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.
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 😎 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.
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.
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
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
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
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
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.
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.
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
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?
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!
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
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.
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!
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
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
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
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
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?
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.
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
Am joining the Eribulin gang next week after Faslodex not working. Hope this works as have new mets have appeared.
Am joining the Eribulin gang next week after Faslodex not working. Hope this works as have new mets have appeared.
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.....
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
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
Good news Nicky, thanks for the update
hope everyone else is coping
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.