No one has posted on the Vinoralbine thread since mid-September, so I am wondering how everyone is doing.
I’m starting my 5th IV cycle on 1st December. The 1st week I have Vinoralbine and Herceptin, the 2nd week I have just Vinoralbine, and the 3rd week nothing. So far it is going very well, with hardly any chest lumpiness remaining and my tumor markers down to 49, having been over 100 before I started chemo. My onc said “Well, you’ve done it again!” when he saw how much the chest lumps had shrunk, and said he felt that the combination of Vinoralbine with Herceptin was working well. He will decide after 6 cycles whether I should stop there or go for 2 more cycles. This seems to mostly depend on how well I am dealing with the side effects.
I haven’t had any nausea or constipation, and only had the runs when I was put on a course of prophylactic antibiotics after a bit of a temperature. The main problem is intermittent extreme tiredness - I get flurries of energy, and then have to retire to my bed feeling (unchacteristically) sorry for myself. This seems to happen mostly a couple of days or so after the chemo and seems to be due to a drop in my haemoglobin levels, but the chemo nurses say that they will give me a blood transfusion if it goes much lower.
The other source of irritation is the tissue damage which causes thinning hair, bleeding nose, cracked finger ends, and cracks in my labia. I’m using all sorts of moisturisers but it’s a constant battle to try and stick my body back together again!
So I’d really like to know how anyone else on Vinoralbine is faring. Have you had the same side effects as me, or different? Have you stuck with it, or had to stop?
I do hope that everyone else is doing as well as I seem to be.
Lots of love, Lynn
Hi Lynn
I have just started on Vinorelbine. I am not HER2 positive so I am having Capecitabine days 1 - 14 and Vinorelbine on Day 1 and Day 8. I am on my week off after my first cycle and start the second cycle on Wednesday this week. All tablets this time for me.
So far I have had no nausea and no diarrhoea in fact the opposite, dreadful constipation. This is my thrid lot of chemo in 3 years and it is always one of the worst side effects for me.
I have been warned about skin problems, hands and feet mainly, so I have been applying the Udderly Smooth cream and also Aqueous cream to my hands and feet. My fingertips may be starting to feel a bit sensitive but I nearly chopped the end off my thumb two weeks ago when I was cooking so that hasn’t helped! Plus the weather is so cold my hands tend to get a bit dry and sore if I am not careful anyway.
I haven’t experienced too much fatigue yet, only had a nap one afternoon so far but it is early days for me. I had thinning of my hair when on my last chemo that finished in March (Gemcitabine & Carboplatin) and I now have a ‘second’ fringe growing all over my head - lovely! I hope it doesn’t happen again, we shall see. I will keep you posted on how things go but I am greatly encouraged to hear about your response and hope that this regime of drugs works for me too.
Best wishes Sue x
No joy for me, I’m afraid. I was scanned after 4 cycles, and found we had some progression in the liver, so we had to stop. In my heart I seeemed to know that it wasn’t working-guess that sounds silly, but I was really not too surprised to hear the news.It’s not been a huge amount of progression-but any progression at this stage is bad news we can do without… I’m having a 3 week break and will start on pacitaxel on 16th Dec, so hoping I respond more favourably with this.
Hi Elaine
Sorry to hear that. I had Taxol first time around and that had a good response on my primary tumour. I am not sure if Paclitaxel is similar or not? Either way, I hope you are able to enjoy your 3 weeks off before starting treatment.
Best wishes
Suex
Hi Sue, I hope vinoralbine works for you. As regards the constipation: I used to have this problem but solved it by starting every day with half a dozen prunes, having a generally high roughage diet and going for walks as often as possible. People who haven’t suffered this way have no idea how bad it makes you feel. Best of luck!
Love, Lynn
Hi Lynn
I have prunes in so I will give it a try. I have porridge every morning and eplenty of fruit and veg plus I walk at least 3 miles every day with the dog AND we have 3 flights of stairs! I have to admit that this is always a problem for me with each chemo I have had, I must be particularly sensitive. So thanks for the reminder, I will get the prunes out!
Best wishes Sue x
Hi Lynn
I started Vinoralbine a few months ago. My first scan after 9 weeks showed no change and I think I am due another scan about Christmas time but I am not too hopeful that my mets are still stable as my skin mets look slightly worse and my bone mets are giving me pain. I have to say it is the easiest chemo I have ever been on, my only symptoms are some hair thinning and annoyingly brittle nails that flake and break at the slightest thing (only on my hands though, my feet are fine).
