Hi,I’m due to start erubilin next Friday. If anybody has any tips or experience .I’d be grateful.
Hugs,Helen xx?
Hi 2catlady
I am starting it on 5 March, so would also appreciate tips. I have hair now as gem carbo and then cape did not make me lose it as Taxotere and FEC previously did. This will be my 5th chemo regime and I hope it will work on my triple negative mets. We can keep each other company.
Bumpkin x
Hi folks, I had 7 cycles of eribulin (aka Halaven) in 2013, thanks to Cancer Drugs Fund.
I was one of the unlucky ones who lost all hair… I think even my onc was surprised… also had bad fatigue, worse than on other chemos. Took me 3 months to recover. Otherwise straightforward and doable. Eribulin is kind to nails, so if you’ve been on capecitabine or Taxol this is good news.
Links to earlier threads about eribulin:
Hi have just had my scan results which show that Capecitabine is not working for me, my liver tumours have increased. I have been advised that I to will have Eribulin - so as Helen says all tips welcome. ?
Thinking of you Helen, with many cyber hugs (hug) (hug)
It’s ok to be honest that things are so difficult for you just now… most of us can probably empathise a little, though I’m aware that this may not seem to help.
Not sure what to suggest in practical terms, maybe BCC helpline if you’ve not tried it??
Just to say I’m thinking of you and sending hugs. You are allowed to have meltdowns, we all do!! I’m sure everything will settle down for you once you know what to expect from new treatment but meanwhile, be kind to yourself and know we are wishing you well xxx
Oh Helen, I’m so sorry you are going through all of this! They shouldn’t have treated you like that! There are so many caring nurses out there, but you get landed with that lot! I wish cyber hugs could help more. I am thinking of you. You are entitled to feel the way you are at the moment, you have been through enough the last month or so. Please try to bring yourself to ask for help from the nearest Hospice (I understand how difficult that would be). As others have said, they aren’t just there for the end of days. The local Hospice helped my mother tremendously with pain relief before she needed them later. I do hope you don’t think I am being too blunt - I don’t wish to upset you. Lots of hugs. Barton.x
I too been follically challenged twice and about to be for a third time. I found Annabandana on the Internet and have been very pleased with everything I have purchased. It is lovely to read the post and to realise others are in the same boat and understand how you are feeling. I think you must all know each other and live close to each other or visit the same hospital from your comments. Am I right?
Just popping in to say that I had a planned blood transfusion (anaemia, low haemoglobin) in Nov 2014 and yes, it takes ages, but I did feel the benefits and at my last blood test in Feb this year, the Hb was still at a good level for me.
Hi RoseRed
Yes there is great support on this BCC forum among us mets ladies. 
You mention 4 chemos… I’ve also had 4, EC, taxol, eribulin, and capecitabine (twice!) and my oncs have been talking about vinorelbine (tablets) as another chemo they could offer me.
I know what you mean about family… but after my bone mets dx 2006 my daughter produced another grandchild, and since my liver mets (2009) I’ve a lovely daughter-in-law and 2 more granddaughters (cousins). It’s sometimes hard to remind myself to enjoy the good family moments, but well worth it.
Well after a wonderful Mother’s Day with my son, daughter, their partners and my four grandchildren we finally got away for a few days, despite a UTI which required antibiotics. I have my pre assessment appointment and bloods tomorrow and should begin treatment on Wednesday. For the first time through this long process I feel apprehensive. The Onc has said if this chemo does not work there is nothing else available at this time - there is one other drug but it is from the same generic family so he doubts that would work either. The enormity of the situation is hard to carry and the pain in my loved ones faces is unbearable to see. I am a very positive person normally but not today.
Hi Ladies, went for pre treatment assessment yesterday. I was cleared for cycle 1 dose 1 of Eribulin which I had this morning. There was a slight hiccup as although Onc had asked for a line insertion it hadn’t been booked in - so they had to try for a vein in my good arm (lymphodema in other arm) luckily second attempt worked. Came home and fell asleep, awake now and so far not too bad. I really don’t know why I was getting so upset about it. Red_Rose x
Hello all im new to this thread. though not new to forum. Was diagnosed in 2009 lump removed and lymph nodes had chemo and radiotherapy got on with life. Two good years then fear hit me, sinking me into depression. At this time I was unable to log into the site which had give me so much support in the past through fear of reading anything that may cause me further anguish. I have always felt guilt about this , felt like I had sucked up all the support then was unable to give back.
