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Beating Bowel Cancer Community

Stage 4 bowel cancer

jinnyp

First chemo!

I had my PICC put in yesterday, can honestly say I barely felt it - the specialist nurse who did it was fab and I was very impressed.

Back today for my first FOLFOX and so far so good. Only things I have noticed is that things feel extra cold (toilet seat!) and someone mentioned jaw pain when first eating something which I just had and is so weird!

The bum bag is in a drawer, too much faff - just have the pump in my pocket.

That’s it until Monday morning now - just wondering whether to take anti sickness tablets ‘just in case’ or to wait and see? I have dexamethasone for 3 days as well.

I read somewhere on a leaflet about peripheral neuropathy (think on beating bowel cancer site) that rolling a ball under your feet/hands could be useful to minimise/help with side effects - going to give it a try - nothing to lose. Just need to find a golf ball!!

Just visualising lots of little ‘Pac-Men’ running around gobbling up all the cancer cells - rather like that picture!

Sorry for rambling - was hyped up for today, glad to have finally got started.

Good vibes and best wishes to all.

Jane x

Edited to add - the pac man idea is not my own, I read someone describing it on this forum or Macmillan and it grabbed my attention. 😬

Ruby

Hi @jinnyp I was on folfox for 6 months didn't find it to hard to handle never really needed to take the steroids or anti nausea meds but I did always feel cold & would get pins & needles in my hands & feet the first few weeks seemed to subside after the 4th cycle. Have just started folfiri so have that bloody pump again always forget the damn things attached to me I get it caught on door knobs the handles on the kitchen drawers forget to take it with me when I get out of bed. Actually was lying in bed the other night reading with my cat asleep beside me she must have caught the line move out the corner of her eye & she just pounced no idea what she thought it was. So be aware of cats. lol
Good luck with your treatment :x::x::x::x::x:

Seashells

Hi @jinnyp well dome on sailing through your first Folfox.

I'm one ahead of you with virtually the same stage and age but my 2 liver mets revealed themselves just 4 weeks before I was scheduled for surgery so they went ahead with my anterior resection in June. I'm having 6 Folfox then hopefully a straightforward liver op prior to more chemo to mop up any stragglers and finally a stoma reversal. Well that's my plan. Just hope my BC is co-operative and has read the plan!

I massage my jaw joint before I try to eat the first few days and I was told to take the anti sickness meds for 3 days - I didn't feel sick so I may ask about reducing them next time. My nurse said she finds women who had morning sickness in pregnancy seem to be more prone to sickness in Chemo, not scientific, just her observation.

At my hospital there is a unit a bit like Maggie's where they offer lots of therapies. I'm enjoying reflexology and hand massage - I figure being kind to the PN prone bits early can do no harm. I also recommend liberally moisturizing hands and feet daily.

Take good care of yourself this weekend, you may have a couple of down days but you'll bounce back. Keep a note of symptoms and read just before your next treatment. I find it helps.
:x:

jinnyp

@Ruby you made me laugh with your story about your cat! I have a border terrier and had a dream that I woke up and she was chewing my pump on the bedroom floor!

I have stuck my gloves on the fridge door with a magnet as I got caught yesterday grabbing the milk.

Feeling pretty lucky so far though - only issue was not sleeping last night much but wondering if that might be the dex?

How many courses of folfiri are you having?
Good luck with them.
Take care
Jane :x::x:

jinnyp

@Seashells, thanks for the tip about massaging the jaw - I will try and remember that - it took me by surprise even though I had read about it. Only on one side so far though and very fleeting.

I have decided to take the antiemetics for a couple of days at least - interesting what your nurse said about morning sickness - I had ivf twins and had horrendous sickness so that’s made me more determined to use them!

It’s great to have tips from people who are doing the same/have been there - it really helps 😄

Peeking at your profile it looks as if you’ve had quite a time of it so far - I really hope your next phase goes more smoothly for you.

Take care
Jane :x::x:

Beck R

Interesting about the morning sickness comment, I had horrendous sickness, hyperemesis and do feel pretty ill after chemo sessions now.

Regalo

Welcome to the folfox brigade. I pretty much sailed through the first few cycles with jaw pain and Hand neuropathy only lasting 2-3 days. Just completed number 12 and I have to be honest that side effects seem to have accumulated and I am now pretty wiped out for nearly a week after the session....but it is all still doable and manageable although I do tend to block out the not so good days. I also have panitumabab (spelling???) to target my mass of liver mets . Rescan late October so fingers crossed as my original prognosis was non curable and non operable..I aim to prove everyone wrong! Good luck with your journey and lots of love. :x::x::x:

Ruby

@jinnyp the not sleeping is definitely the dex....should have seen me after my 1st infusion was bouncing off the walls had really bad rapid eye movement wallpaper was moving the tv screen was jumping infact my son called my daughters saying "oi!!! you gotta come see mum she's totally baked". So next infusion they cut the dex down 50%. As far as the folfiri not sure how long, at the moment doing it in 2 month blocks. Damn good idea attaching your gloves to the fridge it's a weird feeling isn't it. I was so hoping that I'd get super powers from my electrified fingers.
Keep in touch let me know how your going...here to help if you need. :x::x::x::x::x::x::x:

jinnyp

@Regalo, thank you for your reply. I’m sure they won’t all be this easy but glad to have got this one out f the way! Am expecting accumulation so will make the most of the easier times if/when I get any more 😁
Really hope that your scan later this month has encouraging news for you. Hope to be following down that route at some stage. I may possibly have cetuximab added in but results not back yet.
Good luck, take care
Jane :x::x::x:

jinnyp

@Ruby, was just having a peek before I try to sleep! Took a nytol last night on recommendation of my 82 year old Dad who is having similar chemo and wakefulness and it helped so have taken another tonight.

