Folfirinox and effects

[Brian]

Hi there, my wife who is 51,was diagnosed was pancreatic cancer in April and has had 3 cycles of Folfirinox chemotherapy and is due the 4th cycle on Thursday. She is scheduled to have 12 cycles. However her quality of life has not been good. She has had sickness every few days and last week had 4 days of diahorrea which resulted in her being unwell and I had to take her to A&E at the hospital where she was diagnosed as being dehydrated and required intravenous fluids. Her main issues are that she has no appetite at all and does not feel like eating and drinking and is fatigued.

She is quite despondent about it all, especially as she has lost a lot of weight. All the advice she gets is to eat whatever she wants, small amounts often but she doesn't feel like eating anything,

Brian

[J_T]

Hi Brian and welcome to the forum. Sorry to hear of your wife's diagnois but you will get lots of help and advice can be got from the nurses and members of the forum.

Has your wife had any of the doses reduced, or her infusions slowed down? This may help to better tolerate the regimen which as you know is very toxic. Does your wife use Creon, the pancreatic enzyme replacement that you take with every meal and snack?

My husband had his Folfirnox doses reduced and now has minimal side effects, the main one being fatigue, which is cumulative unfortunately. We were prescribed more steroids on a reducing scale to follow his sessions and this has helped somewhat. he also had a week off when he was feeling exhausted and down, this also helped him rebuild his strength for the next session (he had cycle 5 last Wednesday). We also finally got prescribed Creon. Although he didn't have the usual symptoms (Steatorrhea)the nurses here encouraged us to push for the faecal elastase test (definitive in knowing whether there is a need for supplements) which we did and he's been using Creon for just over a week.

You can always phone or email the nurses, Jeni and Dianne, who are very clued up and helpful.

Best regards

Julia

[Brian]

Hi Julia, thank you for your post. My wife has been taking Creon from day one, 2 for a meal and 1 with a snack. She does have a problem swallowing them but does persevere with them. Also after chemotherapy she is given steroids for 3 days but again does nothing to stimulate her appetite.

We are due to see the oncologist tomorrow and will be asking the questions you have suggested about dosage and frequency as she definitely can't continue the way she has been.

Brian

[J_T]

Brian, what dose Creon does she have? I am new to Creon but received very useful advice in an email from Jeni one of the nurses here. We are not at a specialist centre and our onc, whilst very helpful is not, or doesn't seem to be, very clued up on Creon, so Jeni's advice has been invaluable. You can email at support@pancreaticcancer.org.uk

Its very important to drink lots of fluid, especially after a chemotherapy session - info again got from Jeni!

My husband was also not very good after the first couple of cycles. In fact he slept for most of the time after the first one. He spent a night in hospital after his stent got infected and was feeling pretty grim, but he has come back from all this amazingly well. He stills gets fatigued at around day 6 following treatment but all other side effects seem to have subsided.

Julia

[Brian]

My wife takes Creon 40000, 2 to be taken 3 times a day with meals and 1 tablet with snacks. She has a big problem with drinking and eating as she keeps telling me that she 'doesn't feel thirsty or hungry'.

However we have the regular appointment with the oncologist tomorrow afternoon and will be more forthcoming with our questions in order to try and improve my wife's quality of life and alleviate her anxieties as much as possible.

Brian

[KATB]

Hi Brian - why don't you send the PC nurses a quick email now outlining your concerns? If you send it tonight they may get back to you in the morning before your appointment. I can't tell you have valuable they have been to us in terms knowing what to ask about and understanding what is said. They are honestly brilliant and will give you personal advice based on your wife's situation.

Kate

[Bee]

Hi Brian,

Sorry to hear of your wife's diagnosis and that she is feeling so unwell. It is such an awful illness and so hard for all of you. I have read the posts on this thread and see she already has creon. Perhaps you could ask to see a dietician tomorrow, my husband saw one at diagnosis and aside from dietary advice and specific advice on creon, he also arranged for lots of samples of high calorie drinks, (400 calls in 200ml of fluid). They come in juice and milkshake style, my husband had lots of freebies to try and then our gp prescribed the ones he liked. We have had several prescriptions with no problem. At least if your wife's appetite is small she would still get calories but in a small volume.

