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Vinoralbine

20 REPLIES 20
TORONTO
Member

Re: Vinoralbine

Hi Joy,
So pleased it went better for you yesterday.
I hope they give me ondansterone next time, I had a prescription for the three days after taking it which doesn`t make much sense as my problem is immediately after Vinoralbine.

I have had a pretty rough week, I am suffering mainly from feeling bloated which is causing havoc with my appetite, I just can`t face food! Also I have had constipation which I took sennakot for and have now gone completely the other way. My whole system seems in a mess. I had a really busy social weekend planned,a Christmas dinner on Saturday and a golf club lunch on Sunday and we have just cancelled everything.

On a positive note I have been coughing so, so, much over the last few months and suddenly it has just disappeared, I haven`t coughed at all for quite a few days now.

The indigestion tablets they prescribed were Lansoprazole.

After reading through the above I sound like a real hypochondriac!!
maybe that`s what I am turning in to!

Have a wonderful time at the theatre I am green with envy!
Take care,
Love ,
Janx

jumpforjoy
Member

Re: Vinoralbine

Hi Toronto
Thanks for your good wishes
Well, I had my third dose yesterday and they prescribed ondansterone this time. It seems to have done the trick - touchwood - I have not been sick (I took it at 1pm yesterday). I felt and still feel nauseous, but much better than the last two times. I am a bit worried abot constipation now, but I have laxatives at the ready!

Well done playing golf, as long as we can get about and do things we normally do then things don't seem so bad! I have sort of written Thursdays off now as a lost day which I spend at the hospital, taking the tablets and then just lying about on the sofa, but from Friday I begin to feel better and start doing things again. By the way what did they give you for the indigestion?, now that you mention it, I have also been experiencing that.

I am in London tomorrow at the theatre (Avenue Q) and having a meal. So hope I am feeling Ok for that!
JOY

JOY

TORONTO
Member

Re: Vinoralbine

Hi Joy,
Hope it goes well for you tomorrow, I will be thinking of you.

Monday wasn`t too bad for me I had my second Vinoralbine.I managed to go TEN hours before vomiting!!They prescribed ondansteron for the three days after my dose and also gave me medication for indigestion (of which I am suffering terribly!)

I managed to play fourteen holes of golf in the freezing cold yesterday, so must be feeling a bit better although I found it a real struggle!
Take care,
Love Janx

jumpforjoy
Member

Re: Vinoralbine

HI Toronto
The result of my call to oncology is that they are planning to prescribe me ondansetron before I take my next dose next Thursday. So fngers crossed that it will work, I will let you know. Good Luck for Monday.

JOY

TORONTO
Member

Re: Vinoralbine

Hi Joy,
So sorry you had such a terrible time, I know just how you feel.
I am having my second dose on Monday and am dreading it.

When the nurse gave me my first dose I asked what I should do if they made me vomit and she said in all the time she has given it she had never heard of it happening to anyone. I find that hard to believe after our experience.

However I have had a pretty bad week, very sore mouth, fatigue(which I have never had before with past chemos) and loss of appetite..I have lost four pounds. Therefore I can only assume it did get into my system.

I am seeing my Onc before my next dose, I will let you know how I get on.
Take care,
Love,
Janx

jumpforjoy
Member

Re: Vinoralbine

Had my second dose of oral vinoralbine. Ths time took the anti-sickness beforehand and did evverything to the letter. I still vomited about 2 hours after taking the tablets. I felt terrible all evening and had a bad headache as well as the vomiting. That was yesterday, today I am feeling better. I am no longer being sick, but still feel slightly queasy. I am awating a call back from oncology. I rang to ask advise on what to do. I really don't want to take any more of this drug until I have advice on what they can do about the vomiting.

best Wishes
JOY

jumpforjoy
Member

Re: Vinoralbine

Oh Dear -sorry to hear you had a bad time with the Vinoralbine, or maybe it was mainly the Herceptin. I am not suitable for Herceptin, so have no experience of that. I am having second dose of Vinoralbine tomorrow, will let you now what happens. Meanwhile, I am becoming addicted to ginger biscuits!

