Chemo Buddy Needed - Anyone Currently on Eribulin?

[withasmile]

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

[London1]

Hello! After 22 cycles of Capecitabine (which I tolerated mostly okay) it stopped working and I had further progression in my liver so I started Eribulin 14 Dec. That first infusion hit hard and while I felt completely fine (no nausea and only noticeably really tired on day 3) my neutrophils were slammed to below 1 so they gave up on that cycle while I had a power port fitted too. About half my hair fell out just after Christmas but then it stabilised. I’ve completed cycle 2 now and no sign of more hair loss (yet). Neutrophils were 3.6 before the 1st infusion and just 1.5 for the 2nd one, the cut off for delaying chemo. So I’m sure that will be an ongoing issue for me! I did look back at all the comments on Eribulin on the forum and can confirm it is definitely a tolerable chemo! I was straight to stage 4 with lobular BC multiple liver mets and a single bone met. This is my 4th chemo. I’m just coming up to the 5 year anniversary too.
But I’ve never felt ill from the cancer, treatment on the other hand not great! But I have regular equine therapy which is the best!

[Kaysway]

I will start mine on wed 16 Jan
I have MBC it has spread to both lungs now. It's chemo drug no 7..

[helen44]

All the best to the newbies on eribulin. I had 23 cycles in a row Angiex before moving to paclitaxel. I found it very tolerable & it kept me pretty stable until the last couple of cycles when liver mets increased a little.
Helen x

[Angiex]

Hi there ladies new to the forum so please bear with me. Im not great with tech lol
Helen44 while you were on the eribulin did you have the 23 cycles in a row or did you have breaks?
I'm on my third cycle and hoping to stay on it as long as i can to get the most time i can.
Any sucsess storys would be lovely i'm a worry wort. Xx

[Jen42]

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

[Jen42]

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

[evie510514]

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.

[LilyFB]

I’m changing to eribulin next week. Can’t find much info on it? How are SEs? Xx

[C A S]

Thanks Helen and good luck on paclitaxel x

[C A S]

Thanks Jen and Nicky, going to see if I can use the cold cap for the first 2 cycles and see what happens - that’s if they’ll let me! I have a wig just in case (although I hate it with a vengeance!)

Great to know about the steroids - I really don’t like them. Sleepless nights and then a day of tears and depression when they stop is sometimes worse than the side effects of the chemo. So after your advise i’m going to ask to try without them.

Thanks so much for all your advice - it’s only those that are going through this that really understand. I have an amazing hubby and fabulous sisters but it’s hard for them to help sometimes.

Starting Eribulin next Tuesday - 🙏 it works for us all and everyone stays well.

Claire
Xx

[helen44]

Hi
Re hair loss on eribulin- I had 23 cycles of eribulin and didn't cold cap. As Nicky says, the treatment literally takes 7 minutes to administer, using cold cap would have added hours to time in chemo unit so I didn't bother. My hair was shoulder length & very thick before eribulin (Had returned quite nicely after docetaxel in 2014) - it thinned ever so slightly after 2nd cycle & then continued to grow throughout 23 cycles. I am now on paclitaxel & lost it but embracing the turbans.
Neuropathy was worse on eribulin than paclitaxel for me. I had numb toes most of the time & no feeling in my lower legs on several occasions. On paclitaxel it seems to be confined to toes only. Everyone is different!
Wishing everyone starting eribulin all the very best, as chemos go I found it very tolerable.
Helen x

[nicky08]

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.

Nicky x

[Jen42]

  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

[C A S]

Hi everyone,

Thank you all for these posts - I am new to the forum so not sure what i’m doing!! But all your advise, info and tips have been very helpful,

I am just about to start on Eribulin next week. I was dx with ER+ BC in 2013 with liver mets. Have had lots of Chemo, both iv and tablets over the last few years. Now have bone mets and a few new liver mets so just had weekly paclitaxel for 14 weeks with mixed results (some reductions in tumours but also some increases) so now my onc wants to try me on Eribulin. I used the cold cap for the paclitaxel and have lost a lot of hair but have just enough of a covering to get by without a wig/scarves. Been told I can’t use the cold cap with Eribulin and as i’m already thinning am worried my hair will be a gonna if I don’t cold cap. I have an 8 yr old and 11yr old and losing my hair is a really big deal to me and the kids.

