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Anyone else still on eribulin?

24 REPLIES 24
Boattripper
Member

Re: Anyone else still on eribulin?

I too like the sea theme of this thread. It’s amazing that this drug was developed from a sea sponge and other such effective drugs from natural sources e.g. Tax type drugs from yew. Anyway, my first two cycles have seen a fairly sharp drop in tumour markers which I'm pleased about. Although unfortunately my neutrophils and whole blood count weren't good enough to have my cycle 3 day 8 treatment so I've had to miss that out and might be looking at a lower dose. I also missed cycle 1 day 8 due to high blood sugars so I'm not doing great with the actual regime. Will see what my Onc says about all this in a couple of weeks.
Esha_Ness
Member

Re: Anyone else still on eribulin?

Hi Diddy
Fingers crossed that the letrazole works. It's encouraging to hear that you are still hormone receptor positive as my status has now changed fro being negative.
The hormone treatments worked for me for a long time. It may be worth asking about the Exemastine and Everolomus combination which for some is working very well and a new drug combo. If you have had Exemastine before they can't apply to the cancer drug fund but there are also clinical studies out there in regional centres.
Best wishes to all Spongebobbers.
By the way Salsa babe I hope your skin colour is improving. These side effects are rubbish and often take us by surprise .
Esha ness

Guest user
Not applicable

Re: Anyone else still on eribulin?

Hi Mrs B

 

I was also taken off the eribulin as the response was not what they had hoped for. But the Oncologist was telling me they are getting a good response from this drug. I do hope all you spongebobbers have a really great response, I wish you all well on this treatment.

I was originally put on letrozole as the first phase of my treatments. I have had a really bad responsse to a new chemo (myocet & cyclophosphamide) spending a week in Christies. 2 weeks later I am starting to feel better. I am seeing my oncologist on Monday as to the way forward and I will tell him about you Mrs B and see if putting me back on letrozole could be an option.

 

love to all

Elainexx

mrsblue
Member

Re: Anyone else still on eribulin?

Hi all, and thanks 🙂

I'm now on letrozole, again - this was my first treatment after dx (bc+bone mets) in 2006.  Much kinder in terms of side effects... and I'm feeling less fatigued already, now I'm no longer on eribulin.

Esha Ness - as you say, there is a theme of the sea... very appropriate, because eribulin was developed from a compound produced by a marine sponge.

Esha_Ness
Member

Re: Anyone else still on eribulin?

Hi Mrs Blue and Boat Tripper
Thankyou for getting back to me so quickly. Very helpful . Firstly Mrs Blue , I hope that your next round of medication will stabalize any further activity. What non chemo are you going on? Let's hope with mild side effects!
Boat tripper I am interested to hear that you have stopped steroids as This huge whack of steroids that I take puts me on such a roller coaster ride. I will ask the consultant if I can reduce . Well if my hair is going to go it is likely to go this week. I am so hoping that it will stay but as we all know in this we have no choice and are made to somehow try and get our heads around what is happening to our bodies.
Salsa babe I hope that your added blackening to your soles and palms is settling. Has this come as a surprise to the Doctors? Do they know of this happening to others with black skin?
My main side effect is tiredness and less energy and I have no choice but to sleep.
Thankyou to all for sharing the E space . Do call in and just say how you are getting on.
Esha Ness

Have a user name theme here of the sea.... Esha ness is a lighthouse in the Scottish Isles ,Boat Tripper and Mrs blue capture the theme and atmosphere well!

Boattripper
Member

Re: Anyone else still on eribulin?

Hi Mrs Blue, thanks for starting off this thread. It'll be very useful to us, and of course your experience of Eribulin has already helped us. I'm so sorry that you're not continuing on the drug and hope that the next treatment is good. Warmest wishes.
mrsblue
Member

Re: Anyone else still on eribulin?

Hi all...

To answer various q's:

My hospital doesn't prescribe steroids for eribulin, I wasn't offered them anyway.  Fatigue (which I've never had with previous chemos) became a problem after cycle 5.  I lost almost all my hair, eyebrows and eyelashes.  However - I found I didn't need anti-sickness drugs by IV, I just took domperidone tablets when needed.

Peripheral neuropathy can be a problem, again I noticed this getting a bit worse recently.

Sadly I've had to stop eribulin (I had had 7 cycles) as my tumour markers/liver function results showed it had become less effective.  I am on another treatment (not chemo) and am awaiting PET scan at end Nov.

I'm glad I had a go at eribulin though - it is a useful addition to treatments available for us who have metastatic bc.  It should be available to all, including those in Wales.

Oh, and I lost 7 lb in weight.  I was pleased (I confess to being overweight and undertall) but the oncs weren't.

Boattripper
Member

Re: Anyone else still on eribulin?

