It’s been awhile since I’ve posted anything - selfishly because I haven’t needed treatment since 2007.
I was dx with secondaries in the bones at the same time as primary bc in late 2005, so I’ve lived with secondaries since initial dx. I started off with 6 cycles of epirubicin, then mastectomy followed by radiotherapy in 2006. Then in 2007 I had 5 out of 6 cycles of taxotare followed by more radiotherapy.
I’ve recently found out it’s spread to my liver and I’m being put on eribulin mesylate (Halaven). It’s been trialed at The Christie for 18 months or so and apparently is very successful in both Europe and the USA. I get the impression that I’m very fortunate to be offered this treatment.
I’ve got some info on it from Cancer Research UK and I need to do more digging myself. In the meantime, I wondered if anyone’s on it and what anyone knows of it - and is it as debillitating as tax? Seemingly, I can stay on this for as long as my body can tolerate it.
I know a lot of you are extremely knowledgeable on all things cancer, so if anyone can help me here, I’d be very grateful.
Hi Grannyscouse, I’m in similar situation in that I was dx 2004 had FEC, mastectomy then Tax. Liver and bone mets dx in Feb. Have had venoralbine then capecitabine with little success so now started Eribulin. Had cycle 2 day 1 last week. keeping my fingers crossed for this one! So far side effects been minimal, some tiredness and nausea and sticky eyes. Nothing like tax TG. lost my hair within 3 weeks though. Like you am bit in dark as to what to expect so if any others out there who have have this treatment for longer would be great to hear from them. Good luck and keep my posted how you get on.
Aw, thanks Ritz for your reply. Glad side effects aren’t as bad as tax. Hmm, hair loss. Hope it isn’t complete hair loss. Please keep in touch as you go along. I will.
Best of luck with the eribulin ladies Its pencilled in as my next treatment option so I’ll be looking out for updates from u. Really hope you have a great response.
Tina x
Hi there
Thank you grannyscouse for mentioning this discussion. I thought I would add my name to this group. I have secondary bc - diagnosed in 2009 -paclitaol x 8 cycles then a chemo break (which i asked for so i only have myself to blame for the…) bone mets diagnosed in 2010 then on xeloda until they diagnosed brain mets in may of this year. I stayed on the xeloda while they treated the brain mets with gamma knife but xeloda has now stopped having any effect (it did seem to be controlling my liver mets til recently) so I have been put on eribulin. I have only had one cycle (2 doses) and it seems really tough, I have lost all my hair and had a 2 night stay in hospital with an infection
On a positive note I do think it might be doing something, my last blood test showed improved liver function. I’m off to see my onc tomorrow so should know more then
Cheers mx
Ps a very good friend of mine has told me that I always struggle at the start of chemo (I don’t really recall - chemo brain maybe?) she says that after the first couple of cycles I get much better at coping with it, hopefully she’s right and it will get easier. I hear that most women don’t find it that tough, clearly I’m being a drama queen :-))
Well, I had my first dose of Eribulin on Tuesday. As it’s been 4 years since I had chemo, I’d totally forgotten the format. And the chemo suite at The Christie has moved and I didn’t know where I was going. I ended up in the private chemo suite! The drop-dead gorgeous receptionist said I’d be seen straightaway and I thought great. She asked my name, couldn’t find it on the computer, by which time I’d dug out my appointment card. Private patients must have a different coloured card because as soon as she saw mine she stood and headed for the door, opening it wide. She was very nice about it all though and directed me to the proper place.
Anyway, I wasn’t seen straightaway because there was a 4.5 hour backlog!!! And I was the very last one to be treated! I didn’t mind though as I’d found myself a lovely comfy corner in the Relaxation Room and drank my green tea and read my book.
Imagine my surprise when the nurse told me it would only take 5 minutes to administer! Plus the flushing out before and after, which only takes minutes anyway. What a doddle! And I feel fine after it. Mind you, I’m still on steroids so I’ll see how I go on in a few days.
So, onwards and upwards, and I’ve got it all to look forward to again next Tuesday as well …
Hi grannyscouse, how are you getting on with the eribulin? I’ve now had 3 cycles and have found it fairly easy going. I do suffer with severe cramps in fingers and toes for few days after each dose though. Complete hair loss i’m afraid although still got some eyebrows and lashes.
Hi ritz
I have started a thread for us eribulin ladies- please join us. There seems to only be a few of us on this so it’s good to share experiences.
The thread is in the ‘secondaries- treatments and medical isses’ section and is called ‘Eribulin/ Halaven Ladies’.
Glad you are tolerating it well I have just finshed my first cycle and have found the se’s to be minimal. Onc keeps telling me I might keep my hair but the ladies on here all seem to be losing theirs…
Have you had any scans as yet to see how the eribulin is working?
All the best
tina x
Its pencilled in as my next treatment option so I’ll be looking out for updates from u. Really hope you have a great response.