Chemo Buddy Needed - Anyone Currently on Eribulin?

[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.

[JoJorules]

Hi 

Can you tell me your name? I am new to the forum so if your name is listed somewhere, I can't find it. Probably staring at me in the face. It feels good to connect with someone with my diagnosis. I really appreciate your feedback about your hair. If i stay on this clinical trial I will stop using the cold caps. My insurance was suppose to pay for them, but it  is not looking good. The company I use here is US has you pay for the first 8 sessions and then the rest are free so I thought that was a pretty good deal for those of us who will be on chemo for an indefinite period of time. Thanks again... 

Jo

[Hlarson]

bless you

[laurainboston]

Hi all --

So happy this thread is active with eribulin veterans and newbies like me (just finished 3rd tx like Hlarsen)

Someone mentioned cold capping and it's interesting that various research has indicated it "helps" and many insurances in the US will cover part of the cost. I see it being done at Mass General which is where I go for treatment. To me it's not worth the added hassle and cost, esp since it may/may not work. With the rate I'm losing hair I"m headed for wig and already picked out a cute one. I have a 14yo and need to keep a presentable appearance so as not to be an "embarrassment" (giggle)

My breast cancer was stage 2 when dx 2011 but mets 2016 and now four areas of liver mets in 2018 which have grown on Ibrance and Navelbine. Pain had been an issue as liver was enlarged but I have a great pain med regime worked out thanks to pallliative care MD. Anything that keeps those mets from growing will give me hope --I guess we'll see after 4th cycle.

[Moijan]

Helen

nice to see you here...how is pac going? Didn’t work for me😰

so on carboplatin

even less pleasant and with novweeks off

moijan  😭

[Moijan]

Hello Hlarson...

welcome to this thread.  What a lovely positive and inspiring post xx

hope things go well for you on Erib..it killed mine atoepoint but sadly grew back later, but had about 21 months

on it.

actually, I got sore fingers which recovered well, I must have got the tiredness,but really I can’t recall...this chemo is an absolute joy, compared to my current one! I recall it very fondly.

alto I began the thread..Withasmile is now likely the current lady who would be good to discuss s/e and strategies if need be...I lost my hair, but it started regrowing almost immediately! I lost my lashes and eyebrows, got them back now tho.

very very best of luck...and enjoy.xx I miss this chemo

xxx

Moijan🙏🤗

[helen44]

Hi everyone
A warm welcome to the new Spongebobbers on this thread. Just thought I'd share my eribulin experience if it's any help.
My hair was shoulder length so had a short pixie cut, it thinned after 1st cycle but then started to grow and was back to shoulder length when I stopped eribulin after 23 cycles. I did have neuropathy which came & went with no real pattern and I did have the strange no feeling sensation that Withasmile talks about in calves and thighs. No nausea. Loss of taste on day 2 & day 9 only. Fatigue sporadically. All in all it was an ok Chemo, certainly better than paclitaxel which I am on now (no hair whatsoever!). I have bone & liver mets, dx straight to stage 4 in Dec 2012. The liver mets decided to multiply somewhat towards the end of eribulin treatment hence switch to paclitaxel.
I am on Isle of Wight with an oncologist from Southampton.
All the very best with your treatments lovely ladies.
Helen x

[withasmile]

hi Hilarson,

I hope Eribulin helps you- after all the other chemos it seems a much gentler regime.

I was first diagnosed 1995, so like you I've worked my way through most of the available drugs!

Its amazing when you look back, just how far treatments have come, and attitudes have changed.

The fatigue seems to come and go, I've not been able to work out a pattern.

Good luck with everything

x

[Hlarson]

Hi everyone- I just had my 3rd dose today. 2 weeks on and 1 week off. Only thing I have noticed so far is a pretty heavy fatigue off and on. No neuropathy yet and no hair loss yet. I am sure the hair will come out. I have never kept it. I have ER+ metastatic breast cancer. Diag 1999; 1st Met to bones 2008; mulitie bone Mets since and 6/2018 meta to lungs. I have had most every chemo over the years, both Iv and pills. So far this is good and I am hopeful this works! You are all warriors. Fight the good fight

[Moijan]

Hi jojo

I  did lose my hair on Eribulin....but it started growing back..my hosp doesn’t use the cold capwith it as apparently there is no evidence it work...it’s avery busy hosp and cold cap, as you say adds a lot of time to either end

my treatments were about ten minutes with a pre and post flush, I was usually out very quickly indeedxx

good luck with everything

Moijanx

[withasmile]

hi,

funnily enough, this morning I was reading up about immunotherapy with Eribulin. It does seem to have some good results.

I find the neuropathy fades away during my recovery week off. I also get a strange no-feeling sensation down the front of my shins and thighs.

Glad your TMs have decreased, hope it continues!

x

[laurainboston]

Hi all --

Chemo routine for Eribulin here in the US sounds the same (day 1,8,15)

I was disappointed not to get into the trial combining immunotherapy (Keytruda) with Eribulin, but excited to know it's happening and hopefully with good outcomes! If results are positive they may open more slots. My oncologist thinks finding an immunotherapy and chemo drug that work together is the key to shrinking the tumors and progression free survival.

