Folfirinox started on Wednesday and other stuff

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.

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

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.

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

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.

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

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

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.

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

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.

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

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.

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

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

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!

Hi Julia,

Glad to hear Ray is on the mend, and please do not beat yourself up about this at all. As everyone has said, it is a learning curve. One thing I would say, however, is NOT to alter any medication, especially pain relief, without consulting a medical professional. (I know you will not do this again, but this is by way of helping others). There may come a time when a person is ready to be weaned off at least some of their painkillers, but it needs to be done with the knowledge, supervision and agreement of the doctors.

Keep going with the fluids! Great stuff - you are doing a great job.

As for a 40 mile trip for a blood test - I am thinking "surely, there is an easier way?? Especially on a Sunday." Is it not possible for Ray to have his bloods taken at your local GP's surgery? Or a district nurse to come out and take them? 40 miles is along way to go for bloods? Do you know if your GP has its bloods sent to Lancaster to be analysed? If so, then it should be possible for these to be taken locally, and sent ahead of you - perhaps not at the weekend, but certainly on a Friday? Are these pre-stenting bloods? If so, this might be the reason, as they would need up to date bloods I guess.

Anyhow, just a thought. I hope the trip goes well, and the bloods start to settle.

Kind regards,

Jeni.

Hi Jeni, thanks, yes pre-stent (Monday) bloods so I guess we have to bite the bullet!

Ray is not really on the mend. He will have a reasonable day then the next he'll be exhausted again.

Julia

Hi Julia

How is Ray doing now? Is it this week he has his chemo again?

Noticed you are near Lancaster - a fellow northerner? We're heading up to Cumbria (all being well with Jonathan)this weekend (which is where I am from) to see my Mum and Dad. We'll give you a big wave and think of you from the M6 as we pass .

Kind regards

Cathyxx

Hi,

I'm not there but I'm getting texts from mum. I can't get up to their house this week due to appointments for myself and the kids, kids being off on polling day and also work. Plus, we are not sure if my niece is on the way to having chicken pox as it's going round her nursery and myself and my brothers have all been in contact with her this weekend so don't feel we can risk being around dad this week.

Anyway - I think he had quite a good day yesterday but then not well again last night and this morning. I think mum has emailed Jeni. He's experiencing symptoms that suggest to us he needs Creon. The oncologist was against starting Creon in the absence of symptoms, even though I mentioned the test Jeni told me about, but I don't think these symptoms are side effects as it's nearly 2 weeks since he had his chemo.

I think the chemo was supposed to be this week but it's being delayed a week in order to give dad a bit more recovery time. However, it's all so up and down at the moment - sometimes he seems OK and then later in the day he feels poorly again.

It's a hideous rollercoaster - I hate, hate, hate it and I feel helpless and useless. I can't even be there for mum at the moment - I just wish we lived nearer so I could pop in.

Kate

x

Wrote a long post on my Kindle Fire and lost it grrrrr!

Hi Cathy we are further north than Lancaster but that's where we go if Westmorland General can't action what needs to be done. We're originally from Manchester.

Ray has felt progressively better during today, though he's still not eaten. He was being more mobile and eating a little better then last night he went to loo a few times with griping pains and this morning was retching and had a bit of loo time! I cancelled the stent procedure and they are going to rearrange although his bilirubin is now at 22 so not sure if it will need to be done.

GP has been, he's a nice bloke. He seems to think as the loo trips are not in any way continuous Creon still probably not needed.

Hope Jonathan still continues to be well.

Julia x

Hi Julia and Kate

You both have your hands full don't you? Good news to hear that Ray has been feeling better today. Long may that last!

Jonathan has been great this last cycle but often refers to his first cycle and has said that that was the worst in terms of his side effects and each time it isn't so bad - he ended up dehydrated in hospital after the first cycle after a bad bout of diahorrea which he has not had since. What the first couple of cycles did was help highlight what might help in future (so we now have an arsenal of stuff to help if we need it e.g. mouth washes, constipation drugs, diahorrea drugs, anti biotics etc). I'm sure it's the steroid advice we got from Jeni that has made the difference this time. Of course, we don't know what will happen in future cycles but I hope that this gives you hope that just because Ray has been poorly this time, doesn't necessarily mean that he will be so poorly the next.

Everything is crossed for you as always

Cathy xx

Cathy, thank you so much for that post. So glad to hear Jonathan hasn't felt so bad in subsequent cycles. It does make me feel hopeful that it wouldn't necessarily be so bad for dad after the 2nd cycle. I agree that we now know a bit more about what to expect so we can be better prepared. We already know that keeping fluids up is hugely important, keeping on top of the pain medication etc. so we are learning! I hope the irinotecan infusion is better managed next time too now that we know dad reacts to that.

I wonder if we need to address the steroids differently? Must look into that if mum hasn't already.

Kate

x

Hiya Kate

Yes, it is most certainly a very steep learning curve!

Jonathan always double checks now when he is about to have the chemo that he is getting his double atropine shot and that his irinotecan infusion is going to be given much more slowly - it isn't always noted each time for the nurses so it might be worth your Dad doing that as well, just to put his mind at rest. Jonathan hasn't had a problem with the irinotecan since that first time with those changes in place.

It might be worth chatting to the oncologist about the steroids. Jonathan has his 6th chemo session on Wednesday so I'll let you know if that trick works again.

Best wishes

Cathy xx

Hi Cathy, thanks so much for that. That clarifies what we need to raise in terms of irinotecan and the steroids.

Honestly, what would we all do without this forum? We all have to be so on top of what is going on - it's not as though we can sit back and trust that absolutely everything is being done correctly. It's harder work than it should be in that sense.

Kate

x

Hi Kate and Julia,

Just to reiterate what Cathy said about the irinotcan. The first couple of times Bob had it he also reacted really badly. He now has atropine given at the start of the session and they have slowed down the infusion time. It does mean we are there for hours and hours but hey hoe! He also felt rubbish for the first 2 cycles but know sails through it. He does have steroids for 2 days following chemo and was prescribed creon. I'm not convinced he needs the creon but I don't think it does any harm anyway. He is also prescribed loperamide for diarrhoea as he tends to suffer a couple of days after chemo.

Hopefully Ray will feel better next time. I agree with you Kate in that I also just hate hate hate this disease. All of our lives have changed dramatically and I guess that like me thats all you can think about from the moment you wake up. Generally work helps as I'm too busy to think but on odd days I can be so low that I don't know how I'm functioning at work at all. Then I just need to think of Bob who seems to be managing much better than me!

Anyway fingers crossed for Rays next session