Hi ladies
thought it might be a good idea to start a thread for those of us on the new chemo drug, Eribulin. There are not many of us around but I thought it would be good to share our experiences to support each other + to help those who start Eribulin in the future 
I had my 1st dose last Thursday, have found the se’s totally minimal so far. Day 4 today + feeling tired+ a bit groggy but that’s it. The best thing has been no steroids or anti sickness because I have slept (hooray!!) +'my bowels are functioning well and haven’t turned to concrete (yippee!).
My big anxiety is waiting for the hair loss but that’s about a fortnight off I guess…
Hope everyone else is coping well on this- does the day 8 infusion knock you for six btw??
Love tina x
Hi Gingerbud
Although I am not on Eribulin, it is so good to know that new drugs are coming on to the market (i have recently been diagnosed with secondaries to bone).
I am really pleased that you have found the se’s minimal and that you are able to sleep. I wish you every success on this treatment and a good 2012 to you. love xx
Ah thanks for the lovely post Joules Yes I feel very fortunate to have the chance to try this very promising new drug- costs a fortune but the special cancer drugs fund approved it for me. I am just praying it slows the bugger down as my last scan showed significant progression. Sorry to hear about your bone merts dx- heres hoping you are one of the many ladies who do really well for many years
Take care xx
Bumping x
Hi gingerbud
I put a post on the other eribulin thread but it probably makes more sense to put something here.
When I had taxol a couple of years ago I go an almost instant response to it (markers fell after first dose) with eribulin I had no change in liver function or markers until last week (first dose of cycle 3 so 5th dose of chemo)
Most recent blood tests show that markers have gone down by about 20% and both liver function enzymes (proteins? ) have improved
As far as side effects are concernrned I am taking steroids for 2 days after each dose - I think that I may have to have steroids because my liver function wasn’t good when I started and I didn’t cope well with the eribulin. The steroids make me very ‘buzzy’ and I don’t sleep well. When I stop taking the steroids I have a day or so of feeling a bit down and also very tired and achy. So all the SE’s could be steroid related and nothing to do with the eribulin!!
However, for me, the liver pain I had when I didn’t take the steroids was pretty grim. I’d rather not risk that again and quite honestly the SE’s really don’t seem that bad when compared to taxol or fec
The doctor phoned me on 30th dec to tell me my results. He knew how worried i was that this chemo might not be working so It felt like a great start to the new year :-))
Mx
Hi tillycat
really sorry but I somehow missed your post + have only just seen it when looking for the thread to bump it up! Thanks for replying- hopefully more eribulin ladies will join us soon
brilliant news about your results!! You must be delghted. I will probably get scanned after cycle 3 or 4 so hopefully by then, eribulin will have had time to kick some butt!
I too have liver pain, which seems unusual given I only have a possible 2or 3 small lesions (between 5-9mm). It seems that most people have no obvious symptoms but I guess we are all different. You are right to stick with the steroids if it eases the liver pain. Jst a shame they cause sleeplessness and other se’s.
I think the reason I’m feeling so well is coz I’m not having to take the steroids or anti sickness. I have felt a bit queasy + had some heartburn since chemo yesterday but nothing major. Had the morning in bed as my little boy goes to nursery on Fridays and had some reiki this afternoon. Have been out shopping and stuff too- just hope my body continues to tolerate this chemo well.
I’ve had my hair chopped into a really short bob in preparation for the likely fall out. I’m guessing it’ll happen just before the 3wk mark?? Will have to buy a hair net as my little boy sleeps with us and I don’t want him waking up with a gob full of his mummys hair!! I shaved it off last time round so never endured the hair coming out everywhere nightmare. Not doing that this time just in case I’m one of the lucky few whose hair only thins.
Anyway, keep in touch and lets know how you are getting on.
Love tina x
Hello Ladies
I had my third dose on Tuesday, so first dose of cycle 2. My hair is now very, very thin. Fortnuately I’ve not had any liver pain.
