Sorry to hear that you are suffering with neuropathy. If you look back on this thread you'll find that a few of us experienced neuropathy. I had 23 cycles of eribulin during which I had neuropathy mainly in my toes but also a strange numbness in my shins and calves from time to time. No-one really knew what to do about it but when I had paclitaxel afterwards I rested my feet on ice packs during chemo and it really helped ease the neuropathy. It did take an hour though and eribulin is much quicker to administer of course.
Withasmile has taken breaks from eribulin & restarted it so hopefully she might see this & reply, have a look back on the thread at her posts. All the best with your treatment.
Hi, I completed my fourth cycle and have to take a break because of my neuropathy. It’s pretty bad. And I am wondering if you know whether people start up again. If the cancer cells recognize you were on it already and it doesn’t work when you do start up again. I can’t see it it’s resolving very soon. It doesn’t seem like from any of the comments above that people experience neuropathy. Any suggestions are helpful I was feeling great on it and doing really well and am wanting to continue with it. How do I get this neuropathy under control? Thanks 😊
Sorry to hear your stories about hair loss. I lost mine during paclitaxol and only have a very fine amount. I have two lovely wigs one of which i wear the most. Does get itchy after a day of wearing it. Don't bother around house.
Had a bit of a weekend last weekend with high temperature which ended up with a couple of nights stay in hospital whilst they tried to work out where infection causing temperature was. They then put it down to chemo. I had had one dose of Eribulin but not sure it was that. On antibiotics and feeling better.
Unfortunately this meant no second dose of chemo this week. I have to wait until next cycle is due on 14 March. This worries me as to cancer progressing in the meantime.
As to looks from people which I find I get when wearing turbans/hats I just smile at them and think to myself well I might have cancer but here I am out and about and getting on with life.
I didn’t use the cold cap and I have lost a bit more than 50% of my hair if that helps! But the good news is that it stabilised and now after 3 cycles I think I won’t lose any more. There is enough of a fuzz left to have the wide headband look still, as I hate wearing hats. This is the third time of loosing my hair and it doesn’t get any easier to cope with! But the first two times I was bald so I had to wear caps! So this time it is a bit easier than that! Sorry to say though that I also have very few eyelashes left now. That is the pits! However I’ve just got some of the new c-lash false eyelashes for chemo patients in reserve now. I haven’t used them yet though as from a distance smudged eyeliner seems to work! But it needs regular reapplication as my eyes water a lot because of the lack of eyelashes! I’ve also got a real hair false fringe which I also keep in reserve! It matches in quite well surprisingly.
I too just hate ‘that’ look that some people can’t help but give you and I’ll do a lot to avoid it! I don’t want to be pitied I’ve just had bad luck. I still think I’m fitter than a lot of people my age and when challenged recently my onc had to agree! And there are still many good days! Sx
After successfully persevering with the cold cap for 9 sessions of Paclitaxol and being reassured that you don't lose your hair on Eribulin I have lost over 50% of my hair in 4 days.
I know in the grand scheme of things it's minor, but I can't tell you how sad this has made me. Keeping my hair was the one thing I felt i had some control over.
Hey ho will dust the hats off and get used to people looking at me with pity again!!
I relate to so many on this thread, but even though we all have Stage IV breast cancer we are all different. I will start haloven on Monday and will turn 66 during my first off week. I did not start out Stage IV, mine started out Stage II. My colon cancer, however, did start out Stage IV, so now I have two Stage IV cancers. The breast cancer is the most agressive though, now being in breast, liver, and bones. The bones are giving me the most trouble. I have 6 tumors in my spine and have recently found out that it has now reached my skull too. Collar bone, shoulder bone, and rib recently broke due to the cancer, they called them pathological breaks. The ones in my legs and ankles are acting up now making it hard to walk but I'm stubborn and keep on doing as much as I can every day. Right now I'm trying to put a book together for my sons to make it easier for them to find what they need after my death. I feel this will give me a greater piece of mind that I'm done dealing with all this death stuff and can start doing more of the stuff I want to do. It's about to be spring here in the south and I can't wait to start working in my yard again! I've planted so many of God's beautiful flowers over the years and am very much looking forward to seeing them bloom again. Looking forward to walking around flowers with grandson Carter later this month and hoping to get to do the same with my grand daughter Zoey once she can walk, but I've got to wait a little while for that since she's not quite five months old. I've got a lot to live for so I'm fighting this cancer thing with all I've got. Hanging in there for a little over seven years now.
Good to see it's working well for you it's great to hear positive news.