JOY

TORONTO
Member

Re: Vinoralbine

Hi Harrybar,
Thanks, I will mention it to my onc. next week, I will try anything not to go through that again, in fact the whole experience left me feeling drowsy anyway, today!,
Many thanks,
Janx

Harrybar
Member

Re: Vinoralbine

Hi Toronto
I too had a reaction to herceptin like yours whilst in clinic and was given piriton alongside which eased the problem but made me very drowsy. I now have piriton before herceptin is administered and works very well.
Harrybar

TORONTO
Member

Re: Vinoralbine

Hi JOY,
O.M.G.what a night I have just had!!

My treatment yesterday was a booster dose of Herceptin followed by oral Vinoralbine.

They gave me paracetamol to stop side effects from Herceptin and an anti sickness tablet before Vinoralbine.

Neither worked, about two hours after I got home, I started with a headache followed by a massive reaction to herceptin, it was like "cold turkey" I was shaking like a leaf,I was in bed with hot water bottles, double duvets etc. and then the dreaded vomiting. The whole thing only lasted for an hour and a half but it felt like days!

Like you I didn`t expect the sickness, and I am really worried that the tablets didn`t get into my system, it was only two hours before the vomiting

I have just had a word with the triage nurse and she said they will possibly change it to introvenously I have to see my onc next week.

Sorry for the ramble I think I must still be in shock!

Must go out and get some peppermint tea and ginger biscuits, do hope you are feeling better now.
Take care,
Janx

jumpforjoy
Member

Re: Vinoralbine

Toronto
Good Luck with your first dose. Like all chemos, you never know what side effects, if any, you are going to get. Let's hope you don't have any. The sickness I had was a bit unexpected (I expected nausea), but I hope thay can sort it out. After all, I had very bad hand and foot problems with capecitibane and they managed to sort that out after a bit of trial and error with the dosage.

Let us know how you get on.

JOY
PS: I am drinking peppermint tea and eating ginger biscuits, both quite pleasant and supposedly good for nausea!!

TORONTO
Member

Re: Vinoralbine

Hi Girls,
Back over the weekend after an absolutely brilliant holiday in Tenerife, and I am just off to the hospital for my first dose of Vinoralbine (talk about coming back to earth with a bump!!)

I am also going back onto Herceptin, even though my LVEF is really low, I have no symptoms of heart failure, so my onc. has decided to give it another go.

Just fingers crossed that I don`t get the dreaded nausea ( I am having it in tablet form so I my biggest worry is that I can`t keep it down!) Oh the joys of chemo!!

Take care,
Love,
Janx

jumpforjoy
Member

Re: Vinoralbine

Thanks for your comment, Marmite. I am planning to ask for stronger anti-sickness medication, but good to be aware of constipation problem as being forewarned is being prepared! Sorry to hear it eventually failed, but glad to hear the Carboplatin/gemcitibane is working. I will know if the vinoralbine is working after about 3 months when I will have a CT scan. I just hope they can keep coming up with alternatives if this chemo fails.

Best Wishes
JOY

marmite
Member

Re: Vinoralbine

I too had problems with nausea and sickness when on oral vinorelbine last year, even though onc said it wouldn't and I had managed nausea with all my other chemos. Finally sorted it when they gave me ondanseron (anti-sickness) first but it does make you constitpated though. Had to take masses of movicol. Unfortunately chemo failed after 6-9 months so now on carboplatin/gemcitabine which seems to be working for the moment.
Marmite x

jumpforjoy
Member

Re: Vinoralbine

Well, I have had the fluid removed from my lungs and this has stopped me coughing and feeling out of breath. So far so good. I went to clinic yesterday and was given my first dose of Vinoralbine. About 5 hours after taking it I vomited about three times I still feel sick, but am about to have breakfast, so I am keeping my fingers crossed. I have just got back from GP surgery where I had flu jab, next week I am having the swine flu jab too, after taking advice from the oncologist.

