62379members
328269posts
cancel
Showing results for 
Search instead for 
Did you mean: 

erubulin

Member

Re: erubulin

Hi my chemo compadres,

Well it's so far so good! Had my first Eribulin today at about 11:30, came home, had lunch & had a jacket potato for dinner. Feeling ok but bit tired so had/having a little snooze, I haven't slept well the last few nights (worry) so that accounts for some of it but tired is one of the side effect straight after.

I had anti sickness intravenous & a one a day slow release anti sickness plus steroids for 2 days. This is the first time my nurse has given Eribulin so has asked me to document any side effects so she can talk to other people about them!

It was all so easy as done through my new port, even taking bloods.

Thought I'd share as you (Linda) have yours tomorrow...

Will let you know how I get on. How are you all doing???

A xx
Community Champion

Re: erubulin

Hi lovely Cemo Buddies!

 

Just finished my eighth cycle...I think.

 

My onc said that I will be on it as long as it continues to work for me!

over the past three years I have had 4 drugs. In all, looking back over my tumour markers, They have been better on Eribulin than any of the others, and ......still dropping miraculously, so take heart ladiesxx

 

My side effects have been: Baldness in patches, feeling angry at times...but Im convinced its wearing my wigs that makes me a bit stressed..slightly altered sensation in the skin covering my lower legs,  less toilet visits, unless I keep my fluids up, the first cycle, I had a few sore bits in my mouth, but gargled with very dilute sodium bicarb and that went away( 1teasp in a glass of water in 24/24, kept that in a bottle and used it when neccessary)

 

i dont have any antisickness meds before the drip as found it made me very panicky...I do inject with neupogen/filgrastim to boost the white cells.

 

love and very best wishes for an easy ride and great resultsxx

 

 

Moijanxx 💚💙💚

Member

Re: erubulin

Thank you everyone for your good wishes, yes Moijan Thursdays it is😕. Good luck Andrea, hope this treatment is good for you, yes not looking forward to the hair loss again, I need to get my cut off as it's really long at the minute 🙈

Member

Re: erubulin

Or good luck on Thursday even Linda...

A xx
Member

Re: erubulin

Hi Ladies, hope you are all doing 'ok'.

 

I start my Eribulin on Wednesday, it's really good to know the side effects don't seem too bad (well except for the hair) - Capecitabine was horrendous for me.  I'm going to have my hair cut short on Tuesday so that when / if it comes out it's easier to manage

 

Good luck on Wednesday Linda

 

how many have you had now Moijan??

 

Andrea xx

Community Champion

Re: erubulin

Hi ladies

Just butting in here! My onc told me on Thursday that NICE have approved eribulin (and also Pertuzamab) recently  - possible as recently as last week but I can't remember! That is good news for all ladies needing either of these two newer drugs as both seem to get great results.

Hope you are all coping well on this one.

Nicky x

ps by approved I of course mean they no longer need CDF (or its equivalent if it's changed) approval any more.

Community Champion

Re: erubulin

On the first! a Thursday! same day I have my treatment! I do hope things go really well for youxx

 

 

looking forward to hearing all about it 

 

Moijan💙💚💙

Member

Re: erubulin

Hi Moijan, that is good news! Start my treatment on the 1st so will see how it goes.
All the best Linda x
Community Champion

Re: erubulin

Gadsby,

 

Regards your earlier post on this..i have been reading the earlier press and it looks as though Eribuln HAS beeen passed for general use on the NHS, wonder why my onc said that a break of 6 weeks means you cant ever go back on it...due to the rules? Perhaps its filtering hrough slowly?

 

anyway..its all good news. Hope you are doing ok?

 

hugs, Moijan💚💙💚

Community Champion

Re: erubulin

Hi Marnster!

 

lovely to hear from you! Hope you enjoyed your holiday...an inspiration to me. Where did you go?

 

yes , my hair did that too...but its stopped now...havent shaved, just have a very thin layer left! All hidden under wigs.

