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: First folfirinox experience

Posted: Sat Jul 21, 2018 11:11 am
by toodotty
Right, Procal powders are on the shopping list, thanks for that.
I have had sooo much wind this week it has been quite unbelievable. Thankfully hubbie has a poor sense of smell and with the nice weather all the doors are open. :oops:
It seems to have settled down a bit now, so hoping for a bit more normality and looking forward to making myself something for lunch. So I must be feeling a bit better, fancy having a go at Sainsburys Lemony Watercress and Lentil salad but minus the hallumi.
Kate2010, try not to be too hard on yourself, this is a really tough chemotherapy regime so you will need to listen to your body. I would also advise trying to get a bit of exercise every day to get the blood flowing, improve the mood and keep those muscles moving. I have planted lots of pots, bought two small watering cans, I reckon it takes about 45 minutes to water them all each day. On my tired days, I split it into 3 sets of activities.


Re: First folfirinox experience

Posted: Sat Jul 21, 2018 5:20 pm
by toodotty
Yes, I can recommend the salad recipe from Sainsburys. It was so nice I am having it for dinner too. I went easy on the lentils initially as I was unsure about them cold, but they were fine. (I just used normal ones out of tin, not puy lentils). Definitely feeling better today even cooked a lemoncello and plum tart for the family.
And no more wind!


Re: First folfirinox experience

Posted: Sat Jul 21, 2018 6:55 pm
by Veema
I think you'll have to get the procal powders prescribed...

Re: First folfirinox experience

Posted: Sat Jul 21, 2018 7:46 pm
by Proud Wife
And perhaps stop the lentils which won't be helping with the wind! Lovely to hear your update, enjoy the rest of the weekend. I do agree with Veema, get it on prescription. They are only small yet pack a punch of calories. My hubby liked the banana flavour x

Re: First folfirinox experience

Posted: Sun Jul 22, 2018 9:58 am
by kate2101
Morning All!

Procal powders for me too!

Can’t believe what a difference a couple of days makes. Thursday felt like crawling under a stone and staying there but been on a steady up energy wise since then. Even pain better. No throwing up for two days! Wouldn’t say I could forget what’s going on inside my body but I feel more ‘normal’ than I have for weeks.

Toodotty... I agree it’s good we can leave doors open, where does that smell come from??

Trying to move around as much as possible, up and down stairs etc. Going to start using my exercise bike too, hopefully a walk today in the fresh air.

Your plum tart sounds lovely, as does the salad. I can almost detect an appetite! 😁😁


Re: First folfirinox experience

Posted: Sun Jul 22, 2018 10:31 am
by Veema
Proud Wife wrote:
> And perhaps stop the lentils which won't be helping with the wind! Lovely
> to hear your update, enjoy the rest of the weekend. I do agree with Veema,
> get it on prescription. They are only small yet pack a punch of calories.
> My hubby liked the banana flavour x

Think you might be thinking of something else PW...procal powders don't have flavours...procal shots are flavoured drinks..?

Re: First folfirinox experience

Posted: Mon Jul 23, 2018 11:54 pm
by Michaela1
Hi people,
It's been nice reading all of your experiences. I have recently been diagnosed with stage 4 metastic pancreatic picc line is being put in tomorrow and then I will start folrinox next Monday I think. I am getting married to my long term female partner this Friday I am female too, we were planning it before, but because of diagnosis have pushed it forward a bit! I have a 13 year old daughter through from a previous relationship. My daughter is understandable upset as is my partner......and me 😔. I don't know what to expect, I'm scared of dying before I've seen my daughter grow a bit more, and most of all I'm scared of being a burden. Reading all of your honesty and positivity on this page has helped, and I can only hope I am as strong as all you are being.x

Re: First folfirinox experience

Posted: Tue Jul 24, 2018 8:06 am
by kate2101
Hi Michaela

First of all congratulations on your wedding, I’m sure you’ll have a lovely day despite this unwanted guest.

