Just wondered if any one is vinorelbine just started yesterday took 1 80mg tablet and one 20mg dont take the next cycle till next tue there are lots of side affects just wating for them to start.
They tried me on capecitabine started just before christmas taking 12 tablets a day for 2 weeks then a week off.
so looking forward to week off boxing day started to feel really unwell spend 8 days in hospital in bed and comode and being sick, doctor said had rare reaction to chemo, done ever want to go there again, last week in hospital couldnt breath , they took 2 litres of fluid off my lung, pleasd to say feeling so much better to day.
I had breat cancer 2009 sailed through all the treatment such a shock wwhen i went back for routine check up and was told after having routie scan it had come back in lymph nodes and now i seem to be getting problem after problem’
Sorry to be going on just wondering if any one is in the same boat
Hi angie sorry u had a rough time on cap I’m on it now had 3 cycles all ok at moe hardly any se I don’t know anyone who is on vin there was a lady but sadly no longer with us hopefully someone will pop on later just wanted to say hi wish u well tc Laura xx
I am just about to go back on it after a break for surgery and rads. Constipation can be a problem. I usually rest on day of tablets and day after and then am ok. Drink lots is my advice. I also take an anti sickness an hour before taking tablets.
X Sarah
I have been on vinorelbine for nearly a year now and I have had no noticeable side effects. I don’t even bother with the anti-sickness anymore. I gym and swim regularly and walk my dogs for an hour a day. I know we all react differently to drugs but I just wanted to give you a positive report! I hope it works for you x
Hi Angie. I’m on my 4th cycle of Vinorelbine & Capecitabine (my Onc says there is evidence they work better in combination). I have extensive bone mets and my tumour markers have come right down. Side effects not too bad tho feel a bit rough for a couple of days after taking weekly dose of Vinorelbine. Just take Metoclopramide anti-emetic. Very tired of course, but aren’t we all?! Hope they work for you. Keep in touch and best wishes. x
I am on my third cycle of vinorelbine - started at the beginning of January. I have mine by infusion rather than tablets and have it two Fridays in every three. Am also having Herceptin. I have bone and liver mets, which were stable until just before Christmas. This is my second lot of chemo. I have found side-effects to be minimal compared to the Docataxol I was on before. No sickness, no hair loss, no sore mouth or upset tummy (so far…). I just feel quite tired for a couple of days after my injection. The worst thing has been a really sore and stiff arm for most of the week following the injection. This is manageable with pain killers - though this won’t be a problem for you if you are having it tablet form!
Good luck with this new course of treatment - I hope it is ‘kind’ to you.
Gel X
Note to self; read the instructions. I took my first dose of vinorelbine on a slightly empty stomach and a few hours later felt really sick. I’m taking domperidon and that has it under control now. I am quite tired. But I hope that will lift soon. I shall nibble a small snack with my next dose as per instructions duh!
X sarah
I’m on it too! Found it was better to have it after dinner and then to bed early. Have felt ok! Not too sicky and just tired really. Have got into quite a good routine with it now! Gxx
I started in January but I have it IV through a portacath which I had put in as I knew my veins were rubbish. Have had five lots over six weeks having missed one after suffering mouth ulcers. All in all not to bad at all. I think my hair is thinning a little (I’ve noticed more hair than usual in the shower tray) but as it came back very thick after tax in 2009 hopefully it’l not be to noticable. I’m on a trial with weekly vinerolbine and herceptin, its evorulimus/placebo tablet once a day. I don’t know how long I’m going to be on it, I get the feeling that if it’s working and SEs are minimal you can stay on it for quite a long time - anyone else got any info?
Sounds really selfish but the worst thing for me is having to be in the chemo unit for so long, although they are all lovely it does get to me. I’m hoping that after the trial finishes and I stay on it I can have the tablets and go back to 3 weekly herceptin at home.
Lets keep this thread going it’l be good for comparing notes/support.
We can be the vin ladies - shame its not red or white!!!