Was wondering how I could convince the nurses to let me continue with the cold cap.
Jo - you said cold cap has worked for you and you were thinking of stopping using it now. Did you have to fight to use it in the first place and have you stopped and if so what are the results?

Also had terrible neuropathy with paclitaxel - dreading it continuing on Eribulin. Otherwise hoping this will be more tolerable.

[withasmile]

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

[laurainboston]

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.

[helen44]

Very saddened to hear that Moijan, who started this invaluable thread, passed away last month. She had such good advice and we often Pm'd. Like me (23 cycles) she was on eribulin for a long time so was able to help others with their worries. You will be missed by us all. Rest in peace Moijan xx

[Bousy]

Hi Withasmile,

Thank you for the birthday greetings! Just had chemo this afternoon. I just hope it keeps on working.

Bousy xx

[withasmile]

hiya Laurainboston

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.

xx

[withasmile]

yay! Happy birthday Bousy and happy scan results!

xx

[laurainboston]

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,

Laurainboston

[Bousy]

Thanks Nicky. Just hope it keeps working. Side effects are kicking in a bit more now but can cope with that.

Bousy x

[nicky08]

Hey Bousy

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 🎁🎈🎂

Nicky x

[Bousy]

Hi Everyone,

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.

Bousy x

[withasmile]

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

x

[Phoebe4]

Streaming eyes are so debilitating! Every time I look down my glasses are covered in tears. I have a tissue in my hand permanently. Even had someone say ' Don't cry' when I was walking the dog!!

[withasmile]

hi all

re steroids: 

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

xx

[nicky08]

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.

Nicky xx

[laurainboston]

HI all!

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!!!!

Laurainboston

[Phoebe4]

Just wondering if anyone else at Christies on eribulin? Are you having steroids? I'm on 8mg for 3 days. I'd like to wean off . Plan to chat to doctors next time. I've had 6 cycles but my dose has been reduced twice as my liver tests are up and down and it has hit me hard, although no nausea. I think dex can cause muscle weakness so given the neuropathy I wondered if it would not help. Alternatively I guess it might be reducing inflammation? Will be quizzing the oncs!
Phoebe xx

[withasmile]

Helen-

'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

xx

[Moijan]

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 

[helen44]

Hi Withasmile and Moijan
Thanks for your good wishes. On week 7 of 18 paclitaxel and ok so far. Feel much more tired these days than on eribulin. Currently looking after 3 of my grandchildren with husband and daughter and they are all taking a nap!! Nice for some!
I hope that it is shrinking the liver mets, they worry me far more than my bones.
Take care of yourselves x

[withasmile]

Moijan,

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

xx

[withasmile]

Phoebe-

the less said about capecitabene the better!

Hope you got through Moody Monday ok, Moijan and I used to compare our moody days, but for me they've either eased off or I'm just moody all the time and haven't noticed (and no-one else dares mention!)

x

[Moijan]

Did kill my liver mets, but sadly they grew again..we are all differentxx

m

[Moijan]

Hi girls, I have been using the cold mitts and the juries out but will let you know,

‘’another lady suggested that l glutamine can help and I’m trying that..but check with your onc.

m

[Phoebe4]

Yes the fatigue is really hard. It's my worst day today (Moody Monday i call it) I have finally accepted I just have to collapse and rest completely. Yes drinking loads is essential too
I will let you know how the mitts go. Could have done with the foot ones when my feet were burning up on capecitabene! ! Love to all xx

[withasmile]

hi Phoebe,

so pleased to hear about about the shrinking liver mets.

