First folfirinox experience

[kate2101]

First one over! Arrived at hospital 8.30am yesterday for picc line. Unfortunately my left arm veins were ‘too wobbly’ and after a few attempts had to to try right which worked immediately.

Treatment - much better than I expected, I think the only real effects I felt yesterday was the oxyplatin which made me feel as if my tongue was too big for my mouth and I sounded like I’d been in the pub all afternoon. If only!

Horrible journey home with daughters sweatshirt tied round my sweaty face with strict instructions from staff not to take it off till I was in the house. Finally arrived home 5.45, long day!

Sorry if TMI but may be useful if I list all experience. Took anti sickness pill when I got back but was immediately violently sick. Felt better then and took another with sips of ginger beer which stayed put. Liquid morphine my new night time best friend, relatively painless sleep, bliss!

Don’t feel too bad so far, still feeling sick but hope it settles and I manage to eat something. Just have to wait and see how the next few days pan out. Will keep you posted.

Thank you all for your support and good luck toodotty for your treatment today. So glad you are feeling good, gives me hope.

[Veema]

Haven't you got a PICC line in? My husband had folfirinox and had to have a PICC line to enable him to come home with the pump attached...haven't you got a pump delivering a further 46 hours of chemo?

I remember the oxilaplatin making my husband's mouth all funny. You shouldn't be too bad in this warmer weather, but he used to look like he'd had a stroke if he got cold round his mouth straight after chemo.

Good luck with it.

Vx

[kate2101]

Hi Veena

Yes, picc line in but initial attempt in left arm didn’t work so had to try again in right which fortunately succeeded. Nurses coming to disconnect me tonight.

Don’t feel too bad this morning, slept reasonably well with the help of my night time morphine friend. Biggest battle is trying to keep alll the tablets in place, so far so good today. Like pregnancy nausea again without something nice to look forward to at the end!

Should be on holiday right now, can’t believe how life has turned upside down in a matter of weeks but I’m determined to stay positive, no choice but to get on with it and I’m sure when I have a routine established and know when my ‘good times’ are we will be able to have a break.

Thank you for your support, means a lot x

[Proud Wife]

Hi Kate

Pleased to hear that treatment has now started. I know it's easy for me but don't worry about the missed holiday right now. We were able to go on holiday when my husband was in between cycles of Folfirinox. It just took a couple of cycles to get him feeling better again (with the help of steroids and anti sickness medication) and then there was no stopping him!

Keep posting and we will keep supporting you as much as we possibly can xx

[kate2101]

Hi Proud Wife

Admit feeling a bit sorry for myself earlier, got angry at this horrible disease that has so suddenly turned our lives upside down. Over it now and positive head back on!

Celebrating a minor achievement that I haven’t been sick yet today, how priorities change.

Thank you again for support, really helps

[toodotty]

Hi Kate2101,

Great news that you have had your first treatment and it went well. It is worth noting down your symptoms because you will see a pattern developing and will get into a groove quite quickly. I too threw up my anti-vomiting pill, amazed that something so tiny could make me chuck up so quickly! They have given me another type which I can now tolerate, (though they keep prescribing the wrong one every single visit ...).

I developed jaundice just before my first treatment started and this definitely made the side effects much worse. Yes I have had the tingly fingers, toes and on round 4 it was also my nose. I had to sleep with a bobble hat pulled down over my face for two nights. Re the morphine, you may find it is the steroids you are having with the treatment that are keeping you awake, they do make you hyper, I am absolutely pinging when I come out of treatment. As the meds wear off after 3 days, this is my downer time, so I just set myself very small challenges and just remember back to the days of period pains when I would have to readjust my life style for a couple of days. And yes the nausea reminds me of morning sickness, except with 2nd son it went of for 14 weeks, morning, noon and night sickness so this is tame in comparison.

I have just finished round 5, but will post this under "battling to get treatment".

Re missing your holiday, just have it at home. Forget the cleaning, get out some good books, play some games (computer and board), watch videos with kids/friends, buy ready meals or takeaways and enjoy some downtime. "Life is too short to stuff a mushroom" Shirley Conran.

toodotty

xx

[kate2101]

Hi toodotty

You are right, holiday not important, plenty more opportunities ahead to get away!

Glad treatment no 5 went well. Had morphine prescribed last week pre chemo as pain was keeping me awake. Still not remotely pinging even with the steroids! No throwing up yet today and (I think) the glimmer of an appetite! And pain much better! But wish there was a way to kill this beast for good. One day there will be and we will be here for it, positive thinking.

Thanks for your posts, really good to hear how well you are doing.

Xx

[Veema]

Amazing ladies...its great that you've got each other for support. It's sometimes hard for us as carers to give the right sort of support to those of you suffering with the disease...no matter what we've been through, it's nothing compared to you guys going through it first hand.

Glad the PICC line is in...it just sounded like a normal cannula from your first post.

My husband tolerated folfirinox really well and apart from the tingly fingers and toes, just had a bit of loss of taste, so needed stuff with strong flavours and most often things with gravy and sauces.

Lots of love and luck

Vx

[kate2101]

Thanks Veema

Not feeling brill so far this morning, think 2nd attempt anti sickness pill might just be kicking in. Nausea worse problem and makes taking other tablets very difficult but sure I’ll come to some understanding with my body and gauge what suits. Going to try some toast in a minute as need my steroid! Still waiting for toodotty’s apres steroid ‘pinging’.

