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Chemo Buddy Needed - Anyone Currently on Eribulin?

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan and withasmile Hi to all and welcome all you newbies

sorry I have not been on time just flies just to let you know I got my tumour markers yesterday and they are down to 34 not good good but not to far away from the 30 top limit and I know it is does not really mean a lot in regards the cancer but at least it shows the treatment is doing something I was aware it was on my sternum but I still have to wait till cycle 8 for ct scan (can not get me in ) i have told them on this forum they have had them at 3 months 4 months and 6 months which I have always had on previous chemo and even though no hormone tablets gave worked more than 9 months on me I always had scan at 6 monthly intervals and with chemo it was 3rd cycles and 6th cycle well just finished my 7th so week off next week then start cycle 8 at the end of that have scan so will be when cycle 9 finishes I should get results but I doubt it as the oncologist only comes on Mondays and it will be bank holiday Monday so no clinic till following Monday which I will be on cycle 10 but sometimes my bc nurse rings with results or if she is due to come she will fetch report if it has been done 

hope every one enjoying the weather 

take care 

 

Kay

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Jacqui

Hopefully your wbc won't be too badly hit by the eribulin, unfortunately mine was and I'm now on the injections to boost them, but only after the day 1 dose. These do affect me but I know what to expect now and once I've finished with them, day 5, I pick up and have no problems with the day 8 second dose. If your wbc does get too low it is a pain to have the chemo delayed. My first cycle was like that and what with Easter in the middle of it I think it was about 35 days not 21! As to foods that boost the blood counts I'm not sure but someone else may be able to help.

Lori, I'm not sure if many of us have taken breaks, such as you mentioned, whilst on eribulin but hopefully anyone that can help you will be along soon. I did take breaks on Capecitabine when I was on it a few years back but it continued to work well for 18 months or so until the crafty C got used to it and it stopped working.

Hope everyone is coping with any side effects and that eribulin is kicking the little uggers into touch.

Nicky x

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Tessa! You are right. That was my experience of Eribulin. Dose on day one, dose on day eight, take a break on day 15 and then you're back to the start to repeat day one, day eight, break on day 15. I definitely found Eribulin milder than the other chemos I've had, but make sure you're vigilant about any possible side effects and don't get lulled into a false sense of security that it can't be the chemo that's making you unwell (if you do feel unwell) because it's so mild and such a small dose! It's great how quickly you can have it too. When everything runs smoothly, it means you can sometimes get in and out in an hour. I am definitely envious of that now as my sessions seem to have blown out to five to six hours again on my new chemo regime. Best of luck with your treatment. 

P.S. Jealous of your new kitchen too!

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi ladies,

Sorry for the delay in responding but thank you for your replies to my post of 29.6.17.  It has been a hectic few weeks; had a new kitchen fitted which looks fab, i am like a child with a new toy and it was my son's 13th birthday, so another stroppy teenager to deal with Smiley LOL

Had my first dose of eribulin today and you are right it is a totally different experience to others.  It literally took 5 mins for the dose to go through, took them longer to get the cannula in.  Feeling really good, hopefully still will after next (Day 8) dose.  From reading other posts think I have misunderstood the frequency of doses.  I thought it was Day 1, Day 8 first cycle then 1 dose every 3 weeks but now think each dose is a Day 1 and Day 8 with a 13 day gap in between! Is this right??

Teresa xx

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi All

 

Can i check has anyone been taking any supplements whilst on Eribulin to help keep their white cells up, I'm loathe to have to do that whole daily injection again?

 

Many thanks in advance

Jacquie x

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi again Lori,
Meant to say, great news re your treatment response, it gives me a real pick up to hear you are getting a good response with this drug.
Jo xxx
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Lori,
I've had lots of different treatments and some of them have definitely made me very emotional, particularly feeling low and tearful. As much as possible I tried to just have a good old blub, choosing my location as appropriately as possible - there's probably a few fellow dog walkers who must wonder what's up! Once I'd had a cry it would often pass, I could put it down to the drug (& cancer!) & then move on.
Hope you have a fab holiday, I've not started yet but am planning to take a trip during my cycle two, my Oncologist has said it's absolutely fine to go.
Best wishes, Jo xx
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello everyone! 