Your description of your reaction was very vivid! Glad you are not getting that every time!!
Gloves are on the fridge but still forgetting them, jaw pain seems to be the main thing and just knackered all the time but making the most of it - not going to be this easy all the time I’m sure!!

Off to be disconnected tomorrow morning, will be nice not to have to remember the pump!

Sleep well 😁

Jane :x::x:

CalmOnTheOutside

@jinnyp great job getting through the first round - sounds like you sailed through :) I'm off to start my cycle 2 tomorrow morning, so hoping not to have a repeat of the nausea I had first time. Fingers crossed! :x:

Lawsey

Dear ladies just to join the party a little late. But concur with the nytol. I take half a tab and blessed relief from vomiting. On folfox (oxmdg) after 2 cycles of capetiabinexxx finding i absolutly need the anti sickness meds

jinnyp

@CalmOnTheOutside, good luck for round 2!!
They gave me an infusion with antiemetics before the chemo - presumably they do that as routine? I hope that they can give you something to help with the nausea this time. I forgot my domperidone and dex at lunchtime so won’t take any more, I was given 5 days domperidone and my dad was only given 2 doses so I guess everywhere varies slightly.
Will be thinking of you tomorrow :x::x:

jinnyp

@Lawsey, welcome to the party 😄
I think i’ve been lucky this time, just hope if it gets worse that it’s gradual- i’m a bit of a wuss with vomiting!!
The nytol was brilliant- makes such a difference to sleep - looking forward to tonight without the pump!
Good luck with your next cycle!
Take care
Jane :x:

Lawsey

Thank you Jane. Feeling very sick and weak. But showered washed my hair and will venture back to work tmr - are there any disadvantages to the nytol. I also take HTP 5 to deal with my occasional weeping. Ah the joys of it all :x::x::x:

jinnyp

@Lawsey, bless you, showering and washing my hair has just about wiped me out today.
The only issue I have had with nytol is that if I take more than one I get a bit of a hangover effect the day after. The dose is one to two but I have only ever taken two once and slept most of the day!!
I haven’t heard of HTP 5 - what is that?
Take care
Jane :x::x:

CalmOnTheOutside
Quote from @Lawsey:
.... Feeling very sick and weak... Ah the joys of it all

Indeed, the joy :).

@jinnyp as well - I'm a little ahead of you, so my advice comes from much less experience than others, but just make sure you tell your team about all your side effects and symptoms. I was sick as the proverbial on cycle 1 infusion day, but today I did cycle 2 and it was much better - I told the team, and the Oncologist prescribed a different anti-nausea med which worked really well, so this evening I feel fine!

I also didn't eat this morning or lunchtime, and only a few oatcakes this evening - partly out of nerves, but also as others said it helped. So my (limited) advice is to take control and try different things and experiment. Take lots of notes, see what works for you - there are literally dozens of sub-varieties of colon cancer, and we each have unique physiology, so the interaction is hard to predict, so (as long as it's safe and you stay on the meds), give it a whirl. For me, green tea with ginger was my saviour last time! :)

jinnyp

@CalmOnTheOutside, I have some green tea with ginger - I might have to try it 😄

So glad your second cycle was so much better.

I think I spoke too soon because I have felt really nauseous and sorry for myself today - should have carried on with domperidone perhaps?
Not sure if chemo related or whether I am ‘backing up’ so will see what tomorrow brings.

I think the idea of writing everything down is a great one, I am quite good at playing everything down when I feel better - must try not to do that!!

Take care
Jane :x:

Seashells

Hi @jinnyp I recognise the "playing the really bad bits down once I feel better". I now write a daily diary just to remind me so I report back to my team accurately. I still feel like a bit of a moaning Minnie but I think it's because I need to be positive with friends and family and forget that the medics need the whole truth in order to give me the best treatment. It is a learning process and gets easier as I'm getting to know my team better.

CalmOnTheOutside

Hi @jinnyp so sorry to hear the nausea has come back :( I'm not in domperidone, but looking it up it works both by suppressing the feeling of nausea and by helping your stomach empty into your bowel and your bowel to move things along. I speculate, here, as I don't even play a doctor on TV :) , but it may therefore have been helping with the 'backing up'.

And I completely agree with @Seashells - I write everything down, even the pretty trivial - so for example for about 5 minutes yesterday my upper lip went numb, like I'd had an injection at the dentist, so it's going in the notebook! Who knows what might get worse over time, and I want to be able to say when I first noticed it - and to remember in 2 weeks time that it happened this time!

Shall I let you in to my slightly guilty secret? At least once a day I give myself a percentage score: what percentage of a "normal Clive" do I feel, right now? Right now, day 2 of cycle 2, I wrote down 85%, which compared to this point on cycle 1 at 65% is pretty good :) It all goes in the notebook - there may even be graphs later if we're lucky ;)

Meezermum

@CalmOnTheOutside and @jinnyp you are both so right about recording the side effects and I too have played it all down at my consultation . I have found domperidone really good at quelling nausea , especially during the first week of oxy and cap , and ginger and lemon tea is also very soothing . Hope both of you don't suffer too much . Hugs 💚