Hi fudgeincornwall, I opted for tabs because I want to stay away from hospital as much as possible. Have bone juice every 6 weeks which coincides with onc appt so I only have bloods taken two weeks out of threes. Yes let’s keep this thread going. Hopefully I will have a spring in my step tomorrow. I have done nothing but impersonate a cats bed all day. Every time I sit back down my cat sits on me and demands cuddles
Yes I think tabs are the better option but the trial I’m on has to be by IV. Do you have your herceptin weekly or 3 weekly. Also have you heard of the self administering herceptin? Apparently a lady that goes to my unit has it. I;ve got clinic appt. on Tues so I’m going to have a few questions to ask - again!! Just back from a nice pub sunday roast with some friends , we walked there and back 4-5miles altogether. The clinical trials lady keeps saying I’m fantastic - I think |'m fitter than her!!! I do walk at least 2-3miles everyday - strange really if it wasn’t for treatment/6 monthly scans, although thank god for them, I would consider myself to be quite healthy!
Hello to other vin ladies, hope you are all having a good weekend.
Felt quite sick with it this time but felt better by following day. I seem to have had some response as TMs are down significantly. Let’s see what happens after the next cycle.
Hi Vino Ladies,
Sarah, I felt really, really sick after my treatment on Fri, which I hadn’t done with any of my previous treatments, but it only lasted for one day, and felt right as rain today.
I had results from ‘halfway’ scans last week and it was good news! Area in my liver had shrunk considerably. Onc said it was a ‘better response than they expected’ and still another three cycles to go!! As you can imagine, am ‘well chuffed’ and loving the Vino!!
Hope it is working well for the rest of you.
Gel xxxx
Yes that seems to be the pattern. Sick on the day of treatment, it also sends me to sleep, then ok next day, a bit tired though. My OH pointed out that when I felt SEs then things seemed to work as with some treatments I have had I haven’t had side effects but didn’t have good results either.
Hurrah for the vino!
All well with me at mo, very few side effects so far and I’m full of energy. Had chemo and herceptin yesterday morning. Caught train and then bus home. went for a walk and then did garden till 6pm. Went to volunteer day in local country park today - weeding and planting new trees. went out to lunch and then home to more gardening. Had scan last week and results show good shrinkage and clear everywhere else so vino working for me! Will poss be on this indefinately but having bloods taken at GPs on Tuesday mrngs now so should be in and out chemo unit within 2 hours yay! So happy bunny at mo!
Has anybody asked about having weeks off for hols etc. I’ve been told that you can providing it doesn’t clash with clinic appt or scans(I’m on a trial so scans every 9 weeks).
This cycle has really hit me hard. Was sick Thursday of taking it, and washed out yesterday. Today I am still feeling slightly yeuch but have eaten more normally. Looking forward to going to the seaside on Monday, by which time am hoping to have more energy. fudgeincornwall you put me to shame. I couldn’t have done half of that.
Moan moan. Sorry ladies. I just hate not being able to get on with things. Still it was very nice to be sitting knitting in the garden this afternoon
X Sarah
You make me feel guilty for saying I feel great!!! Sorry I just felt so happy and positive! Poor you I know I’d feel the same if I was like that, you just want to feel normal don’t you (some of my friends would say normal is impossible for me). I did have very bad mouth and tongue ulcers after first 3 doses. They gave me a week off except for the herceptin and then reduced my dose of vinerolbine and my trial tabs from 2 to 1 a day. So far so good although I’m suffering with toothache on and off, dentist next Tues so hoping it wont get worse before then, don’t think it’s conected with the chemo. Enjoy the beach and the sunshine tomorrow and hope you feel more like your old self.
Hi to all other vino ladies hope all is well. Beachwalker I hope the SEs are easing - lucky you having only 3 more cyles to go. Mine is open ended so thats why I’m planning some weeks hols at regular intervals!
Oh fudgy never never feel guilty about feeling great. I didn’t mean to make you feel like that. I am now by the seaside and am perking up xxx. Have a days activities planned. OH cooked dinner tonight, egg and chips. Truly lovely. We know how to live.
I have now started using mouthwash and my mouth is improving. Appetite is showing signs of improving too.
I hope onc might reduce my dose a bit. Watch this space lol.