The extreme fatigue is horrible isn't it, just total wipe-out. I can't offer any solution because as yet, I haven't found anything that helps.

I think 'rest, and drink lots of water' must be imprinted on my brain!!

Interested to hear if the cold mitts help the neuropathy as I've had it really badly these past two cycles (4th and 5th). Let us know how you get on

x

[Phoebe4]

Hi everyone good to read about your eribulin experiences. I have had a bit of a rough ride I think possibly because my liver mets are very advaneed and I seem to be very sensitive to the chemo. After 3 cycles though the liver mets were shrinking which ishould fantastic. I have had to have a 40% reduction in dose to cope. My main problems now after 6 cycles is extreme fatigue and neuropathy. I've just started using the cold mitts for hands and feet like the cold capping to see if it helps. Know what you mean about the weird calf sensation too!
Phoebe xx

[golfjunkie]

Hi withasmile:
It is encouraging to hear that you were able to take a break from chemo after being on Eribulin and that it worked a second time as well. Positive stories like that are part of what keep us fighting the fight. Thank-you for sharing.😊😊

[withasmile]

hello golfjunkie,

glad you've found support with this thread.

Eribulin certainly is an easier chemo when you've tasted a lot of the others on offer!

My BC has chopped and changed over the years from OE neg to pos and back again, so I've had the joy of sampling most drugs!

I started Eribulin 2016 when my BC became stage 4 Triple Neg Lymphoma with para-aortic and liver tumours.

It shrunk the liver ts completely, and reduced the para-aortic ts.

I asked for a chemo break with 3 month CT scans to check progress and had nearly a year off chemo. I re-started Eribulin this year when the tumours re-grew, and latest scan showed some hopeful reduction.

So many of us have been battling for so long - and long may we continue!

[withasmile]

hey Helen,

I hope everything is going steadily for you.

Those nervous days of starting Eribulin seem so far away now don't they?

The taxel chemos are pretty heavy going - I had a course prior to Eribulin - so sending lots of empathatic hugs your way.

xx

[Moijan]

Hi jo, you can change your name if you want...ask the mods gelp

loads of love and hugs

Moijanx

[golfjunkie]

Hello everyone. I gave been following this thread for 6 months and have finally decided to join.
It has been helpful to me to read about all your experieces with Eribulin and other chemo Tx.
Maybe my story will help others.
Initial diagnosis was stage 2 breast ca..HER2 neg, ER positve in left breast in 1992. Then in 2005 HER2 neg, ER neg breast ca in right breast.
In 2015 pathological fractures to both arms ( same time) from cancer spread to bones thus Stage 4.
Currently have liver involvement and have just finished 6 cycles on Eribulin.
Of all the chemo I have had in my lifetime Eribulin has been the most tolerable.
Liver MRIs have shown the liver mets have stabilized on Eribulin. I find it quite tolerable overall and the longer I am on it the more tolerable it has become regard fatigue, nausea and appetite.
The main side effect for me has been numbness in hands and feet and in the beginning fatigue.
I am in my 26th year of battling breast cancer and feel blessed to have been able to fight the fight for so many years.
I would be especially interested in hearing about anyone recieving immunotherapy drugs in conjunction with Eribulin and of course all your stories regardless if just on Eribulin or other chemo therapies used to treat stage 4.. breast cancer.

[JoJorules]

Okay I now see that some of us use a member name. I had no idea my JoJorules would pop up as my name. Please everyone just call me Jo. Diagnosed August 2016 with Stage IV triple negative bc. Had first diagnosis in 2006 with estrogen positive stage 2. I am still overwhelemed by it all even though it is now about 2 years. Live in Pasadena and have City of Hope in my backyard.Very thankful for that.
Jo

[JoJorules]

I have been on eribulin and evromilus ( clinical trial) since December. My right hand falls asleep if I hold a book for too long. My feet are warm too. But I am getting progressive symptoms with the hands and arms on the erbulin.