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Eribulin/ Halaven Ladies
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
we have all been pondering hairloss so suggestions/ideas are very welcome
Your very welcome here
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
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.
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
x
hope everyone is doing ok
Chemoqueen- welcome to the thread
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
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
Hi everyone
Glad you all seem to be coping well on this chemo. Gingerbud, have a great holiday - and I hope your hair stays on your head!
Francescap, I too hated wigs and scarves but the price of the hair replacement!!! I know we're worth it but I honestly couldn't justify it - and I don't know that I could be bothered. I was determined to go commando this time round but I'm losing my nerve a bit. I've got an almost 14-year old granddaughter and I know they're very sensitive about things at that age, so I'll probs wear a hat or scarf when I see her. Also, I'm meeting an 89-year old uncle next week and he's got more hair than me! I've got an appointment with Headstart at my hospital tomorrow morning to try on hats and get ideas for tying scarves.
I started cycle 3 yesterday. Onc is very pleased with how I'm doing ... but he did say I'm the only lady he knows on this chemo who has lost her hair. Well, I've still got some and I'm waiting to see if it goes the way of the rest of it. I'll let you know. I haven't taken the steroids again and don't feel any the worse for it. I also mentioned that I'd read Erubilin can affect the heart. As I have a heart condition, Onc sent me for an ECG yesterday. It came back clear, with no sign of my atrial fibrillation!! I'm not saying the chemo has helped it, as this condition is an erratic hearbeat and it could just be that yesterday I was calm and collected.
What about treatment times at your hospital? Any long delays? Yesterday, my bloods were at 1pm, Onc at 2:30, chemo 5:30. With the chemo suite always being behind, I got seen at turned 8pm, home by 9. I was shattered! Seemingly, once the Onc gets clearance about the bloods, he phones through to have chemo taken "off-hold", it's made up offsite then couriered to hospital. This all takes 3 hours. By the time I got seen, delays at chemo suite were 2.5 hours
Good luck to us all.
xx
Like I said Grannyscouse, it's not for everyone. Personally I can justify anything that makes me feel better, especially the second time round. I'm on 5th line chemo now, I doubt I'll be needing to save for my retirement at this rate and I (sadly) have no children to support so it's all about me
Just about to join you ladies on Eribulin, Tax hasn't worked which is obviously a shame but I'm secretly glad I don't have to have any more of that horrid drug!
Hello ladies
Any scans planned? Sorry to hear ur hairs pretty much gone. Mine is thinning gradually+ I'm hoping it sticks around until the end of cycle 3 when I'm scanned yet again! X
BUT fab news about the holiday to Thailand!! Have a brilliant time X
grannyscouse- glad to hear ur coping well with the treatment
Francesca- so sorry to hear the tax hasn't worked. That's crap news
tillycat- hopeyou are doing ok x
It's my 2yr cancer anniversary today. So glad to still be here + feeling ok. Hoping for lots more quality time with my family...
Love to all xx
Hi all
Chemoqueen, how very rude i am am, i haven't said welcome to this thread. I hope that you are doing ok and Eribulin is treating you kindly
I was waiting for the results of my most recent blood tests before posting again, despite what my oncologist says i like to have few numbers to show me that things are getting better. A scan would be nice but he seems to think i should wait until i have 6 cycles before i do that (i have just finished cycle 4)
Anyway Tumour markers are going down - I know they don't mean a lot but trends can be indicators for some people and they generally seem to be so for me. Probably more important all my liver funtion tests are improving each cycle and, although i don't feel confident saying it because my mood changes from day to day, i do think i am feeling better.
Went out to a dinner party on Sat and didn't leave til gone midnight, took my very tipsy husband home and tucked him up in bed! that hasn't happened for many months, usually we have to leave by 9 cos i am falling asleep and my hubby doesn't have a drink because he lives in fear of having to drive me to A&E. bit of a result all round I think
I got a very nice wig last week from Trendco in London. I chose a human hair one (it cost me about £270) then had it cut quite short by my hairdresser. My daughters both say they love it and i have to say that i find it much more comfortable/less hot than the synthetic ones i tried, and failed, to wear last time when i had tax. Think i may change my picture to one of me wearing it -watch this space
i even got chatted up in starbucks while i was waiting for a friend (and wearing my new wig to show it off to her). He was about 75 and probably sufferring from dementia- but who am i to be choosy!!
mx
Hi everyone
Hope you're all doing well. Gingerbud, hope your holiday went well and you've come back refreshed and ready to continue the fight the good fight.