Hi, I've just started cycle 3 so haven't had a good run at it yet in terms of patterns of fatigue etc. However, I haven't noticed week 2 to be any better or worse for tiredness really. I picked up from 3-4 days after each. Have been allowed to stop steroids now and just take ondansetron on treatment day and metoclopromide thereafter. Seems to handle the nausea. Having a couple of days with constipation problems though.
As for hair thinning, the first phase happened in weeks 2-3, and now frustratingly again at the same point in cycle 2. I was also hoping to keep mine after losing it twice before. There's still hope though. Very best of luck with it all Esha Ness.
Esha_Ness
Member

Re: Anyone else still on eribulin?

Hi to all taking Eribulin
I am due for my second shot of Eribulin tomorrow and would like to know if the side effects on the second week are worse than the first. And then what is the week off week like?
I have been absurdly tired this first week and hoping this will improve. Are you all prescribed steroids too? Also I seem to have lost some weight too ?
Sorry to be firing you with questions but hopefully I can be of some help to others at some point. Oh yes and the other question is at what point did hair thin/ fall out. Anyone kept their hair? It would be such a treat to keep my hair having lost it twice.
Look forward to hearing from you .

horsie5050
Member

g Re: Anyone else still on eribulin?

Morning Mrs B!  yep, I am still on Eribulin. I have just completed cycle 9, I have been on it since early April.  I am feeling really well, but... I have started to get mild pins and needles in my foot.  However I'm happy to cope with nerve damage as it's keeping my tumours in my liver stable...  xxxx

Guest user
Not applicable

Re: Anyone else still on eribulin?

Hey Mrs Blue, so glad eribulin is working for you, Christies (where I am now) say they have had good results with this drug.
All spongebobs, I hope it works for you giving "C" a big kick up the butt.
Love and best wishes, Elaine xx
Esha_Ness
Member

Re: Anyone else still on eribulin?

Hi to All on Eribulin
It's a comfort to know you are out there with it being quite a new drug.
I have had my first shot today and will keep you updated on side effects. Writing this at 1.43 am is steroid hype!
Good to know we are going through this together.

Boattripper
Member

Re: Anyone else still on eribulin?

I'm pleased that things seem to be going ok for you Salsa babe. I’m beginning to think that many of the symptoms I've had, particularly fatigue and headaches are due to high blood sugars which we are still trying to regulate. Good luck with Day 8 treatment.
Guest user
Not applicable

Re: Anyone else still on eribulin?

Hi Eribulin takers!!!

 

I had my first treatment of Eribulin last week 16th Oct and did not need to take anti sickness tablets when I got home. No obvious signs; so lets see how I fair today after my second treatment.

 

I have noticed that since I finished the Capecitabine which I only had two cyles, there is an obvious change in the soles of the feet and palms of my hands they are changing back to "normal" and my nails grow quickly and are very strong.

 

Will be in touch shortly.  Hope you are ALL doing okay as can be expected.

 

Smiley Happy

Guest user
Not applicable

Re: Anyone else still on eribulin?

Hi Boattripper

 

Thanks for a respnse..  I hope you feel better soon. I will be in touch after Wednesday.  Talking to my Chemo Nurse this morning, she said that the women she had seen, and not many in her Unit on this drug have coped quite well.  I was concerned about my skin getting darker than it is as I am a LADY OF COLOUR!!!  She said most women complained of tingling sensation at the tips of their fingers as well as toes.

 

I can't remember if you said you lost your hair on the first cycle so will re-read your message again. Yes, I know we are all different so lets see how I do!!!

 

Take care

 

 

 

Boattripper
Member

Re: Anyone else still on eribulin?

Salsa_babe, yes I do have redness on the soles of my feet with Eribulin, but it's not as extreme or as sore as with Capecitabine thank goodness. I really think that some of my side effects have been made worse by the high blood sugars that I suffer when I take steroids along with chemo. And remember that everyone is different so you may not suffer too badly. I've picked up a cold and although I don't have a temperature I'm not sure yet whether I'll be having my Day 8 treatment tomorrow. Depends on bloods and whether they think it's ok to treat when I have an infection, so we'll see.
Very best of luck with your treatment.
Guest user
Not applicable

Re: Anyone else still on eribulin?

Hi Boattripper

 

What is/was your worst S.E. on Eribulin, the fatigue and mood swings I thought was normal. On Paclitaxel then Capecitabine  the fatigue was about the same.  Funny how Paclitaxel robbed my hair and blackened my nails hands and feet.  Whilst Capecitabine restored the colour of my nails BUT blackened my palms and soles of the feet.  I only had 2 cycles of Capecitabine before it was deemed not to be work.  So its been almost 3 weeks and I have noticed the colour is slowing coming back.  It will be INTERESTING to see what Eribulin, did you have discolouration to hands and feet?

 

It will be nice if we can all keep each other going.  Though I am nervous about starting Eribulin am a little curious at the same time.

 

Will be in touch - WATCH THIS SPACE

 

Kind regards

Guest user
Not applicable

Re: Anyone else still on eribulin?

Hi Mrsblue and boatripper!!