So it is with a little intrepidation that I am here.
Two years ago diagnosed with lung and bone mets. Capicetabine, paclitaxol,veniloribine, capacetabine again all failed so now on second cycle of Erubilin.
I am lucky (ha ha) enough not to be suffering to bad side effects. Hair loss and tiredness yes but also insommnia for first couple of nights after treatment. Go to bed drop off after a little read the an hour later wide awake. Been up since three and its six now.
I will follow you ladies and chip in if I feel I have anything to offer. Good luck and peace to you all kittyx
Hi everyone.so pleased so many are having positive feelings about this drug. I had my first dose of cycle 1 last Wednesday 25th and I am only just getting back to normal. I slept wednesday afternoon and evening, all day and evening Thursday and through to lunchtime Friday. I wasn’t sick, which was good, just extremely tired., only waking for hot drinks and comfort visits. I am back to the hospital for line insertion, they forgot to arrange it last week, and 2nd dose this Wednesday. I just hope it doesn’t knock me for six again. Keep smiling and sharing it really helps. Rosie xx
Finally my white cells have improved and I will have my line inserted and chemo on Thursday…I have missed dose 2 cycle one and my Onc has decided to reduce the dose by 20% and only give one dose per cycle followed by 5 days of G-CSF injections. I am just relieved that my body has recovered and that treatment can start again… I have lost my hair all bar a few stubborn strands and one foot has a spilt in the heel which is being moisturised and cling filmed 3 times a day. Apart from that I am feeling so much better. I hope scan results, treatments and appointments go well for everyone this week. Try to find time to enjoy the sunshine if you are lucky enough to see it. Rosie x
Hi helen i had awful mouth ulcers with my treatment and used difflam mouth wash and hydrocortisone mucco-adhesive buccal tablets which really helped although you are suppossed to melt them on the ulcer and when you have loads you have to move the tablet around. I got aoloclaire mouthwash from boots it costs nearly 10.00 but it is really good. And baby toothpaste.
Hello Ladies, ist time i have posted on this thread but have been on bone and skin mets as i see some of you have as i know your names. I am about to start erubilin tomorow. Finished cape 6 weeks ago, pet scan showed no active disease 4 weeks ago and within 2 weeks i had further skin mets. Apparently skin mets dont show ip on scans??..great!! I am still convinced that if i’d have stayed on cape i would have been ok but my onc is till insisting you cant stay on it indefinitely. I have told him there are women on here who have been on it for years but to no avail. I have been told i can stay on erubilin for as long as its working so i’m assuming that resigns you to a hairless life…i must say that was one of the things that got me down most with my other treatments but io know its a small price to pay. It seems that this is quite tough drug re bloods so taht must be quite ‘wearing’. Oh well, at least i ahve been given the chance to have this one…a few months ago it looked like it would be off the CDF list so i’m grateful for that. I’m sure i’ll be back on here for more support from you lovely ladies. x
Hi all, hope you are all as well as can be .I saw doc today for results of scan last week. Found cancer in lung still growing and two suspicious areas to bone in lower back. She suggested taking break from chemo for a while or continue with Erubilin for further three cycles as she is unsure if it is slowing the growth. I have opted to continue but am very shaky about this . I am also aware I am running out of options Oncologist tells me there is only one chemo option left for me after Erubilin,but can’t remember the name of this treatment as I was a little in shock I had expected being told all was well. Tanks for listening x
Yes tnbc hoping for a miracle x
Good morning to you lovely ladies. havent posted for a while as still reeling from recent bodyblow. Just finished 1st 2 parts of cycle 1 erubilin. I dont know if i mentioned that after i was told my skin mets had spread in my neo breast i also noticed nodules in my abdomen cant say i’ve noticed any change yet. Sorry i cant remeber names but i’m sure one of you has skin mets…did yours spread and when did you notice any improvement, My onc actually asked me to get a second opinion ( i think he was stumped by the mets appearing again so quickly) which i go for tomorrow. I also noticed one of you said you were going for a pet scan soon…did you have to stop your chemo for four weeks? when i finished docetaxol and cape i had a 4 week wait and i now wonder if i hadnt have had this gap, or indeed have gone back on cape, hether i would be where i am now. Anyway hope you all have a good wek. Much love.x