Hope all goes well with your appointment tomorrow

Bee

[LindaH]

Hi Brian

I found the only thing I could really stomach when I was feeling terribly sick, was Complan.

I found this to be really good and besides milk shakes they also do soups which I felt were much better than ordinary tinned soups.

I hope she is feeling better soon, there's nothing worse than feeling so poorly you cannot eat.

take care

Linda

[washingtonmike]

Good Morning Brian:

I'm headed in for my fourth treatment on Folfirinox this morning as a matter of fact. The last couple of days have been just splendid and I've felt very well indeed but for a few minor aches and pains of being 71 yo .

I intend to ask my oncologist about pancreatic enzyme supplements today as I've had none up to this point. My appetite is adequate though I can no long eat full meals but instead make them smaller and more often and more of the things I truly like. I couldn't believe that two nights ago I took my family out for a dinner and I was able to consume the entire meal for a change.

For nausea I've been taking Zofran as needed and my oncologist switched me to twice a day. Last week I had a third bout of extreme nausea, it came out of the blue, with violent heaving which left my entire gut sore and aching. The Zofran also seems to be very constipating. For that reason I've cut back to as needed and this morning had a complete elimination (never thought I'd be happy about a BM) .

I do use Ensure as a dietary supplement and clear broths and, sometimes, canned soups. I do prefer the broths when in recovery mode, then add a few soda crackers, then possible a canned soup, etc. building back up slowly.

My best to you and yours. Cheers, Michael

[suef]

Just a note about Creon, after a Whipple 3 years ago, I take 15-20 capsules every day, of the 25,000 strength, dispersed between meals and snacks. I also recommend Fortisip as meal replacements.

Good luck!

SueF

[PCUK Nurse Dianne]

Hi Brian,

I just wonder how you managed with the oncology appointment last week. Please feel free to email me on the support line (support@pancreaticcancer.org.uk) or phone on 020 3535 7099 as I may be able to give you some more individual advice that would help with your wife's current nutritional state in an attempt to improve things for her.

Kind regards,

Dianne

Support Team

[Brian]

Thanks Diane and to all who have posted messages.

On seeing the oncologist a week past on Wednesday it was agreed that for the following days treatment to reduce the strength of the chemotherapy by 25% and we really hoped that we would see a difference. Her dose of steroids was increased to 3 a day for 3 days then 2 a day for 4 days then 1 a day for a week in an attempt to improve her appetite. However, I regret to say that she is no better. Since her chemotherapy treatment she has been up in the middle of the night with an upset tummy on 6 occasions, two night with sickness and 2 nights managed to sleep all night.

I have started to keep a diary of her daily food and liquid intake as I did not want her to end up in A&E with dehydration again.

She takes 30gm of cereal with 60ml of whole milk and 200 ml of orange juice in the morning. Also to take her tablets she has 200 ml of water up to mid day. Usually about 1pm she will have either French toast made with double cream and large organic free range egg or 3 Tuc crackers with pate. Occasionally she will have a wee scoop of ice cream in evening but that's about all she eats. In the afternoon she will take another 400 ml of fluids.

However over last fews her energy level has reduced even more and today for first time she hasn't had energy to get out of bed.

If she is the same tomorrow I will need to phone the hospital as she is due to see her oncologist on Wednesday and I'm not sure what happens if she hasn't the energy to travel.

Not a good day.

Brian

[J_T]

Hi Brian, so sorry to hear your wife is in such discomfort, even after her chemotherapy has been reduced.

Maybe this regime just doesn't suit her but I'm sure your onc will know more about that.

Jeni, one of the nurses here did tell me that you need about 2½ to 3 litres of fluid a day whilt on chemo and not much less when not on chemo, a hard task for anyone I would say! I think we managed between 1.7 and 2.5 litres.

We have also had occasion where Ray needed a wheelchair for an onc appointment and another where he couldn't make it and me and my daughter went on our own. He DID improve greatly and is quite well in himself at the moment.

