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Chemo Buddy Needed - Anyone Currently on Eribulin?

Lozzer2014
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Vicky

Glad you are feeling more active.  Good news about results.  Hopefully I will ne lucky too.

Lx

 

Vicky77
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Lorraine

I have been really poorly for about 6 months and very inactive so wasn't sure if that was the reason for my jelly legs but now I'm much more active I still have the lead legs. I'm on about cycle 5 of Eribulin and scanned after 3rd cycle and it's working really well for me. This chemo was the last chance saloon for me but so far so good with a reduction on my liver mets.

I also feel so much better and have little side effects so fingers crossed it continues to work for some time as prior to this I had  3 consecutive  treatments that didn't work for me.

Good luck with your scan results I hope it has worked as well for you.

 

Vicky 

Lozzer2014
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Vicky

Thanks for your reply.  I am sorry that you are also suffering.  For me this has only come on in the last two weeks.  Sometimes it is such an effort to move around and like you say stairs are a problem.  I am seeing my consultant next week so will ask him.  I am due to get my first CT results on Eribulin to see if it is working.  If it is then it is a double edged sword as if side effects affect my legs badly then that is not so good.

Will let you know what he says.

Regards,

Lorraine

Vicky77
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Lorraine

I have neuropathy in my hands and feet , and also have lead legs. 

I don't really have any other side effects and I'm finding Eribulin very manageable apart from the legs.

I feel like I'm walking on someone else's legs and find the stairs hard too. I have to try not to carry anything up the stairs so I can use both hands to pull myself up. 

I didn't mention this to my consultant yesterday but will next time I see her. 

 

Vicky

riversidedawn
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi ladies can I join your group? I start eribulin on Friday. Sorry to hear about Moijan, we crossed paths on many occasions.

 

Original dx sept14, mx, implant, stage 3, 26 affected nodes, FEC-t followed by rads.

Delayed DIEP sept 2017.

Bone Mets Dec 2017 -  palbocciclib/letrozele 10 months

HlJan/Feb 19 - Mets in peritoneal cavity including bowel obstruction so emergency ileostomy and stoma in Feb2019, weekly paclitaxel 4 weeks later. Had 2 cycles, 6 doses my ct scan shows progression in perineum and new Mets in the liver.

So now onto eribulin day 1 and 8 of 21 day cycle.

 

I've managed to keep a reasonable covering of hair through taxol. I cold capped in 14/15 and lost 50% to thinning. I couldnt face the extra teatment time involved but find it looks pretty much same now as after first FECt . Ie a mess that doest need hats, scarves,wigs etc but still doesn't look right! 

 

Look forward to sharing this next stage with you. All tips gratefully received, especially how to gain weight with poor appetite? 

 

Riversidedawn x

 

 

 

 

riversidedawn
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi ladies can I join your group? I start eribulin on Friday.

Original dx sept14, mx, implant, stage 3, 26 affected nodes, FEC-t followed by rads.

Delayed DIEP sept 2017.

Bone Mets Dec 2017 -  palbocciclib/letrozele 10 months

HlJan/Feb 19 - Mets in peritoneal cavity including bowel obstruction so emergency ileostomy and stoma in Feb2019, weekly paclitaxel 4 weeks later. Had 2 cycles, 6 doses my ct scan shows progression in perineum and new Mets in the liver.

So now onto eribulin day 1 and 8 of 21 day cycle.

 

I've managed to keep a reasonable covering of hair through taxol. I cold capped in 14/15 and lost 50% to thinning, l

I couldnt face the extra teatment time involved looks pretty much same now. Ie a mess that doest need hats, scarves,wigs etc but still doesn't look right! 

Look forward to sharing this next stage with you. All tips gratefully received, especially how to gain weight with poor appetite? 

 

 

 

 

Lozzer2014
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Ladies

Looking for some advice.  I have now had four cycles of Eribulin and at times find the side effects hard.  At the moment I am at the end of my week off and my legs are really aching.  I have some neuropathy in my feet and hands.  My legs feel like lead weights and going up and down stairs is an effort.  Just wondering if anyone else is suffering with this?

Any comments would be greatly appreciated.

Thanks.

Lorraine x

nicky08
Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi alison

Ive not had bad neuropathy myself, just very mild however a friend of mine has. Her chemo nurses suggested she iced her feet whilst having the infusion (of a different chemo) and this she said helped. I’ve also heard of some chemo units having ice gloves. All similar in practice to the cold cap.

