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!)
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
funnily enough, this morning I was reading up about immunotherapy with Eribulin. It does seem to have some good results.
I find the neuropathy fades away during my recovery week off. I also get a strange no-feeling sensation down the front of my shins and thighs.
Glad your TMs have decreased, hope it continues!
Hi all --
Chemo routine for Eribulin here in the US sounds the same (day 1,8,15)
I was disappointed not to get into the trial combining immunotherapy (Keytruda) with Eribulin, but excited to know it's happening and hopefully with good outcomes! If results are positive they may open more slots. My oncologist thinks finding an immunotherapy and chemo drug that work together is the key to shrinking the tumors and progression free survival.
My tumor markers decreased after just two doses, so I'm encouraged 🙂
I had the sensation of numbness in fingers of my left hand for a few days last week but thankfully that subsided. I know neuropathy is a side effect and hopefully won't be problematic.
glad to hear the treatment is working for you.
I too have Stage IV triple negative bc.
I found with Eribulin my hair shedded and got thin at the start, and so I cropped it short, but then new hair started to grow back in.
I had success with the cold cap, and didn't lose my hair for my first chemo back in 1996, but haven't bothered with using it on subsequent chemos.
Hope this helps- let us know how you get on
My name is Jo and currently on a clinical trial with Eribulin and everolimus. I have been on this trial since December 2017. So far it is shrinking my tumors. I have Stage IV triple negative bc. I have used the cold caps for all cycles. I recently started to cut my cold cap sessions short by about an hour. I have kept all my hair and have not shedded at all. I am playing with the idea of not doing the cold caps anymore due mostly to cost and inconvience. Does everybody lose their hair on eribulin? Or are there some people who don't? After 16 sessions of infusions, I am thinking I may be okay without the coldcaps. Was wondering what others think about this.
glad you've found Eribulin 'not too bad', I agree with you- its certainly the least bad of the chemos I've had so far!
Yes you're certainly overdue with something working, most of us here are in the same boat 😞
I had Eribulin previously. It shrunk the tumours back sufficiently to take a year off chemo, and now they've grown again I'm back on it. It's working again this time, I have another scan in September and we'll decide the next step then.
I found my existing hair came out after the second dose so I cropped it short, then it stabilised and around the third cycle new hair started growing back.
Interested to know if your US routine is the same as ours? - treatment day 1 and day 8 and then a week off to recover?
Let us know how you get on
Hi all --
I'm new to the site and looking for eribulin buddies.
I'm in Boston and have had two doses, so far so good (or at least not bad!)
Hair is coming out now but I'm not sure if it's just "thinning" or whether I'm headed for wig world.
Stats here in US indicate about 20% of patients have success with Eribulin. So far nothing has worked for me, so I figure I'm overdue. Staying hopeful!!
Yes, sorry Helen, I found the taxol variable, but some days I felt really well. I did keep to the advice not to have any caffeine (search for’diet Tips when on paclitaxel’ I found eating smaller frequent meals better....and I felt nauseous a lot of the time, but eating seemed to help. From reading others experiences...milk intolerance seemed to occur a bit whilst people were on Paclitaxel.
Let us us know how it’s going and very best wishesxx
What a shame Sarah, hopefully they will be able to sort out your magnesium, if that’s the cause of the
‘only 8 cycles’.
Letusknow how how it goes.
howare you finding the heat? I know I’m finding it unbearable.
love and hugs
isn't it a lovely feeling just after a scan, when things are stable, and you can go another three months?!
The fatigue does get worse doesn't it.
Wishing you luck
Haven’t posted for ages. Saw oncologist today for my scan results and everything is still stable. I have had 17 cycles so far, it’s exactly a year since I started Eribulin. Last 3 cycles I’ve been on 90% of the dose due to peripheral neuropathy. Feel ok but get more fatigue now. Next scan September. Feel relieved for another 3 months.
Cycle18 starts Friday!
sorry to hear you've had to leave the relative 'comfort' of Eribulin and start on paclitaxel, but pleased it worked for you for so long.
Hello all you Spngebobsxx
How are everyone, I pmd you Withasmile a short while ago...but guess you might be away?
I hope your first Eribulin went smoothly, if you feel like chatting let us know how you get on.
I find fatigue is my biggest problem and I get the numbness in arms and fingers. It lessens slightly before the next cycle and then returns.
I've tried every whichway to avoid or manage the fatigue but still haven't cracked it!