I have recently started a course of Eribulin chemo. This is not yet NICE approved and my Onc had to get funding from the special Cancer Drugs Fund. It is a day 1, Day8, 3 week cycle IV chemo regime. Currently I am the only one at my hospital on this and I wondered if there was anyone else out there with whom I could share my experiences. Thora.
Sorry Thora, I can’t respond to your queries but glad to know there are new treatments being rolled out. Do you mind if I ask if you’d had other chemos before this and if that was the reason your Onc is trying it?
Best of luck for it being successful
Fran
Hello Fran. Yes I’ve had several chemos before and this is a requirement at the moment before you can be considered for Eribulin. To quote the blurb ‘Eribulin is for the treatment of patients with metastatic breast cancer who have previously received at least 2 chemo regimens for the treatment of metastatic disease. Prior therapy should have included an anthracycline and a taxane in either the adjuvant or metastatic setting’. In my case I have had Capecitabine, Docetaxel, Vinorelbine and MMM. My Onc is trying it because trials have shown good results. As you say, it IS good seeing new treatments coming along as I do worry I am going to run out one day! Judith.
Dear Fran and Thora
Hi. Do you mind me asking if for triple negative do you know who are not hormone or herceptin positive ?
Many thanks
Hope15
Dear Hope
I’m so sorry but I don’t really understand your question.
I am ER++ and Herceptin -ve. I don’t know if Eribulin is appropriate for Triple negative or not. I’ll ask next time I’m at the hospital if this is what you mean.
Thora.
This is one of the things we are considering, as we are getting close to exhausting all the conventional chemo options. Can I ask where you are being treated?
I am being treated at the Bristol Haematology & Oncology Centre, attached to the BRI (Bristol Royal Infirmary).
Thora.
Aaaah. That could be useful, as we are near Exeter. Many thanks!
Elaine - do you mind if I ask what you are on now and which chemos you have had?
I don’t think Eribulin is particularly unconventional - its just that NICE haven’t yet approved it which makes it a bit harder to get hold of. The cancer drugs fund is a national one so hopefully you will be able to get funding and treatment locally at Exeter if you want Eribulin.
Thora
Hi Thora. I’ve had-
Taxotere (worked),xeloda (failed,) Carboplatin (worked), vinoralbine (failed).
Until last week I was on taxol (worked initially but had progression after 6 cycles)
Hi Thora,
Yes I am on the same treatment. I have just had the first cycle having previously had TAC when I was initally diagnosed in Dcc 2008. In Jan 2011 diagnosed with Mets to lungs, live and bones and had Taxel and Avastin which seemed to work for the first three cycles (lungs looks clear) but the tumour markers started going up again so my onc. stopped that treatment and had started this.
Apparently it has been successfully used in the States for about five years and I am on a trial.
I was told there would be minimal side effect but after the first treatment my glands were enlarged and I felt awful for about 24 hours. Settling down now but have problems with water retention in my abdomin which is uncomfortable. Still if it works bring it on!
Cleomie
Does anyone know if any good for triple negative BC?
thanks
Hope 15
Elaine - thanks, that’s interesting. Taxotere worked for me too but Vinorelbine wasn’t much good for me either and I came off early. I managed 11 months on Xeloda though. Carboplatin was going to be my next one I think if Eribulin hadn’t come along. Eribulin is working already on my breast tumour at least after only 1 cycle which is encouraging.
Cleomie - welcome to the club! I too have bones lung and liver mets.
Sorry about your glands & water retention. I had lots of aches & pains with the very first one then just fatigue with the 2nd part of cycle 1. I had my first cycle 2 dose this morning. Lots of my hair fell out this week but have escaped any sickness etc. And - it seems to be working which makes it all worthwhile. Do you mind if I ask where you are doing the trial? It would be interesting to compare notes. Thanks. Thora.
Thora,
The trail is based in Chelmsford, Essex. I am due to have treatment one of cycle two tomorrow.
My hair had already got very thin but on Saturday I asked my husband to shave the rest of my hair off because it was getting me down.
So far it is difficult to see any pattern to the side effects. I think the fatigue may be worse and continued during the “week off”.
My tumour markers are about the same so far. They have come down (there were going up) but not significantly yet!
Cleomie
Hi Thora,
Just a message to ask how you are doing on this treatment. My last set of bloods showed that the tumour markers have come down significantly (at last). The side effects seem minimal although the fatigue is wearing and my knees feel like I have skied a black run. Still if it is working I am happy.
Cleomie
Hi Cleomie
Sorry not to reply sooner - I’ve had some PC probs lately, but back now. My side effects keep changing. I had cycle 2 on June 10th & 20th and fatigue much less. Had swollen neck glands for 2-3 days. My schedule was delayed each time by 3 days (admin hiccups) so that gave me longer to recover between doses which may have helped. I pretty well sailed through cycle 2(2)and felt OK and my breast tumour is smaller and healed over now so it is working on that at least. I have a CT scan on July 15th to check progress. I still have about half my hair. I’m hanging onto it for now. Sorry about your knees - I hope that soon passes. My Onc doesn’t do tumour markers - they don’t work for me but I’m SO pleased to see that yours are down. All the best with cycle 4.
Thora
Hi Thora,
Don’t quite understand are you due to have the breast tumour removed once it has shrunk? Pleased your are not feeling too bad.
I am on my week off before treatment cycle three and feeling reasonable and quite positive. I can definately feel twinges and tweeks in the liver area so hope that means the tumours are slowly dying. I sometimes get a sort of fizzing sensation in my spine so again I hope something positive is happening.
I hate being on steriods as they affect my eyesight and make me retain water but am trying to just put up with it and go with the flow. Suprisingly my hair has started to grow back and I am at the fuzzy gooseberry stage and making a bid to catch up with my husband’s style. Don’t want a wig so wear quite flamboyant scarves and hats when I go out.
At the least the weather is good and the garden has benefitted from the little amount of rain we have had which is some thing to enjoy everyday.
Best wishes
Cleomie
Hi Thora
I have just come back from Bristol Oncology Centre and my Onc is putting me on Eribulin when he gets funding from the special Cancer drugs fund, did you have to wait long, he seems to think it will be about four weeks
Hi Cleomie
I’m not having the tumour removed. Back in 2004 when I was DX they didn’t do surgery if you already had mets and since then I have decided to keep it. We don’t think there’s any conclusive research to say it would help if I DID have surgery and it has proved to be a good early indicator of treatment success/failure.
Glad to hear you are not feeling too bad.
You mention steroids - which are you on and how many? I have 4 dexamethasone just before the chemo and 4 to take the following day, 2 morning and 2 lunchtime. But I forgot to take all of them last time and was OK so I think my Onc has reduced the dose.
All the best with your next cycle. I’m off to hospital later this morning for Cycle 1 Day 1 followed by a bit of lazing in the sunny garden.
Best wishes
Judith
Hi Khristine
So pleased to hear someone else will be on Eribulin at BOC. Maybe we might run into each other at some point!
My Onc applied for funding on April 14th and I had my first chemo on May 17th and my application was a bit slow because of all the May Bank Holidays and the extra wedding one which affected when the Board sat.
I’ve had a few hiccups with delayed appointments etc partly due to the different funding for this drug which makes ordering more difficult but I have been promised that things are sorted out now, so I’ll be interested to see how you get on. One tip - don’t accept any appointments for chemo before 10.30am as Eribulin has to be prepared on the day of treatment and isn’t ready and delivered to CDU before 10.30/11ish.
Wishing you all the best - hope the funding comes through asap.
Judith.