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Chemo Buddy Needed - Anyone Currently on Eribulin?

JoJorules
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

bless you
laurainboston
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello all you Spngebobsxx

 

 

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

 

Moijanxx

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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withasmile
Member

Re: Chemo Buddy Needed. Anyone Currently on Eribulin?

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

Sarah73
Member

Re: Chemo Buddy Needed. Anyone Currently on Eribulin?

It's really hit me for 6 but I did hear that few others were worse after first 2 then eased a bit. Felt generally drained, lethargic and feet really numb. Really hope it's all worth it and it's controlling it. Hope your all doing ok xx

Moomin
Member

Re: Chemo Buddy Needed. Anyone Currently on Eribulin?

Thats good to hear! I hope i get good results x

Moomin
Member

Re: Chemo Buddy Needed. Anyone Currently on Eribulin?

Hi Ladies,

Diagnosed March 2017 with TNBC.

Had FEC-T Chemo but on 4th cycle had local spread so Carbo was added in.

Had Mastectomy Sept 2017.

15 rads November 2017.

Risk Reducing mastectomy Feb 2018.

Routine oncology appointment resulted in a CT, MRI's to my brain, neck, spine, liver.

April 2018 diagnosed stage 4 with mets to liver, spine and lungs.

Done 3 cycles of Capecitabine.

CT scan last week shows lungs and spine stabiliased but a new lesion has appeared in my liver.

Tomorrow i start Halaven/Eribulen.

Looking for positive reports on this chemo drug, especially for the liver.

Thank you x   

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Have pmd you something

withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Moijan-

It seems like such a long time ago we were all starting our Sponge Bob journey and you were with us to help us on our way

xx

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Missing you Withasmile....good luck XX

withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hi Sarah

 

On my first course of Eribulin 2016/2017 I found it kinder than other chemos- its the 5th different chemo I've had- but it certainly did its job for me and I hope it does for you too.

 

I have triple neg lymphoma and have just completed my 2nd Eribulin cycle after being able to take a chemo break for a year.

I'll have a CT after the 3rd cycle to see whats happening.

 

Let us know how you get on with it, we're here for you and between us have probably done most of the SEs!

 

xx

 

 

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Sarah, Eribulin killed my bc, at one point all they could find was scar tissue,,,,I was on it for I think 18 cycles, but Tim’s began to rise at the end and I was put on Fulvestrant which did b’all for me, so now I’m on the Paclitaxel train, which is much more unpleasant than Eribulin...good luck with it, try not to take breaks, as I have found that that is when my bc changes it’s dna and becomes resistant, it's like not completing the full course of antibiotics....anyway, that’s my advice to you.xx

 

best wishes

 

Moijan🤗

Sarah73
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi all. Today I started eribulin. Fingers crossed it does something drastic for me. Got all clear in June last year..But now the triple negative is back with a vengeance. It's on brain..both lungs..breast again..liver and my various bones such as sternum..spine..pelvis..hip bone and lower back. The rate it's spreading I need it to work immediately! Any one else been on this and what results did you have? I have been told that max i will have is 16 cycles...yet im sure ive seen others on here having more. It's such a low dose it's scary that it will do anything! Looking forward to hearing from you all. Sarah xx
Sarah73
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thank you x
helen44
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Bumping up for Sarah73
Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Nice to hear from you Bousy, hope your scan goes well....if and when things change what is the next step for you?

does sound as if you have had mores /e than I did on erib,  my fingers did go a bit numb,  but not as bad as currently.

 

very very best wishes and keep us posted.

 

moijan🤗

Bousy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan,

Hope you are ok.

I have just finished my 15th cycle. I have a scan on 14 June and am dreading the results. I don’t feel any different but will have been on Eribulin for a year in July. I know it won’t work forever but would like it to work for longer.

I haven’t lost any weight but I have had the same amount of Eribulin for 14 cycles but for the 15th it was a smaller amount. This time have been very tired and aching back. Still have no taste and ankles feeling numb now and again. Other than that I’m fine!

