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erubulin

212 REPLIES
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Community Champion

Re: erubulin

Sorry ..but just noticed if you scroll down to moijans posting dated 11th February 2017 she's posted the link for you to get to.
Community Champion

Re: erubulin

I hope you have found that thread now ..I wish I could post the link to it for you but I can't on this phone!
I think ( not sure) as I'm not on it but its quite a recent released treatment as all of a sudden there is quite of ladies becoming spongebobs !! Moijan on the other thread has been on it for a while and seems to know all the answers to side effects etc
Hope u find it useful .
Xxxx
Member

Re: erubulin

Hi Carolyn52!  Thanks for your speedy response!  It's nice to have some pals going through the same thing although I wish we were not on this journey!  I will take a look at the other forum.  I am the only person in my hospital on this treatment so it is quite lonely not to have anyone to share notes with.  

Community Champion

Re: erubulin

Hello takethatfan
Welcome ..I'm also a fan and Westlife too !!
There is another thread called " chemo buddy eribulin " thread on treatments where all the "spongebobs" meet to chat over the side effects of this chemo and its very friendly and helpful so you might get some good advice there about your hair ..
It's the final blow when under treatment to loose the hair ..somehow as women it knocks our self esteem sideways.
Best of luck
Hugs xxxx
Member

Re: erubulin

Hi everyone!

 

Im new here and it's great to read all your posts - it helps me not feel so alone.   I've just had the first dose of my second cycle of Eribulin and overall, it's not been too bad.  I did think I was keeping my hair but in the past day or two, I've started to lose a good number of strands  - wondering whether I'm going to lose it completely or if it will just thin.  I've heard that if it thins, some people say that it then starts to grow back.  I was wondering   How many cycles does it take to start growing back and stop shedding?  I should feel pleased that I have still got my hair when others haven't been as lucky but I suppose it just adds to the stress when you don't know what is going to happen.  Constantly travelling everywhere with my wig incase it all flies off in one fell swoop in the Scottish wind!

Community Champion

Re: erubulin

Ff, you meant to say 'If' Ibrance fails?

xx

Community Champion

Re: erubulin

No Moijan, but I have it on my list to ask about  when Ibrance fails! FF

Community Champion

Re: erubulin

Hi Funnyface,

 

was wondering, have you ever been a n Eribulin Spongebob? How did you find it?

Community Champion

Re: erubulin

Kay, I'm sorrry  you lost your mum, it's not easy! That's horribre that you are dealing with her loss and your health.  I lost mine almost 19 tears ago. I miss her so much! I sure wish I could hear her voice! Take care of you! FF

Community Champion

Re: erubulin

Kay...yes, im sorry about your mum tooxxx

It really hurts to lose a mum doesnt it?

 

still miss mine...died 1987 xx

 

chat soon

Moijanxx🎀

Community Champion

Re: erubulin

Hiya Kay
Sorry to hear you lost your mum so recently ..loosing a mum is never easy and you must save all the happy memories you have.
Its strange but 42 years ago today , I lost my beloved mum to bc and I can honestly say never a day goes past when I don't think of her.
The chemo you are having is getting more popular now and I think you will soon have a little gang to support you but in the meantime Moijan will help you through it should you have any questions.
Carolyn xxxxx
Member

Re: erubulin

Hi Moijan

thank you for reply will have a look through site when i get chance paclitaxal was good for me i would say a walk in the park compared to my first hope this is the same but works better i have told them to put grandchild in after school club as i picked her up from school just in case i do not feel well on it and the other who is only 18months will have to go to her other nana but i hope i will not be to bad and can still enjoy them and walking the rescue dog i have took on 

how long have you been on it i read somewhere that some one had been on it for 14months 

 

take care 

 

kay 

Member

Re: erubulin

Hi Carolyn 

glad it is still working for you and i hope your scan proves it still is i have not been on as my mother was ill and i have been busy looking after mam and grandchildren but unfortunately mam died end of November 2016 she had lung bowel and liver not sure if there was 2 primary or just one that had spread that was in august we found that out. i came straight out from her funeral to hospital as i had concerns and ct proved my fears so here i am again trying out another chemo coming to terms with that and grieving for mam i have been at an all time low but feel i am picking up now. i also had lost 8lb in weight but had been doing zumba thought it was that causing weight loss (needed to lose some) but hay o there are worse off than me 

you keep giving people a laugh 

 

good luck and take care 

 

kay

Community Champion

Re: erubulin

oh Kay.....forgot to say...usually we hang out on the 'chemo buddy needed....anyone on Eribulin thread, so you might want to check posts on there!

