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Hello all, Just been reading your threads re. eribulin.Hadn,t heard of it before today. Just back from hospital my onc gonna start me on it pending funding. I am being treated at Exeter.(original dx 2004aged 35, had FEC followed by mastecomy then taxotere. 5 years of tamoxifen then Arimadx. Liver, spine and lung secondaries dx Feb this year. Venoralbine didn't work, initially some success with capecitabine but now got progression)
Feeling pretty low just now. Just had my 44th birthday but feel twice that age. would welcome some positive comments as I really need something to hope for.
Hi Thora and Fran,
Well that was an interesting month!
Basically my ability to walk became less and less and following a scan I was rushed in to hospital for five sessions of immediate radio therapy because the chemo had successfully destroyed a tumour in my third vertebrae causing it to collapse which in turn meant if it touched the spinal cord it could have cause permanent paralysis.
Anyway so far so good. Home at last. The spinal collapse, radio therapy, bed rest and steriods have caused muscle wastage to my legs and upper body. This means I am having to learn to walk again with the help of a walking frame and getting out of a chair or off a commode has been a nightmare. Anyway, shear blody mindedness, exercise and determination, coupled with adjustments to seats has meant I can now walk (slowly but getting more confidendent) get off the commode, chair stair lift and bed without assistance.
Its wonderful to be home at last and although we had to have to make some alterations to be able to cope, I am not paralysed, I am getting stronger every day, I have no pain and feel well.
I am off all chemo for three weeks so have missed to last cycle of Eribulin and the side effects to my hands and sight are deminishing.
The promise of oral chemo is to follow but for now I cannot thank my woderful husband enough. He has been so supportive and worked his socks of to organise builders to adapt the shower, trained to use a hoist (so far not needed) followed me round as I make my way to the toilet, cooked, shopped etc and been a great encouragement.
Hope everyone else is doing well.
I am coming off Eribulin now as my latest scan showed progression. I had cycle 6 Day 1 last week but not doing Day 8. The scan hasn't been properly reported yet so I don't know the details.
Anyway - don't let this dampen the mood! I had a good run on it and it worked very well initially. We are all different so I am sure many of you will get better results and a longer time on it.
Good luck everyone!
Really interested to hear of your experience of Eribulin as my Onc mentioned it yesterday as it' s newly licensed - my liver is progressiing and he's excited that it should help me. At the moment we are trying steroids and Tamoxifen and liver function blood test look much more positive.
Cleomie your tumour shrinkage is brilliant - just the sort of positive news I need as also have liver 7cm tumour - seems some drugs can work really well - thanks for sharing and giving me this encouragement.
This is an interesting thread as I have heard that this drug has very recently been licenced at my hospital (Clatterbridge) and so it is an option for me for the future. I am triple neg and it is encouraging to hear that oncs are optimistic about the effectiveness of this drug for tnbc ladies 🙂
I will ask more questions at my next appt!
How is everyone doing on this? Good luck everyone 🙂
Hi Cleomie - just wondered how you are getting on? Did your Onc reduce your steroids and have you stopped sliding over? Hope all's OK with you.
Hello Bubbles - I hope you are coping OK with Eribulin - you are probably on cycle 3 by now? My side effects have varied slightly with each cycle but have generally lessened as time has gone on which is unusual for chemo. The main one is tiredness and I also get aches and pains and take painkillers now and again, and my eyes get gummed up and blurry first thing. I have been having problems sleeping so on my latest dose (cycle 5 day 😎 I didn't take any meds for side-effects at all, not even dexamethasone and it seemed to help. Good luck.
Hi Khristine - hope you are doing OK and your appointments are going smoothly up in Bristol.
Hi Everyone had my first treatment of eribulin at Bristol on Friday 26th August,hope it works for me, as I am triple negative and we are running out of options. Good luck to you all
Glad to find others on eribulim as i'm the first patient to use it at my clinic. I'm on my 2nd cycle now. Won't know if it's been successful until tests after 3rd cycle but I do feel positive in that my onco believes neck nodes have gone and the pain in lower back area has lessened considerably plus blood counts have increased too. Hair has thinned noticeably and this has caused most stress for me to date. Still on an emotional roller coast since sbc dx in feb 2011 (bones/neck nodes/chest) Had 1st dx in feb 2010; had 6 cycles of TAC back in summer which although had some effect obviously didn't work for my tnbc. Put on gemzar/carpolatin regime for 3 cycles in march this year again had some response especially with suspected chest tumours but my onco feels eribulim is the way forward for tnbc. I'm keeping everything crossed he's right on this one. Other side effects seem to be general tiredness and aches and pains in arms/chest areas recently. Oh! and indigestion! Does anyone else have similar side effects?
Very pleased it is working for you as well. I am finding it very difficult to walk though and have gently slid over twice now which has caused some creative thinking to get me upright again. My onc. says its muscle wastage from the steriods so is reducinmg them.
He has suggested doing more exercise like walking and swimming! Not sure what planet he is on. Getting in and out of the shower is dodgy. I can just see me coping with the steps to a swimming pool.
Congratulations on your scan results Cleomie! Marvellous.
I've had positive ones too (after cycle3). Not quite so dramatic but breast, liver and lung lesions have all shrunk significantly. Just started cycle 4. Fingers crossed!
Just to say, positive scan results. Tumour in my liver has shrunk from 7.25 cms to 2cms. so treatment working. Fingers and toes (full of pins and needles) crossed thst it continues. Tumour markers also down.
Still blurry vision and difficulty walking but making the best of each day.
Hi Khristine and Thora,
Just a note to ask how your treatments are going. So far my tumour markers are falling. Initially quite dramatically but have now slowed up. Seeing the Professor today so will see what he has to say about that.
Had a CT scan as well so will get results for that as well. Knees and eye sight still a problem and the week off seems worse than chemo weeks. I think that is because I get more steriods during chemo weeks.
Just thought this was a really clear website on looking after your liver particularly if you have mets there as I do.
I did know most of it but it is nice to have conformation that the food I am eating is good for my liver. Beetroot is going down a treat!
Hi Judith -- no experience of Eribulin, just sending you strength & good wishes, and hopes that this works well for you! And everyone else trying it, too! M xx
Good luck with cycle 3 tomorrow and I hope your markers are down.
I made a typo - I too had cycle 3 day 1 today, not cycle 1 as I wrote!
Initially when I first started treatments for mets in January I was on 4mgs of dexamethasone daily supplemented each time I had treatment. That then reduced to 2mgs and later 2mgs every other day. When the initial treatment stalled, my onc. increased them to 2mgs daily again.
I have now asked for some water tablets which seem to be making an immediate difference to how comfortable I feel around my abdomen which makes eating, breathing and moving around a lot easier. I am not a big person but the water retention was making me feel like a beached whale and very few clothes fitted. Don’t know why I did not ask for them before now.
Cycle 3 starts tomorrow. Hope the tumour markers have gone down significantly again.
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.
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.
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
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.
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.
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.
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!
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.
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!
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)
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.
I am being treated at the Bristol Haematology & Oncology Centre, attached to the BRI (Bristol Royal Infirmary).
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'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.
Dear Fran and Thora
Hi. Do you mind me asking if for triple negative do you know who are not hormone or herceptin positive ?
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.
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
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.