Hi there,I would like to hear from anyone who has had/having treatment for Secondary BC with the new drug Eribulin (also called Halaven)?My oncologist says this drug is my only remaining option of treatment as I have received so many different hormone drugs and chemo in the last 5 years since my Sec BC diagnosis.He has said it will only extend my life by a few months if I decide to try it and it can cause many side effects (although I know not all patients will experience them).It is really a case of deciding whether the benefits outweigh the risks/side effects and I just don’t know what to do.I am only 44 and have a 15 year old daughter,I just can’t bare the thought of leaving her and feel I have to give this drug a try.My oncologist has sadly given me a prognosis of living for anything from a few months to a year (something I didn’t want him to discuss but it’s too late now)I don’t believe we are statistics and how is it possible to guess a patients expiration date.As one fellow BC patient said we are not born with an expiry date stamped on our foreheads and she is right.I would really appreciate some feedback on this drug if there is anyone who has experienced it or is currently receiving treatment.Many thanks and best wishes,Tracy
Bumping up for ‘latest posts’
So sorry to read your post Tracy and despite your Onc’s prognosis do try to stay positive and fighting as no-one can really predict and as you say we are people not statistics and there are many peopke out thdere given poor prognosis still going several years on …
I’m sorry I can’t help you with your question either as I have no experience but am sure there will be some womenwho have tried this drug so hoping that by bumping your post someone will notice and reply.
Good luck, sending you positive vibes, Julie x
Hi Tracy, sorry I did reply to this a few days ago but it doesn’t seem to have appeared! Anyway. Yes I am on Eribulin having accessed funding through the cancer drugs fund. I too have had many previous chemos (Fec, capecitabine, parp inhibitor trial, taxotere, gemcarbo) and I can tell you, in my experience anyway, Eribulin is BY FAR the easiest drug I’ve been on in terms of side-effects. It’s a tiny amount they give you - I had my anti-sickness IV halved and now don’t even bother taking steroids at home. It’s not a sicky drug, for the first 24 hours I’m a bit tired then it’s totally fine, almost not like being on chemo at all. It’s also had some good results even on women who have been heavily pre-treated. I know of 4 other women who have been on it, only one said it hadn’t had any effect at all. So I’d say go for it, totally. I know what you mean and there are times when I ask myself how much more I can realistically take (something I never thought I’d be saying at 32) but Eribulin is really do-able. I also take GCSF injections for 5 days afterwards and my bloods have been tip-top. Other people say eribulin gave them neuropathy, I havent had that. I’m just waiting for scan results to see if it’s worked,really hoping so as I would be v happy to stay on it if it continues like this.
Good luck xx
Hi guys,
I am going to start it in a few weeks and am horrified at the thought of losing my hair again, feel pessimistic of its effectiveness and am terrified of the side effects. Was hoping to have an OK summer with my son (7) on my tablet chemo. Now I feel like I’m going to be ill all the time, hiding from the world (easier than wig wearing) or just depressed. See how good I am at positive thinking!!! It was good to hear that the SEs might be doable, as I had read some scary things. Would be good to have others to talk to through this.
Love, G xx
Hi Tracy,
Sorry I have only just seen this post but wanted to join the ‘Eribulin Gang’ as I had my first infusion today. Obviously can’t add much re: SE’s yet but will keep you posted.
I have tried numerous other chemos & hormone treatments which is why I qualified for the Eribulin. I was recently told my cancer had spread to my lungs & liver, which was a shock, and my liver is giving me problems at the moment. Mainly nausea, feeling bloated, lack of appetite, losing weight, so I’m really hoping this new drug helps me - fingers crossed!
All I know is I feel better today just for having the IV anti-sickness & steroids, so just that is enough so far! Hoping my SE’s are minimal too & it works it’s magic for me!
Love & hugs to all,
Dugsy x
I have not had Eribulin this myself, but I know two people who have (one with secondary BC in the skin, and the other with triple negative secondary BC). Both feel it has worked, in that it has slowed progression. Neither mentioned SE’s, other than tiredness, and neither had lost their hair - although it had thinned.
Will be thinking of you, and praying all goes well for you.
Many thanks for your replies to my query regarding Eribulin.I’m sorry I didn’t get back in touch straight away but events took over and I wasn’t able to use my laptop.
Over the past few weeks I noticed that my abdomen had been increasing in size despite not eating any more than usual.It was also becoming painful and i had a feeling it might be due to a fluid build-up.I ended up in the cancer assessment ward 3 weeks ago now and have only just got back home.After alot of messing about the doctors eventually discovered the fluid wasn’t actually in my abdomen but in my right lung.I then had a lung drain put in which took 10 days to give up nearly 4 litres of fluid.I was seen by the chest and thoraxics team who are talking about a pluerex drain as a talc pleuradesis is unlikely to work.They have discharged me though so that a reasonable amount of fluid can bulid up in the lung to do the operation safely.I just don’t like the idea of a permanent tube inside me which has to be emptied once or twice a week by district nurses as I had one 5 years ago in the other side and it ended up getting infected and it just “fell” out of my body by itself one day.It made me really ill with a high temperature and I was on IV anti-biotics for 10 days.I am seeing my GP today to discuss my thoughts about it with someone I trust.At the moment all chemo is on hold as I’m too ill to tolerate it.
Eribulin sounds like it is doable though the opportunity arises so thanks again for your imput.It’s great to hear from others who have actually experienced the drug or know someone who has cos you hear so many scare stories and don’t know what to believe.
