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Slewis7313

Thanks all, we seem to be doing all the right things. Strangely enough, the NHS could not justify the PET scan so that was done privately (Company insurance), but the PET results look to be justification enough for an NHS MRI scan. Not a complaint as my Oncologist is as frustrated as we all are with some of the constraints imposed upon them.


Steve

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Hi Steve


Sorry you have still been feeling nauseous. Just checked what Jonathan took. It was Metoclopramide 10mg and also 2 x Steroids for 2 days of Dexamethasone 2mg. He ended up increasing steroids but to lessen the "dip" as nausea, for him thankfully, wasn't an issue.


I also remember that Julia's Ray had worse sickness first cycle that improved so let's hope tha same for you.


We're all gunning for you!!


Cathy xxx

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Very sorry to hear of the liver lesions Steve, but as you say they should be hit by the Folfirinox every bit as much as the main tumour. The biggest problem I had with the chemo didn't show itself until a couple of weeks in, low neutrophils or neutropenia. I am convinced it was only supplementary treatment with Neulasta which allowed me to finish the course.

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Hi

I'm new to this forum, I'm 53 have had a whipples last May and the gem-cap until the end of the year. In April this year I had a scan that shows a tumour on my liver. The will not operate to remove the tumour although it's only 2.5cm.


I have been offered Gem- Abraxane and folfox as a second line. I asked about Folfirinox and the Oncologist said I could have it if I wished, but there is no second line I could have after if I don't tolerate it. Has any one on Folfirinox been offered a second line option and is it as toxic as they say?


Clive

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Slewis7313

Hi Clive and welcome to the forum. I am unfortunately not in a position to answer the question regarding second line treatment after Folfirinox, though I am not aware of any such option. On the face of it, Abraxane with Gemcitibine is more effective than GemCap and might be the logical next step, with Folifirinox as the follow on to that.

As Abraxane is new, there is probably not too much experience to share in your situation, but I am sure there are many interested contributors here, so I would suggest starting a new thread to get some focus on this.


Whichever way you go, I wish you the best of luck!


Steve

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Hi Steve, sorry to hear about the liver but I don't think this blighter knows who he is dealing with! Go get it boy! Forum pcuk is right behind you.


Welcome to Clive also, sorry to hear of your diagnosis, don't know if I can offer much but my husband was offered gemcitabine after folfirinox (we tried for gem/abraxane but it wasn't available then). He only managed 2 cycles of gem as he was quite ill but I think as Steve says Gem/Abraxane then Folfirinox might by your best plan.


Good luck to all.


Julia x

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Thanks Steve and Julia For the feed back. I will start a new thread for this.

I think Julia is right from what I have see on your thread you and Folfirinox make a good team.


Do you go in to hospital for the treatment or at home?


Clive

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Hi Steve

So sorry to hear about the liver but I know you are strong and will fight back. I have had 15 cycles of Folfirinox now and it does seem to be an effective treatment as I have remained stable. My first cycle was awful and I did end up being very sick but with the right medication it has improved a lot and I rarely feel sick now - I have Emend on the day of treatment and for 2 days afterwards and then move on to Dexamethasone tablets. My oncologist has allowed me to extend these beyond the normal 3 days if I continue to feel nauseous but they definitely work for me. Stay strong and things will hopefully get better real soon.

I hope you are having the beautiful sunshine that seems to be bathing the UK right now and can enjoy it.

Wishing you all the best

Anne

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Slewis7313

Hi again Clive. The treatment is initially done in Hospital for 4-5 hours (in theory) and you leave with a pump attached which continues the administration of 5-FU for a further 48 hours at home, after which you return to Hospital to be unplugged. Oh...by Hospital, I mean the Chemo Unit and not a ward as the unplugging is quite straightforward.


Thanks for your response regarding your experiences Anne, it was just what I needed. This last week has tested me (us), but things are stabilising which aligns with your comments. I am expecting feedback from my Oncologist on Monday regarding the sickness management. We'll get there!


Thanks again all


Steve

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Hi Steve,

Sorry to hear you have been unwell with your folfirinox, everyone is so different, Trevor was never sick, even on number 4 with no steroid tablets or 5/6 with no steroid at all, its 4 weeks tomorrow since he had his last infusion, and he is starting to feel better each day, the tiredness is lifting, and he is able to do more and more each day. I hope they can get the sickness sorted for you, I am sure they will take care sandrax

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Hi steve, been thinking of you and glad to hear you had a lovely holiday, and have just been reading how your treatment is going as I remembered that you started it last week. Hope you can sort the nausea out, must be horrible. Havent been on the forum for a while things have been really hectic this end! poor old dad has spent last few weeks in and out of hospital, chest infection then heart attack so no more chemo for us I don't think! Hope you are feeling good and that the next week goes smoothly. Cath x

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We used to have the district nurses come and unplug the 5FU bottle and I know Cathy used to do Jonathans. We had a lovely big yellow bucket at home for the purpose!

