Hi girls,
Hope you don’t mind me joining the club!
Will be keeping an eye on this thread because will be switched to this chemo after my recovery from spinal op. The op hopefully will take place around Easter time.
We’ve not yet decided whether it’s tablets form or IV. My onc is more inclined towards IV. If that’s the case, will need to have a line again.
M x
Iv is harsh on veins rather like fec. That’s why I am having tablet form. Also, less time in hospital. It’s a dose day one and day eight with a blood test before each then a week off
X Sarah
Hello all,
Wonder if I can join the Vino club as well?!
I have secondaries in bones & more recently in pleura of left lung. Since secondary diagnosis nearly 2 years ago, I’ve had Femara, Capecitabine, weekly Taxol, Exemestane & now just started Vinorelbine. Had first cycle & started second yesterday. I also have monthly Zometa infusions for bones & take calcium tablets.
I chose to have IV Vinorelbine puely because I have a portacath & if I was going in for weekly bloods I may as well have the treatment done at same time. I am also on 3 weeks on & a week off.
I found the first cycle really hard going - seemed to get every SE in the book! Very tired, really achey joints, constipation, then diarrhoea!! What joy! Ended up not having the last of the 3 as neutrophils a bit low, so was given 2 weeks off, instead of one, went back yesterday & bloods right back up again, so good to go again! I also had the dose lowered a bit as i’d lost a stone in weight, due to having quite a bit fluid drained from pleural effusion, so hoping that has an effect on SEs too.
Interested to hear how all you other ladies are coping & really hope SEs are minimal & results are always good!
Take care all,
Dugsy
Glad you mentioned achy joints dugsy. I have had shocking aches and pains. They are just easing off now, day 13. Hope to be perking up soon. Actually felt peckish this morning. Tiredness is a problem. I am definitely going to ask onc if we can reduce the dies because I don’t want to feel so wiped out all the time. Thankfully my arcs are ok, but tummy is a bit sore.
Right, going to get dressed now and put some slap on. Then it’s off to get the papers and have a quiet time by the sea
X Sarah
Forgot to say welcome to you dugsy and my1 u.
Xxx Sarah
Hi All
Sarah hope you had a great time at the seaside and that your mouth is better and eating!!
Serve me right for bragging about how good I felt - have gone down hill since! Toothache, mouth ulcers and lack of sleep due to thigh cramps,and felling sick for 4 days!!! Also my Aunt died on Friday from left over effects of stomach cancer op 12 years ago. Went to chemo unit today and promptly started to cry when the nurse asked how I was, curtains came around and lots of attention as they were in shock as I’m usually so happy and positive! Ended up only having herceptin and onc is ringing me tomorrow, also getting conflicting info on the trial I’m on and how it can be tweaked for each person. Now they tell me I can regulary miss sessions and I’ve done really well having it for 6 weeks without a break as the vinerolbine keeps topping itself up more and more each week - no wonder SEs are bad !
Feeling bit better now, but the fact it’s open ended/indefinate has really got to me this week, part of feeling low I spose!
And to think I felt really fit and well etc before I started this in Jan! Grrrr!
Moan over, I like the name Fudgy Sarah, makes me feel squidgy!!! like my stomach lol!!!
Hope every one is having a good week
Fudgyxx
Hi
My mouth is better but now I have the dreaded constipation. Took some lactulose earlier today bur no joy yet. Appetite gone again.
Fudgy I am sorry you are having such a bad time. I have been taking sleepers to get some rest as I too have been achy. I am very sorry to hear of your bereavement. It makes everything so much harder to cope with. I had a similar meltdown last year. My brother died in the hospital and when I went in for my treatment I just couldn’t stop thinking about it.
