Vinorelbine (navelbine)

Just about to start with this chemo - has anyone else had experience, this is the fourth type so I am used to chemo but as with all new things it is better to be forewarned. Did it work for you. My tumour markers are huge and getting higher by the minute. I have both bone and liver mets the liver ones are causing me probs at the mo.

I had vinerolbine from September 06 to January this year. I had it in IV form but it also comes in tablets. Do you know which way you are having it?
I found the only problem with it was that it has to be given quickly as it is a very potent vein irritant. They always used a heat pad, a blue needle and i had IV hydrocortisone in the vein before the vinerlabine and that helped. If they did not do those things I found my arm would be unusable and extremely painful for about 3 days!!
I got a bit tired by the 4th cycle but was OK till then. It had an immediate positive effect on my breathing and gave me my life back. It also helped my bone pain considrably as well.
Apparently, most people get constipated with it but I got diarrhoea which was controllable by loperamide or codiene and at low doses. My wbc dropped but I was never neutropaenic.
Hope all goes well - if you are having the tablet form then post that as other people have different experiences of this method.
Good luck and hope it really improves the quality of your life.

I had this 18 months ago - IV form, 6 groups of 3 sessions each with a week of rest. It was do-able in that there was little nausea, minimal hair loss, and I continued to do all my normal routines throughout. One scare about liver readings - but that was the lab cocking things up. A tendency to fall asleep if sitting down, occasional irritation in the veins, some loss of appetite.

My problem was neuropathic - it affected the nerves and muscle function in the legs, which meant that I could hardly walk, and climbing stairs was a mountain climb. This is comparatively rare, but if you feel you are wading through sand, that is what is happening.

It did work and brought the tumour and skin mets back under control.

I hope it works for you - with as little side effect as possible.

Thanks for the info, I am also having it IV and from the sound of things it sounds bearable … I think we just get used to the grotty feelings but good news on the hair front as mine is just beginning to grow and not too much nausea great… I’ll let you know how things go - it all starts tomorrow.

Thanks again for the support

Just remebered that I got a lot leg cramps and chest cramps whilst on vineralbine - a nuisance really but I hate getting cramp in my legs!! It’s rdiculously painful for soemhting like that!! It stopped as soon as I’d stopped the vineralbine though and I’ve been fine since.
My toes and fingers were already partly numb from taxotere already and I didn’t notice anything different with them.
Hope all goes well

Wisdens, Hi I am on navelbine and seem to be tolerating it quite well so far. I have it by infusion and get it on week 1, 2, 3 and week 4 I’m off. Then the cycle starts over. This Wed will be the end of my second cycle and so far I have kept my hair, blood levels have remained the same, I am slightly tired and need a nap now and then. I will say I didn’t know that muscle cramps were a side effect but I have been having muscle cramps every day and didn’t associate it with chemo. My cramps are in the back of my thighs and my shoulder blades. Thanks Kate for posting about the cramps. I will have to reread my literature. Funnyface

Thanks for the info shall look fwd to the cramps!! Better than being sick… I have wk 1 and 2 then wk off and start again. Funny face have you had any feed back as to whether it is working?

Wisden, I have a scan Aug 8th which is my off week from chemo. I will get my results at the next chemo session, unless they decide to phone me before. My cough and post nasal drip is slightly reduced but not much. My first line of chemo with secondaries was abraxane and avastin and just after two doses my cough and post nasal drip was gone. Time will tell, but at least the cough hasn’t worsened. Funnyface

Funnyface - good luck with scan - my oncologist likes to keep an eye on my tumour markers which are way up and no sign of slowing - I think they all work differently and of course the different types of this wretched disease.

My oncologist has never done a tumor marker. By the way wisden I have lung mets and chest lymph nodes. Funnyface

Thanks funnyface its interesting to know what other people have or maybe I’m just nosey but it seems to help that there are others out there with different dx and it’s good to see how the bc moves around with different people. I think the more info you have the more positive you can be as it’s all the uncertainty and waiting that drives us all crazy.