 


https://forum.breastcancercare.org.uk/t5/Treatments-and-medical-issues/Chemo-Buddy-Needed-Anyone-Cur...

 

 

 

Carolyn...how are you? Nice to see you

 

Moijanxx💚💚💚

Community Champion

Re: erubulin

Hi Kay! 

 

How very nice to meet you! Welcome to the thread! 

 

Am, sorry about your progression,.......but Eribulin has done wonders for me.

last June my liver mets were in progression ....since my start on Eribulin the tms have plummetted and also my last mri Showed the bc isnt active.

 

yes its a ten minute infusion, but i believe theres a choice between 10 and 20 mins. i have always been on the middle dose, ( my liver function tests results have always been a little high ... Not to do with Erib especially)

 

if you read back on this thread you will see tips etc, but withasmile says she....... and I  also have found this chemo to be pretty easy compared to other chemos. It does lower the white cells, so nutrapenia is a risk, but the other bits and pieces seem to vary among people.

 

i started with a iv premed of antisickness drug which made me feel panicky, so now never have that nor sickness either!  My previous two ex chemo buddies mentioned some mild sensation changes in their legs, which I had initially but is fine now.  I do get a bit ratty in my week off😡.....am more inclned to tell people exactly what I think.....  But otherwise 😎

 

 

Moijanxxx💚💚💚

Community Champion

Re: erubulin

Bousy,

 

my onc said im to stay on it until it stops working!  Theres a hint there, but it is nice that its working...and I might take a wee break at some stage....Moijanxxx😎

Community Champion

Re: erubulin

Hello Kay
Its good to see you posting after ages ..I think we used to post on private forums ..must have been a year ago.
I can't answer anything on this new chemo but just wanted to pop in and say hello.
Moijan here on the board's is doing really well and hopefully she will pop in later with some good advice ...
I'm still a letrozole lady ..15 months but due a scan in March so things could change for me too ...
Anyway good to hear from you
Carolyn xxxx
Member

Re: erubulin

Hi All 

i am not a regular user but I occasionally come on when I need info I am starting eribulin just waiting to hear if I can get funding 

my secondary breast cancer has migrated to liver after being on letrozole for 1 year why I was kept on it when I have had progression through out the year in chest I do not know had radiotherapy in June then again in different area on chest in August had pain in right shoulder but thought I had been over zealous doing Zumba 

saw onc Dec 19th he arranged ct in the mean time ended up on New Year's Day at the out of hours GP as I was in such excruciating pain around my right side it hurt to take small breaths when I needed to take a deep breath I was nearly on the ceiling in pain GP just said it was your cancer. Anyway this week went for ct result to be told it is on liver. 

I just read on thread below about a 10 minute infusion is that all it is or have I read it wrong I know it is 1&8 in 21 and I have been told I could be on it for a long time or his words as long as it takes  I see some been on it for 14 months is there anything I should be aware of I had had 2 other chemotherapy in the past epirubicin and cyclosphamide which was awful changed my personality well that's what I blamed it on I then had paclitaxol weekly which shrunk tumours but they never held on letrozole they were growing with in 2. Months I was allergic to the flouracill in capcitebine so only on it for 24 hours and I have had anastrozole ttamoxifen exemastane and letrozole all since 2010 when I was re diagnosed any tips how to cope welcome on eribulin 

 

kay

Member

Re: erubulin

Thanks Moijan for the info. Do you just keep on it like on cape if it is working?

 

Liz x

Community Champion

Re: erubulin

Ok Bousy,

 

Eribuln has worked very well/wonders for me so far. I started it in June and the bc is now non active! They find it very hard to find the scar tissue on my mri scans. please PM me if you do go on it and we can chat more. Xx

 

i hope that gives you some optimism if you go on it...I went on it after cape, letro and vinorelbine failed.

 

Eribulin regime.

three week cycle intravenous, ten minute infusion:

week one. Onc, then. day 1  chemo if bloods ok

week two.                   Day.8  chemo if bloods ok.

MRI three monthly

 

i have found it very workable as a chemo...minimal side effects. Was given an antiemetic premed, but this made me panicky...stopped it and now no panic andno nausea/vomiting ever.

I lost my hair....

slight constipation if not drinking enough.

urine infections ....have had a few but prob because I wasnt drinking enough...have learned my lesson!

 

does lower the white count, so I am given filgrastim...see CHEMO BUDDY NEEDED thread

 

very best wishesxxx

 

Moijan.💚💚💚