Hi ladies, especially the newbies to this thread.
I had Eribulin last year and decided to use the cold cap as I had chatted with another lady for who it worked well and she didn’t lose her hair. I really wish I hadn’t bothered. It extended the treatment time massively and I think the reason you have been told you can’t use it is because of that fact rather than for any other reason. There’s no proof it works as far as I can make out, it’s definitely pot luck whereas other chemos it does seem to work well as long as the cap fit snuggly all over. For most ladies the hair loss is between the 1st and 2nd dose of the first cycle and after that it doesn’t get any worse and actually starts growing back. Mine thinned hugely, by about 50-75% maybe, but as I had thick hair to start it was only really noticeable to me. I wore wide, soft hair and, from Claire’s, and had a variety of covers. It’s the only chemo that has made my eyelashes and eyebrows go completely, which didn’t happen with FEC or Taxotere, they really were the things I missed the most. If you do choose to use the cold cap near in mind the Eribulin infusion can be given in as little as 5 minutes once it’s established you don’t react to it, adding the cold cap makes the whole time in the chemo unit around 3 hours. Also you can decide if you want steroids or not, they are not necessary although some units insist on them. I really couldn’t have coped with all those sleepless. Nights so I decided not to have them and i didn’t have any more side effects than others who were on the same treatment. Hope this helps.
Hi C A S
So wanted to keep my “crowning glory” back in 2007 so I used the Cold Cap.
After about 3 weeks I started to lose some tufts at the crown, and as there was the
possibility of burning my scalp and hair follicles I had to stop using the cap. My hair
might not have grown back in at all in that area. Did not fancy the tonsure look.
I ended up wearing wigs, but however “great” and “real” your nearest and dearest might
tell you they look, they’re not you (if you know what I mean). We’re already putting a
face on.My son was 14 first time around. Being seen with your Mum is a NoNo anyway
at that age, but with no/chemo effect hair???!!!
This time round, got a wig. It’s a really good wig. Don’t use it. Threw caution to the wind
and let the chemo (Paclitaxel then Eribulin) do its worst (as far as my hair was concerned)
and hopefully its best to stabilise my cancer. Fortunately my stubby “silvery haze” fits right
in with the new colour trends.
We have enough to put up with. Losing your hair IS hard. In my experience, it comes back.
I seem to remember it was blond before it disappeared though:) Must be the drugs.
I remember how unpleasant and time-consuming the Cold Cap process was and have
to say that I admire your strength in wanting to continue to use it with everything
else you have to contend with.
All the Best to you and yours
ah, Helen. . .
Moijan was an inspiration to us when we were Eribulin newbies, and always there with an answer when we stuggled.
I felt she had gone when she stopped answering PMs.
Wishing everyone a safe journey with their treatments,
with love xx
So sorry to hear about Moijan but grateful for the update. I've found this thread, and others specific to treatments, to be tremendously helpful as they relate to specific treatments and how we are each doing on them.
It's wonderful to know others, like Helen, have done so well on Eribulin, which reminds me why I was optimistic about it. Unfortunately for me, after the 2nd cycle my cancer was no longer impacted by Eribulin and my LFTs shot up putting me close to liver failure. Not sure "what's next" for me, but whatever it is it's a great help knowing there's likely another thread out there to follow.
Thank you for the birthday greetings! Just had chemo this afternoon. I just hope it keeps on working.
sorry to hear about your SEs.
Pain in right upper quandrant? Is that shoulder boob ribs chest area? If so, I have had crippling pain there in the evenings and it turned out to be indegestion/heartburn...the pain was agony, also across my back.
I found peppermint tea shifted it as quickly as any prescribed meds.
I'm so glad to be hearing good news about no further spread from so many!
I have one more cycle before CT scan (it will be more first scan since starting Eribulin) I wish I could say I'm optimistic, but tumor markers came down and went back up, I developed a mysterious rash on my left upper arm last week (it came and went within a few days but looked very angry), I have a bloated feeling and some swelling in my lower legs, and worst of all the pain has returned to my right upper quadrant. It mainly comes on in the evening.
I have an oncology appt next week, so will discuss all this with MD. Part of me is hoping she'll say lets do the scan early, just because I'm curious. We haven't talked about "what's next" if Eribulin doesn't work and hopefully won't need to.....
Hanging in there,
Thanks Nicky. Just hope it keeps working. Side effects are kicking in a bit more now but can cope with that.