I’ve had issues with insomnia so my second dose of cycle 1 I only took one steroid twice a day, instead of two. I still didn’t sleep but neither did I have nausea. I spoke to onc on Tuesday and he said, as I hadn’t had nausea and otherwise felt okay, I could choose whether or not to take steroids. I decided to take, again, one twice a day, plus he prescribed sleeping tablets - 7.5 Zopiclone. I took one and slept like a log! Felt groggy most of day so will only take half tonight and see how that goes.
If I still feel the same next week, I’ll knock off the steroids altogether and see how I feel about the sleeping tablet. Maybe by then I’ll have knocked them off or just have half per night.
Good luck to us all.
xx
Hi ladies
I’ve just finished my 3rd cycle of eribulin. I think that I am going to be booked in for a scan sometime soon. I see my onc next Tuesday
I have been feeling really much better recently so I am optimistic that it’s doing it’s stuff:-)
A friend who is a nurse in Canada sent me some melatonin tablets, I have been taking 3mg at night on the days the steroids usually stop me sleeping - I have slept really well and woken up feeling quite rested and ready to face the day. I should probably check the tablets out with my onc but I’m afraid he will tell me to stop taking them. As I am only taking them for a couple of days and my friend says that they are commonly used by women with BC in Canada I think I shall just keep quite and enjoy the sleep.
Strangely my hair, which had pretty much all fallen out, is now growing back in a very thin, fagile looking kind of way. I have to decide whether to shave it off or let it grow to see what happens.
Grannyscouse - glad to hear you haven’t had any liver pain. It does seem to be a pretty gentle chemo doesn’t it
Gingerbud- I hope that the liver pain stops soon. I think mine has got better as I have gone along. I am going to ask my onc about reducing the steroids next time to see if it really is less.
Good luck to us all - let’s keep up the positive thinking :-)))
Mx
Hey ladies
good to hear you are both doing well
Sleep seems to be a big issue+ I fully understand as indidnt sleep for a few days on the dreaded steroids. Grannyscouse, I would defo try a cycle without steroids if u can? I’ve been fine without them. Tillycat- it’s a shame u can’t skip the steroids but hopefully the melatonin will really ease the sleeplessness.
Can I ask when you both started to notice the hair loss?? Is it around the 3wk mark, like with the fec etc? Just so I can be prepared.
Grannyscouse, with that username I’ve gota ask if you are a Liverpool lady like me? Small world if so!
Enjoy the rest of ur weekends ladies xx
I had pretty much lost all my hair by the beginning of the 2nd cycle. Hopefully you are still hanging on to yours.
Saw my onc today
He thinks it’s worth continuing with eribulin and has suggested another 3 months
He kept asking me how I felt as he said that if I felt better and wanted to continue then we should but if I didn’t feel better and wanted to stop then that was ok too. (I just wanted him to decide but hey ho)
Tumour markers have gone up a bit again and liver function has got slightly worse. Bizarrely I felt like I was trying to cheer him up as he seemed a bit depressed that it wasn’t having more dramatic results. - I do think that I have enough on my plate supporting my family emotionally, can’t believe I am now going to have to support my oncologist!!
no ct scan until I decide I want one - has this man been on a ‘patient knows best’ course
The weird thing is he is usually so decisive. I really don’t know what had got into him today.
One last thing - since all of my future chemo treatments seem to be ones that involve hairloss I have decided to look into a 'freedom’wig you can look them up under vacuum wigs on you tube, or google freedom wigs. They are very expensive (a short one, which is what I would go for, is about £1500, but a 12-14 inch one is 3-5k!! )
They look incredibly realistic and you can do anything in them, sports, windy days, even swimming
My 12 year old daughter so wants me to look ‘normal’ when we go shopping so she is very excited
Hope you are all ok
Mx
Hiya
sorry to hear uv had a bit of a strange appt with ur onc. Ur post had me chuckling (abut emotionally supporting ur onc lol). I suppose they can’t win at times- we don’t want them to dictate but sometimes they give us too much say. How do u feel about doing another 3months? Will u go 4a ct scan some time soon? I don’t have markers taken + I’ve read they tend to be unreliable so try not to panic. Hopefully it is working but slowly hence no dramatic improvements. It’s such a stressful pile of sh*te this secondary bc stuff isn’t it 
the wig sounds amazing! Another girl on here has described something similar. Sounds like a lot of cash but what price can you put on ur hair? I might be looking into it myself by next wk but I’m hoping I will get used to a wig again should I need one (still a full head at this point- day 13).