Hope this helps and you’re able to tolerate these SEs

Nicky  xx

Alisonc
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Withasmile,

 

I had 3 cycels of eribulin then had to delay one cycle because of the intense neuropatyhy. It affected my hands such that I couldn't really write, type, open a tea bag. My feet were also affected, almost tripping when walking. Very weak in my leg muscles. So wild! I started up my treatment last week, and go again tomorrow. Will have a scan Friday as it has been 2.5 months since I last scanned. I had amazing results so quickly and just pray that I can continue Eribulin, and that it will continue to work. The question remains how to deal with the neuropathy. I already feel it creeping back in after last week's infusion. Any great thoughts?

 

Tell me about your equine therapy and how it helps please.

 

XO, Alison

Alisonc
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thank you so much Helen! I started it again last Tuesday. Just seeing your reply now, as I was away with my daughter for her spring break.I meet with my oncologist at Dana Farber in Boston for scans etc on Friday and hope for some great information.

 

XO, Alison

helen44
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Alisonc 

Sorry to hear that you are suffering with neuropathy. If you look back on this thread you'll find that a few of us experienced neuropathy. I had 23 cycles of eribulin during which I had neuropathy mainly in my toes but also a strange numbness in my shins and calves from time to time. No-one really knew what to do about it but when I had paclitaxel afterwards I rested my feet on ice packs during chemo and it really helped ease the neuropathy. It did take an hour though and eribulin is much quicker to administer of course.

Withasmile has taken breaks from eribulin & restarted it so hopefully she might see this & reply, have a look back on the thread at her posts. All the best with your treatment. 

Helen x 

Alisonc
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi, I completed my fourth cycle and have to take a break because of my neuropathy. It’s pretty bad. And I am wondering if you know whether people start up again. If the cancer cells recognize you were on it already and it doesn’t work when you do start up again. I can’t see it it’s resolving very soon. It doesn’t seem like from any of the comments above that people experience neuropathy. Any suggestions are helpful I was feeling great on it and doing really well and am wanting to continue with it. How do I get this neuropathy under control? Thanks 😊

Lozzer2014
Member

Re: Anyone Currently on Eribulin?

Hi Ladies

Sorry to hear your stories about hair loss.  I lost mine during paclitaxol and only have a very fine amount.  I have two lovely wigs one of which i wear the most.  Does get itchy after a day of wearing it.  Don't bother around house.

Had a bit of a weekend last weekend with high temperature which ended up with a couple of nights stay in hospital whilst they tried to work out where infection causing temperature was.  They then put it down to chemo.  I had had one dose of Eribulin but not sure it was that.  On antibiotics and feeling better.  

Unfortunately this meant no second dose of chemo this week.  I have to wait until next cycle is due on 14 March.  This worries me as to cancer progressing in the meantime.

As to looks from people which I find I get when wearing turbans/hats I just smile at them and think to myself well I might have cancer but here I am out and about and getting on with life.

Lorraine 😆

 

 

 

 

 

London1
Member

Re: Anyone Currently on Eribulin?

I didn’t use the cold cap and I have lost a bit more than 50% of my hair if that helps! But the good news is that it stabilised and now after 3 cycles I think I won’t lose any more. There is enough of a fuzz left to have the wide headband look still, as I hate wearing hats. This is the third time of loosing my hair and it doesn’t get any easier to cope with! But the first two times I was bald so I had to wear caps! So this time it is a bit easier than that! Sorry to say though that I also have very few eyelashes left now. That is the pits! However I’ve just got some of the new c-lash false eyelashes for chemo patients in reserve now. I haven’t used them yet though as from a distance smudged eyeliner seems to work! But it needs regular reapplication as my eyes water a lot because of the lack of eyelashes! I’ve also got a real hair false fringe which I also keep in reserve! It matches in quite well surprisingly. 

 

I too just hate ‘that’ look that some people can’t help but give you and I’ll do a lot to avoid it! I don’t want to be pitied I’ve just had bad luck. I still think I’m fitter than a lot of people my age and when challenged recently my onc had to agree! And there are still many good days! Sx

Vicky77
Member

Re: Anyone Currently on Eribulin?

After successfully persevering with the cold cap for 9 sessions of Paclitaxol and being reassured that you don't lose your hair on Eribulin I have lost over 50% of my hair in 4 days.

I know in the grand scheme of things it's minor,  but I can't tell you how sad this has made me. Keeping my hair was the one thing I felt i had some control over. 

Hey ho will dust the hats off and get used to people looking at me with pity again!! 

 

Vicky 

Dennise
Member

Re: Anyone Currently on Eribulin?