I’ve just been lying awake going over the nightmare of the last few weeks and still find it hard to believe how my life has changed. I’m never ill, rarely get colds, non smoker, definitely not overweight and fit and active. Hit me like a bolt from the blue. I married for the second time just two years ago and we had so many plans.

But I’m coping. I have my pre treatment doc appointment tomorrow which can be depressing as it’s easy to feel a statistic and almost written off. You are not a statistic, you are an individual and no one knows what tomorrow, next week, next year have in store. Put it in perspective for me at the weekend when I read about the poor lady in America who lost nine members of her family in that tragic boat disaster. I’m lucky.

My second folfirinox is this Thursday if all well. The first was not the nicest experience in the world and had quite a bad day last Thursday but since then I’ve felt better every day. Sunday went out for a stroll and pub lunch and even had a glass of prosecco!

Yesterday felt more ‘normal’ than I have for weeks, virtually pain free and had an appetite! I made and ate a vegetable curry, making use of all the veg lurking in the bottom of the fridge. Just wish everything tasted right, I love cheese but it tastes like sour rusty nails. Think it’s acidic foods that taste the most different, fruit is fine. Weird!!

I’m fully aware of the seriousness of our problem but I refuse to talk about time scales. No one knows what the future holds, good or bad. I know today I feel good and I’m going to enjoy it. Hard to explain but my brain has somehow got its head around the situation and doesn’t let me think too much about the future. Yes I have my moments when I think of all the family moments I might not be around for, weddings, grandchildren etc but it passes.

Be strong, listen to your body and keep as well as you can and don’t listen to negative people.

Have a lovely day on Friday xx

Re: First folfirinox experience

Posted: Tue Jul 24, 2018 9:42 am
by Veema
Hi Michaela and welcome.

It might be an idea to start your own thread so you can post all your updates on there and they don't get lost in anyone else's thread...we like to know how everyone is getting on!

Children are very resilient and as long as you are honest with her, she will be fine. My daughter was 8 when my husband was diagnosed and 10 when he died and she's been great. She's a great support to me too. I totally get where you are coming from though and I sit at events, such as her school award ceremony and could cry, because I'm sat there all alone and her dad would have been so proud of her. You've just got to make the best of this time and make some fantastic memories for her to remember. And you could be around for a good while yet.

Have a wonderful wedding day.


Re: First folfirinox experience

Posted: Wed Jul 25, 2018 1:49 pm
by toodotty
Hi Michaela,
Good luck for Friday. Totally understand your situation especially regarding your daughter, my sons are slightly older (18 & 20) and yes it is hard to accept that I will not see them marry or meet any grandchildren. But do not believe all the statistics that you will have read. 50% of all people diagnosed with PC are over 75 and have multiple health issues, hence the survival rate for them is short. With a 13 year old daughter, you are clearly young and having Folfirinox means that you are also considered fit and healthy. It can be tough, the 1st couple of sessions were the worst for me, they have just got better each time. I am due cycle 6 on your wedding day, I have been out of pain for the last 4 weeks and even managed an evening out last night. Also there are other options outside of the NHS, I am looking at the Nanoknife route and I will start posting a separate thread on this soon.
Do not give up HOPE, listen to your body (I am vegan/vegetarian now), understand that we are all unique and each one of us has a better chance that the NHS thinks.

Sending you a virtual hug,



Re: First folfirinox experience

Posted: Wed Jul 25, 2018 4:47 pm
by toodotty
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 :oops: , 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,


Re: First folfirinox experience

Posted: Wed Jul 25, 2018 8:11 pm
by Michaela1
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

Re: First folfirinox experience

Posted: Wed Jul 25, 2018 9:31 pm
by kate2101

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 :D


Re: First folfirinox experience

Posted: Sat Jul 28, 2018 7:21 pm
by toodotty
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.


Re: First folfirinox experience

Posted: Sat Jul 28, 2018 11:38 pm
by Michaela1
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 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 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.