My tumor markers decreased after just two doses, so I'm encouraged 🙂

I had the sensation of numbness in fingers of my left hand for a few days last week but thankfully that subsided. I know neuropathy is a side effect and hopefully won't be problematic.

[withasmile]

hi Jo,

glad to hear the treatment is working for you.

I too have Stage IV triple negative bc.

I found with Eribulin my hair shedded and got thin at the start, and so I cropped it short, but then new hair started to grow back in.

I had success with the cold cap, and didn't lose my hair for my first chemo back in 1996, but haven't bothered with using it on subsequent chemos.

Hope this helps- let us know how you get on

[JoJorules]

Hi, 

My name is Jo and currently on a clinical trial with Eribulin and everolimus. I have been on this trial since December 2017. So far it is shrinking my tumors. I have Stage IV triple negative bc. I have used the cold caps for all cycles. I recently started to cut my cold cap sessions short by about an hour.  I have kept all my hair and have not shedded at all. I am playing with the idea of not doing the cold caps anymore due mostly to cost and inconvience. Does everybody lose their hair on eribulin? Or are there some people who don't? After 16 sessions of infusions, I am thinking I may be okay without the coldcaps. Was wondering what others think about this. 

Thanks, 

Jo

[withasmile]

hi Laura,

glad you've found Eribulin 'not too bad', I agree with you- its certainly the least bad of the chemos I've had so far!

Yes you're certainly overdue with something working, most of us here are in the same boat 😞

I had Eribulin previously. It shrunk the tumours back sufficiently to take a year off chemo, and now they've grown again I'm back on it. It's working again this time, I have another scan in September and we'll decide the next step then.

I found my existing hair came out after the second dose so I cropped it short, then it stabilised and around the third cycle new hair started growing back.

Interested to know if your US routine is the same as ours? - treatment day 1 and day 8 and then a week off to recover?

Let us know how you get on

[laurainboston]

Hi all --

I'm new to the site and looking for eribulin buddies.

I'm in Boston and have had two doses, so far so good (or at least not bad!)

Hair is coming out now but I'm not sure if it's just "thinning" or whether I'm headed for wig world.

Stats here in US indicate about 20% of patients have success with Eribulin. So far nothing has worked for me, so I figure I'm overdue. Staying hopeful!!

Laura

[Moijan]

Yes, sorry Helen, I found the taxol variable, but some days I felt really well.  I did keep to the advice not to have any caffeine (search for’diet Tips when on paclitaxel’ I  found eating smaller frequent meals better....and I felt nauseous a lot of the time, but eating seemed to help. From reading others experiences...milk intolerance seemed to occur a bit whilst people were on Paclitaxel.  

Let us us know how it’s going and very best wishesxx

Moijan

[Moijan]

What a shame Sarah, hopefully they will be able to sort out your magnesium, if that’s the cause of the 

‘only 8 cycles’. 

Letusknow how how it goes.

howare you finding the heat? I know I’m finding it unbearable.

love and hugs

Moijanx

[Sarah73]

Just found out that part of tiredness and the reason for my severe muscle spasms is because my magnesium is really low. Been put on sachets to see if helps. If not will have a transfusion. But at least it explains few things x

[Sarah73]

So sorry youve had to stop the Eribulin. Where are you from Helen? I'm only allowed 8 cycles of Eribulin if it keeps working I've been told so just curious. Hope your new one has positive results xx

[withasmile]

hi Liz,

isn't it a lovely feeling just after a scan, when things are stable, and you can go another three months?!

The fatigue does get worse doesn't it.

Wishing you luck

x

[Bousy]

Hi everyone,

Haven’t posted for ages. Saw oncologist today for my scan results and everything is still stable. I have had 17 cycles so far, it’s exactly a year since I started Eribulin. Last 3 cycles I’ve been on 90% of the dose due to peripheral neuropathy. Feel ok but get more fatigue now. Next scan September. Feel relieved for another 3 months.

Cycle18 starts Friday!

Liz x

[withasmile]

hi Helen,

sorry to hear you've had to leave the relative 'comfort' of Eribulin and start on paclitaxel, but pleased it worked for you for so long.

xx

[helen44]

Hi Spongebobbers
How is everyone getting on with eribulin? I do hope that it is helping you all. I have had to switch to weekly paclitaxel as after 23 cycles of eribulin a liver MRI showed multiple liver mets & the largest had grown several mm since Feb. Interesting that the liver MRI with gadolinium shows up much more than a CT with contrast - it did make me wonder why I hadn't had one before now (had mets for 5 & a half years).....
Miss eribulin, it was tolerable for me and now dealing with paclitaxel. How are you getting on with the paclitaxel Moijan?
How did you manage to go back on eribulin Withasmile? Presume that funding wasn't an issue? Hope you're ok.
Take care of yourselves, Helen x

[Moijan]

Hello all you Spngebobsxx

How are everyone, I pmd you Withasmile a short while ago...but guess you might be away? 

Moijanxx

[Moijan]

[withasmile]

Moomin,

I hope your first Eribulin went smoothly, if you feel like chatting let us know how you get on.

xx

Sarah,

I find fatigue is my biggest problem and I get the numbness in arms and fingers. It lessens slightly before the next cycle and then returns.

I've tried every whichway to avoid or manage the fatigue but still haven't cracked it!

xx