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erubulin

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Member

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.
Member

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.  

Member

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🎀

Member

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😎

Member

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.💚💚💚

Member

Re: erubulin

Thanks Nicky.

Hi everyone, I may in 3 months be put on Eribulin. Found out yesterday that Capecitabine is not working for me as liver met has grown and TM gone up. They have put me on Faslodex hormone injections for 3 months, followed by another scan to see if working. If not it's Eribulin.

 

Hope everyone is ok.

Liz x

Community Champion

Re: erubulin

Bumping up for Bousy

Community Champion

Re: erubulin

No, I agree with you...and I recall your saying David Cameron would be an asset to your government

since your latest election...you know what, I think you were right.....hed be quite a calming influence.

 

 

take care of yourselfxxx

Moijan💚💚💚

Community Champion

Re: erubulin

Noonan, I don't know how far it woukd be allowed to go! I don't know how they can take away your right to help someone!!

Community Champion

Re: erubulin

Hi Funnyface....sorry to hear that...how can they penalise someone for being kind to people less fortunate?

 

would they actually get such a case through the courts?

 

loveand peace...Moijan💚💚💚

Community Champion

Re: erubulin

Yes if crazy here! The homeless  situation is bad! In some cities they made it against the law to give handouts of food! If  I see someone that needs food and I have some to give away then I guess I'm getting arrested!!  I ended up having a very bad day without it. I tried to go cold turkey and it didn't work. I. trying every other day. That seems to be going smoother. FF

Community Champion

Re: erubulin

Ooh, you sound as if you make a real effort  to look sexy in bed( expected a bleep then) lol

 

seriously, i have a cream routine in the mrnng...arm and face, also tablets, injection's etc. I wear an eye mask, but no bed socks! But tend to prance about with a naked head at present!

 

xx

 

💚💚💚 Moijan

 

 

Member

Re: erubulin

Hello ..I'm a grinder at night too ...it's a wonder I don't shred my tongue ! Don't fancy the gum shields though ..it's bad enough with face cream, eye mask ,bed socks etc ..the fashion police would just love my night time routine !
Xxxx
Community Champion

Re: erubulin

Hi Funnyface, its a pain...literally.!

 

is the US of A as hectic a place  as the Uk is at present?

 

what happens to all the homeless....do they get shelter etc...we have loads....and am sure loads of elderly lonely people, and other groups around...all very sad!

 

How is your reflux? Got caught out with severe pain last evening on my way somehwere...had to buy some milk...and id taken the omep twice!

 

Moijanx💚💚💚

Community Champion

Re: erubulin

Moijan, I'm a grinder too! I know I've been grinding when my teeth get sensitive. FF

Community Champion

Re: erubulin

Thank you Gadsbyxx

 

thank you Carolyn....glad your teeth are good as new again, I had a toothache but its gone, think Ive bedn grinding my teeth in my sleepxx

 

Moijanxxx💚💚💚

Member

Re: erubulin

Hi everyone, hope everyones well and wishing you all a lovely Christmas 🎄 🎄Xxx
Member

Re: erubulin

Hello moijan
As u r Billy no mates here on this thread ..thought I would gatecrash and say hello.
Was going to text you as you have been quiet lately .
Hugs xxx
Community Champion

Re: erubulin

Golly...this thread has gone very quiet!

 

hope everyone is ticketyboo?

 

Moijan💚💚💚

Community Champion

ERIBULIN,

Hi Andrea, yes steroids for appetite makes sense.! Yes its cycle 9 day 1 today

 

yesterday  asked reg if Erib passes blood brain barrier..she said she wasnt sure...and that its not a med  'they' use or brain mets...but as it is potently mood changing..I think it does go past it...so it may be helping your mets even tho noone knows!

 

hope so

 

have to get ready now. Best wishes..glad it went well....

 

hope everyone else is ok?

 

love and hugsxx

 

Moijan💚💚💚

Member

Re: erubulin

Hi All, I had cycle 1, infusion 2 today (well Wednesday) Feeling ok, fatigue was my main problem last time but kidneys are performing better, (AKI from Capecitabine) over 60% now...

I asked about the steroids (Dexamethasone), I have them for 2 days and main reason, anti sickeness and help to increase your appetite plus anti inflammatory. Down side insomnia, hence the early post...

