Thank you so much x this is encouraging. I would love to hear more of your experience which I feel would give me some hope. How long was it before you saw a response to Eribulim. Do you do any manual lymphatic drainage for your arm? My hand is like a pudding at the moment but I don’t think there is anywhere for the fluid to go. I wear my sleeve all of the time, except bedtime.
thanks so so much xx
Yes! TNBC most definitely does respond to chemo, mine has been responding very well to Eribulin and I have TNBC secondary met lymphoma. You might be very pleased with the results 🙂
There's another thread on this board - 'Eribulin, chemo buddy needed' which most of us Eribulin ladies post on (some of us for quite a while) and its full of info and tips that worked for us.
The lymphoma is a real nuisance, do you have a sleeve to wear? I find wearing a sleeve when I'm doing anything strenuous realy helps, but I only have it in the arm where the lymph nodes were removed, the other one doesn't seem to be affected.
Hope to see you over on the other thread
kindest wishes x
i have secondary TNBC in my skin and started Eribulim 5 weeks ago. I have just done 2 cycles. I notice no change. The lumps are springing up daily and I don’t have any real side effects.
Is it it too early to see a response? Does TNBC even respond to chemotherapy? I would love to hear from anyone who has a similar experience or has had a positive response to treatment. I also have lymphodema in my right arm, which is a big ‘inconvenience’ and I worry that I’ll soon have it in my left arm as the TNBC is now in the lymph under my left arm.
in spite of this I do look and feel incredibly well. We’ve just come home from a weekend in London and I walked and we packed a lot in, despite having day 8 chemo on Thursday.
Love and best wishes fellow Eribulim and forum ladies. Xx
Hello ladies, i was first diagnosed with Triple Negative breast cancer stage 3 March 2017. I had FEC-T chemo via IV. On the 4th cycle i had a local spread so they added in Carbo. Awful time! if it wasnt bad enough losing my hair, my nails fell off then i was admitted twice with Neutrapenic sepsis.
March 2018 i wasnt feeling great, mentioned this in my routine oncology appointment. in a matter of 2-3 weeks i had a CT scan, followed by MRI's of the neck, brain, liver & spine.
April 6th 2018 i was diagnosed stage 4 metastic cancer with mets to my lungs, liver & spine.
I done 3 cycles of Capecitabine & Denosunab injection.
Had a CT scan last Monday - it confirms lungs & spine have stayed the same but i have a new lesion in my liver.
Tomorrow i start Eribulin/Halaven.
I pray it works on my liver.
I'm not sure how you got on to this thread (as it coud have been through a google search) but the way to find the other thread is get onto the Breastcancer Care website and find the 'Forum' choice on the front page. Once onto the Forum you are presented options about what you want to read about/ask about. Choose Living with Secondary Breast Cancer. In that part of the forum there is a section called 'Treatments and medical issues' and you will see various threads. This one is called 'Eribulin/Halaven ladies' and you will see your post on it. A couple of threads down the page you will see one called something like ' Just started Eribulin, chemo buddy needed' (or similar). This is the most active and current thread for those on Eribulin and you can join in there or read about what other ladies on it, or who have been on it (like me), and their experiences.
Good luck with navigating the forum, it's not easy first off but you will get the hang of it, plus good luck with eribulin.
I just typed out a long message back to you and he laptop died - sorry it has taken so long.
Was only invited to 1 wedding in the end and bought a new wig which wasn't too bad. Now on 2nd 3 month cycle of Eribulin and have lost more hair. Still having cold cap though which haven't found too bad.Mysteriously eyebrows seemto be growing back and some fuzz has appeared on the bald bits of my head.
Thank you for your lovely reply Hope you're keeping well.
Hi Susan and welcome to the forum. As I've said below there is a more active thread going so you may get more replies on that.
My hair thinned dramatically between doses 1 and 2 of the first cycle, although they were quite drawn out the doses due to Easter and also low blood counts. I thought I would chop it all off it looked so bad! Having said that it too has slowed down and clung on there. It looks pretty ropey if I have it uncovered but have found wide hairbands make it look OK. I still have quite a bit of hair at the back but the hairbands hide the thinner bit on top. Maybe it's worth looking at something like this for the wedding? Claire's accessories have quite a range and they also sell brooch type accessories which you could use to add a bit of glamour? I certainly prefer it this way to losing my hair completely which I've done twice now!
As to the tiredness I do get that from time to time but normally when I've tried to do too much in a day. Yesterday I was shattered but today taking it a bit easier and pacing myself which seems to make a difference.
As I've said, have a look at the other thread as well, you'll see more ladies who are currently on this chemo who may be able to help.
