Any body on Erubilin ? Tips welcome.

[EveS]

Hi there. I'm on my 5th cycle of erbium in and feeling more tired as the months go on, but I can cope with that as long as it is doing what it's meant to be doing.

[Rose_Red]

Th thread should have said - Bone Mets- please join in 

[Rose_Red]

Hi Kimi

my hair started falling out five days after my day one cycle one dose of Erubilin. My neutrophils were 0.1 and I didn't get my day 8 dose. Instead my Onc reduced the dose by 20% and I get day one dose only followed by five daily G-CSF injections starting on day three of the 21 day cycle. This has worked well and I have just had cycle 7. My latest CT scan showed everything stable. You may want to go to the Bone Metz thread as this is where most of the wonderful forum ladies post, not all have bone lesions and not all are on Eribulin but you will get loads of support. Rosie x

[Homer]

Thought i'd join in here,

had my 1st cycle of Eribulin

this week is my week off, hair started falling at the weekend and is worse everyday

saw my oncologist on monday who took bloods and told me my nertrophils are down to 0.8,

back tomorrow for  CT scan, my onc told me he wants a baseline scan

kimi x

[Jo_BCC]

Hi Claire

Good to see you posting here again and that your treatment is working well for you.  Thanks for sharing your experiences as I am sure others treading a similar path will be glad to know about success rates.

Take care,

Jo, Moderator

[myfanwy18]

Hello everyone,

I haven't been on this site for a while.  I have been on this drug since January and am pleased to say it seems to  be working for me.  Everything stable and no new areas of cancer.  I don't have any side effects really apart from being a bit tired a couple of days after treatment.

Just thought I let you know.

Claire

[kittyw]

Hello all , hope evryone is as well as can be. Erubilin did not slow or stop the growth of the mets in my lung unfortunatley. Had a break for a month [ hadn't realised how crappy i had been feeling while on chemo ] as i have been one one chemo or another for past 18 months. Requested stereoyactic radiotherapy but told as i have more tha 5 sites is is not an option. Onc has suggested a hefty dose of radiotherapy to largest tumour in my lung to try and stop or slow it in its track. She however advises the side effects/complications may be quite severe due to the position near my oesophagus. Going for it anyway next thursday so fingers crossed. Kitty x

[Danigirl501]

Hi there

I was on Eribulin with minimal SE's and worked for 7 months but then pleural effusion came back so now on Vinorubeline.  I think that with every individual chemo works differently so what works for one may not work for another.

Good look with with this one. 

Best wishes and take care.

Dani X

[stresshead]

Hi caza, hope you are now feeling a little better. How are you doing on eribulin...i'm not convinced its working for me and i'm getting very scared that i'm running out of options. Where are your mets? mine are skin. x

[caza1978]

You sound just like me Stresshead. I am ER+ too and i also was on Letrozole which didn't really work. I then went on Capecitabine and had horrific side effects ( Coronary Arterial Spasm) which could have led to a heart attack. I was taken off it and i have now had my 2nd Eribulin. I can't stay awake either but I'm also on Zomorph as i have a deposit (as they call it) in my rib, I'm having a blast of radiotherapy on it, hopefully next week then i can come iff the awful Zomorph. I seem to have quite a few of the side effects and one of them us no appetite so i feel i havent eaten much at all but still managed to put 3 pound on 😡 grrr. Wishing you well x

[caza1978]

Hi Stresshead.....i started Eribulin in June and my onc said i was in luck because it wouldn't be available after that. I would have thought that if you were having a break from it you would still be classed as being on it, if you know what i mean. I think it's just if any new patient cones along after the deadline then it can't be prescribed. I would ask your onc though to be sure. Sending well wishes x

[Barton]

Hello Smartie, well done! I'm so pleased for you! Long may it continue. Hugs, Barton.x

[2catlady]

Oh Smartie,that's FANTASTIC news,you go girl.
Yes,a break will do you the world of good ,you get a holiday booked. I'm soooooo happy for you.
Massive hugs,Helen xxxxxx

[Smartie]

