Folfirinox started on Wednesday and other stuff

[J_T]

We were so pleased to be offered this regimen but God its hard.

We thought at first Ray was going to get off lightly, he was knackered and that seemed to be it but now the vomiting has started. I suppose its early days and it could get even worse!
I keep thinking, he's got to go through all this and its not even a cure

He's very noise sensitive and we sit in silence most of the time, its very difficult. Everything seems to be so noisy, even the screw cap on the milk! I have to make sure doors are closed to minimise the noise in his bedroom if I'm trying to do something downstairs. I can't make any suggestions regarding food or drink (his appetite is non existent) as it makes him feel nauseous. I went in this morning having used sanitising gel on my hands and the smell made him sick.

It also makes you think about the treatments. Quite amazing I think, that in all the years of research they haven't come up with something that can damage the cancer cells without putting the boot in to the patient as well. Perhaps I'm just naive.

I'm just off loading really. Whenever I think its bad for me, I pull myself up straight away trying to imagine what its like for him.

[LindaH]

Hi J T,
You're so right about the chemo regime, if only there was something else which didn't give us such terrible side affects, it almost seem barbaric in this world of such technical break through, but in the war against cancer we still find ourselves hooked up to a line pumping substances into us which on one hand 'may' help, but on the other make us so poorly. Goodness what terrible situations we find ourselves in. I was seriously thinking about asking for the Folirinox, but I'm struggling on Cisplatin and Gemcitabine, so I probably wouldn't stand a chance with Folirinox....

Linda

[J_T]

Well, he's been feeling rotten with the nausea, so had an on call doctor came out last night and gave him an injection. Gone in this morning and he feels worse!

He has to starting taking new tablets today to stop infections. He's fed up already of all the tablets he's swallowing and the nausea doesn't help.

Grim.

[LindaH]

J_T wrote :
> Well, he's been feeling rotten with the nausea, so had an on call doctor
> came out last night and gave him an injection. Gone in this morning and he
> feels worse!
>
> He has to starting taking new tablets today to stop infections. He's fed up
> already of all the tablets he's swallowing and the nausea doesn't help.
>
> Grim.

I was just commenting on one of the other posts, that I take Cyclizine 50 mg. Which works well for me, might be worth a try.
Linda x

[PCUK Nurse Jeni]

Hi JT,

Sorry to hear about your husband and his battle with nausea.

Can you email me his medication regime in full, at support@pancreaticcancer.org.uk, and I will take a look and see what suggestions there might be.

Look forward to hearing from you,

Jeni.

[karen17]

Hi JT,
Sorry to hear that your husband is not tolerating the chemo well at present. Was he prescribed domperidone for the sickness? Bob takes domperidone on the day of chemo and is prescribed enough for the 5 following days. He also has dexamethasone which is a steroid for 2 days and GCSF injections for a week. He has been lucky in that he has not felt sick but I have heard lots of people say how good ginger is for nausea.
I've not heard of sensitivity to sound but believe tinnitus can sometimes become an issue. Bob certainly has a heightened sense of smell and I had to remove all the plug in's etc from our home. He spent weeks telling me about the awful smell in the bathroom blaming deodrants, my perfume etc till we realised it was just the stuff he sprays in the shower to keep it clean! The food issue is just dreadful and can be so fustrating. I get really upset with it and have to stop and think how selfish I'm being.
I guess you are on fortnightly sessions and hope that the next one becomes easier.
Keep strong for him and rant on here
Karen xxx

[Cathy]

Hi Julia

I said I'd check what Jonathan took. In fact, he is at home at present and checked for me. He is on an antisickness pill 3 x day for 3-4 days of Metoclopramide 10mg. He is also on 2 x Steroids for 2 days of Dexamethasone 2mg (although experimenting coming off more slowly).

I hope you get something sorted out quickly to give you and Ray some relief. I'm sure Jeni can offer some very good advice.

Let us know how you get on.

Kind regards

Cathy x

[J_T]

That's similar to Ray.