Hi simpsol and welcome to the forum. There is another more active/current thread called chemo buddy needed, or similar, can't remember exactly, which has quite a few ladies sharing their experiences of eribulin. Good to hear about your hair. I'm also cold capping it but it is falling out all over the place so I will see if it just stops at the thinning stage or continues to the moth eaten stage!
Hi due to start Eribulin next week so any advice will be welcome, anyone tried cold cap ? Don't know whether to bother or not as I know it will increase the time in the chemo unit. This will be my 6 th chemo , I am TNBC and have mets in the lung and pleura and now a spot on my rib ! Feeling a bit fed up with it all xx
come and join us on the Cancer Buddy/Eribulin thread. There's about seven of us currently taking Eribulin and we've all had different chemos previously.
You'll hopefully find the answers you need and Moijan has been on it for a while so its brilliant to be able to pick her brains and get straightforward answers.
look forward to 'seeing you' over there
This is quite an old thread, which is what happens when a search for a particular drug etc happens on this forum. I'm not sure you will get any answers from the ladies who posted on this thread however there is a current, very active, thread on this front page of the Treatments and Medical Issues part of the SBC part of the forum. It's called something like chemo buddy needed on Eribulin and you can't miss it. There are quite a few ladies now on this newer drug so you can swap stories with them and find out how they are finding the SEs etc.
Depending where your secondaries are there is also an active thread in the Living with SBC section called Bone Mets please join in. Although the majority of us on there have bone mets it tends to be a thread for all mets ladies whether they are bone, lung, liver or elsewhere.
Good luck with starting Eribulin.
Hi folks, I was on eribulin for 7 cycles last year, and I hope I may encourage you today.
For me, fatigue was bad news, but my energy levels returned to normal 3 months after I stopped eribulin.
I did lose my hair and eyebrows, but I'm just beginning to go outdoors without a wig now. (Not rushing to have it cut, I have a scan in April and I might need another chemo).
It's so good that there are all these treatments for those of us with mets (mine are liver and bone).
Have not been having problems with neuropathy.
Just also wanted to say that have had 6 cycles and whilst hair has thinned I don't need to wear a scarf or wig and seemingly you can't tell from looking at it that it is thinner (have been using Boots hair thickening shampoo).
Am interested to know if anyone has continued beyond 6 cycles on this and how long for?
Thanks very much
I am about to start ERIBULIN (Wed 16) and reading the threads under HALAVEN LADIES makes me feel a little more wiser. I had my primary 9 years ago and had FEC Chemo and as some have said, I worked, holidayed and partied like no tomorrow. The Nov 2011 felt a pain in my thigh and afteer some time went to GP cut a long story short as I have Rhuematoid Arthritis a bone scan was ordered and there the little bugger was. Back to Onc who suggested that the little bugger must have been there before my breast Cancer! He is putting a fight, Hormone Therapy didn't work, then went on to Paclitaxel Oct 2012 to Feb 2013 there was improvement. Then back on another Hormone Therapay. Just starting to think about work when CT showed spot on liver went on Capecitabine chemo tablets which has left me blacker than ever especially hand palms and soles of the feet. Recent CT scan showed the spot seemed to have increased slightly. So now here I am a RIGHT GOLLIWOG - hell, I am not a PC freak and wondering how soon I will loose my Michael Jackson afro.
Its hard tyring to stay upbeat but what gets me - I have to go to hospital for them to tell me I am sick, I feel fine, if not a bit more "blacker". For the ladies here who lost their hair - how long did it take to loose it. My hospital they are doing a OBSERVATION TRIAL on this drug apparently it new and have asked my permisson to assist. I am interested in how it affects BLACK PEOPLE.
WHAT WAS THE WORST SIDE EFFECT DID YOU EXPERIENCE AND HOW LONG DID IT CONTINUE?
Think I have rambled on long enough and look forward to hearing from anyone.
Thanks in advance
Hey Mrs B.
Lovely to find you again. Horsie 5050 (Laura) should be back with us soon. She arrives home from the
Middle East this weekend and like me she was unsure how to use the new site.
I have just completed 2 cycles and start No.3. last week, so this week is my chemo free week.
My hair which was growing back, has thinned extensively, but I still have hair on my head. Lashes still
with me at the moment and eyebrows has not returned properly anyway.
My SE seemed to be tummy and bowel problems, nausea, loss of appetite and a bit heady. usual starts
2/3 days after treatment and lasts for 3/4 days. Making me feel crappy really. But hey if it zaps the liver and
all other areas, I can cope. Seeing Onc on Monday for review.
great to be back
Hi Spongebobs 🙂
Here we are on the new forum, I've managed to log in and find this thread... a good start.
Hope you are doing OK... anyone else had sore tongue? I've had it on about half my cycles so far. Not too bad tho at the moment it's worse if I talk a lot! LOL...