I relate to so many on this thread, but even though we all have Stage IV breast cancer we are all different. I will start haloven on Monday and will turn 66 during my first off week. I did not start out Stage IV, mine started out Stage II. My colon cancer, however, did start out Stage IV, so now I have two Stage IV cancers. The breast cancer is the most agressive though, now being in breast, liver, and bones. The bones are giving me the most trouble. I have 6 tumors in my spine and have recently found out that it has now reached my skull too. Collar bone, shoulder bone, and rib recently broke due to the cancer, they called them pathological breaks. The ones in my legs and ankles are acting up now making it hard to walk but I'm stubborn and keep on doing as much as I can every day. Right now I'm trying to put a book together for my sons to make it easier for them to find what they need after my death. I feel this will give me a greater piece of mind that I'm done dealing with all this death stuff and can start doing more of the stuff I want to do. It's about to be spring here in the south and I can't wait to start working in my yard again!  I've planted so many of God's beautiful flowers over the years and am very much looking forward to seeing them bloom again. Looking forward to walking around flowers with grandson Carter later this month and hoping to get to do the same with my grand daughter Zoey once she can walk, but I've got to wait a little while for that since she's not quite five months old. I've got a lot to live for so I'm fighting this cancer thing with all I've got. Hanging in there for a little over seven years now. 

Vicky77
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi

Good to see it's working well for you it's great to hear positive news. 

I've had my first circle without any problems fingers crossed it continues. This is the last chance saloon  for me so everything rests on Eribulin to sort my liver out.

I haven't walked my dog for so long and I miss it so much, dog walking is like therapy it just clears your head especially on a beautiful day like today.

My mobility was affected by fluid build up and the cape and I've never really got my strength back.

In have sat in the garden for a few hours which was fab. 

 

Vicky

London1
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello all, I received CT scan results today after 3 cycles of Eribulin which started mid December. (The first was abandoned though due to low neutrophils and the other 2 needed me to have an extra week to recover neutrophils sufficiently well to continue treatment) But despite not following the best practice standard treatment programme, results still show stable! Phew! I now have three largish liver mets with multiple small liver mets ones too and a single bone met which has always stayed stable from the beginning when diagnosed secondary from the start in feb 2014 (liver and bone.). The third liver met grew when Capecitabine stopped working (sometime after cycle 17 (when a mid may scan was stable) I completed 22 cape cycles in all then a mid nov scan showed the new one which had grown from nothing to 21mm. So in my book as I was not on a working treatment for possibly 6 months Eribulin is very positively working! Double phew! I’ve been completely ‘normally’ well on it too and the only not so great side effect is lack of hair and eyelashes. I’m not completely bald though as it stopped coming out after the first infusion of the second cycle and I can just get away with a wide headband. Good luck to all others now on Eribulin. Take time to enjoy the lovely weather! I’m going to take the dog for a walk now something I had to stop doing while on cape because it made my feet hurt too much and I’ve just spent the last week with my lovely horse too so all good! X

Vicky77
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Lorraine

I haven't had any bad side effects from the Eribulin as yet. Had the 2nd yesterday and now have a week off.

Have you rang the hospital? You should if you have a temperature and get them to them to check you out.

The steroids are helping and I'm having days of good appetite and I managed to get up the stairs last night without gasping for breath so hoping a little bit of improvement in my general health. I'm feeling much older than 47!.

Hope you temperature settles but best to get the experts to check you out.

All the best

 

Vicky

 

Lozzer2014
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Vicky

Sorry to hear your news. I hope Eribulin is the answer for you.

I certainly hope it is for me.

I started on Thursday but havebeen feeling rough since.  Headaches and my temperature keeps spiking.

How have you been?

Hello to all you other ladies in this thread.

Have moved from Paxitaxol thread.

Best wishes.

Lorraine x

Vicky77
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi all

About to start on Eribulin on Friday with apprehension.  This will now be the 4th consecutive treatment because the other 3 haven't worked. Devastated at more bad news. Oncologist has said today that I won't be going back to work and she will sign anything I need to obtain pensions etc. She is also referring me to Loros. I feel I am at the start of the end. 

To be honest this was the news i expected but still a shock to hear it. The treatments I've had just won't get my liver under control.

Fingers crossed this will be the miracle I need. It's hard to understand why some treatments work so well for some and not others.  

Off for another cry .

 

Vicky

London1
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks Nicky, I asked how common it was to have low neutrophils with this and my onc was very non committal. So good to know it is not so unusual. I did ask about the injections and his approach as I’m new to the chemo was let’s see if an extra week works first. Also I read about the side effects of the injections and was put off as they sounded horrid wheras apart from the neutrophils so far the chemo is very tolerable.