Cannot wait until end of Jan for scans....

Was ravenous today so ate really well but have lost a couple of pounds last week as appetite was not good for 3 or 4 days. Solution - stuff my face when I feel like it 🍪🍩🍿🍫🍭🍔🍟🍕🌭 oh ok 🍐🍏🍓

Linda, good luck today with number two. I spent the weekend putting up the decorations 🎄🎄and doing final bits and pieces of shopping (Amazon is my friend)! I love Christmas too and turn in to a big kid..

Moijan, is this your 9th cycle starting ?? Re my brain mets, erm, how bad is this, I don't know what they are... I have 1 at 2cm and 3 at 3mm. They didn't grow in 2 months and I have stereotactic radiotherapy 4th October. He predicts 95% success on smaller and at least 90% on bigger with an op if not as good as he'd like. They were all left front. I've just put them to the back of my mind (😂😂😂) until I have my scan mid Jan.. The ribs must be annoying is there any thing they can do? Apart from that, hope you are feeling ok.

Marnster, hope your appetite is better,I lost mine so had Husband and Mother in Law to remind me to eat, stocked up on Heinz veg soup, beans and eggs. Going to make my own soup next week.

Hope you all have a good week/ weekend, I'm off to Sheffield for a 'Smith' (my maiden name) family Christmas 🎄This weekend so lots of tic and presents 🎁!

Andrea xxx


Community Champion

Re: erubulin

Went for onc appt..bloods all fine. Going for day 1 dose tomorrow. Hope everyone else is ok?

 

Moijan💚💚💚

Member

Re: erubulin

Hi Ladies, hope you are all keeping ok, all good here, had a busy energetic weekend and managed great. Just love christmas 🌲🌲🎅🏻🎅🏻🍾🍾
Community Champion

Re: erubulin

Iwould think Erib could be good for brain mets, as it def affects my mood!💥⚡️

feeling good today tho...nextcycle starts on Thursdayxx

Moijan💚💚💚

Community Champion

Re: erubulin

Andrea....sorry to hear you have brain mets too. Xx

are your tumours lobular or ductal?

 

yes hopefully eribulin will do the trick!   I too have low appetite, but today am feeling quite hungry....

 

Moijanxx

Community Champion

Re: erubulin

Hello bothxx

 

Marnster,

 

i have a couple of hairline fractured ribs( for a long time) which are either mets or rad damage....but they hurt sometimes if I twist the wrong way.....I have heard of pain occuring when tumours shrink......but was thinking, do you think it could be reflux?  I Get that a lot......many chemo ladies do..and the pains I get are sometimes my rear teeth ache in the lower jaw, sometimes I get pain in the chest on my right side....I can tell what it is because a glass of milk gets rid of them...

 

My gp queried a pulmonary embolus as similar area, but that pain wouldn't  go with milk drinking! So next time it comes, try a glass of milk, or if you are off milk, then oat, almond, soy milk, whatever and see if it goes!

mine can go with just water.

 

Andrea  yes, I hope your results are good, (all of you) on E. You are on a lot of drugs then...something must work! I was on Letro for about 7 years but told to stop...the bc came back and then the Letro wouldnt work!

 

i do hope that i wont get muscle weakness tho, like your onc said can happen! 

So glad he thinks good results can happen tho xxx

Love and hugs

 

Moijan💚💚💚

Member

Re: erubulin

Hi Marnster, I think our replies crossed as I took so long to type!!

 

hopefully it's because it's working you've got the chest pain, it seems ages to wait, 3 cycles and then scan but I suppose you've got to give it time....

My Oncologist did say that weight loss can be a side effect as you lose you appetite and a bit of muscle weakness can occur too.. will see how it goes but let us know how you get on. I've been seeing a dietician at the Haven (it's free) and one of the things I have if don't feel up to cooking is eggs.... boiled with soldiers, not has since a kid & beans in toast...

A xx

Member

Re: erubulin

I'll ask about steroids as I had them on FEC & Tax.

I wonder if it was to give me a bit of a boost (only for 2 days) as I'm stilll not over the effects of Capecitabine, my kidneys are still not working properly as a result of it (48% should be over 90%) but getting better!