It’s a lovely sunny day here so may persuade hubby to take me to the seaside for a little amble along the seafront always good for positive thinking

Wisden, I see that you said this is your fourth chemo. How long have you had mets? This is my second for mets plus one for primary dx. It’s a sunny warm day here but expecting thunder showers in the evening. Then all the way through Sat. it is supposed to be sunny but extremely hot. Have a great time at the beach. Enjoy!! Funnyface

Hi funnyface, I have had mets since 2005 and only in bones which was held with capcitabene, then came back but with liver mets capcitabene again didn’t work then EC five cycles then didn’t work now on Vinorelbine. I was first diagnosed in 2001 and had CMF plus radiotherapy- oh yes I forgot allthe hormone type of treatments starting with Tamoxifen then arimodex then exemestane.

My liver is the problem so hoping this works, however the hospice care co-ordinator came last wk and said I was entitled to Disability Living Allowance, I thought it was weird as I am still working (part time) she said if you have a terminal illness you were entitled to it - so now have a huge form to fill in - they’ll not have to pay my pension so perhaps it’s OK?!!

How about you?

Wisden - don’t worry about the DLA form. You should fill in the form under Special Rules - it is designed for when you are not expected to live for more than 6 months - depressing thought but in reality they don’t question it as you just need your onc or GP to fill in that you have secondaries. That way you don’t have to fill in all the complicated bits about how much physical help you need or care etc. It is your right to get it as we never know with secondaries what is going to happen. There are loads of us here and the other site who have been claiming for over a year cos we need that extra help and as you say, we’ll never get our pension!!
Really hope you get good results from the vineralbine. I don’t remember rreading about muscle cramps but I know when I discussed with a pharmacist, he said it does cause cramps and nerve problems. I got very tired from cycle 4 onwards on vineralbine but before that it had transformed my life!!
Funnyface and Wisdens - good to see you contributing and nice for me to also see how this wretched disease effects people.
I was diagnosed in april 05 and had FEC initially as large tumour. Then a mastectomy but 8 weeks later had skin spread above my scar line so had 3 field rads plus boosters which has left me with lots of skin scarring and lung fibrosis. Then I had taxotere -a very miserable experience!!
I was diagnosed with lymph spread in my other axilla aug 06 and despite having crippling bone pain since may 06, my bony mets weren’t picked up till Sept 06 along with widespread lymph spread in my lungs and a small one in my liver.
My breathing improved markedly with vineralbine but only lasted 8 weeks after finishing before needing more chemo. Then followed with capecetabine which has reduced my liver and axilla one but my breathing is worsening despite not much change on CT so now on steroids. Feeling very high and energetic now. Still on herceptin (22 months now) and been refused tykereb as only my bones have worsened on scan so that makes me ineligible as can’t prove my breathing is worse on CT despite clinical signs!!! Think will chase this again and also d some researech into avastin -any ideas?
Hope you don’t mind me butting in. Tell me to get lost if you want to.

Kate - why would anyone want to tell you to get lost! You have so much information and experience, and some of us need your input. What you have said here is really valuable.

I think I’m having a steroid induced paranoia!!!
Thanks for your support Phoebe

Dippykate… don’t get lost we all need input whatever and the more info we have the more we can cope at least that’s how I feel. Thanks for the info re benefit, the hospice nurse said it was fine like you said you can be on it for a long time it’s only saying 6months to get Me the Patient to feel guilty and not claim. She the hospice nurse was lovely she said if you feel you don’t want the money give it to the grandchildren or pay someone to do the housework cos then it gives someone a job!!?

I was on steroids last month and I know what you mean I was in a whirl the family thought I had gone mad - then took to my bed totally exhausted.

Just had another mad whirl and trimmed all my lavender bushes at least they are tidy and I smell good.

Love to you all I’m off for a rest

Kate, I reread my literature on navelbine and it didn’t say anything about leg cramps. It does say it can cause weak muscles, so wondering if this is why the muscles might cramp then. Funnyface

Wisdens I have heard of others having injections to bring up the white blood count but so far I haven’t needed anything. Navelbine has been fairly kind to me. Funnyface

I started Navelbine just recently, and I’ve noticed a marked increase in bone pain…I have difficulty walking now, and can climb stairs with great difficulty and pain…