 

glad the s/e are not too bad...havent had to take any antisickness drugs lately

 

hugs,

 

Moijanxx

Member

Re: erubulin

Hi all - good luck with getting started on erubulin.

 

I've only had one round so far and it's been ok. Have felt a little queasy from time to time, but I've worked the whole way through treatment and just been away on a 10-day holiday between ending round one and starting round two (which is happening on Wednesday).

 

Unfortunately, my hair did start falling out just over a week ago and it is falling out more rapidly each day so I am going to go for the shave tomorrow. I rolled over in my sleep the other night and ended up with a mouthful of hair - very unpleasant!

 

My hair isn't hugely long as it's only been growing back since the start of the year, but it's enough to be annoying that you're dropping hair every time you go somewhere.

 

I think the best thing about erubulin for me so far is that the treatment takes a lot less time than previous I/V chemos. Of course, oral chemo like capecitabine would be more convenient, but that wasn't an option for me because I did six rounds of it as a preventative measure and I was diagnosed with my secondary cancer just after I finished those rounds.

Community Champion

Re: erubulin

Gadsby...I see what you mean about the other new thread...you can go in and delete the title...if you wanted to..I think this thread has been going for a while.I i started one re needing a chemo buddy and find its very confusing going back and forth, too.

 

see how you feel about it.

 

Moijanx

Community Champion

Re: erubulin

Hope so, but wont hold my breath...very expensive drug and Ibrance has a more impressive record....

however, im very pleased with my progress so far. Good luck with your treatmentxx

 

Moijanx

Member

Re: erubulin

Hi Moijan, you are right, it says its set to be approved so we will see.
Community Champion

Re: erubulin

Hi Gadsby, i dont think so.......i was told this last week,  that drug fund rules apply. Its very expensive.

 

i think up until recenly, it needed three failed chemos...now you only need two before you can have it on the drugs fund.

 

Moijanxx

Member

Re: erubulin

Sorry also posted as a new topic post, just getting used to the site 😉
Member

Re: erubulin

Moijan isnt Eribulin now available on the nhs, thought it was passed last week x
Community Champion

Re: erubulin

Hi Andrea,

 

so sorry that the bc has again raised its very ugly head!  Yes, I was in shock when mine came back...and then they said it was throughout my liver, plus in my spine. Mine came back after quite a few years tho,so  it really isnt fair that yours was so quick.xx. I too pop into the bone thread.

 

i can only say that for me...Eribulin has been a really easy chemo. My two ex chemo buddies, had a few problems,  I havent had any sickness,...just an occasional sore mouth (but not very), slight numbness of my legs which has gone away. My hair has gone the way you described...really strange!

 

I had EC in 2001 which was a bit of a nightmare probably the ec bit of fec? i had it pre op to shrink the tumours, which it didnt...just shrank my hair growth! Postop I had Taxol...which made me lose my hair again

( as I had so many axilla l/n involved.)

 

taxol was very fierce and my feet have been numbish ever since. I also got nutrapenic on that!

 

i do hope you have a good response to Eribulin and no nasty side effects! Will you be trying the cold cap?

 

Looking forward to hearing how it goesxx

Moijanxx

 

 

Community Champion

Re: erubulin

Hi Linda,

 

i wasthinking about breaks myself! But as its on the drugs fund...if i had say more than 6 weeks break, they would not be allowed to put me on it again! Something about the rules!Frankly Eribulin has worked wonders for me so far.

 

my bc became resistant to, cape( after a very small beak of three weeks) also Letrozole.. And vinoralbine stopped working, so its a dillemna for me.- am worried that the next drug might not work! 

 

re the cold cap, why dont you try it....quite honestly I was really worried about losing my hair...when I was 10+ years younger, i didnt mind .too much. This time I was having panic attacks( because of the i/v antisickness drug) and thiught it was the cold cap, which was on for about two hours....so I stopped the cold cap. Then my hair started falling out and now its thinly spread and wispy, so using a wig! And I do mind...very much.

