Sigh… The links don’t work (for me) when I click on them, but they do work for me when I copy and paste them into my browser. Seems very random… just like chemotherapy… which works for some people, not for others.
Please excuse the above moan. Today I have been reading up about eribulin and it is amazing that something discovered in sea sponges can be used in development of a drug to treat our breast cancer.
Hi mrsblue
I’ve edited your links so they should work now.
Leah
Thanks Leah 
An old thread (no postings since Aug 2012 but useful info about side effects):
breastcancercare.org.uk/community/forums/eribulin-halaven-ladies
Another older, shorter thread:
breastcancercare.org.uk/community/forums/secondaries-treatments-medical-issues/there-really-knowone-else-eribulin
CRUK info (thanks to Jo BCC!
cancerresearchuk.org/cancer-help/about-cancer/treatment/cancer-drugs/eribulin
(I think these will need editing too - when I try to edit my post, it comes up in plain text then immediately converts to weblinks/URLs!)
Yes, edited those links too so they should work.
I think I need to eat some of my words… I tried the search function again, just to see what happened,
and if the link is displayed correctly, others reading this should be able to use it.
breastcancercare.org.uk/search/apachesolr_search/eribulin
though it was very annoying to be asked "do you mean ‘insulin’? "
Just an update on me. Had my first treatment, which was OK but by the time we got home (30 mins drive from the hospital) I was desperate to get to bed, and I slept almost all that day. Maybe because I’d had an IV anti-nausea drug just before the chemo, or maybe because the hospital hasn’t given me steroids, which I think others have had.
Anyone else on eribulin at the moment?
Haya, I am glad your first treatment went well, it’s very quick isn’t it! I have Dexamethasone ( not too sure I have spelt that correctly) before I have the Eribulin. I felt fine on cycles 1 and 2. Although tiredness seems to be a big thing as I have just finished cycle 3. Hacing a CT scan next week to see if there has been any response to my liver tumours. good luck!xxx
Hi Horsie, thanks for reply from another eribulin SpongeBob ( LOL )
Interesting that you had dexamethasone before treatments. I haven’t had steroids at all, I would say I’ve had mild fatigue for about 3 days after each treatment.
I discussed with my onc the extreme sleepiness, and on my 2nd treatment I was given IV ondansetron instead of IV metoclopramide as an anti-nausea drug before the chemo. Much better, I didn’t feel zonked - next time I might not need anything beforehand for nausea, I do have tablets (domperidone) to take at home if I need to.
Not so good - hair starting to fall out this week - grrr.
I do hope you get encouraging results from your scan.
Haya, Yes, the CT scan was good. I am now a stable-mable!!! Can’t tell you how happy that makes me feel…
Back to your anti-sickness drugs - metoclopramide and domperidone are the usual first call anti-sickness drugs and if they don’t work the the big guns of Ondansetron are bought in. personally I would ask for the nurse to give you the Ondansetron in tablet form and if you feel sick later you have them at home…They are very expensive though, you may have a fight on your hands…
My hair has thinned out, but as it was ridculously thick before it just looks normal, however I have lost my eyebrows and eyelashed…
Just had my day 1 cycle 4 this morning and feeling good so far!
Take care…xxx
Great news on your CT result!! I think we can put up with a lot of SEs if only a treatment is effective for us.
You seem very knowledgeable about anti-emetics, my background is scientific but not medical. Next time I’ll probably say that I don’t “need” anything other than the domperidone tablets - I’ve not had nausea/vomiting problems with my other chemos. I had IV ondansetron before my weekly Taxol, so I knew it wouldn’t send me to sleep.
Hmm, eyebrows and eyelashes - that’s not good news. I lost both on EC but not on Taxol.
