68548members
360549posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Starting Eribulin

10 REPLIES 10
Highlighted
Member

Re: Starting Eribulin

I had a portacath put in prior to treatment starting, sure made life easy! But what to do with it now is an issue but I’ll keep it and use it for blood tests which will keep it flushed out in the meantime. First Fulvestrant injections done and not too bad and no side effects so far too! Best news is that I can now visit my horse next weekend! 😃😃

Good luck with treatment! Hope you beat my record!  By the way I always found exercise the best way to limit fatigue! Although that does sound counterintuitive! 

Sian

Highlighted
Member

Re: Starting Eribulin

Thank you everyone for your replies. I had my day 8 dose about 10 days ago. I find that the day after I am fine but then I am really sleepy. I slept about 36 hours, waking up occasionally. I think it might be the steroids as I have had that reaction before. I think I might ask to reduce them or maybe not even take them.

My hair is thinning but nothing noticeable yet. I'm still daft enough to use the cold cap but like you said, Sian, it makes a quick treatment very long! I enjoy the peace and quiet with a book. I'm not sure if it is helping or not but glad my hair hasn't changed much yet. 

I'll see what my bloods are like this week before my next Day 1. If they are bad again I'll ask again about the injections. 

I also have to have Covid swabs now. Not sure if that is because of chemo or because I am about to have a Port put in. They are pretty uncomfortable but quick. Anyone else had a Port? I am hoping it won't be too difficult getting it put in.

I hope you are feeling okay now about starting your new treatment Sian. The ups and downs are really tough. We just have to keep persevering. Really appreciate everyone's replies. It helps hearing others' experiences of Eribulin. 

Highlighted
Member

Re: Starting Eribulin

Well good news first I’ve pushed Helen’s record from 23 to 26 cycles of Eribulin with very minimal side effects I did need GCSF injections though but when I asked why I wasn’t having them when it was obvious at the beginning my neuts were all over the place they soon allowed them and from then on all was fine! I found out about Gcsf injections from Nicky! 

But things have now progressed and I now need a treatment change to Fulvestrant which starts on 1st July. (Sure hope my eyelashes grow back soon.)

I’m pretty shattered with this news though as things changed so quickly in the last 4 months since the last scan yet I still feel the same. I’m really quite ‘well’ and my blood test results have always been decent! (Since starting the gcsf injections) This ****** disease is the pits. I haven’t been able to ride my horse during this time too because of Covid 19 lockdown as I keep him in Wales at a specialist and special place and no surprise with my given name I’m in London. I need my equine therapy again even more urgently now! Sian

Highlighted
Member

Re: Starting Eribulin

Hi Peggy

I hope you're getting on ok with eribulin. As Nicky08 has said, I had 23 cycles with no break starting April 2017. I found it a fairly doable chemo, my hair thinned quite a bit but I kept it in a pixie cut for a few months before it returned to bob length & very thick again. I never needed the gcsf injections but do ask your onc if you feel that they might be helpful - you should definitely be able to have them. I didn't bother with the cold cap as eribulin is a very quick treatment and actually have never used it (lost my hair completely with docetaxol, epirubicin & paclitaxel). I did suffer a bit with peripheral neuropathy in my toes but found that went away if I sucked ice cubes whilst having the chemo - a tip I picked up from Nicky08 whilst on docetaxol! Been on treatment since Dec 2012 when I was diagnosed de novo sbc in bones, and liver mets came along in 2014. It is a roller coaster of emotions but over time you do learn to manage and try and live as well as possible.

Good luck & do read the thread 'Chemo buddy - anyone on eribulin'

Helen x

 

Highlighted
Community Champion

Re: Starting Eribulin

Hi Peggy,

just to say there is a thread lower down on this page with contributions from past and present members who have been on this chemo.  I've not checked it recently but you may find some ladies currently having it. and therefore able to help with any queries.  All these chemos and treatments seem to go in cycles, sometimes there are lots of ladies on a particular treatment and then the thread all goes quiet as they move on to something else. This has always happened during the long time I've been a member of the forum so it doesn't necessarily mean the thread is redundant it just might mean no-one is adding to it at present.