Hi Spongey ladies,
Helen hope your scan went ok today.
I had my scan the week before last and have just had the results, which were amazing, so much better than I expected.
All tumours have reduced in size including the liver and some of the nodes in my chest and abdomen have disappeared altogether! Can't quite believe it has been this effective but there you go, Eribulin seems to be a goody.
I have had 7 cycles (2nd part of number 7 tomorrow) after which I am taking a break, my onc says that to continue on indefinitely will deplete my bone marrow too much. I will be off it until Sept when I will have a scan to see what's happening. I do know there is a distinct possibility of things progressing whilst I am off treatment but need my body to have a bit of a chance to recover and as the cancer hasn't become resistant to this drug I can restart it when needed.
Looking forward to getting away on holiday and out of the regime of treatment, just trying to live a bit normally for once.
I hope that your results Helen are as positive and for all you other ladies too, hoping my news will give some inspiration to anyone suffering with side effects.
Lots of love
Smartie x

[springsummer]

what are you like!  x

[2catlady]

Thank you,Spring,xxxx
Pop over to the cafe Pimms is being served. We are on the sun loungers,I'll grab one for you.
Hugs,Helen xx

[springsummer]

hi lovely catlady. good luck on monday!  i'll be scanning the threads for news x

[2catlady]

Good morning sponge bob ladies,how are we all doing. It's been very quiet on here. I get my CT on Monday ,yikes! Get results the following week as you guessed it ,he's on holiday again,grrrrrrr.
I've got a couple of numb toes?! Not sure if it's SE or SCC playing up. Hopefully we will get to bottom of pain.
Hugs,Helen xxxx

[Orse1970]

Hi Helen,

Thanks for the tip about the pots.., I will try that... ain't got any pots left in my brain to remember things.... And my ex wasn't with me hence the total confusion.....,
I'm only 45 feel like my brain is 70!!!

C xx

[2catlady]

Corinne, I've missed second cycles twice and I'm sure first dose has kicked Cs butt.

I have four little pots that I put days meds in as I can never remember if I've taken them or not.
Hugs,Helen xxx

[Orse1970]

Hi Helen

I'm good thank you... Had my first dose of carbo/gemzar and have been very tired... Tho I think that maybe something to do with me messing my meds up... I got the dosage of steroids wrong and was taking one three times a day instead of two three times a day... Can you get chemo brain this early?!? Lol...

Unfortunately I gave been to Hosp today for day 8 - infusion of gemzar but my bloods are not good enough... So chemo missed... Let's hope it's because the chemo from last week is still smashing Those aliens into outer space...

Hope you and everyone else is good..,

C xx

[2catlady]

Good morning ,sponge bobs,how is every one doing?

Dr on chemo ward gave me some steroids as I was feeling dreadful on week off too. Certainly not ready to start cycle again. So hopefully they will help.

Corinne,how are you doing? I take diazapam too at night as it helps me sleep a bit.

SS,I would say you probably can go back on it. As its sort of the same when treatment is deferred if bloods are dodgy. But ask your onc to confirm.

I totally agree about the extra stress all of this causes and oncs don't realise this . I do think some see us as a NHS number.
Huge hugs,Helen xxxxx

[Carrot]

Portacaths are brilliant, getting it put in really isn't much to worry about - a pleasant woozy state (and I slept afterwards cos of late night night before). They work like a dream. Mine doesn't always give up blood but always lets the drug in, and it's not nearly as bad giving blood from the arm. It really does make life easier. I love it! Carrot

[Carrot]

I was told 2-3 years, 3 years ago. I decided I didn't like that and was going to live longer. I do think it helps to be a bit pig headed! Bumpkin - do you know what the other drugs are the onco has in his cupboard for you? I did get mine to give me a list (wanted to see how long it was!) - have had 'em all apart from the vinorelibine now, but hopefully some new ones soon. Carrot x

[2catlady]

Hi,ladies,if you are already on Eribulin they can't take it off you. Xx

[Glo]

I believe once you get funding from the CDF it can't be withdrawn

[stresshead]

Hi ladies...I didn't realise eubilin was only available till July and now i'm panicking. I have been put on it but onc says can only have 10 cycles as body wont cope any longer, whichi know is not the case as some people are on it for longer. What worries me is that even if it works but he says I need to have a break, will I be able to go back on it. No one understands all the additional stress these things cause do they? as if we don't have enough to cope with.

