Ive posted this in this forum as i dont think that Vinorelbine is given in primary bc and thought i’d get more response here.
Can anyone share there experiences of side effects with me…
These are mine so far and wanted to know if i’m any different to others…
Stinging/pain upon iv infusion, aching veins, upset stomach within a few hours of infusion, horrid taste in mouth, hot sweats and then shivers and then cant get warm, headache and heartburn. Also my lungs feel a bit strange too - like they are burning inside… (i do have lung mets though)
Jakki
I found vineralbine extremely painful on the veins the first 2 times but then they used to give me IV hydrocortisone before the vineralbine which helped enormously. I also used a heat pad during the infusion and heat pads at home occasionally. I found it best if they used a blue cannula and ran it in over 6-8 minutes. Apparently, it should be run at that rate as it is such an irritant.
I did get diarhoea with it (apparently most women get constipated but 2 out of 5 women will get diarhoea with vineralbine - I like to be different!!!). My mouth always goes yukky with chemo so no different to other chemos in that respect. I did always get very hot for 24-48 hrs after the infusion and suffered a lot from leg cramps and chest cramps whilst on it. The calf cramps were very painful and would catch me out - i also got cramp in my toes… Vineralbine irritates all nerves so you can get numbing/tingling of feet and hands - mine have never recovered from taxotere so can’t tell you if that happened as they were already numb and tingly already.
I lost my appetite and so did the other 3 women all having vineralbine at the same time - we all lost weight!! Don’t remember having feelings of lung burning - but do remember that it dramatically improved my breathing for the first 2 days after the first dose and the second dose helped for about 5 days and so the improvement continued. When I had FEC to reduce the tumour before surgery, I always got a red reaction around the tumour so hopefully that kung tingling is a god sign. Glad they have started you on treatment - it feels like you’ve had a long wait for a decision to be made.
It also got rid of my bone pain - they didn’t give me biphosponates for the first 6 weeks after discovering my bone mets so i know it was the vineralbine which did that.
My nails were very flaky as well.
I was fine for the first 4 cycles apart from the vein pain but then got extremely tired and had to get my 5th dose a week late as my wbc wouldn’t pick up.
Hope it works for you and the side effects not too bad.
Kate
Hi Jakki, I am currently taking vinorelbine for lung mets. The first four months I had infusions on week 1, 2,3 and was off on week 4. I was just switched to getting a higher dose and getting it on week 1 & 2 off on week 3 & 4. I do suffer from extreme heart burn from this chemo and it was worse with the change in dose. I am slightly queasy since they changed the dose too. Today I had a headache and chills afterword. I also get tired from this too. Also have bad leg cramps. Here in the USA they infuse me with pepcid (anti acid med) before the chemo. That has helped some with the heart burn. These symptoms have all been tolerable compared to my reactions from abraxane and avastin. Funnyface
Hi Daisy pink
I just managed three of the six as it wasn’t working… but the side effects I had were tingly numb fingers and feet and it has crept up my legs so rather wobbly… also had an allergic reaction once and had to have piriton and hydrocortizone injections… the next time they put it through very slowly and I was fine, the veins are very blue and if you bruise it takes ages to go and any cuts hang nails take ages to heal.
On the good side I didn’t have any sickness or taste problems and no hair loss, In fact I was in really good health and carried on working… seems to be different with everyone.
I had 6 cycles of vinorilbine (infusions on Day 1 and Day 8, then week off.) but with xeloda tabs so not always possible to tell where side effects came from. I did get some constipation but also very bad diarrhoea on cycle 2 (had to stop xeloda and have dose reduced.) Otherwise worse thing was fatigue which though not as bad as with other chemos was draining…and in some ways felt worse cause it was more persistent throughout the 3 weeks. I usually felt very low day 4-6 and Day 10-12.
I was lucky not to get any vein problems. They did push it through very quickly. My CT scan showed most of tumour in my chest wall and supraclavicular nodes gone. I felt a lump above my collar bone disappear very quickly which was nice.
Hope your side effects ease up and the treatment works for a while.
I just got out my notes to check on any problems I had on vinorelbine because I must admit i now get the various chemos muddled in my mind. I started off with the infusions on Day 1 and Day 8 like Jane - and was being given this drug for very much the same spread as Jane has. Capecitabine (xeloda) alone had failed to control it. The major problems for me were fatigue and nausea which needed several different meds to control. Then the peripheral neuropathy was a major problem. It had been with previous drugs as well so they were very anxious not to increase the problems. I was given 50mg of piridoxine a day to combat this. The 2nd cycle I had a weeks hol before starting but after that they dropped the day 8 part of the cycle and I just had it every 3 weeks and on a 25% reduction of that as well. So i guess all in all by body didnt tolerate it too well. But it was effective and the majority of nodes in my neck, collarbone and chest did go, along with the scar tissue problems, and i was able to regain full movement of my neck. The chemo nurses were very aware of how harsh that chemo is on the veins - and would give me the heat pad to keep my arm warm throughout the infusion, along with plenty of saline before and after. I can’t recall how long the infusion took but dont remember it being pushed thru that quickly.
I also failed to mention that i get the calf cramps, I’m glad you said that you had them too Kate as i was worrying i may have a DVT. I also have the infusions on day 1 and day 8 then a week off too. I get very down the day after the infusion, yesterday i was inconsolable but today feel like a different woman… certainly plays havoc with my moods…
They do try to dilute the chemo with lots of saline, they said they would mix it in a bag for my next cycles instead of the syringe to ease the veins, i also have a heat pad on too but doesnt seem to help much. Ive been given some movelat gel to put on my veins to help. we’ll see… i had it when i had Epi and it worked so hopefully it will ease this but fear my veins are far too damaged now for it to help.
Havent suffered with finger numbness, i hope i dont get that - i had that on Taxotere too and they have only just recovered.
Ive got Peptac to help with the heartburn which usually helps too.
thanks again for your responses, its nice to know that i’m not having any weird side effects that i shouldnt be.
I also wonder if it is worth asking if you can have a proton pump inhibitor like omeprazole for the heartburn. I now suffer from quite a bit of oesophogal refllux partly related to the damage from numerous chemotherapies. They might offer greater protection whilst you are on chemo.
I’m glad to see everyone else has had leg cramps. I too was worried about DVT. Dawn I have thought about asking for omeprazole(called prilosec in US) I had it with my last chemo. Think I will ask for it again. I also liked the idea of having notes. Think I will start a notebook to that I can refer too. Thanks Funnyface
I’ve just had my 3rd Vinorelbine, I’m also on week one and two with week three off. I haven’t felt anything when it’s going in but I have a portacath, I think it also means that the infusion can go in faster. My veins were so shot from FEC last year that there was no option ! I aslo have dexamethasone put in first which has me buzzing around all night but so far no cramps or tingling. I do have deadful heartburn but again that is a hangover from the last lot but I take omeprazole. Oh and the constipation… musn’t forget to munch my prunes. Yesterday apparantly my white cell count was very low but I was just above the margin so got it but my chemo nurse seemed surprised as she said that Vinorelbine isn’t supposed to be too hard on the white blood cells!! We put it down to my half term spent at Center Parcs overdoing things!
Kathryn