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
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.
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!
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
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??
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
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!
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!!
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 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.
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.