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Hi Steve, sorry to hear about the liver troubles, hope the chemo can kick it back into line!


If the sickness is continuing to be a problem get a sickness driver or lots of people recomend Emend and I think I'll get Carl to ask for that next time.


You shouldnt have to go back into hospital to get the 5FU removed, like J_T says a district nurse should come over and unplug it for you. Save you the journey! If not get them to show your missus how to?


Hope you're feeling better!

Rob

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Slewis7313

Thanks yet again all for the advice. Just to clarify one thing, having the pump removed at the Chemo Centre actually suits us as we are less than a 10 minute drive away. It also offers up the opportunity of a cup of tea at Maggies. Had we lived further away, I am sure they would have given us other options.


The sickness is getting better and I am confident we will be able to manage it well going forward.


Steve

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Slewis7313

Got a call from my Specialist Nurse and have collected Metoclopramide from the Hospital Pharmacy. One of the drugs recommended by the lovely people here. Lets give it a shot!


Steve

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Slewis7313

Currently having my Folfirinox. WiFi in the chemo unit is a bit of a novelty, but it is easier to keep my girls updated on progress. Last week's bloods show my CA19-9 has now risen to just over 2000, but I am confident 'The Fox' will bring that down in time. I have also now been given a supply of Emend for the sickness, so all looks to be falling into place. No ill effects yet and I hope/expect the sickness to be more manageable this time round.


It is sunny outside, so I hope you lot are having a more fun Public Holiday than me, though mine can certainly be classed as productive. I have however entered into the spirit of the holiday, with shorts and sandals (no socks though!).


Steve

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Hi Steve, so pleased to hear no socks with sandals lol and by the way weather is absolutely terrible in my neck of the woods...


Really hope all goes well with chemo and any side effects are minimal.


Take care


Sue.x

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All sounds good Steve,


Yes, I think if you can get to grips with the sickness it will be much easier.


Can't believe the weather though... It's been grey and drizzly down here in London.


Cathy xxx

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Hi Steve,

I haven't been here much recently, am sorry to hear you have had a set back, but great that you are tackling it head on. Chemo on a bank holiday, that's impressive!

Hope you feel ok after this session.

Best wishes,

Nikki

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Slewis7313

I won't publish every day regarding my Folfirinox experience, but the last 24 hours have seen a big change from the first cycle. Nothing to report during the chemo yesterday, but the tablets seem to be making a difference. I have had no sickness (not even just feeling sick). The onset Neutropia was almost immediate and the tingling comes and goes, though not painful. The diarrhoea has even backed off for now which is a real bonus.


All in all, a massive improvement on cycle 1, so hopefully a sign of things to come.


Steve

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InfoForMum

Hi Mr,


Been away for a bit, but wanted to see how you all are. New googlies i note (careful not to typo that one)! On-going determination to kick the wee (insert preferred expletive)'s ass still in place - good stuff.


Emend - totally the ticket and hope it does the job. Usually given as a loading dose of tablet 1 immediately pre-chemo then tablets on days 2 and 3. It isn't a great follow on if you're already nauseous, unless they've created a "take it when you need it" version. There wasn't such a thing when I researched it to help Mum's on-going low level nausea post CRT.


Sending warrior vibes and hugs


Sarah

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Dear Steve, glad your chemo seems to be going OK. You are our inspiration and we look every day to see if you've posted. James' diarrhoea was getting worse and he is now so skinny, Creon OK, but a bit hit or miss. Anyway he now has a banana, your tip, before every meal and mostly this seems to help. Plus I'm sure the extra calories are helping. Does anyone have an opinion as to whether it's worth going for a really healthy diet, possibly vegan ? Before all this started he was pretty healthy, liked wine with a meal, OK probably most of a bottle and a pint or two each night at our local. However when it came to food he ate mostly fish and chicken and lots of sald and fruit and veg, with an occasional curry and Sunday roast. It would be good to get others' opinions in should he now avoid alcohol and just stick to the really healthy stuff or should he have a bit of what he wants. Also he was an ex- smoker, but I'm sure he has started again, although he won't admit this to me. Do you think I should persuade him to stop or is it better to let him enjoy this if it help? Sorry to appear selfish and obsessed with James, but I am and still thinking of everyone else with this most awful and evil of diseases. Fiona X

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Hi Steve,

Hope the chemo is going ok.



Fiona- my husband was told just an odd drink by his surgeon so he has a glass of wine once a week. I don't know if the surgeon meant he could only have this amount for ever, thought about e mailing him.I have tried adding shitake mushrooms and turmeric to everything. Hes been eating what ever he fancies including cakes and chocolate !


Take care

Jayne

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