 

Hope everyone enjoyed the weekend!

 

I have two questions...

The first is regarding something I read a few posts ago about feeling a bit irritable during your off week. I am in my off week after my 4th cycle and I can't stop crying...I have quite a bit of stress on top of the pesky cancer, but I've not really experienced this kind of breakdown since starting Eribulin or on any of the other drugs I've taken. Has anyone else experienced anything like this or am I just losing it?? 

 

The second question is about taking time off. I am going on holiday (which makes my crazy sadness every more confusing) on Wednesday and won't start cycle 5 until July 25th when I return. Has anyone else taken a few weeks off? Any good or bad effects from taking the time off? I'm nervous to not have it for a month, but I am also desperate to get away. 

 

Any insight would be so helpful!

 

Thanks, 

Lori

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Mahsa, 

 

Sorry you have to join the group, but I do hope the Eribulin helps your aunt!

 

I've just finished cycle 4 and I feel like this drug has been a blessing. I had ascites that, in my opinion, was pretty bad. The nurses would laugh at me when I went in to be tapped because, despite feeling humongous, I am all of 5ft and 108lbs (at the time), I looked like I just had one cheeseburger too many. Typically, tho, they would get 3+ liters each time...and I was going in once a week. It didn't take the Eribulin long to dry up the ascites, tho, and I haven't had to be tapped since the beginning of May. 

 

As some of the ladies have said below, my dr put me on this because my liver had also gotten serious...but, after 4 cycles, I have put on 12 lbs (good and bad lol) and feel more and more like my old self every day. 

 

I hope that helps some!! 

 

xo

Lori

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi everyone,

Glad to have come across this thread. 

My aunt's just gone on Eribulin after coming off a trial due to elevated bilirubin levels. 

Her bilirubin levels continued to go up after the first two 1.1mg/m2 sessions of Erilubin on days 1 and 8. 

She currently has jaudince and ascites. 

I wanted to know if anyone else went on Eribulin when at a similar stage wtih her liver tumours and if the chemo helped at all. 

Thanks, 

Mahsa x

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi ladies and welcome to all new starters on eribulin. I am about to have cycle 5 next week (with dose 2 the following week). So far so good with reduction in liver mets including the one growing on the recent treatments I had been on. So much so that the recent CT scan only mentioned one liver met whereas I know I had other ones before I started. So they have presumably responded as well and are now too small for a CT scan to pick them up. Phew - makes it all worth while.

My experience of fatigue is I feel more tired after the first dose (day 1) but I'm sure this is down to the filgrastim injections that I take just before that dose and for 5 days after. However these seem to be working and keeping my wbc/neuts high enough not to need any delays in treatment. After I've finished with the injections on day 5 I generally feel fine and don't have a dip after dose 2 (day 8) and feel so much better in my week 3 - ready to start all over again! In fact the last 2 cycles my OH and I have managed to fit in a couple of holidays in Europe to make the most of the week/10 days when I feel more 'normal' and have walked a fair amount on both occasions where we have been sight seeing. I also find a short walk, not too strenuous can help whilst on chemo - on the days you feel up to it. It really helps lift me up to get some fresh air especially if I manage to get out relatively early in the morning.

Hope everyone is able to enjoy this lovely weather and its not getting too hot or uncomfortable.

Nicky x

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Jo, 

Yes am a couple of days in and still feel fine. Think it will be after day 8 dose on Friday that it will hit me. So long as I can do something every day to keep busy. Knitting baby things at the moment for my daughter's friend!

Hope everything goes ok for you.

 

Liz x

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Filgastrim even x
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks so much withasmile, that's so helpful. I did 8 cycles of chemo in 2014 & your words reminded me at how good you get at planning around energy levels! Xxx
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks Moijan, that's really helpful, I'll google filgistrim xxx
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hiya JoannemarieP

 

this was my first forum and i'm pleased I found it- I think it (and Moijan) 'rescued' me from many dark moments!

 

My day1 was a Monday and I was rarin to go on the first few days and had a slump on Thursdays, and then picked up again for the weekend and ready for the next cycle.

I was more tired on week 3 than I'd hoped/expected but seemed to get used to that quite quickly and if I made allowances I could do something constructive each day.