Sounds like we’ve been on fairly similare treatment routs. I had FAC initially, lost everything and a complete response to liver mets. Then 12 months on Tamoxifen(grew hair again) showed progression in my liver. Went onto Piclitaxol ( lost hair again) more progression, then Capcetamin( kept hair), more progression. So I am thrilled that the Eribulin appears to be working. I sufered no sickness on the other treatments, this Eribulin makes me tired from about day 5 to 14. I seam to bounce back the chemo-free week and feel a lot better. Again I feel slightly nauseous on this stuff, but like you couldn’t care a less, if the stuff works I can cope with feeling a bit “icky” at times!
Have you had a CT scan yet to see if it’s working?
Love, Laura x
Hi Laura, good to keep this thread going
So you’ve had a complete response ( = liver tumours could not be detected on scan)! That’s great… though sadly they came back. It’s amazing there are so many treatments available for us now… I often think of friends (cyber and real-life) who might be alive today if they could have had the treatments - I’m 63 but many of those friends were much younger. Back in 2006 my CT scan didn’t show anything malignant, but I think it’s possible I had micro liver mets even then (mets were detected in 2009).
Posting today because yesterday the onc told me that my tumour markers are reducing - hurrah for eribulin, we SpongeBobs can put up with our SEs if this chemo is effective. I’ll have a CT scan after the next cycle.
Hi ladies, thank goodness I have found you. As this drug is so new, not even the chemo nurses know alot about it other than it is well tolerated. There are two ladies that have been treated. For one, there was a poor response, for the other lady, where other drugs have failed, she has had a good response. I have been on different threads, when I have been on different harmone/chemo treatments. I recognise the horsie5050 log in so I think we may have chatted previously. I have been on Femara, venorelbine, xeloda, faslodex and taxol. Mixed responses or non at all. The liver is proving hard to target. They have just started me on eribulin today, so I am day 1. I was given a pre-med of ondansatron and steroids. They told me I may have trouble sleeping tonight! I said thats okay, I can always clean the house.
I have secondary BCA. Mets are in my lung, liver, abdomen, chest spine and bones. Taxol finished in March after 18 sessions, I was then put on tamoxifen. Previous bca was 19 years ago. Secondaries were diagnosed 3 years ago in October.
Elainexx
Hi Elaine and Mrs B. Hope you are both ok, Elaine, if you are wondering what to do in those wee small hours when you are wide awake, I can bring all my ironing up to you! I know we have to have these steroids but by golly they keep you wide awake. Elaine, |I hope the eribulin zapos your liver for you, my last ct scan showed stability which I was thrilled about. I hope you get the same response.
Mrs B, let us know how your CT scan goes. I get the impression that there arn’t many of us on Eribulin, so it is lovely to find out how you are all doing and how we are coping with it.
Take care both and try to keep cool…laura xxx
Hi Laura, and welcome to Elaine on this thread for eribulin ladies. It can be a bit daunting being on this newish chemo, but exciting too, there are good reports emerging of how tolerable it is, and how it has a good chance (wish it could be a certainty!) of being effective for us who have already had several different chemos.
Elaine - I know what you mean about the liver being hard to target, I had Faslodex and Taxol (not at the same time, I hasten to add) and neither worked for me. Almost 3 years stability on Femara/letrozole, my first treatment, but then I “only” had bone mets; 2 years on Xeloda. I hope to go back on Xeloda some day… Did you have vinorelbine as IV chemo or in tablet form?
Had bloods and clinic visit today, haemoglobin a bit low, but liver function improving. Other side effects are tolerable. Unfortunately I’m one of those who lost most of my hair - in the middle of the clinic appointment I suddenly take off wig or headscarf to shock the onc! - Was told today that some research (in the US and France apparently) has been done to try and predict which patients are likely to lose hair on eribulin… hmmm, interesting, I can’t imagine how tests could predict hair loss!
Another plus point for this chemo is how quickly it is given, for me anyway - I’m not given (I don’t need) IV anti-nausea drug now, and my hospital doesn’t give steroids with eribulin so the house doesn’t get cleaned, LOL! …well, I do the minimum I can get away with, especially when my blood count is likely to be low, but I’d rather enjoy this summer even if there are a few dusty windowsills.