I have to gracefully withdraw from this thread and introduce myself on the Xeloda thread. I was at the hospital yesterday at the end of my 6 week chemo break to be told I won't be going back on Eribulin. I'm not starting Xeloda for another 3 weeks though as it seems the onc wants me to regain more energy. So I'm going to enjoy the next 3 weeks and do as much as I can.
Good luck to all who are still on Eribulin, and I hope it works for you. Onc did say that my liver tumours hadn't progressed so Eribulin was doing what it was paid to do.
Good luck to us all.
Hi Chemoqueen, I post on behalf of my closest friend who has been battling multiple secondaries for two years, mostly lymph nodes, a bit in lung and ovary,triple neg. She is having a chemo break having done a year of taxol/avastin during which she became ned, she is carrying on with a maintenance dose of avastin, So it worked very well for her, hope it does for you too. he only side effects she had she felt were related to the taxol, tho some ladies have had nosebleeds i think. try older posts in the 'triple neg sec. and reccurences, I am sure there is info there. Hope this helps, Kim
How is everyone ?
Wanted to let you know that after having 6 cycles of Erebulin Nov - Feb My Oncologist has suggested Avastin. Has anyone else tried this drug ? The Erebulin worked for a while but I have now got nodules breaking out all over my chest & back. Trying to stay positive.
Best wishes from ChemoQueen
I'm afraid I've just been a lurker on here lately. I'll post again properly over the weekend. It's been nice to read your reports.
I've just popped in very quickly to wish tillycat a very happy birthday. I hope your day goes even better than it sounds, which will be wonderful. Gosh, 19 ladies going for brekkie! I don't think I know that many people!!
Have a great day, everyone.
PS I'm feeling a bit better halfway through my 6-week chemo break, and we're off to Nottingham now for a quick overnighter - got a good hotel deal.
just wanted to pop in + say hi, although my eribulin days are now over!
Tillycat- hope u have a fabulous birthday tomorrow 🙂 U SO deserve it so I hope it's a brilliant day. Your friends sound lovely + I hope ur spoilt rotten. The chemo break sounds like a great idea too, make sure u make the most of it but get plenty of rest too 🙂
chemo queen- sorry the eribulin stopped working (it failed miserably 4me from outset)- but glad u have a new plan in place now x
Hope every1 else on this chemo doing ok- grannyscouse etc x
Suzie- sorry to read about ur recent progression. I know wev chatted before + u have given me some good advice re carbo etc. Sounds like we have both had sig progression + decline recently but keep the faith, all chemos work differently so ournew treaments might just make a difference. My experience of eribulin was not good- it didn't work at all- I had major progression everywhere in just 3 cycles. BUT my case is rare, eribulin is hailed as a bit of a wonder drug + most people seem to get at least a few months of benefits. In terms of how u will cope with it as you are feeling so poorly, I found it was easy street + know others who felt the same. Almost like not being on chemo (at least the 1st cycle or 2). My hair didn't fall out so it's not a cert- think the stats say around 50/50. Mine did start to thin slightly in 2nd ycle + it did increase but my hair was thick so was unnoticable to others even after 3 cycles. My brows + lashes gave started tothin even though I've stopped eribulin but I'm hoping the fact I've stopped will mean that will stop. I would say give it a shot+ keep everything crossed. best of luck x
I've started on xeloda last week, been a few delays due to me being quite poorly + breathless but so glad I'm back on chemo now following my disasterous scan results last month. Liver progression hasn't altered liver function thankfully but lungs really giving me jib. Breathlessnes + pain has had me in+ out of hosp but thankfully, I've seen some improvement in QoL the last few days.
Love to everyone, hope the Eribulin keeps working wonders for you all 🙂
Hi Tillycat, thank you for the positive news about the eribulin. I have been in touch with my Onc to see what, if any, other options I have so we shall see. Otherwise I will be getting my first dose on 3rd April.
I saw my GP and she has reviewed my meds today and I have managed 5 hours sleep tonight all in one go! A first since over a week ago. I am hoping that the steroids kick in by the weekend and start to make me feel brighter and restore some energy.
I was 50 just over two years ago now and wasn't predicted to get there. So, I need to stop moaning and get on with things. However, I must admit to be dreading losing my hair again and having the fat face - we are certainly together on that! Have a great birthday, breakfast and shopping trip. They often have sofas and newspapers in the bigger stores these days for hubbies to 'park' themselves, so it may not be as bad as you think, although I think the only thing I have ever successfully bought with my hubby was a pair of leather boots first chemo around! Have fun and thanks again for your imput, it is much appreciated.