 

Thank you for your response, I was on Cape for 2 cycles, my hair continued to grow after Paclitaxel wiped it out.  The only S.E. was blackened nails both hands and feet and on Black Skin is not a good look!!!

 

I am hoping to get some stability on this drug. As a question, were you advised to change your diet... I will be in touch after Wed which is MY BIG DAY!!!

 

Hoping you had a good weekend.

 

Kind regards

Smiley Happy

Boattripper
Member

Re: Anyone else still on eribulin?

Oh yes, the fatigue. How could I have not mentioned it? Definitely needs managing carefully if you have anything planned. As far as the low mood is concerned, it"s a bit too soon to work it out but I seem to have 2-3 days of not wanting to interact with anyone or anything and lots of tears flowing, starting about two days after each treatment . I think when I read that Eribulin is well tolerated in terms of sickness etc ., I took that to mean no side effects which isn't the case! However, maybe some of my side effects are worse because of the complications with my blood sugars, so don't despair!
As Mrs Blue originally asked, it would be reassuring if anyone else still on this drug popped up as I'm sure we'd like to think that it could work for some time.
Best wishes on Secondary Breast Cancer Awareness Day. I've been tweeting the graphic from BCC's homepage.
mrsblue
Member

Re: Anyone else still on eribulin?

Hi, eribulin newbies! (waves hand)

OK... this is my experience, for what it's worth.  After only 2 weeks I lost most of my hair, but no further head hair loss after that.  So I now look like Gollum in The Lord of the Rings !!  Also lost my eyebrows and eyelashes.  I have been known to remove my wig at clinic appointments to shock the onc on duty!

The best thing about eribulin, after having had capecitabine, is that the hand/foot syndrome wears off, and I can do things like wearing crocs, preparing vegetables, and playing the piano, after 2 years on cape.  Also my nails are almost normal - I went straight on to cape after paclitaxel, which didn't work for me and gave me SEs more typical of docetaxel.

Interesting that you mention low mood with eribulin - me too, though I assumed it was to do with other family/life events not relevant here.

Fatigue was new for me, but I am learning to manage it.

Boattripper
Member

Re: Anyone else still on eribulin?

Yes, it was disappointing about the thinning hair (more than half has gone). It started in week 3 of the first cycle like the other IV chemos really. I am using the cold cap during treatment but I believe that 50% of patients still lose all their hair, 25%have thinning and 25% keep it. You never know, you may be lucky.
Best wishes and here's hoping for good results.
Guest user
Not applicable

Re: Anyone else still on eribulin?

Hi Boatripper

 

Oh dear, I do hope this works for you, like you I am in the "NEXT" group,  I have been on paclitaxel - robbed my hair but felt well no side effects. Then in July this year when on to Capecitabine which left my hair to grow into a thick afro, I could give Michael Jackson a run for his money if he were here today.  That didn't work and so next Wed 16 I start Eribulin.  Wow you lost/noticed thinning hair after 2 cycles.

 

I hope you have a good weekend, I am in London and its MISERABLE a bit like how I feel.

 

Warm wishes

 

Guest user
Not applicable

Re: Anyone else still on eribulin?

Hi Mrs Blue

 

I am about to start Eribulin next Wed 16 Oct.  I wonder can you tell me anything that I should know to help myself along.  Have you lost your hair and if so, how long did it take before you noticed it thinning out?  For you what is the worst side effect. I am just getting over Capecitabine tablet form of chemo, as it didn't really work but has left me with a blacker face (yes, I am a woman of colour) and I have to force myself to leave the house for hospital appointments. The palms of my hands and soles of my feet were blackened too.  It has been 3 weeks since I have stopped taking the Capecitabine  and I have noticed a change in the skin, my palms are getting lighter, luckily it did not rob my hair which went when I was on Paclitaxel for 18 weeks, I don't know how I will fee having to loose my hair a second time in a year!!!

 

I look forward to hearing from you.

 

Warm wishes

Boattripper
Member

Re: Anyone else still on eribulin?

Hello, I'm only on cycle 2, as I had a delay after cycle 1 due to high blood sugars. When things settle, I'm hoping to stay on it for some time. My Onc did say that she knew patients who had benefitted for 9 months or so. I 'm not breezing through without any side effects ( bit of neuropathy, thinning hair, low mood at times and muscle pain) but it isn't as severe as my last chemo, docetaxel. I think I'm also in the category of what next, so hoping for some stability on this.
mrsblue
Member

Anyone else still on eribulin?

Hi to all Spongebobs 😉  I'm now on cycle 7 having had stable scan results.  Neuropathy is becoming more noticeable, so the oncs are keeping a close eye on this, as I had neuropathy (and other bad SEs) with a previous chemo, Taxol.  I'll probably continue till cycle 8 then be taken off eribulin... then a break.... then... ?!?!?

I found an old thread where someone had had 9 cycles.  Anyone had 9 or more ( 1 cycle = 2 treatments) ?