Hi Mrs B
I was also taken off the eribulin as the response was not what they had hoped for. But the Oncologist was telling me they are getting a good response from this drug. I do hope all you spongebobbers have a really great response, I wish you all well on this treatment.
I was originally put on letrozole as the first phase of my treatments. I have had a really bad responsse to a new chemo (myocet & cyclophosphamide) spending a week in Christies. 2 weeks later I am starting to feel better. I am seeing my oncologist on Monday as to the way forward and I will tell him about you Mrs B and see if putting me back on letrozole could be an option.
love to all
Hi all, and thanks 🙂
I'm now on letrozole, again - this was my first treatment after dx (bc+bone mets) in 2006. Much kinder in terms of side effects... and I'm feeling less fatigued already, now I'm no longer on eribulin.
Esha Ness - as you say, there is a theme of the sea... very appropriate, because eribulin was developed from a compound produced by a marine sponge.
To answer various q's:
My hospital doesn't prescribe steroids for eribulin, I wasn't offered them anyway. Fatigue (which I've never had with previous chemos) became a problem after cycle 5. I lost almost all my hair, eyebrows and eyelashes. However - I found I didn't need anti-sickness drugs by IV, I just took domperidone tablets when needed.
Peripheral neuropathy can be a problem, again I noticed this getting a bit worse recently.
Sadly I've had to stop eribulin (I had had 7 cycles) as my tumour markers/liver function results showed it had become less effective. I am on another treatment (not chemo) and am awaiting PET scan at end Nov.
I'm glad I had a go at eribulin though - it is a useful addition to treatments available for us who have metastatic bc. It should be available to all, including those in Wales.
Oh, and I lost 7 lb in weight. I was pleased (I confess to being overweight and undertall) but the oncs weren't.
Morning Mrs B! yep, I am still on Eribulin. I have just completed cycle 9, I have been on it since early April. I am feeling really well, but... I have started to get mild pins and needles in my foot. However I'm happy to cope with nerve damage as it's keeping my tumours in my liver stable... xxxx
Hi Eribulin takers!!!
I had my first treatment of Eribulin last week 16th Oct and did not need to take anti sickness tablets when I got home. No obvious signs; so lets see how I fair today after my second treatment.
I have noticed that since I finished the Capecitabine which I only had two cyles, there is an obvious change in the soles of the feet and palms of my hands they are changing back to "normal" and my nails grow quickly and are very strong.
Will be in touch shortly. Hope you are ALL doing okay as can be expected.
Thanks for a respnse.. I hope you feel better soon. I will be in touch after Wednesday. Talking to my Chemo Nurse this morning, she said that the women she had seen, and not many in her Unit on this drug have coped quite well. I was concerned about my skin getting darker than it is as I am a LADY OF COLOUR!!! She said most women complained of tingling sensation at the tips of their fingers as well as toes.
I can't remember if you said you lost your hair on the first cycle so will re-read your message again. Yes, I know we are all different so lets see how I do!!!
What is/was your worst S.E. on Eribulin, the fatigue and mood swings I thought was normal. On Paclitaxel then Capecitabine the fatigue was about the same. Funny how Paclitaxel robbed my hair and blackened my nails hands and feet. Whilst Capecitabine restored the colour of my nails BUT blackened my palms and soles of the feet. I only had 2 cycles of Capecitabine before it was deemed not to be work. So its been almost 3 weeks and I have noticed the colour is slowing coming back. It will be INTERESTING to see what Eribulin, did you have discolouration to hands and feet?
It will be nice if we can all keep each other going. Though I am nervous about starting Eribulin am a little curious at the same time.
Will be in touch - WATCH THIS SPACE
Hi Mrsblue and boatripper!!
Thank you for your response, I was on Cape for 2 cycles, my hair continued to grow after Paclitaxel wiped it out. The only S.E. was blackened nails both hands and feet and on Black Skin is not a good look!!!
I am hoping to get some stability on this drug. As a question, were you advised to change your diet... I will be in touch after Wed which is MY BIG DAY!!!
Hoping you had a good weekend.
Hi, eribulin newbies! (waves hand)
OK... this is my experience, for what it's worth. After only 2 weeks I lost most of my hair, but no further head hair loss after that. So I now look like Gollum in The Lord of the Rings !! Also lost my eyebrows and eyelashes. I have been known to remove my wig at clinic appointments to shock the onc on duty!
The best thing about eribulin, after having had capecitabine, is that the hand/foot syndrome wears off, and I can do things like wearing crocs, preparing vegetables, and playing the piano, after 2 years on cape. Also my nails are almost normal - I went straight on to cape after paclitaxel, which didn't work for me and gave me SEs more typical of docetaxel.
Interesting that you mention low mood with eribulin - me too, though I assumed it was to do with other family/life events not relevant here.
Fatigue was new for me, but I am learning to manage it.
Oh dear, I do hope this works for you, like you I am in the "NEXT" group, I have been on paclitaxel - robbed my hair but felt well no side effects. Then in July this year when on to Capecitabine which left my hair to grow into a thick afro, I could give Michael Jackson a run for his money if he were here today. That didn't work and so next Wed 16 I start Eribulin. Wow you lost/noticed thinning hair after 2 cycles.
I hope you have a good weekend, I am in London and its MISERABLE a bit like how I feel.
Hi Mrs Blue
I am about to start Eribulin next Wed 16 Oct. I wonder can you tell me anything that I should know to help myself along. Have you lost your hair and if so, how long did it take before you noticed it thinning out? For you what is the worst side effect. I am just getting over Capecitabine tablet form of chemo, as it didn't really work but has left me with a blacker face (yes, I am a woman of colour) and I have to force myself to leave the house for hospital appointments. The palms of my hands and soles of my feet were blackened too. It has been 3 weeks since I have stopped taking the Capecitabine and I have noticed a change in the skin, my palms are getting lighter, luckily it did not rob my hair which went when I was on Paclitaxel for 18 weeks, I don't know how I will fee having to loose my hair a second time in a year!!!
I look forward to hearing from you.
Hi to all Spongebobs 😉 I'm now on cycle 7 having had stable scan results. Neuropathy is becoming more noticeable, so the oncs are keeping a close eye on this, as I had neuropathy (and other bad SEs) with a previous chemo, Taxol. I'll probably continue till cycle 8 then be taken off eribulin... then a break.... then... ?!?!?
I found an old thread where someone had had 9 cycles. Anyone had 9 or more ( 1 cycle = 2 treatments) ?