I've had my first circle without any problems fingers crossed it continues. This is the last chance saloon for me so everything rests on Eribulin to sort my liver out.
I haven't walked my dog for so long and I miss it so much, dog walking is like therapy it just clears your head especially on a beautiful day like today.
My mobility was affected by fluid build up and the cape and I've never really got my strength back.
In have sat in the garden for a few hours which was fab.
Hello all, I received CT scan results today after 3 cycles of Eribulin which started mid December. (The first was abandoned though due to low neutrophils and the other 2 needed me to have an extra week to recover neutrophils sufficiently well to continue treatment) But despite not following the best practice standard treatment programme, results still show stable! Phew! I now have three largish liver mets with multiple small liver mets ones too and a single bone met which has always stayed stable from the beginning when diagnosed secondary from the start in feb 2014 (liver and bone.). The third liver met grew when Capecitabine stopped working (sometime after cycle 17 (when a mid may scan was stable) I completed 22 cape cycles in all then a mid nov scan showed the new one which had grown from nothing to 21mm. So in my book as I was not on a working treatment for possibly 6 months Eribulin is very positively working! Double phew! I’ve been completely ‘normally’ well on it too and the only not so great side effect is lack of hair and eyelashes. I’m not completely bald though as it stopped coming out after the first infusion of the second cycle and I can just get away with a wide headband. Good luck to all others now on Eribulin. Take time to enjoy the lovely weather! I’m going to take the dog for a walk now something I had to stop doing while on cape because it made my feet hurt too much and I’ve just spent the last week with my lovely horse too so all good! X
I haven't had any bad side effects from the Eribulin as yet. Had the 2nd yesterday and now have a week off.
Have you rang the hospital? You should if you have a temperature and get them to them to check you out.
The steroids are helping and I'm having days of good appetite and I managed to get up the stairs last night without gasping for breath so hoping a little bit of improvement in my general health. I'm feeling much older than 47!.
Hope you temperature settles but best to get the experts to check you out.
All the best
Sorry to hear your news. I hope Eribulin is the answer for you.
I certainly hope it is for me.
I started on Thursday but havebeen feeling rough since. Headaches and my temperature keeps spiking.
How have you been?
Hello to all you other ladies in this thread.
Have moved from Paxitaxol thread.
About to start on Eribulin on Friday with apprehension. This will now be the 4th consecutive treatment because the other 3 haven't worked. Devastated at more bad news. Oncologist has said today that I won't be going back to work and she will sign anything I need to obtain pensions etc. She is also referring me to Loros. I feel I am at the start of the end.
To be honest this was the news i expected but still a shock to hear it. The treatments I've had just won't get my liver under control.
Fingers crossed this will be the miracle I need. It's hard to understand why some treatments work so well for some and not others.
Off for another cry .
I tend to read threads where I have also had the same treatment/s and offer help if I can. So this is mainly to London1. I was on Eribulin about a year or so ago andalthough it is a very well tolerated chemo I also found my neutrophils were completely floored each cycle. I also had to miss or delay some cycles because of this in the early ones but was put on GCSF injections to boost them for subsequent cycles. I didn’t have any problems after that. It might be worth mentioning this to your oncologist? I also lost a fair amount of hair between dose 1 and 2 of the1st cycle , I mean about 50%, but didn’t notice much if any further loss after that. I had used the cold cap and felt I should carry on with it but I don’t think it helped a lot and there’s no real evidence with this chemo that it does. My hair also grew in length during the 8 cycles I was on it for and some of the hair that had fallen out did regrow during that time as well. I found some wide fabric hairbands in Claire’s (the accessory shop) which I found hid my thinning crown quite well and were comfortable to wear.
Good luck to you, and all other spongebobs!
hi London 1
I've been on and off Eribulin for the past few years- I started back with Moijan in the 'early days' and it worked well enough that I've been able to take breaks at 6-months. I'm just about to start back again next week.
Eribulin is my 5th chemo, I'm stage 4.
Yes, I totally agree with no cancer problems only treatment problems, and yes I too have equine help!
Kindest wishes xxx
Hope all went well with your first Eribulin. I was in for my 4th round yesterday & scan results which showed stable. Stable is good. I hope you get on ok with it & the cold cap (if they let you use it) Jen xx
I am now 66 & was diagnosed with Stage IV Breast Cancer in 2012. It has spread to several areas of my bones, spine, ribs, thorax, & pelvic. I've been on Eribulin, (Havelin), since February, 2018 after trying all other meds that were being used like Taxotere, Arimidex, & even the Red Devil along with several others, all of which were not effective. My last pet scan was done in September, 2018. This is the first time that I showed no activity & the cancer area in my breast has decreased in size. At this point I don't know if I will ever be able to stop the chemo treatments but as long as I continue like this, I am a happy camper.
