Hi all
just a quick post- I know a few ladies on here are on/ have been on eribulin (halaven). Just wondering if anyone has kept their hair?? All the literature says there’s a 50/50 chance of hair loss but everyone I’ve read about seems to have experienced quite dramatic loss:( Just wondering whether to get prepared +buy a new wig etc or just wait + see. Think it’s more stressful not knowing- at least if u know it’s gona go, you can mentally prepare iykwim?!
Thanks for ur help
tina x
Bumping x
Hi Tina
I havent had eribulin and i see you know others who have, but i just wondered if you followed Ellie Jeffery’s blog as she is currently on Eribulin. She has lost her hair though.
Heres a link in case you want it.
writtenoff.net/category/notes-on-cancer/
Good luck. I hope it works wonders for you.
dx
Thanks for ur reply!Yes I have been following the blog + also chat to elle via pm. I know she’s lost her hair but she’s also just had wbr so that may have contributed maybe. Wish I looked half as good as she does bald!! My onc is treating another lady who’s hair has thinned but only slightly apparently so she’s not wearing a wig etc. But a few ladies on here I’ve read about have said it comes out in handfulls
think I’ll prepare 4the worst case scenario + book a wig fitting for after Xmas.
Thanks for the best wishes too. Merry Xmas
tina xx
Losing mine on epi but but have just had 2nd fec and could still getting away with no hot but shedding like mad so don’t think it will be much longer before it is all gone
Just a quickie Gingerbud - I’m guessing you may have had to go for a wig fitting previously? Anyway, just to stress the value of taking a friend or two with you. I did and really valued their opinions and ended up with a wig so similar to my natural hair that many people genuinely didn’t know I’d lost my hair. We also howled with laughter during the fitting which was a real tonic at a difficult time.
Is the cold-cap available to you at the hospital where you’re having treatment?
Anyway, good luck and I hope you won’t actually need that wig but, as you say, probably best to be prepared.
(For the record I had FEC-T so not really comparable with your current experience but just wanted to share and wish you all the best).
Aw, sorry, ladies, but I’ve just finished my first cycle and on my week off. It appears I’m losing my hair - for the third time since 2006 Still, there are a lot worse things out there than losing one’s hair.
Anyone any tips on losing sleep?? Maybe I should put this point on the general Eribulin thread. I’ve hardly slept since I’ve been on it.
Good luck to us all.
xx
I have had sleep problems since starting eribulin
Tried the sleep hypnosis stuff, I used a speaker that went under my pillow so as not to wake hubby. It helps a bit
But I have to say my favourite is ashphalia from the Chris woolams website, might just be a placebo effect but seems to work for me ( only just taken it tonight and it takes about an hour to kick in)
A friend in Canada suggested sending me some melatonin, I thought I should check with my onc before I tried it so I don’t know if that is any good
X
Thank you, tillycat. Like you, I think I’d check with onc before taking any other meds for sleeplessness etc.
Hope we all manage a little sleep tonight.
xx
Could it be the steroids causing sleeplessness? Not looking forward to that side effect at all I take zopiclone so will hav2 stock up. I have a 2yr old + need some sleep!!
Tillycat, just replied to ur pm. Have u lost all ur hair on this chemo too? I’m feeling pretty gutted at the prospect + think I’ll ask if I can use the coldcap. Hair just at my shoulders now + want to keep things as normal as poss, especially for my little boy…
Tina x
I bet it is the steroids causing the sleeplessness, don’t know why I didn’t think of it myself!
My onc suggested that I might like to try the cold cap but it didn’t work last time I had chemo so I decided not to bother. I have had 5 doses of eribulin (2.5 cycles) most of my hair fell out after the first cycle. I clippered the rest of it off with the help of my children - it’s these sorts of things which will either make them feel more involved or be the cause of thousands of pounds of therapy later in their lives!)
Gingerbud - my children are now 12 and 10 but my youngest was only 2 when I was first diagnosed. He was fine about me losing my hair then, took it all in his stride. He got very upset when it happened again when he was 7, which was why I tried to keep them both involved this time. The clippering experience was actually quite fun and both my kids seem pretty chilled about me being back in hats and scarves. Btw suburban turban do pricy but very nice chemo hats :-)). Hopefully if the cold cap worked before you will be ok with it this time, fingers crossed.