Hi Mrs B and Laura
Great to get your replys as we are a bit thin on the ground. I have just had day 8. I have had a few other things going on, like nausea, constipation, loss of appetite and what I think is liver pain. Some off the other symptoms were already there. So it is hard to comment on the chemo SE but I think they were mild. I will know better this week I think.
Just to let you know Laura, “I HATE IRONING”, lol. Mrs B I had vinorelbine in tablets form.
I love the fact it id adminstered quickly, bonus. As for hair loss, I am prepared, but I must admit, it is nice to have some and my eyelashes, which I missed so much. Started to feel somewhat human again. Somehow you kinda lose it, a mantle we all wear at times.
I am enjoying the summer, but prefer it a little cooler than 30 deg’s. I agree with you Mrs B Sod the housework and enjoy the days.
Glad your liver mets were stable Laura I will so settle for that.
Love to you both and our continued stability.
Elaine xx
Morning Mrs B and Elaine, I also feel some pain in my liver area but not sure if this is the Eribulin working or liver tumours getting bigger…I suppose we’ll find out soon enough. I have delayed cyle 7 as I’m away on holioday ( we have a home in the Middle East) and nothing will stop me going on my holls! My hair is thinning, but as it was ridiculously thick before it still looks like I havn 't lost any. The wild curly don’t help! I have lost my eyelashes and eyebrows though… My liver function test was slightly high but it’s coming down every week. But my worry is that my Bilirubin level is creeping up… It has been 11 for months and months. it went up to 12, then 14 and is now 16. That is worrying me. ( I know up to 22 is normal) but I hope it doesn’t mean progression…
Elaine - just Fedex your ironing to South Wales!
Take care and hope you have a good week. lauraxxxxx
Hi laura and Mrs B
Have you noticed links for eribulin thread all over the place. I lost mine and I clicked on your hyperlink Laura.
Had a thought that I might be transported to hyperspace if I did this, lol. But I am still here!
Not been a good week for me. Had second chemo on Monday along with my polyfilla (Zometa) for the bones.
Terrible diarrohoea, feeling faint and sickly. Better today though. But still very tender in liver area. I was warned this could happen and liver readings and tumour flare up could get worse befire it got better. My GGT was over 500, but hopefully it will come down once treatment progresses.
Hope you have a great holiday on your return to the Middle East and enjoy to the max and beyond, you so deserve it.
See that rings a bell as well the middle east and South Wales, we have defo met on another thread.
Chemo free next week so I should be okay.
Love and hugs to you both. Elaine
Hi Elaine, I am so sorry that you are feeling so poorly. I hope you perk up soon. What is your GGT? They just tell me that my tumour markers are about 29-ish, liver funtion of 110 and thankfully my bilirubin level dropped today to 8 -yipee!!!
I too am tender in the liver area, lets hope it means the eRIBULIN IS Zapping the buggers!
must go, just trying to sort out flights…
Love to all you lovely ladies. Laura xxxxxx
Dear all on eribulin
I have been an onlooker to your thread but its now the right time to introduce myself and join you as I am starting Eribulin on 22nd August.
My cancer history to date is diagnosis for primary in 2000 with good prognosis!!!
2010 diagnosed with bone mets and then lung mets in 2012. I have worked my way through letrazole,exemastine,and tamoxofin and chemo wise have had EC chemo, followed by Capecitabine, followed by Doxetaxol.
My recent scan showed only partial response to recent chemo and disease progression in my lung, hence going on to Eribulin.
This recent news of progression has been such a shock and feelings of disbelief. I am feeling very well post chemo and enjoying return of energy and hair growing back nicely and wham…more chemo…
I need to be given some hope that this may be the wonderful new drug that has magical qualities to blast this cancer and stop it in its tracks…???
My questions are …what is the chemo like. Does it take a while to kick in.?
Which is the worst or best week?
Have you lost your hair and how many chemos are you written up for?
This is all so hard for us all. I get an enormous amount of comfort being in touch with you as we go through this.
I will keep you posted as to how I get on with the chemo and look forward to hearing from you.