Best wishes
Linda
Hi. Just started vinorelbine and herceptin combo. Next week is my first ‘free’ week. Worst two side effects were swelling to ly hand which led to my wedding ring having to be cut off. Second is the fatigue/ insomnia. I had to take a sleeping pill last night! Due to be scanned after another three cycles. Best wishes to all. Snoogle
Hi everyone, thanks for this thread, and it’s good to know that this chemo might not be too bad. I am starting vinorelbine on the 16th as I am more sob and have a new bone met on my 7th rib. Was really fed up that another Christmas will be spoiled by chemo, but your posts have helped. Best wishes to everybody,
Nicky
IT is strrange how this affects us all so differently. I have not had any trouble sleeping and food still tastes great. I am really pleased and hope it continues as I missed out on my Christmas dinner last year as I was very poorly and I am looking forward to it so much. The worry for me is that if it doesn’t make me feel awful is it working?
I just hope that it is having some effect on the tumours! I will have a scan after 9 weeks too, that should be in January sometime, we shall see!
Have a good weekend all. Lots of snow here in the North West and it is grey and raw out this morning. So, an afternoon and evening sofa surfing is on the cards for me!
Sue x
It’s good to hear from everyone and get a snapshot of how the treatment is going. I too have thinning hair, and both finger and toe nails which break for no reason, and the low red blood cells make me feel depressed sometimes, but my tumor markers have dropped from 107 when the vinoralbine started to 43 last week, so I know these side effects are a small price to pay.
Lots of love to you all, Lynn
Hi
Just thought I’d update you on my journey with Vinoralbine - it’s come to an end! Had a meeting with my Onc this week, showed him my skin mets which have increase slightly and he has decided to take me off the Vinoralbine and start EC on 8th Jan. I am really disappointed as it was such an easy chemo for me, really feeling like nothing ever works for me. At least I have Christmas without chemo.
Best of luck to everyone else on Vinoralbine.
Linda
Finding vinorelbine quite bad. Hair falling out, nails weakening. Feel quite sick and very tired. Wasn’t supposed to be like this.
Snoogle
x
HI Snoogle, sorry to hear that you are so unwell.
So far I am still okay but it is early days, although I am starting to feel more tired. I start my third cycle of VInorelbine + Capecitabine on Wednesday. I am using plenty of cream on my hands and feet and that seems to be keeping them okay at the moment. I put lots of cream on and then some cotton socks on my feet so that the cream works whilst I am lying in bed, I try and do the same with my hands but it feels funny wearing gloves in bed! I did buy some Udderley Smooth cream as recommended, however I have also tried Aqueous Cream (much cheaper) and I think it is better as it is thicker and takes longer to sink in. So far, my hair is okay.
I hope you are able to enjoy Christmas with your family.
Best wishes Sue x
Hi ElaineD
Just read your post that you are starting paclitaxol and wanted to tell you that I have just done 12 weekly sessions of it, and had a scan a couple of weeks ago, and the tumours on my liver are now barely visible. So it has worked great for me, and I am now having another 6 of it. I hope that it works the same for you. Are you having it weekly or doing the 3 weeks on and one week off. Because I am on Herceptin too, I had it weekly.
Snoogle, so sorry to hear that you not doing too well on your chemo, I hope this settles down for you and that you start to tolerate it better.
To everyone else, hope that your treatments are working and that you all have a fab christmas and new year.
Love
Dawn
x
I just want to tie up the loose ends of my vinoralbine story: Saw my onc on December 29th, after 6 cycles of vinoralbine (2 doses per 3 weeks) with herceptin. The onc said that, as I had made no improvement over the last 2 cycles, there was no point in continuing as it had done what it was going to do. The following week I had head, thorax, abdomen and pelvis scans which were all clear, which was great news. So I’m now just on my usual herceptin and hoping that it’s a good long time before the next flare-up.
Love to you all, Lynn
Hi Lynnferg,
Thanks for sharing your good news story. Its posts like this that keep me going. I am on herceptin, have been for 2.5 years. No sign of progression but I know at some point it will happen.
Alex
xx
Hi all
Just had to stop all current treatment. Ct scan Friday. Meet onc Tuesday to make decision between further treatment or palliative care.
Snoogle
X
Snoogle, I do hope there is another option for you. Good luck with the scan and results. I really don’t know what else to say…it is what we all dread.
Hugs to you Sue x
Snoogle I just want to say Good Luck on Friday! Hope they find you a chemo/treatment that works for you.
Fingers and everything else crossed for you xxx