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Chemo Buddy Needed - Anyone Currently on Eribulin?

philippa
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

I was just reading everyone's  positive remarks about eribulin. I swapped from Capecitebine & feel so much better now on eribulin....on 6th cycle now. Major hair thinning after the 1st cycle, but apart from that feet, hands are amazing now & energy levels are so much better than before. So encouraging to hear some people are on for many many cycles. Will know if it's doing the job in a few weeks time. But I feel like a different person so that's good. Good luck to everyone else on eribulin too.

Philippa x

helen44
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Debbie
Hope you're getting on ok with eribulin, I am about to start cycle 18 next week.
My hair thinned just after cycle 1. After complete hair loss with docetaxol I was really pleased that it didn't completely fall out. It has grown over the last year! There doesn't seem to be a pattern on hair loss/thinning - everyone has a different experience.
I find eribulin tolerable and hope you do.
All the best with your treatment.
Helen x
Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi, there, you know what, I think it was quite quickly....but I did stop washing it very often...like now actually! And I had got a couple of wigs from last time, but I went up and ordered one fairly early, I also wore those little headscarf’s that are ready made, eg with elastic at the back. I keep meaning to mention ‘Heathers hair’ on here..they are a charity who make headbands with real hair on, so you can wear them under a cap or scarf and you have a fringe,* or even an all round short bob.*

 

it is free, but as it’s a charity, they like small donation.xx I have two of those myself.*

 

Moijanxx

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Lovely to see you withasmile xx

Clarisse
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Had my first treatment yesterday. Was amazed at length of treatment-only 5 minutes!!  Tolerated it well, haven't had any side effects yet.  Have next treatment on Friday next week.  Will see how that one goes.  To those who have lost hair: when did the hair loss start?

withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hi Clarisse Debbie

 

after your other chemos I think you'll LOVE Eribulin!

good luck today, hope everything goes smoothly

xx

withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Nicky,

thanks for the update, its so annoying when things take so long.

 

My onco was muttering about trying hormone drugs together in combo to try and prevent a recurrence but we didn't get very far with discussions.

 

I'll keep popping back to hera your updates, you're in my thoughts

xx

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Yes, please doxx

Clarisse
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks for the info, Moijan

 

I will let you know how everything is going after my treatment on Friday.

 

Debbie💗

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Clarice, after taxol you should find Eribulin a doddle.xx

 

have a scan back through the thread to see what side effects you might get...but I did lose my hair, it came back slowly whilst on the chemo. Most of us found the erib pretty tolerable and it worked for about 15 months for me. The drip is about 10 minutes and I drove to and from the hospital, about half an hour.

 

was getting no side effects other than my hair really. I did get cellulitis, but have lymphoedema so that was a given.

 

welcome to the thread xx

Moijan💚💚💚

Clarisse
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

 
Clarisse
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi everyone

 

I am starting Eribulun next week. I'm not sure what to expect.  This will be my 3rd chemo drug.  Started with Taxol for 9 months and lost hair.  I got good results, but neuropathy was getting bad. Next was Xeloda, hair came back. I was on this for 9 months.  Got good results until last scan.

Any advice about Eribulun?   WillI lose my hair with this one?

 

Debbie

 

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Kay,

 

good luck with with your mri results...I normally get asked to start a new treatment the day after. Not sure about getting erib out of your system, eg how long.

 

mx

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Helen 44

yes I Had 16 but the scan I had on the 9 th of jan showed progression I presume I will have to wait while eribulin gets out my system I have not heard from the chemo specialist nurse practitioners about going getting the information about Taxotere but I have just received appointment for onc for mid March, I am waiting for bone scan which I will have next week so when I ring my breast care nurse to tell her I have had it I will mention not hearing from the chemo nurses and double check what I presume is right because I do not recall hearing onc saying anything other than I would hear from the nurses 

good luck with your treatment I hope it carries on working for you 

 

kay 🍀

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Good luck to you guys....and keep in touchxx

 

moijan💚💚💚

helen44
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi lovely ladies,
Sorry to hear that eribulin has stopped working for you Kay & I hope that you get started on a new treatment quickly. We were on same cycle I think, just started 17 today. The neuropathy isn't great but I am pretty ok apart from that. Should be time for another scan soon -what joy!!
Big (((((cyber))))) hugs to you all xx
Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Kay, have sent you a pmxx

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Withasmile

nice to hear from you none of the hormones worked for me either but when I was on exemestanen it was given with everolomus of which I could not have has I had had to many other treatments can not remember now if it was only 1 chemo and 1 hormone but you can look it up plus they may have changed  the combo in last 2/3 years 

 

take care 

 

Kay

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

 
Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hi Nicky, Kay and withasmile, 

 

i too would be really interested to hear WIthasmile about any suggestions you might have about combos, thank you.