[Orse1970]

Hi Helen...

Thank for the advice , but I was literally begging herm, but she wouldn't budge... Just can't saying it's the rules,,,, and I don't meet them.,.,,
Like I said before going to the christe soon so gonna ask them their advice...

C xx

[2catlady]

Hi,orse,I've only had Capercitabine chemo and my onc put me on Eribulin my first IV chemo.
I'd ask again for it before it goes off list as you can keep other treatments for later on.
Your onc can not predict how long you have ,no one can. So knickers to him.
Hugs,Helen

[Orse1970]

Hi bumpkin

Thanks for replying again with your kind calming words..... U always seem to reply to my panicked posts!!!

I just worry so much because of being tnbc and there being less treatment options for us...
I've never even heard of vinorelbine???

I'm still quite new to this secondary business, made it to 4 yrs 3 mths after primary and thought I was very lucky..
I went and saw my gp Friday and she has given me more diazepam but not sure what effect it's having at mo.. Lol

My oncologist did say I would be lucky to make it to 2yrs, but my husband like you has said she has no exact way of knowing... But I just think he is being hopeful and trying to keep my spirits up!!! Either that or doing his ostrich impression again!!!!' Lol

We have had loads of probs with the Hosp and previous oncologists.. and my confidence is rock bottom.. I have asked for a referral to the Christie... Hope they are better..

I hope you you doing well, staying stable and coping with all the other crap which goes with this beast!!

Thank you again....

Corinne xxx

[Bumpkin]

Hi Orse
Eribulin is on the CDF until end of July. If your Gem/carbo treatment works, then you would stay on it. If not, then you could switch to Eribulin before then. But, your onc can't tell you if or how long it would work for you. We each react differently to each chemo. And aside from Eribulin, there are many other drugs available. The CDF has removed it because they don't think it offered much more than vinorelbine overall. It did seem more beneficial to triple neg ladies like us, but my onc says he has a number of options for me after Eribulin and this is my fifth drug in nearly three years. You know, when we ask, oncs will always say 2 or so years as a life expectancy. I was told that last year. It is based on stats which by definition are from old data and old treatments. The truth is none of us knows. I have read many stats which ladies on this forum have defied by a long way because they are still here long after the stats suggested they would be. My oncologist says he has no way of knowing what will happen to anyone, and can only answer based on averages and stats which is why he hates being asked the question. The important thing is to focus one what you can control and so I very much hope your GP is helping you, for example with something to help your anxiety. I have diazepam to keep me calm. I have used sertraline in the past. Other options exist which won't interfere with everyday life such as driving. Take care of yourself. Bumpkin x

[Orse1970]

Hi ladies

I just read the update from 2catlady saying that Erubilin is being taken off the CDF.. I've just been denied this drug as I have only have FECT for my primary and cape for reoccurence... Need two lines of Chemo after primary... I now have skin mets, infected nodes in axillia and metinsal (sp) and oncologist has put me on carbo/gem at present but says will move me to Erubilin next giving iving me around 2 yrs life expectancy.. I take it this means I will now never get this drug? And that my life has been shortened even further..,,
I'm so sacred now... Mind whizzing all over the place!!!

As if this disease isn't hard enough!!!

C xx

[nicky08]

Hi stress head
I've had a portacath for about 10 months and believe me there is nothing to it and it is sooooo much easier and quicker to get treatment. Yes, a needle goes into the diaphragm of the portacath but I haven't felt a thing but other ladies have had a local anaesthetic gel to put on if needed. My op was done under LA, very quick, about 20 mins, some observation time in hospital after then free to go. A bit of bruising after but thats not surprising. There is no flushing needed unless it's not being used then it needs a quick saline flush every 3 to 4 weeks. My portacath can be seen as a lump above my right breast but as I'm not that big there there's not much to hide it, I just dress so necklines hide it, others have had theirs in slightly different positions so it's up to the hospital you go to. The nurses on my chemo unit love them! It's much easier for them to use and as far as I'm concerned it reduces treatment time by at least 30 mins as there's no faffing around with hot water or heat pads to play hunt the vein and not only was that painful it was very distressing for me before I had the port fitted. I'd say go for it you'll wonder why you haven't had one before!
Nicky x

[stresshead]

OMG Rosie, no one has mentioned anything going in through my neck...I was told it would be just above my reconstruction on my chest. No one has really mentioned the portacath and others have said although good they still had to have a needle put in it every time so really no better?? maybe i'll have to wait till I see the anaesthetist as I am told they do it.