I have been spoilt by the Capecitibane, as I had no feelings of nausea at all with that! But that has stopped working for me.

Take care everyone.
JOY

Barbaralynne
Member

Re: Vinoralbine

I'm taking Vinorelbine but in capsule form and also Herceptin. I'm sorry to hear your're having such a bad time with it. I have been having 120mg weekly for the last five weeks, my next dose is tomorrow. So far I've found it very easy. I take a couple of domperidone just before the Vinorelbine and that's it. I haven't felt any nausea or tiredness but I haven't suffered much in the way of side-effects on any of the chemos I've had and have worked all the way through apart from six weeks just after my surgery.

I have also had Capecitabine together with Lapatinib which was effective for about a year. I tolerated this combination well, except for extremely sore bits at the sides of my toes and occasionally, fingers (only one or two at a time, luckily!)

My diagnosis was in March 2005 and I've been having treatment ever since, due to skin mets which appeared just before I was due to finish Herceptin.

Barbara

juliet66
Member

Re: Vinoralbine

Hi Jan,

I have been thinking about you these last few days and was wondering how your results were.

Sorry that you have had progression, but hopefully its not too bad!!
Good luck with your next treatment.

Have a lovely holiday.

Julie xxx

TORONTO
Member

Re: Vinoralbine

Hi Joy,

Like you, I would really like to hear from other peoples experiences of this chemo.

Think we are together on this one, although Capecitabine hasn`t really worked for me (I have secondaries in my lymph nodes and lungs)

I saw my Onc yesterday and he said I had progression in my lungs, not major, but after six cycles of Capecetabine and a three month break he has decided to switch to oral Vinoralbine.

I, like you am sad to be coming of Xeloda as it was so gentle compared to my past experiences of chemo.

I am going on holiday with the family next weeekend for a couple of weeks so will start treatment on Nov 23rd

Please keep in touch,
Take care,
Jan

jumpforjoy
Member

Re: Vinoralbine

I have just returned from visit to hospital. I have been on Capecitibane (Xeloda) for about 2 years, but have recently been experiencing a cough and breathlessness (I have secondaries in lung, liver and bone). They have decided to change me onto Vinoralbine (in tablet form). I am therefore interested to hear of other people's experience of this chemo. I have to have my lungs drained first, as there is evidence of quite a lot of water there, afterwards I will be put on a course of Vinorelbine. I will let you know how i get on.

I am sad to be coming of Xeloda, as I tolerated this very well, I only had the hand foot syndrome side effect and it has kept me stable for 2 years.
JOY

bigfub
Member

Re: Vinoralbine

Hi Kelley,

My wife had similar effects when she was on this type of chemo. Initially they lowered the dosage but eventually she was swapped onto taxotere as the vinorelbine wasn't working as well as it should.
Best of luck with it though and small consolation that it may be, you should keep your hair with this type of chemo 😉
Stuart

Kelley
Member

Vinoralbine

Can anyone share their experience with this chemo? My first cycle seemed quite good and apart from my vein problems which hopefully is sorted out now I have a portocath, I thought it was going quite well. But having to have it 2 out of 3 weeks is very wearing. My second dose in cycle 2 really knocked me for six and I spent 4 days doing little but sleep. I've just had the first dose of cycle 3 and I've felt as bad as last time and also nauseous. Does each one get worse?
It's made me realise I can't cope with work anymore so I've decided to go off sick after half-term on the assumption that my second dose, due on Wednesday, will make me feel even worse.
I know I shouldn't complain with everything that some of you are going through, but the thought that the rest of my life may well be chemo after chemo is getting me down a bit.