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) ?
Hello, I’m only on cycle 2, as I had a delay after cycle 1 due to high blood sugars. When things settle, I’m hoping to stay on it for some time. My Onc did say that she knew patients who had benefitted for 9 months or so. I 'm not breezing through without any side effects ( bit of neuropathy, thinning hair, low mood at times and muscle pain) but it isn’t as severe as my last chemo, docetaxel. I think I’m also in the category of what next, so hoping for some stability on this.
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.
Warm wishes
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.
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.
:smileyhappy:
Hi to All on Eribulin
It’s a comfort to know you are out there with it being quite a new drug.
I have had my first shot today and will keep you updated on side effects. Writing this at 1.43 am is steroid hype!
Good to know we are going through this together.
Hey Mrs Blue, so glad eribulin is working for you, Christies (where I am now) say they have had good results with this drug.
All spongebobs, I hope it works for you giving “C” a big kick up the butt.
Love and best wishes, Elaine xx
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 to all taking Eribulin
I am due for my second shot of Eribulin tomorrow and would like to know if the side effects on the second week are worse than the first. And then what is the week off week like?
I have been absurdly tired this first week and hoping this will improve. Are you all prescribed steroids too? Also I seem to have lost some weight too ?
Sorry to be firing you with questions but hopefully I can be of some help to others at some point. Oh yes and the other question is at what point did hair thin/ fall out. Anyone kept their hair? It would be such a treat to keep my hair having lost it twice.
Look forward to hearing from you .
Hi all…
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.
Hi Mrs Blue and Boat Tripper
Thankyou for getting back to me so quickly. Very helpful . Firstly Mrs Blue , I hope that your next round of medication will stabalize any further activity. What non chemo are you going on? Let’s hope with mild side effects!
Boat tripper I am interested to hear that you have stopped steroids as This huge whack of steroids that I take puts me on such a roller coaster ride. I will ask the consultant if I can reduce . Well if my hair is going to go it is likely to go this week. I am so hoping that it will stay but as we all know in this we have no choice and are made to somehow try and get our heads around what is happening to our bodies.
Salsa babe I hope that your added blackening to your soles and palms is settling. Has this come as a surprise to the Doctors? Do they know of this happening to others with black skin?
My main side effect is tiredness and less energy and I have no choice but to sleep.
Thankyou to all for sharing the E space . Do call in and just say how you are getting on.
Esha Ness
Have a user name theme here of the sea… Esha ness is a lighthouse in the Scottish Isles ,Boat Tripper and Mrs blue capture the theme and atmosphere well!
Hi Diddy
Fingers crossed that the letrazole works. It’s encouraging to hear that you are still hormone receptor positive as my status has now changed fro being negative.
The hormone treatments worked for me for a long time. It may be worth asking about the Exemastine and Everolomus combination which for some is working very well and a new drug combo. If you have had Exemastine before they can’t apply to the cancer drug fund but there are also clinical studies out there in regional centres.
Best wishes to all Spongebobbers.
By the way Salsa babe I hope your skin colour is improving. These side effects are rubbish and often take us by surprise .
Esha ness