Mx
Thanks tillycat- I have neve tried the coldcap before, wasn’t an option in the satellte clinic where I had fec. But I know the main hosptal has the paxman system (checked online). Will see what my onc thinks tomorrow. She has another lady on eribulin and on her 4th cycle- she’s had minor hair thinning that’s all. I jst know mine will fall out + it’s depressing to say the least.
Keep in touch + lets know how it’s going. All the best
tina x
Aw, Gingerbud and Tillycat.
I don’t think it’s the steroids that causes hair loss. After my second session of first session, I was given steroids at 7pm when my chemo was administered. I only took one steroid tablet the next day because I reckoned I was hyped up on it from the night before. I took the second steroid the morning of the second day. Yes, I know, I was expected to take two the following morning and two the following evening but I didn’t. I still didn’t sleep for 6 nights!!!
They kept telling me that the steroids were for sickness but I thought hey, I’ve got anti-emetics for that. I haven’t had to take any anti-sleepness tablets and I haven’t taken any steroids since the one after chemo and the one the follwing night …
What are the steroids actually for???
I#m now on my “free” week and only slept last night for the first time in about 6 nights. I
This is only my experience and I hope you all find your own level of sleeplessness and finding sleep - zzzzzzzzzzzzzzzzzz.
Good luck to us all.
xx
Hi, sorry to crash this thread, I’m on Taxotere not Erubilin, but I did query with my nurse this week about why I have to take the steroids as I am never, ever sick from chemo. (Every other side effect but not sickness, lol) She said it’s not just for sickness, it’s to guard against getting a reaction to the chemo as well and I have to take them
Sympathies to all because I don’t sleep on them either - end up taking a dose of Zopiclone as well and then feel terrible the next day, still wake up umpteen times a night too
Lesley xx
Hi LesleyLP I think you are right.
I decided that I hated steroids so didn’t take them for my first cycle, ended up in A&E with severe pain that was thought to be either a liver bleed or some kind of lung infection. One ct scan, 24 hours of iv antibiotics and an overnight stay later and i was told the pain was due to a swollen liver stretching the liver capsule
- caused by, you guessed it, side effects of the eribulin. The side effects only occurred because I didn’t take my steroids. I am very docile now and take all my tablets exactly as I’m told
Mx
Ummers, folk! I feel very irresponsible now for having not taken the steroids. Tillycat and Lesley, I hope you’ve both recovered from your chemo reactions. I’m due in again on Tuesday so will be sure to take the steroids …
Good luck to us all.
xx
Tillycat, that sounds horrendous, glad you’re behaving now
I have to set a reminder on my phone to tell me to start taking them the day before because I have been known to forget until late in the day - and we all know what happens when you take them late in the day, ping, wide awake all night!!
Good luck with your next round GrannyScouse and everyone else.
I have my last tax on 12th January, can’t come a minute too soon
xxx
Hi ladies
had my 1st eribulin today. In hospital for 6hrs waiting for bloods + pharmacy Was given the go ahead for the coldcap, was so painfully uncomfortable as so tight around forehead. Kept telling nurses it didn’t feel as cold as I was expecting but they kept reassuring all was well…only to find out an hour later that I was right and one of the connections had come loose. So I made them take it off- what’s the point now if it’s not been done properly 1st time? Bl**dy gutted- feel like noone I’m dealing with knows their arse from their elbow lately grrr!
Next saga was I was told by the nurse I didn’t need steroids?!? Had discussed steroid use with onc earlier today + she never said anything about not needing steroids. Told nurse this but she insisted I dint need any to rake home but I’m naturally concerned Reading that u guys DO have steroids and especially worried seeing what happened to tillycat due to skipping steroids. What do u guys think? Anyone on eribulin not taking steroids??
Stressedout.com!!
Tina xx
Aw, Gingerbud, I feel so sorry for you! What a palaver you’re having. I can’t offer any further advice until I see onc/nurse on Tuesday but I’ll certainly be asking questions re steroids. I really feel they’ve not been truthful with me.
I too have had to wait for 5+ hours - and I’m not having the coldcap treatment!! Just a backlog in the chemo suite!! All for 15 mins treatment start to finish, what with flushing out before and after.
Hair’s continuing to come out …
Good luck to us all
xx