Have also posted this under treatments but know there’s a lot of experience here so duplicating.
I had my first cycle of navlebine and xeloda with relatively few problems but have just had 3 days of private hell on cycle 2. Had second injection of navelbine Tuesday and then on Wednesday (Day 9) of xeloda horrible diarrhoea (like 25 times a day…warned to come off tabs if more than 4! )and nausea began. Stopped the xeloda tabs, nearly had temperature high enough to hospitalise,…and felt worse nausea than at any time on either AC or taxotere (particularly hard for me as I have phobia of nausea and vomiting and is the side effect I most dread.) Only today feel normal after deadly low time…questioning point of treatments…(won’t go there in this post…)
Now worried about whther I’ll be able to contnue xeloda or whether I’ll get reduced dose. Message from onc said she suspected it could have been gastro enteritis but I think not. Anyone else had this reaction…any thoughts?
Jane
Hi Jane,
I have had bouts of diarrhoea at varying points during xeloda cycle but nothing as bad as you mention. There are a small percentage of patients who have an enzyme which is imcompatible with xeloda and so causes side effects but I have a feeling they test you for that before prescribing. Perhaps it was some stomach bug you picked up due to low bloods or similar? I am also led to believe that xeloda is still effective on lowered dosage (so why do they give us high doses, I keep asking myself?) so at worst, it may be worth reducing the dose, as you suggest. If it were me, I would try the next cycle and see if the symptoms repeat themselves and then you will have a better idea of the cause and can make a more informed decision re: continuing treatment.
Hope you continue to improve - watch out for a few days tiredness on your ‘off’ week.
Jenny
x
set live for Terry
Hi Jenny,
When my wife started on a high dose she too was sick, violently. They lowered her dose from 5000mg day to 4500 mg day plus they give her a special ( and very expensive ) anti sickness drug, specifically to combat sickness from Xeloda.
She takes it twice a day the day before the Xeloda cycle begins and then for two more days. Since that regime she has had no problems except for the relentless fatigue which we do not know if it is the Xeloda of the cancer.
Kind regards
Terry
Jane
I’m so sorry that you are having such a rough time. I definately felt very rough on the max dose for my weight ratio. I had bad diarrhoea and had to take max does of loperamide and codeine to stop it. They reduced the dose by a third and since then I’ve been fine apart from some peeling skin on my feet but then they have always been bad in warm weather!!! I tend to have to take domperidone for the first few days of the cycle and then am fine as long as I eat enough before taking the tablets ie I need cereal and toast before taking xeloda or else I get diarrhoea.
There have been some bad sickness bugs around so I expect you probabaly have had a bug at the same time as your white blood cells being low as you didn’t feel like this before on these drugs.I expect they will reduce the dose. My lowered dose has still shrunk my liver and lymph mets so don’t give up hope yet. I’m sure you will feel better on a lower dose and am sure it will still be just as effective.
Give me a ring anytime - I’m in a battle with my onc over the letter he has written to the marsden but that’s another story and is on the other site and gobby gang!!! I’m definately in need of moral support too so please ring and we can have lunch again!!!
Hope you feel better soon and that this doesn’t happen again to you.
Kate
I too am having a very hard time on Xeloda. Vomiting and diarhoea. Just come out of hospital after two weeks ( a lot of it spent in intensive care literally hovering between life and death). It is believed that the chemo contributed to the massive pulmonary embolism. I am now extremely weak and disabled and very very frightened.
Roisin
I was on Xeloda for 9 months last year and after a break to let my body recuperate I have been on it again for the past 3 months. I take a strong anti-sickness tablet called Ondansetron (8mg) just before my breakfast and evening meal. They are very effective, if I need a top-up during the day I take Domperidone. The Ondansetron are more expensive but they really work so insist your onc prescribes them. Good luck. Debs
Hi Jane
I’m sorry its been so rough on you. I’m on Capecitabine and also took a dose reduction but mine was because my bloods were so low every time. I can’t really help with the sickness etc but just wanted to reassure you that even if they drop the dose, mine is still effective so far. My dose is much much less than others here 3300mg per day and is doing the job.
Good luck
Love Kitkat
Roisin, so sorry you’ve been so poorly. Hoep you begin to recover soon. Sending a big hug
Thanks KitKat
They are dropping my 3600 a day by 25% which on my maths makes 2700 (don’t get the tabs to know for sure till this afternoon.)
I’m doing the xeloda with navelbine which may explain the lower start dose (and also they can’t know for sure which is causing the nausea).
Have been feeling pretty OK the past 10 days so not much looking forward to getting back on the treadmill…though my shoulder node lump has disappeared and other lumps shrinking…so something is working at the moment
Jane
Got the adding up Maths wrong…it was 3900mg, now dropped to 2800mg (I think!)
Jane
Hi Xeloda users!
I asked about the way the dose is worked out last week, and the onc said ‘not very scientific’. it is just based on weight and size.
I am feeling much better on reduced dose. Hope it works for you too, Jane, certainly sounds as though it is.
Jenny
x
Hi Jane
Sorry to hear you are having a bad time. I had dreadful nausea when I started xeloda. I went up to the chemo unit in tears because like you I have a bit of a nausea/vomiting phobia.
They gave me a 2 week break whilst the hospice sorted out my nausea. They were very patient and tried several drugs before finding one the stopped the nausea. It is called nozinan and I take it 3 times a day and have done so for the year I have been on xeloda.after the 2 week break they reduced the ammount from 2250 to 1800. Recently I have dropped again to 1500 but that is due to the hand and foot syndrome - so sore.
There is another very good drug for nausea called haloperidol also - didn’t do it for me but might help others.
I have been told that if you have a tendency towards travel sickness or morning sickness you are more likely to get nausea as a side effect. I am really bad with both. I am not sick as long as I am in the driving seat and all 3 of my pregnancies I had 24 hour nausea for 9 months. I know that doesn’t help you but it is an interesting theory.
My Mac nurse told me that there is no need for anyone to be sick there are plenty of drugs that can be used so I really hipe they find one to suit you, Jane.
It is worth hanging in there, I had a really awful first month or so but now I am still on it and have been stable for a year now.
Good Luck Jane
Love |Panda
just posted a new entry for advise as about to start comb of capecitabine & Vinorelbine(Navelbine)
Feel terrified after reading these posts. I haveny got any spread but cancer keeps coming back thru skin and had 3 ops in 8 weeks. Does any feel able to work thru this cos it seems I may be on these drugs for some time? Am I going to have any quality of life?