Great news and a very welcome relief I’d imagine 😊 We all love a Stable Mabel so thanks for sharing with us and long may Eribulin work it’s magic. Enjoy the next few months between scans! Oh and a belated Happy Birthday, what a lovely present 🎁🎈🎂
Just got back from the hospital where I received my results from my 3 monthly scan. I am still stable after 20 cycles of Eribulin. It’s my birthday today so best present I could have. Take care everyone.
Well, another month has arrived!
How's everyone doing?
I've got my 3-month CT scan next week and results (hopefully) 10 days after, so I'll see whats going on and whether I change from Eribulin, continue or get a break.
Hope you're all still smiling, even if it is through gritted teeth
originally I started with steroids pre-med with the chemo, and a take-home pack twice a day for two days. I've since cut down to less than half dose.
I tried with no steroids at all, and had no sickness but the fatigue was too debilitating. I know my biggest problem is always the expectation of what I can still do while I'm having chemo!
I've been having bag leg pain like Nicky described and I think its caused by drop in red cells causing damage to the nerve sheath. I'm seeing the onc on Monday for blood tests and hopefully he'll explain it more scientifically.
Nicky, it wasn't until I read your post that I realise I've had a constantly runny nose and eyes!
Love to all
Hi Eribulin ladies
I was on this chemo in 2017 and had 8 cycles during which it worked well but an onc that I saw for a second opinion felt my bone marrow would only cope with 8 cycles so that was all I had. As it is my bone marrow is fine but maybe if I had stayed on yet another chemo it would have been compromised, guess we’ll never know! Anyway what I was going to say is that I started off having steroids after the infusion, and probably just before it as a pre med (I can’t remover exactly) but decided to not have them after the first cycle (day 1 and 8). I didn’t suffer any nausea or I’ll effects other than those that usually affect you like tiredness and some fatigue. I’m glad I decided not to continue with the steroids as I have a,ways felt really rough for a day or so when I’ve stopped them as you have to have them with some of the chemos I have had. As Laura has said, if you don’t need them there’s no point adding something extra to the mix however I know some ladies do take them and I understand why.
Good luck to all of you on this chemo, it is very doable but sometimes the SEs can get you down like the hair loss and in my case constantly runny nose and eyes, I spent a lot of my money last year on tissues! I know also that some of you have mentioned a feeling in your calf muscle which reminded me that I used to get really excruciating pain down the front of my shin. It was as if the muscle at the front had just contracted (as when you bend your foot up towards your knee) and the tendon that goes onto the ankle bone also tensed. It was so bad at times I literally cried and couldn’t stop it until it eased itself off in about 5 minutes. I’d forgotten all about that until the calf muscle was mentioned on here.
I had my 4th dose yesterday and it went without a hitch. Compared to Navelbine, which I was on before, I don't have any side effects with Eribulin administration so I can drive myself to and from which eases leaning on friends.
Initially I was prescribed steroid with Eribulin (4mg dexamethasone) I think to prevent/minimize side effects (nausea mostly, I think). I asked to have it lowered to 2mg, and now none at all as I'm not having any side effects I think the steroids are good if you need them, but if not, why add one more thing?
I may be one of the few that's destined to lose all my hair on the big E; I'm down to just thin, wispy strands. The other day someone called me "SIR" and even the dogs are giving me strange looks! Lots of days with a baseball cap on recently. I have a cute wig but with the hot weather, fake hair on my neck is not a good feel. I can put it in a pony tail or flip which I"m probably gonna do.
Too soon to know if Eribulin is doing it's job on the liver mets for me, but bloodwork and other indications are good.
Hugs to all!!!!
'Currently looking after 3 of my grandchildren with husband and daughter and they are all taking a nap!!'
Made me smile big time!
Hoping the paclitaxel does its stuff and shrinks those liver mets
Was using on taxol._theymust have helped a bit,, have the feet but have t used
carbo. Diff kind of pain, worse, but will. Have to seeEACH MITTIS AROUND 100 TO BUY AND YOUU NEEED A COOL BOX TO TRANSPOT AS HOSPTS OFTEN DONT HAVW. FREEZERRS
I. UNDERSTAND CHRISTIE USES ALL THE TIME
MOIJANSORRY RE CAps b,lasted nuisance
how long have you been using the cold mitts?
Do you have feet ones too?
Would love to know your opinion.
I get awful Reynauds and I'm wondering if they would make it worse
the less said about capecitabene the better!
