Chemo Buddy Needed - Anyone Currently on Eribulin?

[JoannemarieP]

Filgastrim even x

[JoannemarieP]

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

[JoannemarieP]

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

[JoannemarieP]

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

[Moijan]

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

[withasmile]

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 

[withasmile]

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

[Moijan]

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

[Bousy]

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

[Bousy]

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

Liz x

[JoannemarieP]

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?

[Bousy]

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.

[Bousy]

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

[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

[Moijan]

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

[Bousy]

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

[Moijan]

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]

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

[withasmile]

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

[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 ....

[Moijan]

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💚💚💚

[Ladycady]

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?!!

[withasmile]

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

[Moijan]

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

[joellek]

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

[helen44]

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

[withasmile]

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

[Moijan]

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

[Kimmy1]

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

[withasmile]

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

[Moijan]

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💚💚💚

[sarah66]

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

[nicky08]

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

[Tessa]

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

[Bousy]

Hi everyone,

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

Liz x

[Bousy]

Hi everyone,

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

Liz x

[Moijan]

I dont know Kay, so many ex nurses and nhs ladies seem to have bc or other. I read somewhere or there was a book...said cancer personality = too nice...think we all give so much to. Others and then may e get low on energy for ourselves?

i realise that we could be in the minority on BCC Tho...as we. Know, noone is immune.

my breast surg cons died of lung. Cancer..he was such a sweetie...in fact he was really the lead in BC in our hosp. 

Anyway Kay, i do know how very hard it is to push when you are ex nhs, you feel you have to be a 'good patient' never mind.

love and hugs.....

Moijanxxx

[pussy]

Hi Moijan

mine are all behind my silicon implant that I had done after mastectomy and down sternum they have pushed my ribcage over to my left side I know the one on my lower left right side as shrunk and the one trying to come through skin on sternum as not grown and I think the one at top of sternum as also but as I had multi tumours in one capsule of liver and in the other capsule a 7cm tumour I wanted to know if they were shrinking or even gone (can hope) i also have tumour in my spine but that has not moved since radiotherapy 6 years ago plus I have one in node in my epicardial pad fat and under right arm 

the annoying thing is if I offered to pay I  bet I would be in within the week I did ask my bcn when she came couple of weeks ago to chase it up she is away at minute so when she comes back I will ask her to print my bloods off with tumour markers she will have to do first one again because I can not remember I think 94 but I will have to start writing things down 

my friend started her first chemo Monday she is bowel letters got lost down to 6st I at to ask my friend from work specialist colorectal to look out for her in the system anyway she has now been operated on and started so that is good ,

went for pre chemo bloods and my opd manager was in there looking very pale she had breast 2 years ago on aromadex now no chemo just radiotherapy but she now has a new primary lung which she said had gone to liver so I have just sent her a card saying if she wants to talk or just company I would come

said I would not be offended if she didn't she lives on her own and is a private person and not everyone wants to let it all out as I have found out before when I have offered to befriend 

any way you take care 

kay 

[Moijan]

Kay,
That's awful for you.... yes I know there's a queue for mris as they are now considered really good for monitoring a lot of the different cancers ....... I'm picking up that you are worried, can you speak to your bcc and see if anything can be done?
In any case, you could ask if they'd mind you calling regularly to see if there's any cancellation.
On the bright side, sounds as if they are confident that your bc is being controlled...

Do you have tumour markers measured?
Can't recall quite where your mets are.... mine are in the liver and bones......

Anyway, have a chat with the bcn, if you can
Let us know how things go
Xx

[pussy]

Great news Nicky long may it continue

Kay

[pussy]

Hi Moijan 

thats good then at least it is buying you some time 

i on the other hand have just completed cycle 6 expecting scan that they put through after cycle 5 guess when I will be having it mid August that will be after cycle 8 I am very disappointed as I wanted to know if  the ones on my liver are shrinking but I suppose on the scale of things another 2 months is nothing but at least I could have settled a bit (hopefully) I do not know why it is 2 months longer than I  have been told other than now they do 7 days a week I would have thought they had caught up a bit by now I do know there has been a big influx of cancer diagnosis recently so that could be why but even August will have to wait 4 weeks for result unless they have improved on that so prob will have had cycle 9 before I know ct results 

take care wishing you all as well as you can be 

Kay

[Moijan]

Yes, great news Nickyxxx

Mxxx

[withasmile]

whoop-de-doop!!
Good news Nicky, thanks for the update

hope everyone else is coping

xx

[Marnster]

Great news Nicky! All sounds very positive for you and eribulin.

[nicky08]

Hi spongebobs

Just reporting in after my CT scan last week. I have seen the actual scan with my onc yesterday but don't have the written report yet however the main pesky lesion in my liver that hadn't responded to the last treatment I was on has now shrunk - hooray. Not sure by how much until I see the report next week but at least it's not growing! All other mets seemed stable as well. 

Generally not getting any side effects except for a change in taste after the first dose, but not the 2nd. Hair still hanging in there and growing, I'll need it cut soon, but hope some new growth helps cover the baldy bits (they're not too bad and can be disguised with a hairband). Eyelashes and brows definitely thinned so it could be time for some false lashes soon - ED can help with those and says they stay on for a few weeks so wouldn't need to do them every day. I've stopped taking the steroids and don't really have any problems, very occasionally a short spell of nausea but if needed I take an anti sickness tablet.

Hope all other spongebobs are coping with the treatment - and the hot weather.

Nicky x

[Moijan]

Hi Pussy

was their advice as tms still low and Growth very slow...

Mx

[pussy]

Hi Moijan
Sorry to hear you have had some progression though only small you say but that must have knocked you for 6 still
so staying on eribulin is that there advise as well as your own choice
Take care
Kay

[pussy]

Hi Takethatfan

thanks for that I will look into the eyebrow tattoo I do use a good eyebrow pencil by young blood mineral range and one from benefits but though they say stays on for 12 hours mine does not due to being hot most of the time 

Glad you are pleased with your topper unfortunately my hair went apart from the back and sides but that just thinned and I am also an allergy case and one of the ones I am seriously allergic to is parabans  which is in most beauty products so I would have to be patched tested if I did have eyebrows done 

i have just started cycle 6 and this is my bad indigestion day so I can only eat very light today taking lansoprazole before each meal I am also awaiting for date of my first ct scan on eribulin 

take care 

kay