Hi everyone,
I will also be joining the eribulin gang on 12th July after a recent scan shows mets in liver so will be great to share the experience
Teresa xx
Hi all have just seen oncologist for ct scan results after 5 cycles of eribulin. I am classed as stable, a couple of lung mets have grown but under 25 per cent so they class that as stable. He said he will give me upto 8 cycles and then re scan . How long have ladies been on eribulin?
Sarah66 xx
<Empty imported post>
Hi Ladies,
As Nicky said, on this thread I have been the longest on Eribulin. Just over a year.
My bc is in the liver and bones was diagnosed with these mets in 2013.
My tms were over 1000 when I began, last count = under 80. The drug has been really miraculous for me, tho there are signs that it is now less effective. My Liver mets were pronounced dead earlier this year, but recent mris show some slow,almost imperceptible new growth.
I have had few s/e. I am convinced tho that the peripheral neuropathy down the insides of my knees, calves and ankles are due to this drug.( I have other p n in my feet from Taxol from 2001.) however, the drug has been beneficial for me in terms of life extension(so far) for a year which I might not have had without the drug.
Sometimes I feel a little dizzy/off balance, not sure it is the drug… or it might be from filgrastim, which I have been having to boost my immunity. Girls… that is one thing E does, reduces the white cells so need care there. Also lost my hair, but now it’s growing whilst I’m still on the drug…
Was initially given a premed of a antisickness drug, but that caused me to have panicky feelings on the drip…now I’m not having that and don’t need antisickness drugs at all.
Nicky may have told you the drip is given on Day 1 and repeated on Day 8. So it’s drips two weeks out of every three = cycles of three weeks. Not damaging to the veins either-I haven’t a port or pic.
Sure most of you will have minimal side effects but be sure to report any numbness as some ladies were taken off it in the past with that.
Oh - and Withasmile and others will back me up here…week three, the week off- you can get angry or down … should have said this before… if anything would normally make you cross … that week you will find it’s definitely worse… I have acted out of character and spoken my mind - much MUCH more truthfully than I would normally have done - got me into hot water! Strangely now the drug is getting lesse effective week three has been ok xx
best wishes
Moijan???
I have just finished cycle 1, due next one on the 11th July, have got to have a port fitted as not got good veins. No hair loss as yet but am cold capping. Only side effect I have had is indegistion but other than that all good. I was diagnosed with secondaries to my liver in December 2012 so nearly 5 years go, had xeloda for over 2 years but recent scan showed progression so swapped to this. Would love to hear from anyone else on this drug and how lon you have been on it. Kim xx
Dear Kimmy please read my post lower down and also if you have time, read from the beginning as there are lots of tips
Best wishes,
Moijanx
Welcome new Spongebobs, sorry you are here but there’s great support on this thread which you’ll find helpful, I know I have.
I am currently on my 7th cycle of eribulin, CT scan after 3 cycles showed improvements in the liver so I continued and will be scanned again after 8 cycles. Fingers crossed!
Wishing everyone all the best with your treatment.
Big ((((((cyber) ))))) hugs, Helen x
<Empty imported post>
hi ladies, so my mom will be starting eribulin soon, not sure if she will be doing an immunotherapy with it or after it yet.
she had ac and taxol chemos in the past.
shes really worried abt the hair loss because that really gets her down. any advice? the onc told her there is hair loss, the nurse told her not so much??
any tips advice is appreciated. ive been scrolling back and reading older posts and showing them to her.
hope you are all fighting strong xoxo
Hi, Mum will be fine on Eribulin. I list my hair but it’s growing back - am still on it, so that’s a plus.
Yes do read the older posts, lots of tips and advice.
Best wishes, Moijanx
Hi, I have just signed up. My mum is starting ebrulin next week as her her2+ metastatic breast cancer is getting out of hand. Her onc said she can’t have cold cap with this one as it takes up treatment time for someone else & there’s no proof cold cap works with eribulin… how is this so??? I’m so upset because through everything she’s been through so far she’s cold capped & kept her hair but now as things deteriorate they are not allowing her this ‘luxury’ so for the first time in 2.5 years of treatment & surgery she has to loose her hair too Smiley Sad I said I’d seen that people have had the choice weather to use cold cap & she said each hospital is different! Surly it’s the patients choice?!!
Hi Eribulin takes 10 minutes to give- if you cold cap it takes almost 2 hours-so yes it does take up time which could be used for other patients -also cold capping doesn’t always work with Eribulin… and Eribulin doesn’t always make you lose your hair -I lost mine, but during my year on Eribulin it is now regrowing.
I understand how mum feels, but the difference between treatment times being 10 minutes and 90 minutes + is considerable. Hugs
moijan???
Oh, I suppose if mum feels strongly enough she could change hospitals - but the truth is, there are loads of us mets ladies and we all need to be treated, so time has to be a consideration… I have lost my hair three times in 17 years, so I do understand, but there is no evidence it works for Eribulin -somebpropke don’t lose their hair even without cold cap so …
Bousy, xx so do I! I hadnt realised nothing had worked For you. All of us mets ladies travel hopefully from drug to drug, untill it stops working.
I have said this before, loads of times…but each time a drug has ceased to work for me…its been preceded by a break…my Cape was working really well until I needed two weeks off it for some other treatment…letrozole worked fabulously until I came off it…next time I tried…it didnt work.
eribulin has been a wonder drug for me + I will never know, but it was working before I took one extra week off - and it had killed my liver mets! When I next had my mri…it was growing again! So I personally would not willingly take a break of a chemo unless my sideeffects meant my quality of life was pretty bad!
i know some other people dont agree with me…but thats the experience ive hadxx
Moijan
Bousy, this will sound a bit weak…but try not to worry too much re the bone mets…my guess is, they may give you zometa or denusomab for those…
.Eribulin worked well on my liver mets and obviously the lungs are nearby, and soft tissue( though different soft tissue) hopefully Eribulin will help for those. I dont think ( but dont know because im on Zometa) that Eribuln has done much for the bone mets. Obviously if you are in pain with the bone mets, then they might offer some rads?
do let us know how it goesxx
Moijanx
Hi all,
I’m totally new to forums, not even sure if I’m doing this right! Starting Eribulin in 10 days time following 22 months of other treatments/surgery/radiotherapy for mets in liver, bones & lymph nodes. Liver is now getting ‘serious’, am nervous as I want to enjoy the summer as well as sorting out my liver. Any advice on when fatigue is worse during eribulin cycle?
Re fatigue… I feel raring to go for a few days after Day 1, more tired after day 8, but i think everyone is different.
remember you can ask for filgrastim, if your white cells drop…
drink loads this weather tooxx
Withasmile, Sorry, if I never replied to 12/6 xx I had a really hectic June and i didnt see it
nice yo see you posting tho
M
Hi Liz,
Hope you ar feeling OK. I’m guessing you are a couple of days in now so hope it’s not too hot for you.
Jo xx
Thanks Moijan, that’s really helpful, I’ll google filgistrim xxx