I feel a bit sorry for myself as I expected my week off to be a lot better. 6 weeks without a break ? That’s incredible. I don’t think that I could have managed that
X Sarah
Sorry to hear you are feeling rough, Fudge. You have been so perky, but then as Cromer says, six weeks without a break is fairly epic!! I was interested to read that you have had thigh cramps, cos I have had loads of cramps in my legs and feet, and occasionally down the side of my torso, mostly at night. I hadn’t associated them with the chemo, but it makes sense. Ouchy - its a side effect I could do without!! Constipation is most certainly not on my list of SEs - but the trots are, as is shocking wind!
I am a vision of loveliness in bed at night at the moment - writhing around in agony with cramp, I let rip with a massive fart, then have to fly to the loo for fear I may s*** myself!! My poor husband! But its still not as bad as Docataxol…
Hope all Vino SEs are small ones, and you get a break soon Fudge. X
Hi ladies
Thanks for your messages, good to feel you are not alone!!! What this site is all about I suppose.
Hope you are all well out and about. Beachwalker - try bananas and tonic water - both good for cramp. They do decrease this side effect. Cromercrab - hope you are eating again and constipation has eased. Sorry havn’t got any help for that as I’ve no probs in that way! Got to be a plus side!! lol!
I’m feeling much better now although mouth ulcers are still there but difflam mouth wash is helping. Another plus free mouth wash! Ha! Ha! I’ve been in the garden planting/weeding and of for walk in a bit. Feeling more positive too, I think depression is listed as a side effect! Not surprising is it - talk about listing the obvious! My oncs oppo rang yesterday. I’ll prob stay off the vino again this week, just have herceptin and start the trial tabs again. Apparently regular breaks within reason are ok. Basically they need you to stay on the trial if at all possible so a bit of tweaking can be done. Not the story I was told a few weeks ago!! Still it is working so shouldn’t moan. Rant over. Happy with arrangement next week then vino week after and following week not having anything as I’m having that week free. My daughter is having a fundraiser for her theatre company and I promised to help etc, falls on that day - sometimes you just have to put other things first. So a bit of a break. Going to London hopefully end of May so gonna make sure I’m away that Thurs too!
Not too good here in Cornwall although the last week has been fantastic, lets hope it’s a sign of things to come.
Welcome to Dugsy and my1 u too hope you all have a good weekend.
Fudgy! xx
It’s a bit blowy here on the east coast! Went for an extremely brief walk and then dived into a local hotel for a quick drink before getting back to snuggly flat. Will venture out again this afternoon but a little better wrapped up. After a few miserable days it seems like my innards are finally sorting themselves out.
I am just hoping that this cycle is a blip because I seem to have acquired every side effect possible, but at least my bloods are fine. I phoned the hospital pharmacist for advice yesterday and basically I was doing all the right things and she is going to have a word with onc for me.
Hope you are feeling better fudgy re your mouth. That mouthwash is excellent. Sorts things out pretty quickly.
X Sarah
Have just started on vinorelbine and herceptin. Have had 2 Vinorelbines done by IV but this time my veins have come up very purple/inflamed and my arm aches. I now they say there is a chance of leakage but to tell nurse if you feel stinging sensation but I felt nothing at the time. Have had chemo twice before by IV and no side effects on veins. Has anyone else experienced this? Maybe my veins are just knackered after all these years. I notice some of you have the tablets, I have asked about these as have been on Lapatanib orally for 2 years until recently and much easier regime, time wise no long hospital sessions. Nurse said they prefer to give tablet form for lung cancer but have read is just effective in either form. Any advice please, don’t want to have any long term damage in the arm as live on my own and just lifting the kettle is agony at the moment! Thanks all.
I requested tablets because of the harshness to the veins. It’s as bad as FEC for that. I see onc every 3 weeks and the pharmacist phones me day 8 to let me know bloods are ok for next dose. Zometa every 6 weeks so it keeps hospital to a minimum.
There is no difference in efficacy just a matter of choice.
X Sarah
Thanks Sarah that’s helpful. Going to ring hospital tomorrow to see if I can get tablets instead. How long have you been on Vinorelbine?
