Trying to revive the excellent thread we had going before the update which I can’t find. How is everyone doing?
I’m now on cycle 7 and it has hit me quite hard. My temp spike reached epic proportions on Saturday night. 39.2! Struggled to get it down as it was very humid that night in the uk. Tried to keep calm as I didn’t feel ill as I should do if I was really running a fever. This morning 36.5. have to take my second dose Friday. I have now developed a sore mouth, and feel lacking in energy but so much better than at the weekend when I couldn’t really get out of bed 8-(
But then, onc is giving me the maximum dose.
X Sarah
Hi Cromercrab.
Sorry, havn’t been on here for awhile as couldn’t get in for a long while so didn’t bother! Have started lurking again recently so spotted your message.
I’m actually of to see my Onc tomorrow as I’ve decided to come of the trial. I’ve being suffering from a bad mouth on and of as you know. Tongue and mouth ulcers, also jaw/tooth pain and recently a sore/lumpy throat. It seems every two weeks it seems to build up and I’ve had a few weeks of from Vinerolbine and trial tabs over the last couple of months. My latest scan is stable 
,get details tomorrow,so I’ve decided to have a break and go back to three weekly herceptin at home. I’ll also find out other options and if I go back on vinerolbine if I can have the tablet form. I find going to the chemo unit every week is just too much. They were short staffed (again) on Thurs and I was hooked upto the Vinerolbine for 30mins rather than 5-10mins, I’m sure it’s irritated my portacath so may have to have it flushed tomorrow! My energy levels are as good if not better than before and I could eat for England although I try not to!!
I hope you are feeling better and that your temp. has returned to normal. Is it possible for you to have a break just to get your mouth and energy levels back to normal?
Take care
xxx
Hi fudgy
I’ve just phoned my bcn and waiting for her to phone back. My mouth is still sore. Appetite is restoring a bit. Just nervous about taking day 8 on Friday. Wouldn’t be so bothered if I was about to have my week off
I’m on oral vinoralbine. After last cycle I had energy and felt good. Did you find that SEs varied from one cycle to another?
X Sarah
This thread?
breastcancercare.org.uk/community/forums/navelbinevinoralbine
Confusing, these drug name spellings, aren’t they… maybe some day I’ll need vinorelbine myself.
See also
www2.breastcancercare.org.uk/publications/treatment-side-effects/vinorelbine-navelbine-bcc165
PS This is the first time I’ve used Search on the new BCC forum… it worked… thanks, techies!
Thanks mrs blue.
Just had bcn on phone and have to go to a&e for checkup bloods xray. Keep you posted when I get back from hospital. Waiting for oh to return from work so he can take me 8-(
Actually just looked at thread and it wasn’t that one but thanks for trying
Hi Sarah,
Hope you are feeling better. Are you having chemo tomorrow?
I think from talking to others at my chemo unit we all vary on how we react each cycle. However these are all ladies who have Vinerolbine by IV.
I went to my chemo unit today and had Herceptin only, I’m officialy off chemo, hopefully long term. CT scan showed stablisation after good shrinkage, still small lump on head of my pancreas, could be just scar tissue, I’m having 6 weekly scans and monthly appts for the time being to monitor me, makes me feel safer too! Back on 3 weekly herceptin from now on with Health Care at Home. I’ve also got to get results from 2nd biopsy from right boob, 1st came back clear but they want to make doubly sure. It was 1st mammogram after uplift and reduction so nothing to compare it with.
I must admit until Tuesday I wasn’t sure what was going to happen except I was coming of the Trial and didn’t realise how well the chemo etc had worked, still can’t quite beleive it! Get the final results of biopsy for boob next Weds and then I’ll really feel free!!!
Hope your energy returns
Fudgy xx
I was admitted to hospital Tuesday night. Low bloods. Still low today. Just taking a while to come up. Won’t be home until after the weekend. Bit of a surprise. Didn’t realise I was that ill. Feel tired and a bit bored…
Still feeling tired but reckon it’s the antibiotic whammy. I finish oral antibiotics on Thursday and hope my appetite comes back too. Prof has now discontinued navelbine so I will have to see what he does next. I see him August 2nd so hopefully will recover enough to enjoy my brief freedom. Off to the seaside next Friday.
Things have improved slightly as I got dressed today and have been sitting downstairs more than I have been in bed today.
I slept fitfully last night, dreaming I was still in hospital. The lady in the bed next to me had a tracheotomy and was busily bringing up phlegm very loudly 24/7. It’s very hard to eat or sleep with that going on, despite me feeling sympathetic about her situation. The lady in the bed diagonally opposite was constantly telling me how you never knew what was around the corner and how she nearly died!!! The one ray of sunshine was a fantastic person from Liverpool who was great to talk with. I reckon hospital has traumatised me a bit as it does bring home the situation we are all in
Hope you other navelbine peeps are having more luck xxxxx