Member
Posts: 344
Registered: ‎18-01-2013

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member
Posts: 1
Registered: ‎03-11-2018

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member
Posts: 3
Registered: ‎23-10-2018

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

Member
Posts: 3
Registered: ‎23-10-2018

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member
Posts: 1
Registered: ‎30-10-2018

Anyone Currently on Eribulin?

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.

Member
Posts: 30
Registered: ‎01-05-2012

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

I’m changing to eribulin next week. Can’t find much info on it? How are SEs? Xx
Member
Posts: 5
Registered: ‎30-07-2018

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks Helen and good luck on paclitaxel x
Member
Posts: 5
Registered: ‎30-07-2018

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member
Posts: 344
Registered: ‎18-01-2013

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Community Champion
Posts: 4,507
Registered: ‎01-05-2012

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

Member
Posts: 3
Registered: ‎23-10-2018

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

  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 thoughSmiley Happy  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

 

 

 

 

 

Member
Posts: 5
Registered: ‎30-07-2018

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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.


Member
Posts: 215
Registered: ‎10-08-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

Member
Posts: 8
Registered: ‎02-08-2017

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

 
Member
Posts: 7
Registered: ‎29-07-2018

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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.

Member
Posts: 344
Registered: ‎18-01-2013

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Member
Posts: 69
Registered: ‎27-10-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Withasmile,

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

 

Bousy xx

Member
Posts: 215
Registered: ‎10-08-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

Member
Posts: 215
Registered: ‎10-08-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

yay! Happy birthday Bousy and happy scan results!

xx

Member
Posts: 7
Registered: ‎29-07-2018

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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