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!
It's really hit me for 6 but I did hear that few others were worse after first 2 then eased a bit. Felt generally drained, lethargic and feet really numb. Really hope it's all worth it and it's controlling it. Hope your all doing ok xx
Diagnosed March 2017 with TNBC.
Had FEC-T Chemo but on 4th cycle had local spread so Carbo was added in.
Had Mastectomy Sept 2017.
15 rads November 2017.
Risk Reducing mastectomy Feb 2018.
Routine oncology appointment resulted in a CT, MRI's to my brain, neck, spine, liver.
April 2018 diagnosed stage 4 with mets to liver, spine and lungs.
Done 3 cycles of Capecitabine.
CT scan last week shows lungs and spine stabiliased but a new lesion has appeared in my liver.
Tomorrow i start Halaven/Eribulen.
Looking for positive reports on this chemo drug, especially for the liver.
Thank you x
It seems like such a long time ago we were all starting our Sponge Bob journey and you were with us to help us on our way
On my first course of Eribulin 2016/2017 I found it kinder than other chemos- its the 5th different chemo I've had- but it certainly did its job for me and I hope it does for you too.
I have triple neg lymphoma and have just completed my 2nd Eribulin cycle after being able to take a chemo break for a year.
I'll have a CT after the 3rd cycle to see whats happening.
Let us know how you get on with it, we're here for you and between us have probably done most of the SEs!
Sarah, Eribulin killed my bc, at one point all they could find was scar tissue,,,,I was on it for I think 18 cycles, but Tim’s began to rise at the end and I was put on Fulvestrant which did b’all for me, so now I’m on the Paclitaxel train, which is much more unpleasant than Eribulin...good luck with it, try not to take breaks, as I have found that that is when my bc changes it’s dna and becomes resistant, it's like not completing the full course of antibiotics....anyway, that’s my advice to you.xx
Nice to hear from you Bousy, hope your scan goes well....if and when things change what is the next step for you?
does sound as if you have had mores /e than I did on erib, my fingers did go a bit numb, but not as bad as currently.
very very best wishes and keep us posted.
Hope you are ok.
I have just finished my 15th cycle. I have a scan on 14 June and am dreading the results. I don’t feel any different but will have been on Eribulin for a year in July. I know it won’t work forever but would like it to work for longer.
I haven’t lost any weight but I have had the same amount of Eribulin for 14 cycles but for the 15th it was a smaller amount. This time have been very tired and aching back. Still have no taste and ankles feeling numb now and again. Other than that I’m fine!
Been to London for a weekend so probably done too much.
Hope you have a lovely weekend.
‘’how are you getting on, on Eribulin?
iwas thinking, although I really found it easy as far as chemos go....I. Do recall myself. Withasmile. Helen acquarius and smarties finding that it made us get angry on our week off....,..mindyou...now I’d swap with any of you...you could have Paclitaxel and I could have Eribulin ......
actually these 15 days-between Paclitaxel treatments have been more pleasant than on the first three cycles....which is a bit strange.
come on ladies tell us how it’s goingxxx
you know yesterday, I got frustrated with my phone and said S**t ! as one does.......and Siri said
’I hope you don’t kiss your mother with that mouth’!
I ‘I did laugh. I hadn’t realised he’d. herd me!
anyway, let’s hear how everyone is going,
Yes Alee, that was bad luck...was it actual sepsis? Or nutrapenia?
.and I found erib to be a kind drug.....much nicer than Paclitaxel which I’m on now. What plans have they for your next drug?
hugs to you,
sorry to hear you've been through the mill with sepsis twice.
I haven't discussed any further treatments with onc yet as I'll wait and see if Eribulin works again for me- scan after 3rd cycle will tell.