Hi ladies, especially the newbies to this thread.
I had Eribulin last year and decided to use the cold cap as I had chatted with another lady for who it worked well and she didn’t lose her hair. I really wish I hadn’t bothered. It extended the treatment time massively and I think the reason you have been told you can’t use it is because of that fact rather than for any other reason. There’s no proof it works as far as I can make out, it’s definitely pot luck whereas other chemos it does seem to work well as long as the cap fit snuggly all over. For most ladies the hair loss is between the 1st and 2nd dose of the first cycle and after that it doesn’t get any worse and actually starts growing back. Mine thinned hugely, by about 50-75% maybe, but as I had thick hair to start it was only really noticeable to me. I wore wide, soft hair and, from Claire’s, and had a variety of covers. It’s the only chemo that has made my eyelashes and eyebrows go completely, which didn’t happen with FEC or Taxotere, they really were the things I missed the most. If you do choose to use the cold cap near in mind the Eribulin infusion can be given in as little as 5 minutes once it’s established you don’t react to it, adding the cold cap makes the whole time in the chemo unit around 3 hours. Also you can decide if you want steroids or not, they are not necessary although some units insist on them. I really couldn’t have coped with all those sleepless. Nights so I decided not to have them and i didn’t have any more side effects than others who were on the same treatment. Hope this helps.
Hi C A S
So wanted to keep my “crowning glory” back in 2007 so I used the Cold Cap.
After about 3 weeks I started to lose some tufts at the crown, and as there was the
possibility of burning my scalp and hair follicles I had to stop using the cap. My hair
might not have grown back in at all in that area. Did not fancy the tonsure look.
I ended up wearing wigs, but however “great” and “real” your nearest and dearest might
tell you they look, they’re not you (if you know what I mean). We’re already putting a
face on.My son was 14 first time around. Being seen with your Mum is a NoNo anyway
at that age, but with no/chemo effect hair???!!!
This time round, got a wig. It’s a really good wig. Don’t use it. Threw caution to the wind
and let the chemo (Paclitaxel then Eribulin) do its worst (as far as my hair was concerned)
and hopefully its best to stabilise my cancer. Fortunately my stubby “silvery haze” fits right
in with the new colour trends.
We have enough to put up with. Losing your hair IS hard. In my experience, it comes back.
I seem to remember it was blond before it disappeared though Must be the drugs.
I remember how unpleasant and time-consuming the Cold Cap process was and have
to say that I admire your strength in wanting to continue to use it with everything
else you have to contend with.
All the Best to you and yours
ah, Helen. . .
Moijan was an inspiration to us when we were Eribulin newbies, and always there with an answer when we stuggled.
I felt she had gone when she stopped answering PMs.
Wishing everyone a safe journey with their treatments,
with love xx
So sorry to hear about Moijan but grateful for the update. I've found this thread, and others specific to treatments, to be tremendously helpful as they relate to specific treatments and how we are each doing on them.
It's wonderful to know others, like Helen, have done so well on Eribulin, which reminds me why I was optimistic about it. Unfortunately for me, after the 2nd cycle my cancer was no longer impacted by Eribulin and my LFTs shot up putting me close to liver failure. Not sure "what's next" for me, but whatever it is it's a great help knowing there's likely another thread out there to follow.
Thank you for the birthday greetings! Just had chemo this afternoon. I just hope it keeps on working.
sorry to hear about your SEs.
Pain in right upper quandrant? Is that shoulder boob ribs chest area? If so, I have had crippling pain there in the evenings and it turned out to be indegestion/heartburn...the pain was agony, also across my back.
I found peppermint tea shifted it as quickly as any prescribed meds.
I'm so glad to be hearing good news about no further spread from so many!
I have one more cycle before CT scan (it will be more first scan since starting Eribulin) I wish I could say I'm optimistic, but tumor markers came down and went back up, I developed a mysterious rash on my left upper arm last week (it came and went within a few days but looked very angry), I have a bloated feeling and some swelling in my lower legs, and worst of all the pain has returned to my right upper quadrant. It mainly comes on in the evening.
I have an oncology appt next week, so will discuss all this with MD. Part of me is hoping she'll say lets do the scan early, just because I'm curious. We haven't talked about "what's next" if Eribulin doesn't work and hopefully won't need to.....
