Eribulin

[nicky08]

Bumping up for Mary D

[Steris]

Thanks Smartie, I still had 1.5 more cycles. Wishing you the best of luck on this chemo x

[Smartie]

Thanks for the info Chris and sorry to hear it's no longer working for you. I had Paclitaxol in 2013 but not weekly, I had it in a 3 weekly cycle. I did find it quite hard and my white cells were affected so I had the Neulasta injection afterwards which I think my onc is going to prescribe with the Eribulin.
It is such a shame it's being removed from the drugs list, one more option taken away....
I hope you have success with the new regime and less side effects too.
Best wishes
Smartie x

[Steris]

Hi Smartie,

Just returned from my 11th cycle if eribulin. I too was put on it because I had further spread to liver. I also had mets in pleura, lungs, various places on spine and pelvis. Lastest scan results where everything is stable apart from my liver unfortunately. It has another lesion and has grown again which is the second scan now. Oncologist isn't overly concerned as it's 8mm but don't know about the new lesion.
She wants me try weekly pacitaxol if the next scan shows more progression in liver. It is a shame as everything else remains stable😩
Unfortunately this chemo is really hard for fatigue mines is awful and I spent too much time asleep. It's bad on your white blood count too. I have to take 3 Filigrastin injections to keep my neutrophils up otherwise I could cope with this chemo.
I felt great the first cycle but my white count when down to 1 which was too low then I got a uti. Oncologist said it was a common se and put me on the injections. They are really high and then the plummet like a stone but at least it's kept me stable for the past 7 months.

I hope once you start it gives you a long period if stability and it's kinder on the se than me.

Take care
Love
Chris x x x x

It's such a shame they've taken this off the drug fund from this March 😞

[mrsblue]

Hi folks, I had 7 cycles of eribulin in 2013 (thanks to Cancer Drugs Fund).  Fatigue - significantly worse for me than EC, weekly Taxol, or capecitabine.  I did recover from fatigue, took me about 3 months after I finished eribulin.  My hospital doesn't give steroids for eribulin, by the way.  And I lost all my hair.

[Smartie]

Hi Chris, I'm about to start Eribulin, can I ask how long it's been effective for you? This will be my third IV chemo interspersed with Capecitabine for the last 14 months. Mine has just spread to my liver so hoping the new chemo will work. I am concerned about my blood count as the other chemos really affected it and my white count is only 2.4 now after the last cycle of Cape and my HB 93. Although I did have a transfusion of two units earlier this week to try and boost things a bit before I start. Not looking forward to the chemo I have to say but really have no other options at this stage.
Thanks for the tip about thickening shampoo I might give it a whirl having lost my hair twice already it would be nice to keep it!
Good luck with your scan & fingers crossed for positive results
Smartie x

[Steris]

Hi ladies,

Well I'm still on Eribulin although I think it will be coming to an end soon. It's kept everything stable apart from my liver which is I have a new lesion and the other one is growing very slowly.

My main problems have been low white blood count, I had a slight reduction in the chemo and have three Filigrastin injections after every cycle.

The fatigue has been awful, I don't mind the odd duvet day but the last cycle has been far too many. The nausea has been up and down; I wear the travel sickness bands which have really helped me and better than extra anti sickness tablets.

My hair has thinned but seems to get getting thicker recently and I haven't had to wear a wig/scarves. I use Boots own thickening shampoo and leave on conditioner. Don't know if it's help but it's clung on.

I'm waiting for a scan in mid Feb and see oncologist on the 5th March.

I hope you ladies are having minimal se and it's works wonders. I think it's a good chemo but has been hard going. I feel really sad that it's been taken off the drug fund and it's one less chemo for other ladies to try.

Love n hugs
Chris x x x

[DaniGirl]

Hello ladies

Thank you for your invaluable comments regarding this chemo.  I've had 2 infusions so far and the next being Monday 8th. 

Fatigue is definitely No.1 se, followed by strange taste in mouth, muschle ache and sometimes headaches.

My hair is still intact although I've only just started treatment and I know there's 50% chance of keeping it so I'm staying positive about it.  The main thing is that I'm feeling well generally and the lungs are behaving as they're not filling up with fluid as they did before chemo.  Still not so quick climbing stairs but hopefully this is going to get better too. 

I do hope all you ladies on this chemo are keeping well and it's doing the trick.