 

Good luck, this is the place to ask if you need any info

xx 

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Wishing you well with everything Bousy and hoping Eribulin is THE drug for you!

Sending kindest thoughts, and the most positive vibes I can muster

xx

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi JoannemarieP,

I'm in the same boat as you. My liver is getting serious, also have it in lungs and bones. Just had first lot of Eribulin this morning. I don't know about fatigue, will have to see how I get on. Second dose next Friday. Good luck, I'm hoping that this is a wonder drug. 

 

Liz x

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Just had day 1 of cycle 1 of Eribulin. Hope this one works! 

 

Liz x

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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?
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Having CT scan after 4 cycles. Only ever had one MRI on spine. Suggested taxol if this doesn't work but worried about bowel with that one.
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks Moijan.

I have been on denosumab since secondary diagnosed. Had rads at Christmas for spine which got rid of terrible pain. Not too bad with pain at the moment.

 

Liz x

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Bousy, excellent attitude!

 

well done...I, and im sure everyone else, will have our fingers, toes and legs crossed for you.

Will they mri you every three cycles, do you know?

 

Mxx

 

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

I had docataxel in January 2016, after being diagnosed with secondary in September 2015, but after second dose had perforated bowel, which was touch and go. Didn't start chemo again until October 2016, when I had 5 cycles of cape till February this year. Tumour on liver got worse. They put me on faslodex till now,. Tumour marker dropped 3 months ago but now have more mets on liver plus one on right lung. Also have in spine, shoulder and pelvis. Really want this to work, I'm being positive!

 

Liz x

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

I see oncologist tomorrow then start Eribulin on Friday. I just hope this is the magic drug I need as nothing has worked so far.

 

Liz x

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

If any help to your mum, my hair went thinner but I didn't lose it like I did with other chemos.

My eyebrows went and alas so did my eyelashes- they upset me more than my hair!

x

 

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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 ....
Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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💚💚💚
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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?!!
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hi Joellek

 

sorry to hear about your mum but please tell her its nowhere near as bad as her previous chemos, and the hair loss is not total- most of us have coped well with a scarf here and there, a short crop, or a topper.

 

we're here to support you as you support her through the journey

xx

 

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

 
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hi Kimmy,

 

I'm glad cycle 1 went well for you and wish you luck for 11th July.

I also have a port fitted after trying to do without for years, and its the best thing! It makes everything sooo much easier and takes away the pressure of playing will they/won't they find a vein for bloods and scans and chemo.

 

Eribulin has dramatically slowed my liver secondaries, so much so that I'm allowed a break at the moment. I hope it works as well for you

 

xx

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hi all, and welcome Bousy and Tessa!

 

Its a good drug Teresa and Liz and if you've had other chemos previously you'll enjoy the easier regime. As Moijan said, week three can be a bit of a surprise tetchiness-wise , seems to be a build-up of chemo and tiredness. I've found it better to accept I might be a bit glum but it passes.

Wishing you both lots of luck.

 

We're all here to send good thoughts and answer questions or worries. I've found its a really helpful group.

 

Sarah, so pleased you're now 'stable'.

I had six cycles and my stomach lymph node mets and liver mets were stable enough for me to take a break with CT scans every eight weeks.

 

Have a good w.e everyone

xx

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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💚💚💚
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

 
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Welcome new spongebobs (we've been labelled this by our lovely Moijan, who has been on this the longest, as I understand the drug was initially derived from sea sponges - in case you wonder what on earth we are on about!)

There are quite a few of us on this drug so I'm sure there will be one of us able to answer any questions you might have. If you read back a few pages I think there are some posts, especially from Moijan, which say what side effects we've had, not that you will necessarily get them all. I think all of us have found it quite tolerable regarding side effects but do get some of the listed SEs, quite often you can something prescribed by your oncologist to help with any SE that is causing you problems.

Nicky x

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi everyone,

 

Am joining the Eribulin gang next week after Faslodex not working. Hope this works as have new mets have appeared.

 

Liz x

Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi everyone,

 

Am joining the Eribulin gang next week after Faslodex not working. Hope this works as have new mets have appeared.

 

Liz x