 

i hope you get a good run with Eribulin.....and am so glad to have some new buddies to share withxx. (But obviously, im sorry you have got to the same point as I)

 

best of luck xx

 

Moijan💜💚💜

 

 

 

Member

Re: erubulin

My son named it - predictive text
Member

Re: erubulin

Hi Moijan and Linda, I'm a little nervous about this. For original BC I had FEC-T (3 of each) - I did cold cap and only kept a little bit of hair (a bit like a monk, bald on top. Had nothing since May 2015 and then...

 

Found liver mets so had one dose of Cape which didn't agree with me (2 weeks in hospital on a drip). In that  time liver mets increased. Having a port fitted next week (if appointment comes through) and start 30th November. Not looking forward to loosing hair but I still have my wig (Natasha - my son babes it) and a variety  of hats and scarves.

 

i coped quite well with FEC (2-4 days out of action, a couple of not good days and then 2 weeks where I could  usually be not too bad) the T bit was pants...

 

It's taken me 6 webs and I'm still not back to 'normal' after one dose of Cape so I have Chemoxiety (yes I'm making words up).

 

would love to keep in touch. I also go on the bone mets site as there are a bunch of lovely ladies on there.

 

Andrea x

Member

Re: erubulin

Thank for your reply, was wondering whether to try the cold cap didnt when on Fec-t and lost all my hair, found that very hard! Just scared after how awful i felt on Docetaxol, Cape was ok just usual side effects, bad stomach etc but prefer that to the constipation i had on the others. Been told Erublin is like cape, you can stop on it till it stops working, do you get breaks in it like in cape? Thanks Linda x
Community Champion

Re: erubulin

.

hi there Andrea and Gadsby, welcome to this thread. And to Eribulin. How lovely to have some more new chemo buddies!

 

 

Gadsby, am sorry to hear about your previous failure on Cape, I went through the same. 

 

i have honestly found Eribulin to be a very easy chemo to be on. .

 

Some ladies have tried the cold cap..you have to start it at the beginning...and some hospitals dont offer it as they say its 50/50 wether you do lose your hair, so you could enquire if that is possible, if you wanted to. I had it a couple of times, but stopped as it more than trebled my time in the unit..

 

looking forward to hearing how you all get on with it

Hugs, Moijanxx

💜💚💜

 

 

 

Community Champion

Re: erubulin

 Gatsby, I haven't had this chemo, but I'm sure you will here back from one of the ladies. It can be quiet on the weekend. I'm sorry your previous chemos didn't work out very well. I hope this one kicks butt, with few SE's! FF

Member

Re: erubulin

Hi everyone, looking for any tips about Erubilin, starting it in a couple of weeks, Capecitabine has given up on me after 8 months, previously had Fec and Docetaxol, Fec never worked and found Docetaxol really hard as had allergic reactions to it. Wondering how people are coping on Erubilin.

Member

Re: erubulin

Hello there Ladies, hope you are still using this thread. I'm starting Eribulin on 30th November.

Andrea xxx
Community Champion

Re: erubulin

Sounds as if you are doing well. Im on the same dose.

lets keep in touch and see how it goesxx

 

Hugs, Moijanxx

Member

Re: erubulin

hi, just wanted to thank you for all the Eribulin info you've provided it's been really helpful.

 

I've done my first two sessions on a 75% dose and am now on my 'week off', due to have 100% dose on 14th and then continue until scan in the New Year.

BC Secondaries in liver, and lymph nodes on aorta.

 

So far so good, just tired, thrushy throat and hair falling out but having previously had really bad reactions to FEC, Docytaxol and Capetacibine this drug feels manageable.

 

hope to chat again, not many people seem to be on Eribulin so a bit difficult to guage reactions

kindest xx

Community Champion

Re: erubulin

Ooh! Thanks for that Carolyn. Need Some company on here. Had my share again today. Feeling good so far

 

Moijan💜💜💜💜💚💜💜💜💜

Member

Re: erubulin

Hello eribulin ladies
Daily mail page 25 ...Confirms now available to all ladies in UK ( including scotland) that have had two failed chemos.
Says its the first new drug in a decade made freely available to about 1500 more women.
Fingers crossed more drugs will be available soon.
Xxx
Community Champion

Re: erubulin

Hi Helen

 

thank you for your post too. Yes it is very strange..because I was the only one on Erib until you both joined me... But I got used to chatting about it with you both. i see and chat to lots of lovely ladies when I go for my treatment, but none on Erib...actually many of them are on much nastier drugs, or are there for several hours. Yesterday there were a few men in there too.