Hanging in there,
Thanks Nicky. Just hope it keeps working. Side effects are kicking in a bit more now but can cope with that.
Great news and a very welcome relief I’d imagine 😊 We all love a Stable Mabel so thanks for sharing with us and long may Eribulin work it’s magic. Enjoy the next few months between scans! Oh and a belated Happy Birthday, what a lovely present 🎁🎈🎂
Just got back from the hospital where I received my results from my 3 monthly scan. I am still stable after 20 cycles of Eribulin. It’s my birthday today so best present I could have. Take care everyone.
Well, another month has arrived!
How's everyone doing?
I've got my 3-month CT scan next week and results (hopefully) 10 days after, so I'll see whats going on and whether I change from Eribulin, continue or get a break.
Hope you're all still smiling, even if it is through gritted teeth
originally I started with steroids pre-med with the chemo, and a take-home pack twice a day for two days. I've since cut down to less than half dose.
I tried with no steroids at all, and had no sickness but the fatigue was too debilitating. I know my biggest problem is always the expectation of what I can still do while I'm having chemo!
I've been having bag leg pain like Nicky described and I think its caused by drop in red cells causing damage to the nerve sheath. I'm seeing the onc on Monday for blood tests and hopefully he'll explain it more scientifically.
Nicky, it wasn't until I read your post that I realise I've had a constantly runny nose and eyes!
Love to all
Hi Eribulin ladies
I was on this chemo in 2017 and had 8 cycles during which it worked well but an onc that I saw for a second opinion felt my bone marrow would only cope with 8 cycles so that was all I had. As it is my bone marrow is fine but maybe if I had stayed on yet another chemo it would have been compromised, guess we’ll never know! Anyway what I was going to say is that I started off having steroids after the infusion, and probably just before it as a pre med (I can’t remover exactly) but decided to not have them after the first cycle (day 1 and 8). I didn’t suffer any nausea or I’ll effects other than those that usually affect you like tiredness and some fatigue. I’m glad I decided not to continue with the steroids as I have a,ways felt really rough for a day or so when I’ve stopped them as you have to have them with some of the chemos I have had. As Laura has said, if you don’t need them there’s no point adding something extra to the mix however I know some ladies do take them and I understand why.
Good luck to all of you on this chemo, it is very doable but sometimes the SEs can get you down like the hair loss and in my case constantly runny nose and eyes, I spent a lot of my money last year on tissues! I know also that some of you have mentioned a feeling in your calf muscle which reminded me that I used to get really excruciating pain down the front of my shin. It was as if the muscle at the front had just contracted (as when you bend your foot up towards your knee) and the tendon that goes onto the ankle bone also tensed. It was so bad at times I literally cried and couldn’t stop it until it eased itself off in about 5 minutes. I’d forgotten all about that until the calf muscle was mentioned on here.
I had my 4th dose yesterday and it went without a hitch. Compared to Navelbine, which I was on before, I don't have any side effects with Eribulin administration so I can drive myself to and from which eases leaning on friends.
Initially I was prescribed steroid with Eribulin (4mg dexamethasone) I think to prevent/minimize side effects (nausea mostly, I think). I asked to have it lowered to 2mg, and now none at all as I'm not having any side effects I think the steroids are good if you need them, but if not, why add one more thing?
I may be one of the few that's destined to lose all my hair on the big E; I'm down to just thin, wispy strands. The other day someone called me "SIR" and even the dogs are giving me strange looks! Lots of days with a baseball cap on recently. I have a cute wig but with the hot weather, fake hair on my neck is not a good feel. I can put it in a pony tail or flip which I"m probably gonna do.
Too soon to know if Eribulin is doing it's job on the liver mets for me, but bloodwork and other indications are good.
Hugs to all!!!!
'Currently looking after 3 of my grandchildren with husband and daughter and they are all taking a nap!!'
Made me smile big time!
Hoping the paclitaxel does its stuff and shrinks those liver mets
Was using on taxol._theymust have helped a bit,, have the feet but have t used
carbo. Diff kind of pain, worse, but will. Have to seeEACH MITTIS AROUND 100 TO BUY AND YOUU NEEED A COOL BOX TO TRANSPOT AS HOSPTS OFTEN DONT HAVW. FREEZERRS
I. UNDERSTAND CHRISTIE USES ALL THE TIME
MOIJANSORRY RE CAps b,lasted nuisance
how long have you been using the cold mitts?
Do you have feet ones too?
Would love to know your opinion.
I get awful Reynauds and I'm wondering if they would make it worse