Been to London for a weekend so probably done too much.

 

Hope you have a lovely weekend.

 

Bousy x

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello everyone,

 

‘’how are you getting on, on Eribulin?

 

iwas thinking, although I really found it easy as far as chemos go....I. Do recall myself. Withasmile. Helen acquarius and smarties finding that it made us get angry on our week off....,..mindyou...now I’d swap with any of you...you could have Paclitaxel and I could have Eribulin ......

 

actually these 15 days-between Paclitaxel  treatments have been more pleasant than on the first three cycles....which is a bit strange.

 

 

come on ladies tell us how it’s goingxxx

 

 

you know yesterday, I got frustrated with my phone and said S**t !  as one does.......and Siri said

’I hope you don’t kiss your mother with that mouth’!  

 

I ‘I did laugh. I hadn’t realised he’d. herd me!

 

 

anyway, let’s hear how everyone is going,

 

‘’love Moijanxx

 

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Yes Alee, that was bad luck...was it actual sepsis? Or nutrapenia?

 

.and I found erib to be a kind drug.....much nicer than Paclitaxel which I’m on now. What plans have they for your next drug?

 

hugs to you,

moijan🙏

 

withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hi Alee,

sorry to hear you've been through the mill with sepsis twice.

 

I haven't discussed any further treatments with onc yet as I'll wait and see if Eribulin works again for me- scan after 3rd cycle will tell.

 

Kindest x

Alee
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

What treatment are you on now? x
Alee
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

What other treatments have been discussed after eribulin it hasn’t worked for me 3 months and I was unwell thee whole time I had sepsis twice so I am looking forward to something new x
withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Nicky- have sent you PM
xx
nicky08
Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi withasmile - it’s good to have you back but not for the reasons you have said! Glad though that you have had a big break from any form of treatment, it will have put you, and your body, in a good place for when you start again. I take it you are going back on Eribulin? I’m being nosy as I stopped  Eribulin last year as the oncologists thought I should only have 8 cycles and not because it had stopped working (it was doing a good job at the time!). I have thought about it being an option to go back to but also thought, even though it is now approved by NICE, that you can’t go back to it? It would be interesting to know if that is a possibility. Sorry to pick your brains - and it is good to see you posting again!

Nicky x

withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Everyone,

 

TA DAAA!

I missed you all so I'm back! hahaha 😞

 

I stopped Eribulin Feb 2017 when the tumours had shrunk within acceptable limits (triple neg lymphoma para-aortic and liver) and have had a fab time chemo free, but the last couple of scans have showed steady regrowth so I'm starting back next week.

My cancer has never followed a conventional path so the break was the right thing for me at that time.

Of course there's 'will-it-wont-it-work-again' worries but we won't know until 3 cycle scan so I'm not thinking that far ahead.

 

I've followed the threads; its good to see this tolerable drug available to so many more ladies and lovely to find support still shining.

 

Lotsa love

xx

 

 

 

 

 

Phoebe4
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Helen

Thanks for your message!

yes I was due to start Wednesday but due to an oversight in the paperwork they gave it to me yesterday. Had a good nights sleep which always helps. Thye've given me steroids for a couple of days to make sure I cope.

21 months is a good length of time (at least good in my world!) ; they've told me 12 max, and thats being optimistic, but they are hopeful of a response and of course they never can tell, so we are relaxed and positive about things. 

 

Sorry to hear you're having to move on, I can understand how you feel. I was doing quite nicely on the capecitibene and then a similar thing happened to me. The uncertainty of what they will offer and what you will have to cope with next is tough and unsettling.

I'll be interested to hear what the next treatment is.

All the best, I'll be thinking of you xx

 

helen44
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Phoebe
How are you doing? I see you started eribulin this week, hope it helps you. I am about to start cycle 21, this is likely to be my last cycle as one of the liver tumours has grown slightly. I have a liver biopsy next week & then more scans before they decide a new treatment plan. In a strange way I will miss eribulin!
Good luck x