 

yes, both of you have a peaceful weekend. Im meeting a sister of a very dear friend who died recently...tomorrow, she wants to keep in touch as we both miss her. 

 

Everybody...have a nice weekendxx

hugs, Moijanxx

Community Champion

Re: erubulin

Hi Sharon, lovely to hear from you. Yes, it is odd nothing came out when she tried..I think bottles have really good suction, a. Bit like the blood bottles..they too apparently have suction and I never realised..just thought the blood ran out..silly me.!

 

Havent read the other thread, but did they get a lot out in the hosp when you had this drain put in? Was thinking maybe the fluid has slowed down a bit in production.?

 

Are you now feeling a bit more peckish? I do hope so. Anyway not too much salt if you can manage that. Also, still good to drink load of water as that will flush out the kidneys and help with the blood situ.

 

Re the injections, I always thought id hate to have to inject myself, but now im much happier to have control of the needle! Once the district nurse has helped you to manage, you will have a little more freedom...I go away with my syringes, in fact I want to be able to go to Oz one day taking the syringes obviously, which I couldnt do if I depended on other people. My partner hasnt been shown how, but he did help when I broke my wrist....I needed him to hold the syringe whilst I pushed the fluid in as couldnt use my left hand!

 

do keep in touch, you are always in my thoughtsxx

Moijanxx

Member

Re: erubulin

Awww Moijan..maybe you'll get some new Erib buddies soon :-) Always here for you of course and am going to make appt with GP to see what he thinks about the numb knee in case I can stay on Erib after all p,us am gonna ask the onc.

 

scratch.. glad you are well enough to post. Strange nothing came out. I think the district nurse are an amazing service. I see one every week to flush my PICC and take bloods and she's really lovely.

 

hope you all have a lovely warm relaxing weekend ahead. Much love

xxxxxxx

Member

Re: erubulin

Hi moijan you hold the fort on the eribulin its working well for you
Still recovering nurses out every day to give blood thinning jabs I cant bring myself to do it yet and my husband hates needles too..they tried to drain this thing today but nothing came out
❔ wondering if there none there .she used a bag next time she will try bottle as its got suction
.oh well all gross.but the bit outside is not very obvious.love Sharon x
Community Champion

Re: erubulin

Yes,. Itsfunny but im feeling quite lonely, wheras before they joined me i was finel

 

😓

 

Moijanxx

Member

Re: erubulin

Hello moijan
I was thinking that too ..both your eribulin playmates Helen and Sharon have left you on your own now .
Xxxx
Community Champion

Re: erubulin

Was sucking up the Eribulin  again today( loving every second) looks like im all alne in the world on this treatment!

 

Moijanxx

Community Champion

Re: erubulin

So Eribulin is hitting the spot for me...but they still want me to stay on it!

 

moijanxx

Community Champion

Re: erubulin

Wednsesday is D day!  

 

Its really funny, because we all chat here, about worries when lying in the scanner....I dont usually worry, .....

but when I couldnt hold my breath long enough and they said..nothing is different...I thought...oh, what if now ive got lung mets and they are affecting my ability to hold my. Breath? , then..I thought what if. My liver. Has swollen up leaving less space to breathe in? Both unlikely but not impossible scenarios!

 

it just goes to show,just how the brain plays tricks on us and we have to worry, without the smallest bit of evidence.......?no wonder the new ladies get so very scared. I just started to go through some plans for the evening, in my head and the thoughts went away.