Love to all

Dani XX

[Blondie20]

Hi Dani
I can't comment on the steroids as I've had the Erubulin without it. I've just finished my 4th round of chemo and for me it is feeling very tired and fluey for 3-4 days after, this has gradually got worse the more cycles I have had. My hair has also thinned to the point where I have to wear a wig but otherwise I've been fit and well and carried on with life and work as normal.
Good luck with your treatment and let us know how you get on.
Love Blondie xxx

[EJ81]

Hi Dani,
My main advice would be to pace yourself. Boring I know but I kept overdoing it on the days I felt well and then felt rubbish afterwards.
I couldn't say about the steroids although for me I sometimes felt like they were the hardest part. Make sure they give you something in case they make you constipated - not nice to discuss I know but I wish I had, and you did ask for tips!! Also they made me really really hungry so get some carbs in!
Good luck xxxx

[DaniGirl]

Hi ladies

I'm joining you as I start Eribulin on Tuesday and feeling anxious even though I know what to to expect from previous iv chemo. 

I have mets in lining of the lung and also mets to sternum and pelvic joints.  Are there any side effects that are particularly common that I should look out for?  Is it really necessary for me to take steroids?? 

Any tips I would gratefully welcome.

Hope everyone is enjoying the day so far.

Love and light

Dani X

[Blondie20]

Hi guys, I've already spoke to them. Things have changed since I last needed a wig and now if you are not on benefits then you have to pay a contribution of approx £65 and this is only for an acrylic wig. They will not off set the costs for a human hair wig. Off wig shopping on Monday with my mum x

[2catlady]

Hi,Nicky,I'm sure you still get an NHS voucher for a wig regardless if you are working or not. Have a google,or ring Bcc helpline or your BCN . You don't want to be forking out money if you can get some help.
Huge hugs,Helen xxxx

[EJ81]

I'm on sick leave from work but not claiming any benefits. I was referred by my oncology unit and wasn't asked anything about benefits or payment. Maybe check with your BC nurse?

[nicky08]

Hi

Having just had an appointment with the 'wig lady' at our local hospital it seems you can't get an NHS voucher or wig unless you are on certain benefits.  I know when I looked into it last time (6 years ago) you could but maybe the rules have changed?  If anyone knows any different maybe they can add to this as I'm about to get one and don't want to pay for something I'd rather not have - or want - but need to hide behind!

Nicky 

[FMJT60]

Blonde, it doesn't matter whether or hot you're working. You should get a voucher from your oncology unit worth about £85 pound roughly to put towards a wig. It's an NHS voucher xx

[June_BCC]

Hello

Here is a link to the publication that EJ81 mentioned http://www2.breastcancercare.org.uk/publications/treatment-side-effects/breast-cancer-hair-loss-bcc5...

Best wishes

June, moderator

[EJ81]

There is a booklet on here called 'breast cancer and hair loss' that has a couple of examples in it. There are some videos on YouTube too - I think I googled 'how to tie a headscarf- chemo' or similar. Its worth finding a beanie or something similar to sleep in too as, although I tend not to cover up in the daytime, it can get chilly at night. Good luck finding a decent wig. Make sure you try on some wacky ones too just for fun! Xxx

[Blondie20]

Thanks EJ. Woke up this morning to a pillow full of hair, wig shopping it is, does anyone have any different ways to do a headscarf? xxx

[EJ81]

Glad you're feeling OK. I only managed the diary for the first couple of days then forgot all about it as I was feeling OK and had better things to do! Kids are a great distraction aren't they? I have a two year old to keep me busy, can't imagine what its like with 3! We wanted more but probably won't now - got a great one first time though so I can't complain! That's rubbish about the wig I don't think I had to give any financial circumstances to get mine. I'm not that impressed with it to be honest as they didn't have anything like my own hair so I'm not sure I'll wear it anyway. If you go down the headscarf route it helps to have some bulk at the front to avoid the pirate/fortune teller look!!

[Blondie20]

Hi guys, had my 2nd cycle of Eribulin yesterday and so far so good, think this is because I have added the anti-sickness tablets into my morning tablet routine. Hair still ok, but not washed it since Saturday as trying to hold onto it! Just found out that because I'm still working I'm not entitled to a free wig I have to pay £66 towards an acrylic one and because I'm blonde they don't look great, so another expense if I lose my hair!
Glad u feeling better EJ81. A diary is a good idea, but with a full time job and 3 kids I just don't get time. I'd much rather come on here and have a chat.
Take care too xx

[EJ81]

Hi Yvonne,

Just seen this. I hope you are feeling better now. I'm having my second EC on Tuesday and found it was the first few days when I felt a bit 'off' and have since felt fine. My hair started to go about two and a half weeks in so I got my husband to shave my head - I actually quite like it! Someone told me it is worth keeping a chemo diary so you can predict when your bad days might be each time and work round them. 