Hope you got through Moody Monday ok, Moijan and I used to compare our moody days, but for me they've either eased off or I'm just moody all the time and haven't noticed (and no-one else dares mention!)
Did kill my liver mets, but sadly they grew again..we are all differentxx
Hi girls, I have been using the cold mitts and the juries out but will let you know,
‘’another lady suggested that l glutamine can help and I’m trying that..but check with your onc.
so pleased to hear about about the shrinking liver mets.
The extreme fatigue is horrible isn't it, just total wipe-out. I can't offer any solution because as yet, I haven't found anything that helps.
I think 'rest, and drink lots of water' must be imprinted on my brain!!
Interested to hear if the cold mitts help the neuropathy as I've had it really badly these past two cycles (4th and 5th). Let us know how you get on
glad you've found support with this thread.
Eribulin certainly is an easier chemo when you've tasted a lot of the others on offer!
My BC has chopped and changed over the years from OE neg to pos and back again, so I've had the joy of sampling most drugs!
I started Eribulin 2016 when my BC became stage 4 Triple Neg Lymphoma with para-aortic and liver tumours.
It shrunk the liver ts completely, and reduced the para-aortic ts.
I asked for a chemo break with 3 month CT scans to check progress and had nearly a year off chemo. I re-started Eribulin this year when the tumours re-grew, and latest scan showed some hopeful reduction.
So many of us have been battling for so long - and long may we continue!
I hope everything is going steadily for you.
Those nervous days of starting Eribulin seem so far away now don't they?
The taxel chemos are pretty heavy going - I had a course prior to Eribulin - so sending lots of empathatic hugs your way.
Hi jo, you can change your name if you want...ask the mods gelp
loads of love and hugs
Can you tell me your name? I am new to the forum so if your name is listed somewhere, I can't find it. Probably staring at me in the face. It feels good to connect with someone with my diagnosis. I really appreciate your feedback about your hair. If i stay on this clinical trial I will stop using the cold caps. My insurance was suppose to pay for them, but it is not looking good. The company I use here is US has you pay for the first 8 sessions and then the rest are free so I thought that was a pretty good deal for those of us who will be on chemo for an indefinite period of time. Thanks again...
Hi all --
So happy this thread is active with eribulin veterans and newbies like me (just finished 3rd tx like Hlarsen)
Someone mentioned cold capping and it's interesting that various research has indicated it "helps" and many insurances in the US will cover part of the cost. I see it being done at Mass General which is where I go for treatment. To me it's not worth the added hassle and cost, esp since it may/may not work. With the rate I'm losing hair I"m headed for wig and already picked out a cute one. I have a 14yo and need to keep a presentable appearance so as not to be an "embarrassment" (giggle)
My breast cancer was stage 2 when dx 2011 but mets 2016 and now four areas of liver mets in 2018 which have grown on Ibrance and Navelbine. Pain had been an issue as liver was enlarged but I have a great pain med regime worked out thanks to pallliative care MD. Anything that keeps those mets from growing will give me hope --I guess we'll see after 4th cycle.
nice to see you here...how is pac going? Didn’t work for me😰
so on carboplatin
even less pleasant and with novweeks off
welcome to this thread. What a lovely positive and inspiring post xx
hope things go well for you on Erib..it killed mine atoepoint but sadly grew back later, but had about 21 months
actually, I got sore fingers which recovered well, I must have got the tiredness,but really I can’t recall...this chemo is an absolute joy, compared to my current one! I recall it very fondly.
alto I began the thread..Withasmile is now likely the current lady who would be good to discuss s/e and strategies if need be...I lost my hair, but it started regrowing almost immediately! I lost my lashes and eyebrows, got them back now tho.
very very best of luck...and enjoy.xx I miss this chemo
I hope Eribulin helps you- after all the other chemos it seems a much gentler regime.
I was first diagnosed 1995, so like you I've worked my way through most of the available drugs!
Its amazing when you look back, just how far treatments have come, and attitudes have changed.
The fatigue seems to come and go, I've not been able to work out a pattern.
Good luck with everything
I did lose my hair on Eribulin....but it started growing back..my hosp doesn’t use the cold capwith it as apparently there is no evidence it work...it’s avery busy hosp and cold cap, as you say adds a lot of time to either end
my treatments were about ten minutes with a pre and post flush, I was usually out very quickly indeedxx
good luck with everything