A bit more hair started to shed again today but I also use the head band approach when out and indoors, otherwise a hat as it is so cold with such thin hair! I hope the remaining hair stays and look forward to it growing back. Eyelashes on my right eye practically all gone now really hope they start growing again soon! I have to tell people I’m not crying honest! X
nicky08
Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi spongebobs

I tend to read threads where I have also had the same treatment/s and offer help if I can. So this is mainly to London1. I was on Eribulin about a year or so ago andalthough it is a very well tolerated chemo I also found my neutrophils were completely floored each cycle. I also had to miss or delay some cycles because of this in the early ones but was put on GCSF injections to boost them for subsequent cycles. I didn’t have any problems after that. It might be worth mentioning this to your oncologist? I also lost a fair amount of hair between dose 1 and 2 of the1st cycle , I mean about 50%, but didn’t notice much if any further loss after that. I had used the cold cap and felt I should carry on with it but I don’t think it helped a lot and there’s no real evidence with this chemo that it does. My hair also grew in length during the 8 cycles I was on it for and some of the hair that had fallen out did regrow during that time as well. I found some wide fabric hairbands in Claire’s (the accessory shop) which I found hid my thinning crown quite well and were comfortable to wear.

Good luck to you, and all other spongebobs!

Nicky x

London1
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Heard today my neutrophils are still too low to start cycle 3. They are keeping me on a full dose and hope that they will recover if given an extra week. He said that was same as having a reduced dose and the standard 21 day cycle. Did you have this problem? It does mean I can’t join in on a planned clinic with my horse, so pretty fed up at that!
withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hi London 1

I've been on and off Eribulin for the past few years- I started back with Moijan in the 'early days' and it worked well enough that I've been able to take breaks at 6-months. I'm just about to start back again next week.

Eribulin is my 5th chemo, I'm stage 4.

 

Yes, I totally agree with no cancer problems only treatment problems, and yes I too have equine help!

Kindest wishes xxx

 

 

 

London1
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello! After 22 cycles of Capecitabine (which I tolerated mostly okay) it stopped working and I had further progression in my liver so I started Eribulin 14 Dec. That first infusion hit hard and while I felt completely fine (no nausea and only noticeably really tired on day 3) my neutrophils were slammed to below 1 so they gave up on that cycle while I had a power port fitted too. About half my hair fell out just after Christmas but then it stabilised. I’ve completed cycle 2 now and no sign of more hair loss (yet). Neutrophils were 3.6 before the 1st infusion and just 1.5 for the 2nd one, the cut off for delaying chemo. So I’m sure that will be an ongoing issue for me! I did look back at all the comments on Eribulin on the forum and can confirm it is definitely a tolerable chemo! I was straight to stage 4 with lobular BC multiple liver mets and a single bone met. This is my 4th chemo. I’m just coming up to the 5 year anniversary too.
But I’ve never felt ill from the cancer, treatment on the other hand not great! But I have regular equine therapy which is the best!
Kaysway
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

I will start mine on wed 16 Jan
I have MBC it has spread to both lungs now. It's chemo drug no 7..
helen44
Member

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
Angiex
Member

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
Jen42
Member

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

Jen42
Member

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
evie510514
Member

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.

LilyFB
Member

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

C A S
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks Helen and good luck on paclitaxel x
C A S
Member

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
helen44
Member

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
nicky08
Community Champion

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

Jen42
Member

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 though:)  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

 

 

 

 

 

C A S
Member

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.


withasmile
Member

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

MaggieB
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

 
laurainboston
Member

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.

helen44
Member

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
Bousy
Member

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

withasmile
Member

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

withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

yay! Happy birthday Bousy and happy scan results!

xx

laurainboston
Member

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

Bousy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks Nicky. Just hope it keeps working. Side effects are kicking in a bit more now but can cope with that.

 

Bousy x

nicky08
Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hey Bousy

Great news and a very welcome relief I’d imagine 😊 We all love a Stable Mabel so thanks for sharing with us and long may Eribulin work it’s magic. Enjoy the next few months between scans! Oh and a belated Happy Birthday, what a lovely present 🎁🎈🎂

Nicky x

Bousy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Everyone,

Just got back from the hospital where I received my results from my 3 monthly scan. I am still stable after 20 cycles of Eribulin. It’s my birthday today so best present I could have. Take care everyone.

 

Bousy x