs that they prescribe being capable of causing the same symptoms. My rule of thumb, if I am chucking it up or it is coming out the other end too quickly, it isn't doing me any good. There are other things to try. Get yourself a diary, be anal about recording what you are taking when, believe you me you will come home with a cocktail of drugs to take and it can get very confusing! I too have had horrible discomfort for months, like I had swallowed an ostrich egg which was stuck at the top of my stomach, anything I ate seemed to sit on top and get stuck. This has finally gone, with round 5 of my treatment, but nobody could suggest anything that I could take.

Do speak to the lovely nurses on this forum they may be able to advise you further.

I keep my eating really simple, especially around chemo time as I do get constipated. Red meat woman has turned vegan for the 1st week and veggie for the second week. This has reduced the bloating though I still have constipation but that will improve as I go through the week. Basically any fatty foods, milk products etc. are a no-no for me and will make me feel ill for days. And remember to drink gallons as this will flush the chemo through more quickly. I aim for a minimum of 5 pints of weak squash a day, you should need to make frequent visits to the bathroom, ask the chemo nurses to put the two pumps onto one stand then you should be able to wheel it to the bathroom by yourself. Do remember to take the brake off, I got the stand stuck inside the loo but with me out of reach of the toilet. I ended up having to carry it the rest of the way or risk a serious accident!

I had my round 6 treatment yesterday but will post that under Struggling to get treatment.

Good luck for round 1, don't worry about being scared, it is pretty nerve-racking to start. The first two are the worst then you should settling into more of a routine.

Toodotty

Thanks Kate and toodotty,

It makes me smile when I get a reply from you guys, makes me feel not so alone....even though I have so much support around me!

I am now a Mrs!! The day was absolutely fantastic and it could not have been any more perfect....guests at the end had an impromptu game of volleyball amongst the bouncy castles and other big kid stuff to play with and the rain stayed away.....i am exhausted now but still on a massive high.

I am trying not to think about Tuesday too much....however I saw a quote today somewhere along the lines of just because you cannot control the situation you are in, you can try and control how you react to it....it gives food for thought.

I will deffo try and remember the two chemo bag rule and taking brakes off to go to the loo!

I will also take a fan, i-pad, mags, books......and gallons of water! At the moment I have an addiction to fruit pastille lollies they help quench the thirst.....ive had 6 today!

I'm not really a drinker, so I will be happy if I can manage a tea or coffee rather than a prosesco ☺.

I have not driven fora while either Kate, I think I was scared to on the drugs, but deffo if you feel like you want to you should! I feel it ironic I have been awarded full pip payments things and could apply for a blue badge.....is this because I will be that tired I will need one??

Toodotty, I am still trying to figure my way around this site to find how your session 6 went today? That is quite a milestone yes? Do you have a scan now? Night guys.

Michaela

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

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

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

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

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

toodotty

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!

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

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

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

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!

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

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

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

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

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

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

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

Hi Kate, how are you doing following the surgery?

Theresa

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

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