I will keep you posted re the pleurex drain,thanks ladies and keep well,
Tracy xxx
Hi, I just read your posts as have just seen my onc who is arranging for pleural effusions to be drained and also ascites from abdo, hopefully tomorrow. (Thought I’d be in and out, but getting worried now I see it took 10 days for Celestial!) My onc only seems to have two more treatments up his sleeve - Vinorelbine which I will be starting 15 January, I think, and Eribulin. I’m also depressed - just had my 47th birthday. I have two daughters aged 21 and 19. Hopefully I will still be around to see my oldest girl graduate this autumn, but my youngest won’t graduate till 3 years time if she gets in anywhere this year. Looking a bit dicey! I have been trying to retire on the grounds of ill health, and I think this will probably come up end Jan/ mid Feb, but now don’t think I’m gonna be well enought to have the blow-out, memory-making trip of a lifetime which I had wanted for my hubby and girls. Feeling sad today. Sorry to bring you all down 
. Anyway, the point of the post was any tips for Vinorelbine/Eribulin/pleural effusion drainage. Thanks.
xxx
Hi Girls
just to say I may be starting Eribulin within the next month or so. I was worried about the SEs as have been on Xeloda for 20 months without a problem. I then had a break of 2 cycles…everything was fine then started with ascites. Keeping this in check with spanx type knickers and water tablets. Bit of a struggle trying to get them down in a hurry…a few accidents lol.
Hi Chris
sorry you’re feeling down, we all get like that now and again. Spent last weekend crying but I don’t know what triggered it. Of course this time of year can make anyone depressed. My problem is that I feel the cold all the time, im on Capecitabe but will be changing to Eribulin soon, I’ve developed ascites again and none of my clothes fit. I worry about my family too etc etc…my hands are sore and just feel fed up .
hope you feel better soon
Jane x
I’m on day 9 cycle 6. It’s going quite well so far. Still have hair! Thinned a bit. Not a sicky chemo in my experience. Hopefully onc will sign me off for another 4 cycles if all is well at next appt. Have a look at the American site, havelin day 1 Thread. Breast cancer.org.
X Sarah.
Hi Everyone, I have just stumbled across this thread and hope you are all ok and Eribulin is working for you all. I have secondaries in my liver and bones, and start Eribulin next Friday. I have lost my hair twice and hopefully won’t loose what little I have ( it’s about 1/2 inch long) Have any of you had any other side effects?
sorry its late and am tired…cant work out how to delete multiple posts!!!sorry guys andie
Imtersted to hear your comments Tracy…have secondary mets in bones and liver too but was diagnosed with primary and secondary at same time…currently having docitaxin every three weeks for 6 ‘goes’ … my first stint. I too have 15 and 17 yr old and understand what you mean by date stamp…my oncologist said 2/3 yrs for me and i havent even started much treatmnet yet!!! so feel as if sell by date has been stuck on…want to see them both at uni at least and on way to adulthood!!I am also single parent - they have no contact with their father! so for them no one to look after them when I go.
I hope you get on well with this new drug …going to ask my oncologist bit more about it…I seem to be quite lucky in that I havent been sick with mine just muscular and joint pain which is horrendous but strong co codamol helping!!
there is no sell by date but its hard not to ask
best wishes
andie xx
Hello, ladies
It’s been awhile since I posted, but here goes.
I too was diagnosed with breast cancer with secondaries at the outset. I too was told two years would be a good lifespan for me. That was in 2005 and I’m still here going strong. I’ve been on various treatments, lost hair three times, and also had Eribulin. Unfortunately it didn’t work for me and I was taken off it after about three months. I’m now on Capecitabine/Xeloda, cycle 16.
All as I can say is don’t give up hope. They’re coming up with new treatments all the time, and it’s all trial and error for them as well as us.
Good luck to us all. xx
Hi all, I expect to be joining you on eribulin in a couple of weeks. This seems to be the main thread about this newish chemo. but there are others - I’ll post a new thread “Links to eribulin threads” so hopefully we can help each other and anyone else wanting to find out about eribulin and its side effects.
This is treatment no.8 for me, bc/bone mets dx 2006, liver mets dx 2009. Good quality of life so far.
Hi ladies
Not been on for a while. I usually pop on when I start new treatment to find out about from the people in the know.
I started my first dose of eribulin yesterday. This follows, femera, xeloda, venoralabine, faslodex, taxol and tamxifen.
I have mets in spine, hip, lung, abdomen, chest wall ribs and liver. The problem is the liver hence the new chemo.
Just had a break from chemo since April and starting to feel better, hair and eye lashes growing and looking a bit more human. Hair loss is not inevitable, but knowing my luck a certainty. Re-action so far, a glowing red face due to steroids and chemo. Anyone else had this?. Original bca 18 years ago, mets almost 3 years ago.
Horsie5050 I am sure we have met on other threads?
Elaine
Hi Elaine, I think I have sent you the hyperlink to the thread we appear to be using. Am no techie so anything could happen!
http://www.breastcancercare.org.uk/comment/2117942#comment-2117942
You shouldn’t loose your hair, but I have found that mine is growing back thick and curly - think 1970’s afro, which is not attractive on a 48 year old white woman!!!
I have been on eribulin since April, just completed cycle 5. There is stability in my liver - yay! so will stay on it until it stgops working. I have a CT scan after cycle 6. I have felt fine on it, no side effects at all, perhaps a bit tired on occasions but nothing to grumble about. Elaine, your name rings bells with me too.
Love and hugs. Laura xxxx
Hi again ladies, I have posted on the other thread (called Links to earlier…) It’s a bit confusing trying to find things on this forum, that’s why I’m posting on BCC more than I usually do, because eribulin is so new. Hope that we’ll find each other again when the new forum is launched!