I finished cycle 3 last week. The same day, started with a stinking cold. Felt not too bad the following day, then voice went. I was in bed for 6 days!!! Absolutely no energy. I'm not sure if this was partly due to the cold weather (at least I was warm in bed and saved on heating costs!) but here I am on my week off and haven't any energy to enjoy myself. I'm just hoping stinking cold was due to the time of year and not the chemo.
The good news is I haven't lost all my hair. I do tell myself any others that I now have bum-fluff but hey, better some than none.
Any road up, hopefully I'll enjoy the Folk Awards at the Lowry Centre tomorrow if I get there.
Enjoy whatever treats you have in store for yourselves ...
Good luck to us all.
xx
Hello ladies
Cant help but think my bones gablve now joined in the party as I'm popping painkillers by the min + it's just not like me. I'm having alot of pain in right side so I'm v.worried about my liver bt I'm hoping Its my ribs (comes to something when you are actually 'hoping' for a bone mets dx!). Apparently my bloods aren't indicating any decline in liver function so I'm praying the liver mets haven't progressed.
Just bumping our thread up to say hi + to see how you all are. Hope everyone is feeling as well as can be + eribulin is working wonders for you all! Anyone had any scans/ feedback recently? I've got my mid-treatment scan in the next frtnight + I'm really nervous if I'm honest. Breathing defo no better + cough probably worse than when I started. Nodes still prominent + various worrying aches and pains
Sorry if I sound a bit gloomy but it's anxious times as I'm sure u ladies understand.
Looking forward to hearing how you all are
tina xx
Hi all
Well just read gingerbuds post and it is really similar to how I have been feeling
Maybe it is how eribulin works ? Oh I do hope so!!
I have been getting lots of bone pain, feel very short of breath and now have a cough (which I didn't before) my liver function gets better then worse, then better again - no one seems to be willing to commit to whether it is working, my onc keeps saying that I have to decide how I feel and if it is affecting my quality of life too much then I should stop.
I have asked for a ct scan and he has agreed. I really think that I need to have a bit of information before I start making decisions regarding my treatment plan (I would also quite like to have a medical degree and a bit more experience in oncology but he doesn't seem to be offering me that!)
Mx
Hello ladies
Just about to start Day 8 of C4 tomorrow. Got over stinking cold (and cough, thanks to Codeine Linctus). Didn't think cough was connected to chemo but on the other hand ...
Fatigue is my biggest problem. I'm just glad I don't have youngsters to take care of like a few of you have. I don't know how I'd cope otherwise.
Oh, and I've had some bone pain in upper and lower legs. Not joints, just the bones. Anyone else had similar?
Seemingly I'm having scan after C6. Let us know how you get on.
Good luck to us all.
M xx
Chemo didn't happen on the Tuesday. Suite was so behind that they asked if I could go back on the Wednesday which suited me because I was so exhausted on the Tuesday that I couldn't face waiting around for at least 5 hours after I'd seen the onc.
Was up most of last night with a hacking cough. Ended up trying to sleep sitting up. Oh, and weak bladder. Had to change the sheets in the middle of the night!!!
I decided to go back on the steroids this time to see if I have a bit more energy. Not happened yet as I've been in bed all day because I just felt I wanted the comfort and security of my own bed. I got up a few times to brew up etc but didn't actually come downstairs until it went dark and I could shut the world out!!!
My voice comes and goes. I don't know if this is a throwback from when I had a cold and cough a couple of weeks ago, or whether it's the chemo. But it's developed a kind of squeak to it.
So, to sum up: pain in bones (not joints), cough resulting in weak bladder, squeaky voice, plus more fatigue. Sorry not to be more positive but want to tell it how it is so that some of you may relate to some of my symptoms.
Good luck to us all.
M xx
Hi grannyscouse
Is not easy Is it? This is just a quick post to let u know I'm having similar symptoms. I'm bloody shattered, no energy for anything. Whenever I do anything minor like showering, putting washing away, I get really breathless + worn out. My cough also results in 'tena lady moments', as I like to call them. I have to cough with such force to get at the tickle/ wheeze, that my bladder really doesn't stand a chance! I'm still having the scary irregular heart symptom, not to mention the suspected mini stroke I had after Tuesdays chemo...
sorry to hear ur struggling a bit with the eribulin
I'm having full scans on tues- including bone scan + brain ct scan. Pretty anxious about them coz feeling quite rubbish so expecting bad news. Hope I'm wrong. Feeling low at the mo too, struggling a bit but I guess that's to be expected given the shitty hand I've been dealt.
Fingers crossed 4us all
love tina xx
Ps I'm also having bone pain- lower back, hip, collarbone and ribs- hence thebone scan. Can't help but think my bones have now joined in the party
x