 

have a good few romantic days awayxxc

Moijan💙💚💜💚💙

Member

Re: erubulin

Hi Moijan, ooh sounds like you did well to handle the MRI with those tight straps. When will you get the results?

helen xx

Community Champion

Re: erubulin

Had my MRI This pm.  Went ok, but a little nerve wracking, apparently I moved( when I was convinced I wasnt moving) and then the chest straps were too tight and I found it hard to breathe in and hold my breath.

 

Then afterwards, my arm wouldnt stop bleeding! I never usually have problems!

 

the radiogs said, interestingly, that there has been a decision this week that from now on, every evening and every Saturday there will be MRI clinics...as the demand is so very high! Well, theres a thing!

 

Moijanxx

Community Champion

Re: erubulin

Hi Helen, sorry to hear that..your onc sounds as if he is really looking at you as a whole...which is really nicexx 

it may be, too that Eribulin could be revisited later if you needed to. And also Cape is an excelken drug, which will give you much more freedom....eg no canulas etcxx how I miss tnat freedom! 

 

I am off for an MRI, to find out if Eribulin has done the trick for me......Tomorrow!

so fingers crossed, maybe I will be joining the 'unplugged' group??

 

love and hugs Helen

 

Moijanxx

Member

Re: erubulin

Sharon I hope the drains are in and you have some relief.

I saw the onc today - because of the numbness in my knee which has not improved after a 2 week break, I am saying goodbye to Eribulin :-(

Bit gutted but he is concerned. So, I'm off to join the cape crusaders as he thinks I should try that next. Also he said he is still so unsure about he lungs - I asked him why I am different to others with king mets ans he said the deterioration that I had was different - everything about my condition is symptomatic of asthma but the asthma drugs don't work. I don't have plural effusions or lumpy masses of cancer, my lungs are just 'cloudy' and they don't know what it is but suspect cancer. Anyway, obvs I will drop in and chat to my lovely Erib friends but will be hanging out on cape thread too.
Xxxxx
Highlighted
Community Champion

Re: erubulin

Hi Funnyface,

 

hope things are  a bit  better for you now.  Thank you for getting back to mexx

 

Moijanxx 

Community Champion

Re: erubulin

Sharon...very best of luck tomorrow. You are in my prayers and thoughtsxxxx

 

we are all thinking of you, you are so important to usxxx hope you feel better soon

 

Moijanxxx💚💜💙.

Community Champion

Re: erubulin

Moijan, Sorry, I have no info on ciprofloxacin. Not familiar with it. I do take magnesium oxide, because of terrible muscle cramps. I had blood work and was low in it.

Community Champion

Re: erubulin

Hi SharonHelen/funnyface!!   Sharon, ooh so you had the same drug? Well I rang the registrar yest and she said urine spec grew no bugs, so I could stop. Have a funny feeling in my tongue and fingers were pricking.

 

have done soook much research about this drug...Im interested in FunnyFaces comments on Ciprofloxatin, be ause the USA. Issued a black box warning about it!   I have discovered why people sometimes have tendons go....the drug blocks an enzyme which is needed - needed to relax a muscle after excercisr. So the.muscle stays in tension...the tendon is what joins muscle to bone. The drug also. Changes cells in the tendon.....and sonetimes it snaps.

 

i. Have also read that magnesium is a healer,but wouldnt swallow it myself, *. might rub some oil in.

 

* as on chemo.

 

am going to just hope im not unluckyxxxx

 

Sharon, hope you get an earlier drain...love and hugs.

what are you eating now then? 

 

💙💚💛💜💗💖💓🎈💥🎀

Community Champion

Re: erubulin

Sharon, I'm glad you called. I understand you don't like the idea. I just want you to get some relief. We all have to accept so much change, and the new us! It is daunting! I'm sure most of us want to stomp our feet and scream I want me back! Useless so I'm just going to scream for ice cream! FF

Community Champion

Re: erubulin

PS::

My mother always swore by hot water to help with stomach pains I drink lots of it  maybe it could help a little.

xxx

Community Champion

Re: erubulin

Sharon

I shall be praying the phone call comes soon for you Heart

Love and ((((hugs))))  xxx