Apart from that, no other real side effects yet I’m pleased to say so onwards and upwards!

Xx

[kate2101]

Morning!

Meant to post a ‘daily diary’ but all too much effort!

All ok, up and down days. Never felt so exhausted! I think lack of appetite the worst problem, trying to make myself eat but not easy. Some days I think I’ve cracked it and enjoy some food only to lose it. Think I feel marginally better this morning, will see how it goes.

Had stomach cramps yesterday, felt like I was digesting a radioactive curry! Ok today I think.

Bit of finger tingling but nothing too bad. In a nutshell.....surviving!

Toodotty....hope round 5 going well xx

[toodotty]

Hi Kate2101,

Yes hanging on in there, getting over the slight downer after chemo. 3 days for the laxatives to kick in, I looked and felt 8 months pregnant. Re appetite, I haven't had one since February so it is a bit of force-feeding going on. I have to be very selective about what I eat and small quantities. I am mostly veggie/vegan now especially during the first week, but there are some great ready meals that are available. Living off BOL Sri Lankan Samba, Thai veggie curries and Soul curries as well. These are really tasty, full of protein (essential) and relatively cheap. I am also finding bread hard to digest, and was recommended fresh pasta as easier, which it is. As my dear grandmother used to say, "the appetite comes with the eating" and this is partly true. Once I start eating then I am a bit more enthused about it and will keep going. I never truly appreciated what a great pleasure it is to share food with friends and family, something that I have now lost. Don't forget you can eat fruit without recourse to Creon, about to tuck into a nice bowl of juicy cherries (first breakfast!). If all else fails then a tin of tomato soup is my pick me up. You can also ask for Ensure build up drinks on prescription. I have to have the Jus version (non diary) otherwise I feel sick all the time. They taste foul but I just treat them a medicine when I need them. It is difficult not to obsess about weight loss, but I am more relaxed about it now, by week 2 I am able to re-stock my calories so I am just about maintaining weight overall and fatigue is less of an issue. Make sure that you are drinking plenty, this flushes the chemo out of the system more quickly, hence less side affects.

Don't forget the first 2 cycles are usually the worse, as your body goes into "what the heck is happening?!!!" mode. It isn't easy but the gains should be worth it. I have now been out of pain (ignoring constipation) for 3 weeks so it is doing something to the tumours.

Had a bit of disaster on the weekend, my 5FU diffuser became detached and I didn't notice for about 7 hours ..... I thought I had just splashed myself doing the washing up, but no it was pumping the chemo into my t-shirt. So had to dash to the hospital Saturday evening to get it sorted, though the doctor didn't know what to do. In the end, I asked them to re-attach it so that I would at least get most of the chemo. A bit surprised that the cancer ward at a cancer centre did not have a protocol for this.....

Onwards and upwards,

toodotty

xx

[kate2101]

Morning!

Amazed they didn’t know what to do with your leak! Scary!!

Don’t want to speak too soon but woke up this morning feeling like a different person to yesterday! Totally wiped out yesterday but hopefully this is the start of the ‘up’ for a few days.

Thanks for diet tips, I’ll give your suggestions a try. Never thought I would feel this way about food, I’ve always enjoyed cooking, eating and feeding people. Tinned tomato soup was always my standby when I was pregnant, became a bit of a craving when I was expecting one of my children, I’ll stock up.

My son home tonight for the weekend so hopefully the improvement will continue and we can have a ‘normal’ weekend.....and eat!

Thank you for passing on your experiences, it’s a real help when you are entering the unknown. Enjoy your weekend xx

[sandraW]

Hi ladies, good to hear you are both feeling a bit more on the up! When my husband, Trevor was on his Folfirinox treatment, he had his treatment on Mondays, Tues, Wed Thurs were okay by Friday he was tired by Saturday he was more tired and Sundays he spent in his chair in the lounge asleep, he would wake for breakfast, a mid morning drink and snack, lunch, mid afternoon drink and snack, and then for a meal about 6.30 pm, after that he could usually stay awake for an hour or so watching TV, only to fall asleep again before a full nights sleep. On Mondays he was up and about again virtually back to normal, he did learn that he just had to accept it, and go with the flow. sending love and best wishes sandrax

[kate2101]

Hi Sandra

Your husband’s experience is pretty much as mine energy wise. I know you are told roughly what to expect but it’s not the same as experiencing it.

On the whole, it hasn’t been as bad I as was expecting but admit I’ve never felt so completely drained as I did yesterday.

Thank you for your good wishes, determined to stay positive! xx

[Veema]

Ladies, I cannot recommend procal powders enough...you just heap a couple of scoops on whatever you are eating, or into a drink and it adds both calories and protein without comprising the flavour or texture of the food or drink.

Keep going!

Vx

[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.

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.

toodotty,

[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!

toodotty

[Veema]

I think you'll have to get the procal powders prescribed...

[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

[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!

xx

[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..?

[Michaela1]

Hi people,

It's been nice reading all of your experiences. I have recently been diagnosed with stage 4 metastic pancreatic cancer.....my 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

[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

[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.

Vx

[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,

toodotty,

xxxx