Chemo Buddy Needed - Anyone Currently on Eribulin?

[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

[Sarah73]

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]

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

[Moomin]

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]

Have pmd you something

[withasmile]

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]

Missing you Withasmile....good luck XX

[withasmile]

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]

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]

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]

Thank you x

[helen44]

Bumping up for Sarah73

[Moijan]

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]

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]

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]

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]

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]

What treatment are you on now? x

[Alee]

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]

Nicky- have sent you PM
xx

[nicky08]

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]

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]

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]

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

[Phoebe4]

Thanks liz
......and apologies for the previous typo!
Predictive text can land you in all sorts of trouble!!
X

[Bousy]

Glad to hear you have the go ahead!

Liz x

[Phoebe4]

Hi all 

Relieved to find my bloods have remained stable in this interim phase - I know the cancer has grown in my liver, but fortunately I've kept well with no treatment for the past 4 weeks. Now I've been given the go ahead for my first eribulin on 10th April

I'll be celebrating my son and husband's birthdays with all the family this weekend, so we're all overjoyed I've got the promise of the 3rd line chemo and hopefully many more months/years of quality time ahead!

Beautiful sunny day here!

hope everyone in good spirits

Hugs Phoebe xx

[Phoebe4]

Thanks Nicky and Lizard that's very helpful
Xx

[nicky08]

Hi Phoebe

As has already been said you do not need steroids with this chemo. You will probably be offered them by the chemo nurses at your hospital but you do not need to have them as the side effects are not as extreme as a lot of other chemos, when you do need them, it will be up to you I should think.  I also found I did not need anti sickness tablets (and I'm the worst nausea sufferer!) so it is a matter of choice.  Some ladies might have steroids but for me I really didn't need the added SEs that steroids give you, in this case 2 weeks out of three.

The infusion is very quick, about 5 mins, but my team built up to that and gave it to me a bit slower for the first couple of cycles and then just let it free drain (it comes in an IV bag so goes into a vein/cannula/port).  The time you spend in hospital is down to the saline before and after and in my case the waiting around for the nurses to be free as at times it was quite a busy ward.  However they are all so lovely and dealing with all patients so I didn't mind, just brought enough reading things to keep me occupied.

Nicky x

[Bousy]

Hi Phoebe, No you don’t take steroids before the infusion. I have a steroid anti sicknesses infusion before the Eribulin, which takes a couple of minutes, then saline is used and the Eribulin is syringed into the line. After a few more minutes of saline,I’m all finished.

Hope this helps. I have my next day 1 on 13th April.

Good luck, you will be fine.

Liz x

[Phoebe4]

Hi
I'm hoping to start eribulin next Tuesday. Can anyone tell me if you have to take steroids before the infusion?
Thanks
Px

[Bousy]

Hi again Phoebe,

Eribulin is one of the quicker chemos to have. It normally takes about 40 mins. You have it on day 1 and day 8, then a 2 week break. I manage to go and do things and do all my shopping, housework etc , with my husband. When you feel tired just rest, then usually I can carry on! I get peripheral neuropathy, numb fingers and toes, but it’s not bad.

Look forward to speaking again on this thread,

Good luck for the 10 th. 

Liz x

[Phoebe4]

Hi Clarrise and all the other 'eribulin' ladies

I hope you are all still doing well on Eribulin?

I have had taxel and capecitebene, which has now stopped working. I am hoping to start eribulin on 10th April, if all my blood tests are ok

Phoebe xx

[Moijan]

Our hospital doesn’t let cold caps re Eribulin...as no evidence they make a differencex