Ur holiday u described on my hol thread sounded amazing btw! You are a brave lady!! Good on you for having such a fantastic adventure! I haven’t asked my onc yet but I’m sure she will be fine as we plan to go 14days after my day 8 infusion, so plenty of time for bloods to recover. We are going by hook or ny crook so she’d better comply with my plans lol!
Take care of yourself xx
Thanks for this post. feeling tired after one year of different chemos. Discussed this drug with my oncologist at last visit , with a view to trying it next time around. good to hear from people already taking it. Keep us posted.
Clare j
Hello ladies
how is everyone doing? Hope eribulin is treating u all kindly
I’m still feeling pretty good, enjoying my week off! But I’m increasingly anxious about my hair! It’s day 16 and no sign of any loss so far. All head + body hair is intact! Think it was day 16 my body hair fell out on fec and a few days later my head hair. All the literature says 50% lose their hair on eribulin but everyone I have read about on here and other bc sites, everyone has lost it!? Seems the literature is a bit misleading (although I’m hanging on to a glimmer of hope lol!).
Claire- glad you’re finding this thread useful. Hopefully you won’t need eribulin for a while yet but when you do, be sure to join us. It’s early days for me but I’m finding this chemo very doable, particularly because not needing take-home meds. I’m pretty tired on and off but nothing major. Good luck
I’m in for my 2nd cycle this Tuesday (should be thurs but onc has moved me to a different clinc so I’m losing 2days from my good week!). Hoping bloods are ok + I cope as well with cycle 2. Hoping to have a week abroad at end of cycle 2- will ask onc when i see her on 24th. Fingers crossed…
Have a good wkend all
tina xx
Hi ladies
Sorry for such late post.
Completed 2nd cycle on Tuesday. Hair nearly all gone now. Strange conversation with Onc. He looked straight at me and asked if I’d suffered hair loss - HAIR-LOOOOOOOOOOO!!! I know people have thin hair naturally but it seemed strange he should ask me this as I have hardly any hair. He then said at least the chemo was doing something!!!
Then we got on to funding. Again, strange conversation. As Tillycat says, it was as though I was boosting him! (Maybe they had an Oncs conference and had to ask the questions this week …!) He asked if I felt better or worse from being on this chemo. I said difficult to answer really as I wasn’t feeling particularly ill when I went on it. I’d had no liver pain and didn’t feel any better, and the only way I felt worse was because I wasn’t sleeping and therefore the fatigue I was feeling made me feel worse.
He said there’s a shortfall in patients (but I suspect he’s hoping there’ll be more of us in time) so we’ll see how we go.
All in all, I haven’t taken any steroids this time round and haven’t felt any nausea, although I still feel very fatigued. I can’t figure out if it’s the chemo or me being lazy!
Gingerbud, yes, I’m originally from Liverpool. There was a lovely lady called GrannyAnnie who dropped dead literally on the kitchen floor (not through cancer) and people said I had to replace her. I’m not even a Granny - I’m a Nanna - and as my name isn’t Annie they said I had to become GrannyScouse, so that’s how I came about. I live not far from Manchester. I hope you continue to keep your hair.
Good luck to us all.
xx
Hi Ladies,
can I join in ?
Have had BC for over 20years now.
1991 had Mastectomy but no further treatment
2003 2 years after being discharged found lump at end of scar C was back. Had lump removed & Radiotherapy.
2009 after another 6 yrs clear swelling in same area. Several small lumps C back again. Lumps removed Chemo started. FEC effective for a while chemo carried on with 6 different types in all over the next 3 yrs. It has now spread to my bones in a couple of areas since 2010.
Started Eribulin in November 2011 so have had 4 cycles now.
Told my hair would only thin which seems to be right so far. I have almost lost eyelashes & Eyebrows though. Why doI never lose the hair on my legs ?
Generally feeling quite well not taking any anti sick as no need.
Nice to hear from others on same drug.