Will ask on Wed... glad you both are doing well. My Onc said get can really good results with E, I ask about scans and will be having Bone, CT & ultra sound end of Jan / early Feb to see what's what, oh and brain MRI on 10th Jan (I have brain & bone mets, but both being treated as well...)!

It is amazing how well you can feel Moijan, I regularly have Denosumab, Zoladex, Letrozole & Calcium supp and take a load of other supplements (so I rattle) but most of the time feel good, ok I get aches and pains but before the Capecitabine 'incident' I was working 4 days a week...

Hoping for a 'easy ride' for all of us on Eribulin and good results.

A xx
Member

Re: erubulin

Great to hear everyone is doing so well on Erubulin. I've just finished my second round after my Day 8 dose on Wednesday. Don't feel too bad from it, but feeling a bit sore/tender in my chest near the lung met today. Hopefully that doesn't mean it's got bigger. Am hoping the Erubulin is zapping it to pieces. Won't know until I have my scan in January though. Still got another round to get through before then. Am hoping I have the same results as you Moijan! I have the same no appetite as you! It's easy to forget to eat and a lot of the time I don't feel like eating, but I try to get a little bit down to keep my energy levels up.

Community Champion

Re: erubulin

Hi ladies,

 

glad its going well, I wasnt offered steroids either...so its a puzzle why some oncs presc them, maybe its because of the antiemetic causing agitation?  I recall having steroids with EC ant Taxotere.

 

i realised that ( just thinking a  minute ago) that  the 'feeling low' seems to occur on the week off...which makes sense, as other chemos seem to do that..like cape..

 

the other thing is, I feel very well on Eribulin...and Think im. Healthier than Ive  been since my mets came..

looking at my tms, they were lower than they ever were during the past 18 months.....

 

I Am crossing my fingers for you both.......the more recent studies seem very positive and I guess they can now see how well the 2012/3 ladies are doing....as time has passed.

 

hugs,

 

Moijanxx💚💙💚

Member

Re: erubulin

2nd day for me, feeling ok no problems at the min, just waiting for them to start. Andrea I asked about steriods and they said they dont give them with Erubulin just antisickness to take at home. Thanks for sharing your experiences with us Moijan, hope you are feeling ok xx
Member

Re: erubulin

Day three and still feel good, no side effects so far! Feeling chilled about next Wednesday now. I know I started on a lower dose (75% I think) because of the horrendous side effect I had with Capecitabine I know they will gradually increase it but I'm hoping to stay on this dose for the ones on 21 & 28 Dec so I can enjoy Christmas and New Year!!

How's my Chemo Buddies doing???
Member

Re: erubulin

Good to hear that it went ok Linda! I feel fine today, steroids only for 2 days must ask why.. did anti sickness by iv and got some to take home too.. A xx
Community Champion

Re: erubulin

Hi Linda and Andrea!

 

sounds as if 'so far, so good' for both of you....thats really great.!

 

Was trying to think back to my first cycle...the antisickness i/v* made me panicky....

 

i couldnt understand why, as I have Zometa i/v 6 weekly anyway! A staff nurse suggested we try without the i/v antisickness drug and since then...no panicky feelings..apparently that drug* makes some people agitated when its given i/v. 

 

I did Feel tired on the second day after...eg day 1hree and 10, but then I started filgrastim/neupogen and it helped boost my energy as well as my immunity, so i dont get that massive tiredness.  However, i sleep very  badly, so I Get tired some days because of that.

 

i did get mildly sore mouth during the first cycle, and constipation...both of those have not been a problem since really,but i try and drink buckets of water.

 

i dont feel hungry ...sometimes have got to lunchtime and realised id missed breakfast!

 

i did have changed sensation in my legs, also swollen ankles the next day, but that seems better now.

 

a few cycles..during my week off have felt depressed and got angry really easily...Thats happened this week...but I think it's going again... Both my ex eribulin buddies talked on here about feeling low too, so it is obviously a feature of Eribulin.

 

Hugs, Moijanxx💚💚💚

 

 

Member

Re: erubulin

Hi everyone, well first one done lol, no steroids and just antisickness tablets to bring home, see how its goes, quick infusion though. Hope you are all doing well.

Linda xx