[Rose_Red]

StressheadI do not have a portacath but I do have a line in my chest as my veins have had enough in my one good arm, they did try to put a PICC line in my arm but that proved impossible. It is so much easier having blood taken and receiving chemo through the line. The only downside is the line has to be flushed once a week, this is done at the hospital on chemo day and by a home visit from the district nurse on the following two weeks. I was knocked out whilst it was done and the entry point in my neck was a little sore for a couple of days afterwards. I hope this helps. Rosie

[2catlady]

Hi,sponge bobs, thanks Barton xx

I can't believe Eribulin is coming off CDF😡 if you're triple negative we don't have many options available to us. I'm soooo saddened and angered by this news.
Hugs,Helen xxxx

[Barton]

Hello Helen and stresshead. Helen, the line you are referring to is a Portacath I believe. I had one for my original IV chemo in 2011 and it was brilliant. Stresshead, they put it in as a day case, usually just under local anaesthetic (but I believe they will do a full one if you insist). It was sore for a few days but after that, as Helen says, its just a small needle through the skin. So much easier. I had prepared myself for the Portacath insertion (there are different ones with different names) by watching on Youtube (I watch all the operations etc on tv - doesn't bother me), so I knew more or less what to expect. If your hospital offers them its well worth going for - none of the faff of having to keep it dry all the time once the insertion site has healed. Good luck. Hugs. Barton.x

[2catlady]

Hi,Red,Eribulin is supposed to be a good chemo for TNBC and it works on the other bc too.

Hi,SH,what about the line that's hidden under skin ( not sure which one it is) the nurse has to just puncture skin and that's it. I haven't got any lines in yet.
We are all sending angry eyes to your hubby too.
Huge hugs,Helen xxxxxxx

[stresshead]

Thanks for that Rose. Just had my 2nd part of second cycle. Ended up in tears..stress of delayed blood tests and my husband saying he doesn't want me to have a line put in even though all the injections etc are stressing me out. The nursewas brilliant tho'..she encouraged me to go ahead and also said people do stay on erubilin indefinitely....want to believe her but I suppose at the end of the day its the oncologists call. Will just have to cross that bridge when we get there. x

[Rose_Red]

Hi Stresshead I am sorry you have been on a downer, we've all been there and know how you feel. Some ladies are TNBC but I am ER8/PR5 and HER2 neg, I too had Letrozole which didn't work for me. I have just had 4th cycle of Eribulin, I am on a reduced dose and only having the day 1 dose which my body is tolerating. Fatique seems to be main SE on this chemo and I have to make sure I pace myself which makes life easier. Rosie

[stresshead]

good morning my fellow 'spongers' and welcome to Stringbean and any other newbies..hope you are all as well as can be. Havent posted for a while as been on a 'downer' but feel a little better now i've caught up on your news. Am due to have part 2 of cycle 2 tomorrow and havent been too bad so far..apart from fatigue. I think i may have been overdoiong it though...lots of work in the garden...and think this has contributed to my weepiness and low mood. Also, when i started on erubilin my bcn said you could stay on it indefinitely as long as you could stand it..now my onc has said i can only have 10 cycles..which is exactly what he said about cape!!..didnt seem very forthcoming with any alternatives either which has depressed me further. So far i seem to have escaped a lot of SE's..am having steroids with the chemo and extra dexamethasone. I also have Emend for sickness...i had it with FEC too but you have to have your blood tests first then the tablet then wait an hour before chemo which is a pain but worth it, i think. Maybe of some use to those of you really sruggling with nausea.