ChemoQueen
Hi all, I think there has been talk of hair loss and Eribulin on another post but just jumping in here - I lost my hair for the second time just before Christmas thanks to Taxotere. I hated wigs and scarves first time round so this time, went for a hair replacement ‘system’ which is essentially a real hair wig with a much thinner base that is glued on. You go back every 3-4 weeks to have it removed and reapplied, but otherwise it’s like normal hair, i.e. washing, blow-drying etc. It’s expensive - 2 pieces have cost me £2,500 (you have two so that when one is being ‘repaired’ - more hair put in from when it falls out), you always have another one. But it’s the best money I’ve ever spent. Unless you were looking REALLY closely at the hairline, there’s no way you’d ever tell and I don’t have to see my horrible bald head every day. My ‘hair’ is now long and thick, much better than my own ever was. I’m really happy with it. I also had semi-permanent make-up done - eyeliner and brows. Eyeliner hurts a bit but otherwise fine!
Hi francescap29
Your very welcome here we have all been pondering hairloss so suggestions/ideas are very welcome
Can your carry on with this system when your hair is growing back or do you have to be a complete baldy for it to work? I was looking into a very expensive wig system but it only really works when you’re bald, and I am hopeful that mine will start growing back as soon as I finish this chemo. also does it have a name? (so I can google it)
I have booked to have semi permanent eyebrows done next month (between cycles and only if I can prove my white blood cell count is ok) feeling a bit nervous as you can’t really go back and say you don’t like them, take them away, so I’m glad to hear you’re happy with yours.
Mx
Hi ladies
hope everyone is doing ok I had cycle 2 on Tuesday, and have felt good since. Have been a bit off today- upset stomach but no temp thankfully. Can’t believe it but still have my hair?!? Haven’t noticed any loss at all until today when washing. Noticed more hair than normal on my hands. Maybe this is where it will start? I really thought if it was going to go, it would have gone by now. Seeing onc after day 8 infusion on Tuesday. Worried it’s not doing much because nodes at clavical feel as prominent as ever (if not moreso). Hopefully there will be improvement when I’m scanned soon. Hoping to be in Tenerife this time in a fortnight, just got to get a definate go ahead off onc on tues then we will book.
Chemoqueen- welcome to the thread Sounds like u have been through the chemo mill! Here’s hoping eribulin gives you some brilliant results. Do u have a scan planned? Great news that you haven’t lost your hair. Good luck x
grannyscouse- hope you’re feeling well? Good that you coped last cycle without the steroids. Hope you are ok x
M- how are you doing? Hope all is well x
francesca- so glad ur happy with ur new hair! Sounds amazing- enjoy x
speak soon x
Hi Tillycat, sorry for the delay. I’m not really sure whether it would work with hair regrowth, I presume not as it’s glued to your head. I have presumed mine is not coming back in any decent form now, as I think most drugs they may put me on going fwd will be hair loss. And tbh I hated the regrowth period just as much as losing it so I’m happy to just shave whatever comes back off and stick to my new hair!
The company I went with is called Foley Court - their website isn’t great but I think they have branches in a few places round the country, not just London where I went.
Hope this helps!
PS re eyebrows, it’s VERY dark at first but when the dye ‘scabs off’ (lovely) it’s much lighter. Then you go back for a second session 4-6 weeks later - mine are much lighter now than when I first had them done, but it’s not as dramatic as you might think. Don’t be alarmed by how dark they are at first, I was shocked as it looked like someone had drawn them on with a marker pen!
Hi ladies hope you are all doin ok?
Just a quick post whilst high on seroids following my day 8 infusion of cycle 2. Realised I had no sleeping tabs left at 10pm tonight- think it’s gona be a long night
Good news is that onc has authorised my holday request (yippee!) so cycle 3 will be delayed by a week. Hubby booked it this aft so we are off to Tenerife next sat for 8 nights. Praying my bloods behave themselves this next week but I will take pleny of manuka honey to help them along. Onc said she will request scans after 3rd cycle so I’m really glad we get a break now as things will be up in the air next cycle. Hoping my hair sticks around for the holiday. It’s slowly thinning, mainly when washing so I’m limting mself to twice per week + I’ll use batiste to perk it up in between…
Right, I’m off to count some sheep! Take care everyone,
tina x