 

Moijanx

nicky08
Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi withasmile - thanks for the good wishes. It was a bit of a shock as all other hormones I’ve been in have given me many months or years of stability so I wasn’t expecting this one not to do the same. I have already asked my onc to speak to the Marsden for a second opinion - I don’t need an appointment there at this moment as they have all my up to date notes and recentliver biopsy results so they should be able to say what it best or if there is a trail that would be available although I don’t think there it’s one at the moment. I also have the MRI booked and am emphasising the need to get a move on as I was in the position this time last year and it took ages to get a decision about what treatment was or was not suitable.

When you say that your oncologist has suggested using hormones in combo do you mean with other drugs, chemos or two hormones together? I’m interested as any suggestions or ideas that other ladies oncologists have regarding treatment is always worth knowing.

Nicky xx

withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hi Kay and Nicky

 

I just popped in to see how you all are, and am sorry to hear your latest news.

 

Kay- good luck with the new regime.

 

Nicky, I will be interested to hear about your next option. Exemestane (indeed none of the oestrogen inhibitors) worked for me individually, but the onc had been talking about using them in combo when the need arose.

 

Love to you all

xx

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Nicky 08
I agree only been off it 3 weeks but I feel in myself a lot better but I was in excruciating pain with my liver and that was the same as a year ago when it went there so I knew this time what was wrong
Hope they give you something good can not say I am looking forward to this next round

Kay

nicky08
Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Sorry to hear this Kay.  I was doing well on eribulin but was advised to stop after 8 cycles as the oncologists felt my bone marrow might become infiltrated/compromised.  Anyway that didnt seem to happen once I was on exemestane (sp?) for 3 months.  Unfortunately this does not seem to have stopped my only visible liver met from increasing in size (everything else in the liver including this one had shrunk/disappeared on eribulin) so I'm now playing the waiting game to see what the next option is.  The only thing I would say I have been grateful for those few months off chemo - even if its as kind as eribulin was - I've really noticed a difference with my energy levels etc and the freedom from not going to the hospital so many times.  However it did keep me stable so I guess it is swings and roundabouts!

Nicky xx

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi All 

just an update after 12 months on eribulin my liver tumours have now decided to grow back and some on my chest wall .so it has been stopped due this and will now be going on taxatare

 

Wishing all those still on it well and hope it keeps working for you 

 

kay

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks Liz.....

 

Moijanxx

Bousy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Moijan,

Good luck with your results on Wednesday.

 

Liz x

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello Liz, hopefully you are better....?

 

very best of luck for Friday.

 

im getting results of wbmri on wed, and also, my injections in the bum! Am taking a friend along to note down what the onc tells me...and will first present him with a list of questions on my iPad ..in fact I'm thinking of emailing him some q before then, as we don't meet in a room where they can look on the pc.

 

I do hope everyone else is fine? No lingering hangovers etc.

 

love and hugs,

 

Moijanxx

 

Bousy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan,

Happy New Year. Yes I should be having cycle 10 next Friday. See oncologist on Wednesday. I had to miss day 8. of last treatment as I had sickness and diahorrea. Feel a lot better now. Hope you are feeling ok with your treatment 

Take Care,

Liz

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello everyone....hope you all had a good festive season.

 

this thread seems deserted......anyone on treatment next week?

 

hugs,

 

Moijanxx

withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

wishing everyone the very best Christmas possible, with luck, hope and happiness for 2018.

Love to you all xx

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Oh, Bousy, what wonderful news!  You must be feeling great about thatxx

 

Moijan💚💚💚

Bousy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks Moijan and hope you are keeping ok. I had a scan on Saturday and have seen oncologist this morning. It’s good news, bones healing, no movement in liver, lungs healing. Start cycle 9 on Friday. Fatigue is not as bad but have a bit of fluid on lungs. 

Still having bloated feeling under right ribs but nothing shown on scan. Put it down to windy bowels!

Have a nice Christmas everyone.

Liz xxxx

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Just sending a bit of love and encouragement to everyone on Eribulin and all the poppers inxx

Moijan💚💚💚💚🤗

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Shirley, I was on eribulin for 14/12 before it became less effective.did wonders for me, but bc grew again.