Can i ask, i get the impression a lot of you ladies are TNBC?? and wondered if erubilin is mainly for that. I ask because i am er+ but the hormone tablets, at least the last one letrozole, didnt seem to work at all as 6 weeks after finishing cape (10 cycles, not necessarily because it wasnt working) and tarting on letrozole, my mets were back and the cancer was back in my reconstruction.

Right, been up since 6am....forgot the sleepless SE!!...so now going to have my clexane injection (for pulmonary emboliosm...yet another complication of this b*** disease and try to have a better day...if i can stay awake. Love to allxx

[2catlady]

Hi,string bean,welcome to the forum. You will get loads of support ,advice,hugs on here as the ladies are fantastic. They pick up up then your down and celebrate the ups.

Hopefully you won't lose your hair on Eribulin and the main SE is the fatigue.

We tend to all hang our on the bone mets thread as its easier to keep an eye on every one and be there for when you need any help advice or hugs.
Huge hugs and go kick Cs butt,Helen xxxxxx

[Smartie]

Hi Stringbean, I know exactly how you feel, over the last 3 years I have had FEC, Abraxane (Paclitaxol), Capecitabine and now Eribulin. I did waver before starting this treatment as was fed up with all the drugs, appointments, hair loss etc but like Rose Red the fighter in me won, I couldn't give up yet. My scan after 3 cycles showed it was working so that makes it easier, I have another scan in a couple of weeks after 6 cycles so we will see what happens then.
Stay strong.
Smartie x

[Rose_Red]

Stringbean
I have stood in your shoes, I said that I did not know whether I could take yet another chemo but when it came to it the fighter in me won. My family have always said I am a stubborn so and so. Please feel free to private message me anytime. Rosie

[stringbean]

Thank you so much for replying Rosie _Red it means so much.  There is a terrible rawness to everything at the moment but your reply was so encouraging.  It is brilliant that the drug is working for you - well done on your perseverance.  You are an inspiration.  Thank you for getting in touch - you have made me want to keep up the fight.  I hope to be able to talk to you again.  

[stringbean]

Hello

I'm new on the forum today.  I just fell at last hurdle of starting the new Finesse trial as my heart scan was not good enough.  Terrible blow - in need of a forum hug I think.  I have been offered Vinorelbine or Erubulin but having been through Taxol and cape cytabine keep thinking about qulaity of life..  Giving up on treamtent is a hard decision to make but one I know I have to face if it means more sickness and hair loss.  But then the fighter in me refuses to give up.  I would love somebody to reply - can't keep loading this on my children.

[Rose_Red]

Hi Stringbean
Sorry to hear you are unable to start the new Finesse trial - this journey is such a roller coaster. I am sending cyber hugs to you. I have had Fec-T, Paclitaxol, Capcetabine and am now on Eribulin, over the last month I have had a pretty rough time, due to a heavy cough and cold which would not budge, but today's scan results show the drug is working. I have not suffered any sickness just tiredness which is manageable, I just pace myself. I did loose my hair but it has started to grow back again. Whilst I don't always piost I read the threads every day and the ladies in this forum keep me sane. Please keep fighting and posting. Rosie

[Lucy_BCC]

Hi stringbean and welcome to the BCC forums where I'm sure you will find the support you are looking for during this difficult time

Please also feel free to call our helpliners, they are on hand with practical and emotional support for you on 0808 800 6000 and lines are open 9-5 during the week and 10-2 Saturdays (closed BH Monday)

I am posting a link to further support from BCC which I hope will be of help to you;

https://www.breastcancercare.org.uk/secondaries

Take care
Lucy BCC

[stringbean]

Hello

I'm new on the forum today.  I just fell at last hurdle of starting the new Finesse trial as my heart scan was not good enough.  Terrible blow - in need of a forum hug I think.  I have been offered Vinorelbine or Erubulin but having been through Taxol and cape cytabine keep thinking about qulaity of life..  Giving up on treamtent is a hard decision to make but one I know I have to face if it means more sickness and hair loss.  But then the fighter in me refuses to give up.  I would love somebody to reply - can't keep loading this on my children.

[2catlady]

Yes,why can't leg hair fall out!! Grrrrr