Eribulin

Hi happy bunny,

You're a few weeks ahead of me. It'll be my 5 year cancerversary in September. I did have 6 monthly MRI scans, but my bone mets were picked up on a ct scan when I was in hospital having reconstruction 3 years after diagnosis. 

I was on palbociclib and letrozole for a year with 3 monthly MRI scans until February this year when it spread to my abdomen resulting in bowel surgery. I had 2 cycles of paclitaxel followed by a CT scan which showed peritoneal progression and spread to my liver. 

I switched to eribulin 2 weeks ago. I'm on week 3 of my first cycle and will be scanned after the second cycle.I've not met many people on this treatment. How have you found it? Please let me know your scan results when you get them, I really hope this works for us both. 

Hi Happy Bunny and Riversidedawn

I'm ahead of you both on Eribulin.  This is also is the last resort for me.

I had 18 months on Anastrozol and then Zoladex, Cape and Paclitaxol the later 3 didn't work for me. I have bone and liver mets.  I was told after the Paclitaxol failed that if the Eribulin didn't work I might only have a few months..

However first scan of Eribulin shows partial response in the liver and I'm feeling so much better on it. December until April I sat in a chair and barely moved. I'm now cooking, cleaning and walking the dog again and feeling fairly well. For me the Eribulin doesn't have many side effects.  I lost my hair (they said I wouldn't). Also my legs feel heavy which a few women have reported, like lead legs which makes stairs hard work. 

So far so good. I have finished work on I'll health (I'm 47) but if I continue to improve would love to go back.

Just finished another cycle so due another scan soon so fingers crossed xx

All the best with your treatment. 

Vicky

I'm also on this.  I've had 1 cycle so far.  No 2 starts this week.

I haven't been told that this is my last chance so hoping that isn't the case.  I'm not ready to give up yet.  They are saying my cancer is learning very quickly so seems to become resistant quite quickly and is acting like triple negative but isnt. I think my average before a change is 3-4 months.  I have inflammatory as well.

I have found the 1st one not too bad.  Bit more tired than paclitaxol, but much easier than EC.

Have my fingers crossed for you for your scan xx

I'm just starting my 13th cycle of Eribulin - apparently my last chance drug as well! 

The first 3 cycles (one at 100% dosage, 2 on 75%) put me in hospital for 9, 5 and 5 days respectively due to severe neutropenia. On the first cycle I had a PE whilst in hospital as well, so now on anticoagulant jabs for life. 

My hair all fell out on day 8 of the first cycle (I didn't even make the day 8 dose!), which I wasn't expecting but apparently happen on rare occasions. Since I went on the 50% dosage, it has grown back, although not as thick as it was - I now look like I've had an old people's perm as it came back really curly!

I too have the heavy, weak legs and can't walk very far now, which is a pain, and I get a lot of cramp. Potassium and magnesium levels are normal and the consultant said no to quinine as it is a big red for interaction with Eribulin (apparently can cause heart attacks!) 

My vision is also deteriorated really quickly - I've had 4 pairs of glasses in the past 8 months and it's still changing...

I'm very tired a lot of the time, but we're not sure whether that is directly due to the Eribulin, the cancer, the painkillers or a combination!

Other than that, I've found it relatively kind since it stopped trying to kill me!!!  

I have a CT scan every three months and a radio bone scan every 6, and I see my oncologist after every 2 cycles (so 6 weekly) 

At the moment, the Eribulin is keeping things relatively stable on a 50% dosage, which is great as I've not had a huge amount of success with other stuff. We're keeping on keeping on until it stops working, then we'll look under the kitchen sink for some spare bleach or Mr. Muscle or something! 

Good luck to everyone else on the drug - I always celebrate the fact that it's SUCH a quick chemo - quick in and out whilst everyone else is sitting there for hours... 

Hi all,

So I'm abbot to start eribulin in the next few weeks... any tips??

Thanks x

Hi button.

As I said earlier I have only had 1 cycle so by no means an expert on this one but for me I have continued pretty much as I did before.  On chemo day, it is extremely quick - it takes them longer to get me settled and canulated than the actual chemo (takes about 6 mins!)   I always try to eat a proper meal before I go so I can just snack on what ever I fancy later and I don't make any plans for that night as I tend to get quite tired and although I go off to work the following day I am a bit foggy until about lunchtime

So had my 1st dosage yesterday. Its made me super tired but im hoping that will be it! 

The doc already said that I'll lose my hair and the cold cap won't  work. 

Love hearing positive stories so fingers crossed for us all x

That is the worst that I feel.  My afternoon/evening after chemo consists of straight into my pjs and finding my spot on the sofa and I don't tend to move until bedtime (which is much earlier than usual!!)  Hubby does bedtime and I'm usually ok for work the next day.

I am usually a little foggy first thing - takes me a little longer to get going and I use the excuse for hubby to bring me tea and toast in bed so I can take the steroids!! Fingers crossed it works for you and it gives you great quality of life with your munchkin.

I was told hair loss with eribulin was about 30% of people.  I've had 2 full cycles so far and haven't lost any.  Hoping it stays that way, I'm wanting to ditch the hats.

Interesting what we've all been told about hair loss on Eribulin! 

I was told that it is rare to lose all hair on the drug, although it can happen. I lost mine on day 8 of the first cycle - it suddenly started to drop out with no warning - I looked like Gollum, so it all had to go! That was only on one dose of the two in the cycle. 

However, since I've been on a 50% dosage, it's grown back, although thinner and greyer than it was (disappointing as when I did FEC a few years ago, it came back thicker and darker!!!) 

Hope everyone is doing okay! 

Hi all

My consultant said you don't lose your hair on Eribulin and I did after 10 days.  Was very upset as had been using the cold cap whilst on Paclitaxol and kept all my hair. I told her not to tell people they wouldn't lose it but to say that it's uncommon but not impossible. She said she didn't know of any other patients that had lost it. 

Have a short fuzz all over of multicolours so will wait and see

Scan next week fingers crossed it's still doing it's thing.

All the best to everyone.

Vicky