Was on it for 4 cycles before mx and now on 2 nd cycle after a break
Hi all.
Well after a few days my mouth is starting to feel normal. No more toothache and ulcers are almost gone, although the biggest one is still a bit tender. Oncs oppo ringing me tomorrow to see how I am, probably have another chemo break this week, just herceptin and restart trial tabs. I’ve also realised that I havn’t had any nosebleeds, sore tender nose has gone, leg cramps are 80% less and basically I’m feeling great. I think it’s the chemo, onc reckons the tabs (meant to be trial so could be placebo but he says SEs of real drug are the same as I’ve had). I’m going to start a daily diary of how I’m feeling etc. I just think we know our bodies better than anyone and I’m not a clinical experiment!!! Although I want to stay on the trial I want it on my terms!
Sad day today - went to my Aunts funeral, RIP Pam.
Tools29 - I had a portacath put in, its brill. My veins got knackered after first chemo and because of node removal can only use right arm and wanted to preserve veins as much as poss.
cromercrab - hope you are feeling better and your innards have sorted themselves out!
Hope everyone else are feeling ok, vino treating you well, and not to cold! Still sunny down here!
Fudgy xxx
I am now feeling tip top just in time for cycle 3 lol. Hoping this chemo is working. See onc on Thursday. Watch this space… Will be asking for different anti sick tabs and shall take some other tablets to help avoid constipation. I reckon it will be an interesting conversation as this is really the first time I have felt so bad on chemo
X Sarah
Hi all
cromercrab - Hope all goes well today. Make sure you write down all your questions, and I always jot down the answers now too.
I’m of this morning just for herceptin, will have vino next week and then a complete week of. I’m startimg a diary so that I’ve a accurate record of when SEs start etc. I’m starting the trial tabs today and I’m sure it’s the vino and not them that’s causing the majority of problems.
Hope all is well with everyone and your SEs are small ones,
fudgy xxxx
Good afternoon.
Why is it that appts take so long. 9.am zometa took until 10.45 partly due to the nurse not starting the pump. 9.45 onc appt , but was finally seen at 11.45 ish. My nutrophils were too low for me to have my dose today, so it’s been postponed until next week. A bit of a result because I can now have a nice Easter. I have different anti emetics and something for the dreaded constipation. Hopefully the next cycle will be better tolerated.
Thanks for your good wishes fudgy
Hope all goes as well as possible for you
Best wishes to all the other vino ladies
X Sarah
Hello all,
Have been keeping up to date with all your posts but haven’t had much to add from my side, but just wanted to say hello!
Sarah - sorry to hear your neutrophils have been low this week. Mine were low a few weeks ago & I was given 2 weeks off. Since then bloods have been good for last two treatments so hopefully the break will do you good too. Like you say, at least you can enjoy Easter now! Not sure what you’ve tried for constipation but I find Movicol works well for me, although since taking a sachet this morning I’ve got a terrible bloated stomach! One thing sure does lead to another.
Fudge - hope the mouth ulcers have improved. I don’t seem to suffer with them, but have heard the Difflam mouthwash is pretty good. Interesting to hear you mention leg cramps in the night - I’ve also been suffering from them since starting Vino, so presume this could also be a SE?
I’ve had 2 of my 3 infusions for cycle 2. Number 3 will be on Tuesday & providing bloods are ok we’re hoping to go away for a week, during my week off. Either to my parents-in-laws place in South of France, or Devon/Cornwall. I’m not fussed where providing it’s a break!
Main SEs for me seem to be tiredness, constipation (& diarrhoea during my week off!), leg cramps & dry skin on hands. Nausea for first couple of days too but not been sick thank goodness!
Hope you all have a restful Easter & SEs are minimal.
Take care,
Dugsy
Still quite tired. We will see what latest bloods say. Not really looking forward to next dose.
Happy Easter all just provided our traditional lamb roast dinner. Yum