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