Hi everyone
I finished 8 cycles of Taxotere in June (hurray!) but guess what - had CT results on 13 Oct and not good news. The tumours have grown back to what they were before Taxotere in December. Consultant is recommending more chemo: Fluorouracil (5FU) given in a pump over 3 days and Vinorelbine (Navelbine) as an infusion. Anyone else out there on this chemo regime? How’s it going?
Can’t believe the Taxotere didn’t keep it dormant, at least for a little while. I’m gutted. Just started to feel a lot better and getting back to ‘normal’ following the treatment. I’m double negative and HER2+ so have only been having Herceptin.
Appreciate your support as I feel really low at the moment. Have put off going back to arrange the chemo until 12 Nov but wonder if it’s the right thing to do in waiting that long as the cancer seems to grow so quickly. Taxotere had reduced the biggest tumour from 7.2 cm to 3 cm which I though was really good but it was back to 7 cm at the end of Sept!!
Hi Carol
sorry to hear you have to go back on chemo I am in a similar position finished chemo in May just for a break. Having a scan tomorrow so more than likely have to go back on it. My naughtiest tumour seems to be fond of the 7cm, I have had various chemos and it has never shrunk to less than 3cm. Takes me months to recover but the tumours seem to bounce back alot faster.
Sorry not yet done the vinerelbine but others on here have so it wont be long before you get more info.
Oh, Carol,
That’s utterly rubbish news, I am so sorry to hear that. You must be gutted - you’ve had hardly any time to ‘enjoy’ yourself, and have to go back on chemo again.Here’s hoping the new regime kicks the buggers into touch much more permanently,
love Jacquie
Just contributing with my experience of 5FU. I had it alongsid carboplatin and epirubicin for treatment for my primary bc back in 2003. The 5FU was on continuous pump, which meant I had to have a line.
Didn’t like the line much - meant I couldn’t go swimming etc and I had to be aware all the time of “my little friend” following me around. But the side effects were manageable - runny nose and dry and cracking skin on palms and soles.
Haven’t heard about the Navelbine and 5FU combo before. Hope it does the trick for you.
HI Carol
Really sorry to hear about your results , it takes time to deal with it all, I had widespread progression while on Xeloda, it seemed to be doing it’s job for the first 5 cycles and then whoosh it was back with a vengeance, I am now on Taxol and Avastin. I have had Vinorelbine which kept things mainly stable but the pleural effusion went out of control when on it so that had to be drained and the lining of the lungs stuck.
Hope this new regime works for you, I found the Vinorelbine quite tolerable and worked through it aloowing for the days when I would be more tired
Best Wishes Kathryn
Sorry to hear this, I know pretty much how you feel on this one as I had 6 taxotere and then found myself straight back on after just maybe one more month than you…it really is awful how the tumors can just bounce straight back when they have had a good knock. I think you have to go with the oncs recommendation on the timing, when I had to go back on chemotherapy (taxol and avastin ) he said arrange it within the next month.
I posted yesterday and all my posts have disappeared from here and another site so think I must have had some kind of computer failure.
So sorry to hear your news.
I had vineralbine on its own for 2 out of 3 weeks and was fine but found it was painful when it was infused and for about a week after. The infusion is done quickly - in about 8-15 mins. I found that by haing IV hydrocortisone injected into my vein first made a big difference as did using a heat pad for the infusion as well The side effects I got was a lot of leg cramps and some chest cramps and I got diarrhoea which about 20% of people do whilst the others get terrible constipation. Othewise I worked through it till cycle 5 and 6 when I got very tired but it was alos arund christmas that these were due so rather overdid it at the same time.
One of the girls who gets treatment in Germany has had a 5 day course of 5FU and the last time I was in hospital the 3 other women opposite me were all having it for bowel cancer and all got diarrhoea on it and dry hands and feet.
I had 5FU as part of FEC and remember it gave me the most foul smelling wind imaginable!!
It is awful when you have chemo only for it to fail. I had 6 doses of FEC at diagnosis and 2 weeks after finishing on mammo and ultrasound it all looked as if it has hsrunk and they could do a lumpectomy but 2 weeks later at surgery the lump was back to the same size as at diagnosis. Since then although I’ve always had a good response to the chemos, I’ve only lasted about 8 weeks before I’ve needed to go back on chemo. The last time I was off for 3 months but that was when my liver secondary grew in my commonbile duct within 3 weeks of having a clear scan and so had to wait for the stent and then for my liver function tests to be ok to start chemo again. It is so depressing and scary.
Really hope this combo works for you
Kate
Thanks everyone for all of your support. Am due to see the consultant on 12 November to sign up for the chemo again. Am enjoying the break from it at present, although it’s worrying that the tumours may still be growing inside!! Can’t believe how well I feel though, am getting out and about and basically enjoying each day. Pain has gone apart from a slight twinge now and then so keep thinking maybe the tumours have shrunk by themselves ( I wish - if only!!!)
Deirdre - I’ve got a central line too (my second). It is a bind I know but much easier then being ‘stabbed’ over and over when they couldn’t get canulas in.
I’ve had 5FU as part of FEC early last year for primary treatment.
Anyway, thanks again all of you. Take care - keep in touch, it helps a lot.
Carol x
Hi again - yes, I know what you mean about thinking the tumours have shrunk by themselves - I get days when my leg and hip hurts and days when it seems miraculously to have cleared up and I imagine that the pains were just “healing” pains. A long shot, but possible. Hope you get some good days before you start the chemo again - it’s beautifully sunny here today.
I have triple negative breast cancer therefore I have only got chemo as an option, no hormone treatments or herceptain would help me.
I had the dame response to taxotere the onc was originally full of enthusiasm and thought that she could get the cancer back into remission, however that was not to be and although i had a good result from the first 3 the next 3 showed a slight progression.
i am now on Xeloda which I know that many woman on this site have been on for years, but i deal with it better if I never build my hopes up, realise that one day i am going to get told it doesn’t work and if I have no expectations then I can’t feel like I’m getting kicked when I’m down.
Hi everyone
Well I’ve started the new chemo regime again as previously mentioned. 5FU on a 72 hour pump and Navelbine. Had the two together on Monday. Back next Monday for another infusion of Navelbine then I have one week off before starting with two again plus Herceptin which they’re gonna give me altogether!! So far seems so good. Not sleeping well again though, was like this on Taxotare. Up between 3-5 a.m. and can’t settle back. Am gonna ask if I can reduce the steroids a bit I think. Have been getting out and about a lot this week and I know it’s very early days and things do seem to deteriorate with bloods, energy etc as the time goes on but I’m pleased to have been alright so far.
See Consultant on 3 Dec for an update before I go back on the 8th for the start of the routine again.
Hope all OK with all of you. Any advice on side effects for this new regime would be appreciated.
Thanks for your support.
Carol x