Nicky x

Highlighted
Member

Re: Starting Eribulin

Hi Nicky,

Thanks so much for your reply. I was wondering about both the things you mentioned! I haven't spoken to my oncologist yet but will ask her. I am keeping an eye on my hair and we'll see what happens! Seems like it might be thinning. I don't know anyone else who has had eribulin so really appreciate your feedback!

 

Peggy

Highlighted
Community Champion

Re: Starting Eribulin

Hi Peggy.

Glad everything went ok and you are feeling better overall. Just a couple of things you hair may still thin, even with the cold cap, I used it for one of the courses of Eribulin and it didn’t stop the hair thinning although I know of another lady who it did work for. The other thing is that there is no reason that you can’t have the gcsf injections just because the chemo is ‘palliative’! What a load of rubbish they are telling you! In fact, as far as I know, Eribulin is only given as palliative as it’s not used for primary BC. I have been given them for both courses of Eribulin and it kept my Day 1 and Day 8 doses on track otherwise I was missing a dose or it was delayed by a week or more waiting for my wbc to recover sufficiently. It is more likely to be a cost issue than any other reason!
Anyway, I hope you dont need them and that your hair isn’t affected too much.

Nicky x

Highlighted
Member

Re: Starting Eribulin

Hi Nicky,

I wanted to write and say thanks again for the eribulin info. It has gone pretty well so far. The best bit is that I have felt much better since my first dose. I don't know why but it feels great after a rough couple of months. I had to have my first blood transfusion because my hemoglobin was low. It is still only 80 but that's good enough. My day 8 dose was also delayed twice because my neutrophils were low but they have bounced back now and I had my day 8 today. Apparently, they won't use those injections with me to boost the blood cells because I am in the palliative stage. I was also offered a cold cap which adds 2 hours to the process and the chemo only takes 5 minutes! But I decided to try it and so far I haven't lost any more hair than normal. We'll see. So a mixed couple of weeks. So glad to be feeling good though and able to join in more with family life. Not sure if it is the chemo, the blood transfusion but I thank God for his gifts, on the good days and the bad days.

Hope you are having a good week,

Peggy 

Highlighted
Member

Re: Starting Eribulin

Dear Nicky,

Thanks so much for that info and also for info about steroids and those injections which I forgot to ask about. I have read that thread but will read it again. I feel nervous about starting a new chemo and I don't know anyone else who has been on it. So thanks so much, you've helped me feel more confident.

Peggy xx

Highlighted
Community Champion

Re: Starting Eribulin

Hi peggy

If you look further down the page on this part of the secondaries forum you will see a thread called (something like) Eribulin chemo buddy.....

On it lots of us have written about side effects etc of being on Eribulin over the years so it is worth having a quick read. It seems that various treatments go in cycles so at times there’s no one on them and other times they are used a lot so it depends at the moment how many ladies are on it as to current experiences.

I was on it last year until it was shown not to be effective but I had also been on it a couple of years ago but my oncologist at the time had said I would only have 8 cycles. It is however a chemo regime that can be given many more times than 8, it just depends how you tolerate it and obviously if it is still being effective. I think Helen44 had about 23 cycles and, between the 2 times I had it, I had about 20 cycles.

The main side effect for me was hair loss where I lost about 50% of my hair, not a good look although hair does start to grow back but for me it looked very straggly and thin, not everyone gets this. I did also have a low white blood cell count and had to have gcsf injections (which increase your wbc) however, not everyone needs these either. I did find that I didn’t need to take the steroids that are almost always offered, I just didn’t want to take them and I coped fine without having them so don’t feel you have to have them, it’s up to you whether you do or not.

Good luck with Eribulin and have a look at the other thread, it should help you get a better idea of what to expect.

Nicky x

Highlighted
Member

Starting Eribulin

Hi there, I'm new to the forum and I am about to start Eribulin chemo next week. I am just wondering about any side effects and also how long people have been on it for. Thanks so much!