Take care xx

[Desi-2]

Hi Yvonne hope you continue to cope well with this. I've no experience of chemo yet but it is looming ever closer, it's good to read of others coping with it as it's all a bit scary isn't it.
Best wishes
Tracy xx

[Blondie20]

Thanks guys, had my 1st Eribulin yesterday and so far not too bad. I've had slight nausea this morning which eased off and this evening flu like symptoms and a headache for which I've taken some painkillers. A little tired but have been to work all day so I'm writing this whilst laid in bed x

[2catlady]

Hi,Yvonne,so sorry you are joining us. I can't give you any advice on your next treatment but one of the lovely ladies should be along soon.
We all tend to hang out on the bone mets thread regardless of mets. We are a very friendly ,supportive bunch. We even have a laugh usually at my cra@@y hospital . We are there for advice,support,hugs ,if you need to let of steam.
Don't feel alone someone is always there to say hello and make sure we are all okay.
Sending you huge cyber hugs,Helen xxxxxxxxx

[Jo_BCC]

Hi Yvonne

Welcome to the BCC discussion forums where I am sure you will get lots of good, honest support from the many informed users of this site.

BCC have a number of publications aimed at those with a secondary diagnosis which you might find helpful, I have put you the link to one of them below:

http://www2.breastcancercare.org.uk/publications/about-breast-cancer-care/support-people-living-seco...

Also, you might find more support if you post in the Secondaries forum, again I've put you the link below:

http://forum.breastcancercare.org.uk/t5/I-have-secondary-breast-cancer/ct-p/secondary_breast_cancer

I hope you find the support and information you are looking for from these forums.  Take care,

Jo, Moderator

[Blondie20]

Hi guys, just joined this forum and not sure what I'm doing but here goes.....

Starting Eribulin on Tuesday and just want to know how you all got on ie side effects, hair loss, how long it worked for you.

I have mets in the ribs, pelvis, spine and liver and just finished a course of capecitabine.

Much help would be appreciated.

Thanks

Yvonne x

[Steris]

Yes it isn't as easy as you think on the kindle, I'm using mine at the moment. I do hope that I don't have any problems from the port. Thanks for thinking of me.

I'm having my second dose today and being scanned on rtf he 29th to see how I'm getting on. I always feel.Very nervous as the worse part is the dreaded wait, a place no one wants to be in.

My hair is still falling out and eye lashes thinning.  I'm feeling tired and sleep pattern is erratic to say the least. I cut down on the steroids last time which was better for me. Just hoping this is working and zapping the huggers into oblivion.  Oh well I can hope.

Good . Luck everyone who waiti

ng for result and I hope no matter what treatment you're on it working.

Love n hugs

Chris xxx

[funnyface]

Sorry for mistakes. Missed them. Big fingers on my kindle fire!

[funnyface]

Chris, I sed yoh had a portacath placement. I have had my pottacath since March 2006! I hope yours lasts as long! Funnyface

[2catlady]

Hi,Chris,glad every thing went okay.
Huge hugs and take care,Helen xxxxxx

[Steris]

Hi thanks for your replies. Portacath went fine I had it under sedation and no ill effects. Feel like I have a third nipple and it's felt strange feeling it but I'm getting use to it now.
Restarted Eribulin last Monday as neutrophils low. So fingers crossed that everything's ok for the next dose on Monday.

Hope you ladies are.keeping well.

Love
Chris xxx

[2catlady]

Hi,Chris,hope your portacath fitting went okay and wasn't scary.
Huge hugs,Helen xxxxxxxx

[mrsblue]

I had 7 cycles of eribulin in 2013.  Tiredness, cumulative (my hospital doesn't prescribe steroids with this chemo).  It took me a couple of months to recover from the chemo fatigue.  Some peripheral neuropathy, but I'd had other chemo treatments before.  And I lost my hair 😞 

But I had no nausea or digestive problems.

[Steris]

Thanks Helen & Sue, yes I definitely think its the steroids and I'll ask at my next assessment if I can reduce the dose.

I know there's a eribulin thread on here but can anyone tell me if they've lost their hair due to eribulin?
Thanks in advance ladues, I now feel.a little nervous about having the portacath fitted tomorrow.

Love n hugs,
Chris xxx

[SueCheshire]

The steroids kept me awake, I had my reduced from 8mg to 4mg.in the anti sickness pre mix,. I got a bit more sleep then. Worse side effects were tiredness and heart burn..

Love
Sue xx

[2catlady]

Hi,Chris,I can't offer you any advice apart from it may be the steroids as my friend was gardening at 5:00am with the steroids and is hyper at the moment. Yes,the anti sickness pills can make you feel slightly out of it.
Hope someone can help with your question.
Hope it all goes well for you,huge hugs ,Helen xxxxxxxxxx

[Steris]

Hi ladies,

I was just wondering if anyone else is on Eribulin and what the side effects are?  I've just completed the first two injections and as you can see sleep seems to be lost on me tonight or maybe it's the steriods.  I don't feel too bad on it and last week I had a reaction to the anti sickness tablets so felt totally out of it. I'm hoping this is a blip.

Looking forward to hearing from you all.

Love

Chris x x x