hi,i have just started oral vinoralbine on wednesday.im having awful lower back cramps.anyone else had the same.im also on herceptin.
I start oral Vinorelbine tomorrow. No clue as yet what the real SEs will be. Happy to keep you company on this journey.
hi cat,let me know how you get on and what dose you will be having.im on full strength,160.feeling a bit better today,at least i have got dressed.lol.take care.janet.
Sounds like you’re totally wiped out with this chemo. I think I’m starting with two tablets tomorrow and due a review in four weeks time to see how things go. Has the back pain got any better? Do you think this is cause by Vinorelbine or Herceptin? ImHER2+ but I can’t have Herceptin because I’m really allergic to it. Last time I had it, it pretty near killed me.
hi,i think the back pain is the vinoralbine as its just come on since taking the tablets.had 92 infusions of herceptin so its not that.im on 4 tablets plus steroid and sickness and get revieved in 6 weeks.the back pain has eased off a bit now so hopefully it wont come back as not very nice.see how i get on wednesday after the second lot.janet.
My oncologist gave me steroids but I was under the impression that these were only to be taken if I got sick. Will have to check, I guess. I was told to take anti-emetics an hour before Vinorelbine, not looking forward to that because they always make me sick. Wow, 92 infusions of Herceptin, you go, girl!
Hi there
So, I tok my first does of Vinorelbine today, got stomach cramps from the anti-emetics, raised temperature and shivering and freezing cold hands and feet. Rang the hospital and the oncologist said this was all normal and to be expected. I wish that he had been more specific about the side effects. Pretty scary. There was me with a hospital bag ready and getting neighbours to take my five year old, as well as thinking how to say good bye :-s
Did you experience this?
hi cat,i got the shivers as well,but always have cold hands and feet so cannot relate to that.glad everything turned out ok.i will let you know how i get on wednesday after my second dose.im not too bad today so hope this continues.x
Glad you’re doing OK. My oncologist said the reaction I had today was to be expected and doesnt anticipate it happening again, so hopefully for you things will be better on Wednesday 
Hi Janet
Hope the Vinorelbine went well for you today.
Cat
hi cat,so far its good up to now thanks.but it was early hours in the morning last week when the back pain came on so will have to see.hope you are doing ok.
well never slept at all but apart from that feel ok,no back pain today.gonna take a sleeping pill tonight as cant cope with no sleep.hi cat,hope you are doing ok aswell.
Good news that there’s no wak pain, but boo to the lack of sleep. I didn’t sleep at all Tuesday night either, it was horrid.
I’m doing OK, had acupuncture yesterday which perked me up no end, and am feeling almost human today. Had a bone scan today so that ewe teo tripe to hospital, so missed reading with my kid at school for World Book Day, but at leat I got him to school, the first time I’ve managd this in weeks
Hope your doing well today.
well had my forth lot of vinoralbine on wednesday,i have a pattern when i know im not gonna be too good so can plan a bit if i want to go anywhere.ended up in hospital last monday but bloods were ok so put it down to a virus,only stayed in overnight so that was ok.hi cat,hope your doing ok.have you got scan results yet.
Hi Janet and Cat, You have no idea how useful your posts have been to me. I have been on Capcitabine twice and my Oncologist mentioned this drug to me last year. I am not on any chemo at present but my tumour markers are rising and I could either go back to the drug I was on or try the one you are both taking. I am hoping to delay the starting of either until later in the year. I see her again when I return from a holiday in April. I have extensive both mets but have had this for 12 years now. Good luck to both of you and I think it is great that you have each other to bounce off. Love Val
hi scottishlass, glad you are doing so well.i have had capcitabine twice but the second time it never worked so was put on oral vinoralbine.i have had 4 up to now,one dose every week.i have not been as bad as i thought i would be,mainly 2 bad days a week where i dont even get dressed but its just cause im weak and shaky when my bloods are low.having a scan mid may then going abroad for a week in june.have a great holiday yourself,we all deserve one.xxx
Hi guys
Sorry I havent posted for a bit. After two doses of Vinorelbine I became really ill. I have had every damned side effect going, including acute constipation which landed me being admitted to hospital a couple of times. Things were so bad that I wasn’t allowed to completed the first cycle of Vinorelbine. To add insult to injury, now my hair has fallen out 
I saw my oncologist yesterday and he was not happy I hadnt completed evening cycle. The scans vie had int he past couple of weeks show the tumours are growing aggressively in my liver but thus far haven’t spread anywhere else. My oncologist keeps telling me that if nothing slows it down, death will be happening really soon. He’s approved my husband’s application to have our mortgage paid off because I am now classed as terminal.
I have funding to pay for Lapatinib but my oncologist only found out yesterday and hadn’t sent he terms of the funding. He doesn’t want to do the traditional combination of Lapatinib with Capecitqbine, given that the latter stopped being effective for me. He wants to do Lapatinib combined with weekly Taxol.
I dont know much about Tqxol yet but weekly intravenous chemo that is going to make me feel really I’ll, I wonder what the point of it is. It isn’t going to cure me, it might just keep me alive for a bit longer but what kind of life is that? My oncologist is having a case conference about me with other specialists today and will phone me later to tell me his recommendations. I just don’t know what to do anymore! I can’t bear the thought of my five year old son having to see me ill and in pain, I want him to remember his happy mummy. He knows I’m not going to get better and wants to see where I will be buried. I just don’t know what is the right decision any longer.
ho cat i am so sorry you have had bad news,i really dont know what to say apart from sending you lots of hugs.i hope they sort a plan out for you.my best wishes,janet.xxxx
hi Cat,
I just had to post to say I am thinking of you. Oral Vinoralbine did nothing for me, and I started lapatanib and cabecitobene a couple of weeks ago: although cab. hasn’t worked for me in the past, there is some evidence that the lapatanib enhances its effect. Like you, if this combo doesn’t start working things are not looking good. I have recently got a macmillan nurse and linked into the hospice which has really helped with symptom control and made me feel a bit more supported. I hope you are getting all the support that you need .
lots of love, Nicky
Hi Nicky
Thanks for that post. It’s so encouraging to read your words. Everything crossed that the drugs help both of us. I’m sitting waiting for the final paperwork to be completed. My oncologist says it will take a week or so for it to be signed off and for me to start the drugs. Meanwhile, I’m in a fair amount of pain. I was assigned a Macmillan nurse last year when the mets were diagnosed, but she’s really horrid, unfriendly, and unhelpful. Not sure if I danger a different one to help with pain relief, but I doubt it would make a difference since anything stronger than ibuprofen sends me off on a hallucinogenic trip!