He has the Metoclopramide 10mg 3 x day but I think he's got more than for 4 days. He also has the Dexamethasone 2mg but they told him FOUR each morning for 3 days after the chemo.

[Cathy]

Hi

Would you say his coming off the steroids coincided with him becoming nauseous? If so it might be worth chatting to the oncologist about his coming off them more slowly. Jonathan was only on 2 a day for 2 days and coming off them made him feel yucky quickly so if Ray is on 4 a day then you would imagine an even bigger "dip" - this is why we are experimenting with them a bit now (seems to be working).

Hope that helps.

Cathy xx

[laura]

hi, bri had domperidone 10mg, was never actually sick, we then continued to use it as preventative, 2 tabs b4 food 3 or 4 times a day, our oncology team and our gp were happy for us to do that, he also found smell of fodd difficult, his choice of foods changed drastically, he did use meal replacements for some months, though would eat pickled onions and sherry trifle any time, oh well, no accounting for taste!!!! hope this helps, chin up, stay strong love laura xx
ps he never had steroids.

[karen17]

Hi Laura,
Have been reading through your posts and so pleased to hear of Brian's continued progress. Just wondered Laura whether Brian's tumour had spread to any other organs?
Karen xxx

[KATB]

Dad ended up in hospital last night with severe pain - upper abdominal I think.
It seems he wasn't keeping on top of his pain medication because he felt he didn't need them but he's been told he does need to keep taking them to keep on top of it.
He doesn't have the sickness now - I think he's OK apart from the pain which is quite severe. X-ray has come back clear so it's just about sorting out adequate pain relief now I think. I think they are keeping him in.

Apparently bilirubin is up slightly and the liver function is a bit off. They are checking the stents but I think it may be chemo related.

We'll see.
What a rollercoaster.

I'm at home trying to work and one of my brothers is there with mum texting myself and my other brother with regular updates.

Thank you so much for all your posts - the support is amazing and SO much appreciated.

[J_T]

What a 24 hours we've just had!

Our fault. Ray was experiencing no pain after chemo so stopped the paracetamol and Oramorph, however he did continue with the MST. They got the pain under control in hospital and we've just arrived home and he has gone for a well earned sleep. Hospital is NOT the place for sick people!

Unfortunately AND fortunately blood tests revealed his bilirubin levels are up and he has to have another stent by ERCP on Monday.

Our onc came to the bedside which was good of him as he was in another area today. He is happy to continue Ray on the Folfirinox with a reduced % of drug(s) - not sure if all or certain ones. He reckons Ray is one of those who needs a bit longer to recover so instead of next week his next cycle will be the week after, assuming his bilirubin is down (prays).

The other things we totally flunked on was making sure Ray was taking enough fluid. I had emailed Jeni for advice this week and she emphasised the importance of fluids which is obvious unless you're a bit a numpty like us. It all made perfect sense when somebody said it but while he was suffering side effects I didn't press it - LESSON LEARNED - I'm going to get bossy! Its probably because of this his stents are sludged up, we feel such fools.

Anyway, done now, we're determined to get on the right path and stay on it this time. Onwards and upwards.

Julia

[Cathy]

Hi Julia

Great news! It sounds like you are well on the right path now.

And don't feel guilty - it's such a steep learning curve. Jonathan got diarrhoea after his first chemo and got really dehydrated. Next time he gets it (if there is another time) we will know. Maybe even use rehydration sachets which were recommended to us.

Onwards and upwards as you say..

Cathy xx

[J_T]

Ray had a good day yesterday - drank over 2 litres of fluids and strangely his urine has gone pale again - dare we hope? He was a lot more chatty and 'with it'.

He managed to eat some salmon and broccoli and I've bought him papaya and pineapple. I found a website that said both these fruits are good for cancer patients(?)

Today he woke up feeling a bit ropey and is sleeping but we're determined to keep up with the fluids as we feel this might be helping.

Got a 40 mile round trip on Sunday just for a blood test but thankfully Blue Badge has arrived so that's one less headache, parking at Lancaster is a nightmare!