I do hope you get the right treatment sorted that your wife can tolerate. Its bad enough having this awful disease and then the treatment wipes you out, its just not fair!

Fingers crossed she starts to feel better soon.

Julia x

[Brian]

Thanks Julia....I did call out the GP on the Tuesday as Michelle was no better and I was really worried about her. She was feeling very down, saying she it was a living hell and what was the point of it all, also not wanting to eat or drink. The GP took blood and had a long chat with her and she did pick up and managed to eat and drink something. However it was agreed that as her oncologist was on holiday for the week that she would not attend her 2 weekly oncologist appointment and delay chemotherapy for a week.

Although she has still is very weak and is limited to doing very little I felt she ate and drank better over the past week and slept more often during the night. The very hot weather could also have been a factor in her feeling weak and tired.

Her oncology appointment has been rescheduled for this Wednesday and the 5th cycle of chemotherapy on Thursday if her blood levels are all ok. But in general I would say that the reduction in the strength of the chemotherapy by 25% made little difference to her and I am really not sure what is the best for her now and will have to wait and see what her oncologist says on Wednesday.

Brian

[Cathy]

Hi Brian

It is a tough regime that some people seem to tolerate better than others.

My partner had 8 cycles of folfirinox, some of the cycles he tolerated far better than others but the last one did knock him out. I have to say though that a break in treatment between the 4th and 5th cycle really did help so you may find the same with Michelle.

We're on a break now but we see the onc later today and will discuss future treatment. I hope all goes well at your appointment. I'm sure there will be alternatives if the folfirinox really isn't for her.

Cathy

[J_T]

Hi Brian, really hoping the week off treatment has allowed Michelle to rally a little. Let us know how you get on tomorrow.

Julia x

[Brian]

Hi, Michelle had her appointment with her oncologist yesterday and it was agreed that she would continue with a break from chemotherapy for another three weeks. The oncologist did say that it was difficult to determine whether Michelle's weak and tired state was caused by the chemotherapy or the cancer. We asked for hormonal tablets to try to stimulate appetite as the previously prescribed steroids have had no effect at all and have now been prescribed Megestrol.

Also Michelle has an appointment for a CT scan next Wednesday which will indicate how effective the Folfirinox has been.

Thanks to all of you for your messages of support.

Brian

[Cathy]

Hi Brian

My partner is doing really well on his break, it's done him the world of good so fingers Xd for Michelle and for next week. Keep in touch and let us know how you are getting on.

Kind regards

Cathy x

[Brian]

Thanks Cathy, that's great to hear. I will let you know how things go and I hope it continues to go well for your hubby.

Brian

[Brian]

I'm sorry Cathy, I should have said your partner. My apologies.

Brian

[J_T]

Hi Brian, here's hoping the rest from treatment will help Michelle feel stronger. It certainly seems the sensible thing to do.

Take care

Julia x

[Support Team]

Due to technical problems earlier I am having to repost this message from Brian. Sorry about this. Anna, Support Team.

Re: Folfirinox and effects

by Brian » Mon Aug 12, 2013 10:21 am

I am delighted to say that the break from chemotherapy has made a great deal of difference for Michelle. Over the last two weeks she has regained more energy and strength and also her appetite has improved. In fact she actually said one day that she felt hungry....I was so happy I almost cried. She's having breakfast, lunch and and a dinner again....maybe not the same quantity as before but that doesn't matter. We have managed to go out for walks twice a day and that has helped both of us. She had a scan two weeks ago and we have an appointment with the oncologist on Wednesday to hear the result and subsequently discuss what the next steps are.

Brian

[Bee]

Hi Brian,

Really delighted to hear your wife has benefitted from the break in treatment. Sounds like you have been able to enjoy some lovely time together.

Good luck with the appointment n Wednesday, fingers crossed

Bee x

[Cathy]

Yippee!!

That is great news Brian. Let's hope you have equally great news about the scan.

So now hopefully Michelle will go back to treatment feeling much stronger and with spirits raised.

Cathy xx

[J_T]

So very pleased to hear this news, Brian. I've been wondering how Michelle was getting on.

Hoping she kerps on the upward curve.

Julia x