 

now on Fulvestrant,......but not everyone gets it as many hospitals can't afford to pay for it...it's not approved by Nice

 

good luck, , don't despair xx

 

Moijan🙏🤗.;

nicky08
Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Shirley and I'm sorry to hear that Eribulin is no longer working for you.  As to what you can go onto next it will depend on what type of receptors your BC has ie are you hormone positive/negative (I'm assuming you're not HER2+ as you've not mentioned Herceptin) and also what previous treatments you've had.  Sorry I can't be more specific than that but I do hope whatever you do go onto it is kind to you and sorts out those liver lesions.  Let us know how you get on, and about any of info about the above we may be able to help with a bit more advice.

Nicky x

Atters
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi everyone, I haven't been here in a while. I have been on Eribulin since January. It seemed to be working, even though I was having a hard time with numbness etc, and had my treatment reduced  to half. I had a scan in November which showed that my liver lesions had grown. One in section 2 was 20mm and had grown to 29mm, and one in section 6 which was 13mm now 27mm. It also showed new lesions. So Eribulin has stopped working. I am in a daze, and don't know what will happen now.

Does anyone know what can be offered after Eribulin?

 

I hope you are all having a better time then I. And have a happy Christmas.

 

Shirley (Atters)

Foxylady
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Great that worked!! Lol!
Went were it was supposed to 😀
I have just started eribulin, day 8 today me first cycle.
I have Inflammatory TNBC with skin mets and other breast secondary.
Thought I'd like to join and see how other people are getting on with it!
Already had gem /carbo and cape this year neither worked so here I am.
Foxylady
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Evening ladies
bezza111
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Mojan,

 

I have been on eribulin since june, just had my first scan results cple weeks ago, the tumour in liver, adrenal gland and nodes have all dramatically reduced, was very shocked and pleased. My oncologist has given me alittle break from it till Jan 10th.very pleased about that, I have also beCen drinking japenese tea as well, so dont know if this might have contributed,dont suppose i will ever know.  How are you doing, i know you said they were prob taking you off eribulin, are you on another chemo now,this chemo is very kind to me,i only really suffer with fatigue.  Hope you are doin well,lots love, Carol Pope xx

 

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Can you try a chiropractor?

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Carolyn

glad things seem to have stayed the same for you let's hope MRI gives good results you have been lucky with the  letrozole and let's hope it continues 

I am ok just just my leg so saw GP all he wanted to know was if I had indigestion told him I am on lansoprazole then he asked what was the worse scenario so I told him going to the bone so he said he could do 2 things have X-ray or do urgent referral back to onc (which I could do my self ) so in the end I just said do X-ray if you think it will show tendon or muscle up he then decided to do both he sent the X-ray off electronically gave me phone number to ring radiology department came home rang no one there so left message waited 4 hours rang again still no one there waited another hour rang spoke to someone asked if I could have following day before chemo they said would get back to me which they did but I can not have X-ray till next Thursday 14th bet I do not get results till after xmas 

so I rang onc secretary left message to ring me. Luckily I know her well so I can alert her to look out for X-ray and then she can say to come in and see onc or stay with appointment in Feb I know I could be very wrong but I think I have over done it and pain  killers not working so wanted something different that's why I went to Gp but as usual they are passing the book back to onc 

 

kay

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?


Carolyn apparently nice reconsidered xx

Carolyn52
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello kay...can't remember where I saw the link now !!
Yes I got my results Wednesday. .bones stable , adrenal glands recovering ( this was a shock as they have never been mentioned before ) and a mri scan on liver in 3 months as the ct scan didn't give a clear picture ..oncologist thought that maybe contrast didn't go through properly for scan ...
So I'm continuing on letrozole. .not a bad result so just going to focus on Xmas now !!
Hope u doing OK.
pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Carolyn 

I thought they only allowed it this year I got for funding  for it just before they opened it up as in 2013 they stopped it due to cost and did not give us as long enough time to live at that price can you send the link so I can read it please

have you got your results yet ?

 

kay

Carolyn52
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Just reading online that NICE have rejected use of this drug to ladies that haven't already had two failed chemo treatments ...so it's going to limit new ladies becoming sponge bobs here !!
Apparently they can't justify the high cost against standard cape pills which are cheaper. ..
Xx
Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Glad things are stable Helen xx

 

M💚

helen44
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

So pleased that you are doing well Withasmile.

I started cycle 14 last week as the eribulin is keeping me stable in liver & bones. The 2.7cm tumour is still 2.7cm in liver but at least it hasn't grown or any new mets appeared- for that I am grateful. The neuropathy in fingers and toes has eased off a bit as well so happy (!!!) days....

Take care Spongebobbers, love Helen x
Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Let us know Bousy....

 

love and best wishes, Moijanxx

Bousy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks Moijan, hopefully I will find out what it is.

 

Liz x