Ps chemo queen, no you didn't miss my birthday. It's on thursday. I am going for breakfast with 19 girlfriends at a local hotel. All booked and organised for me so I didn't have to do a thing. They thought I had more energy in the morning which is why it is breakfast 🙂
My hubby is then taking me shopping (something he has avoided doing for 15 years so I don't how that will turn out!) followed by lunch.
I have arranged a party for later in the year in the hope that I might have some hair by then. 50 and bald with a nice round steroidy face seems a bit much to cope with at a 'big' party. X
Chemo queen - so glad your onc has a plan for you. I always feel better when I know what's going to happen next, good or bad!
Suzie v- It does sound like you are having a tough time at the moment. At my hospital they have about 12 women on eribulin and my onc tells me that they have been getting really good results. Most of them had minimal side effects - I am obviously just a big moaner! Seriously though, I struggled at the beginning but once I had the steroids and pain meds sorted out it got a lot easier. I also had a problem with being allergic to one of the anti nausea drugs, once they changed that I felt much better - so I was blaming everything on the eribulin but a lot of it was se's from other drugs. I did have a problem with this particular chemo being quite tough on my liver. It was swollen, like yours but got even more so. I think that your onc putting you on the dexamethasone before you start sounds like a good idea. I was put on steroids after the first session and I had a reduced chemo dose as well. I had a great response to paclitaxol a couple of years ago, my tumour markers went down loads every week but as soon as I stopped it they started going right back up again. My response to the eribulin has been much slower - TM's have gone down very slowly (and not at all for the forst couple if weeks) my onc tells me that he is hopeful that they will be slower to come back up as well. One of the good things about this chemo is supposed to be that if it works then women were found to stay in remission for longer than women on other chemos. I think you should give it a try. It may be that you don't get too many side effects and it works, a win win situation 🙂
I have just come back from seeing my onc. He is happy with my response and suggested that while I am feeling well (which I do, for the first time in months!) I should have a break from treatment. I have to go for a blood test in 3 weeks then see him in 4. I can't believe that I have such a long time 'off' it seems like I have been in the hospital pretty much every week for about the last year. 3 weeks sounds like absolute bliss:-))
hope I am not too laste to wish Tillycat a Happy 50th Birthday. Hope you did something good to celebrate.
As I said on my last message I have had 6 cycles of Eribulin which started O.K. but then stopped working. I am currently having a rest to give my body a break. Onc phoned me last night about 7pm to say she has another new chemo in mind to give me & will talk to me about it when I see her on 16th March.
I was feeling very down but have started to feel better knowing there is something else she can try me on.
Good wishes to all you ladies.
Hi girls, you have another new recruit!
I had my CT scan results today as a result of liver pain in right hand side, referred pain into right shoulder and neck (really horrible, makes me walk like an old woman), nausea, wheezing and peripheral neuropathy down left leg, lower back. Outcome: yes, as I suspected the Capecitabine I have been on for about 16 months now has stopped working!
I was diagnosed with primary in April 2007 at the age of 47. Secondaries in October 2009 and have been on chemo almost non-stop since then. I have generally responded well to all the chemos I have had but it never goes away! Silly to hope so really but....
So I have come home from hospital and googled the drug and read various documents from the manufacturers concerning the side effects and frightened myself silly. My Onc gave me a run down/question and answer sheet for the drug but, as always, the questions start to pop up in your head a couple of hours after the appointment.
I have read through all the posts on here and was quite bouyed up at the start as minimal side effects were reported. However, as time has gone on you are mostly all experiencing pain and discomfort that I ALREADY HAVE!!!! I feel really terrible. Fatigue like I have never had before, been sick twice this week, can't seem to eat/drink much at all without overloading my stomach and I don't even feel hungry.
My Onc has prescribed steroids (Dexomethasane) to take for the next 4 weeks in an effort to reduce my swollen liver - it looks huge! My last scan in November showed no change since the previous March! I was thrilled with Capecitabine and just thought I would have plenty of time on it. The report simply said 'substantial progression'.
So, here I am in a quandry. Do I want to put myself, my family and friends through any more of this crap? What happens after the 6 cycles? Last time I had 'substantial reduction' it was very quickly followed by substantial progression.
Believe me, I am usually very optimistic but I really wonder whether it is worth bothering with this. I am sorry to be so defeatist. Hopefully I will buck my ideas up in the next few days. I am due to have the first cycle on April 3rd. If you click on my name you will see that I have had most drugs on offer. I am weakly hormone positive, Tamoxifen didn't work at all.
Leigh, you have had such a rubbish time but you sound like a fantastic fighter as well as a great Mum/wife x I don't really know what to say but 'hang on in there'.
Hugs and prayers
Love Suzanne xxxxxxxxx