Hi Carolyn52! Thanks for your speedy response! It's nice to have some pals going through the same thing although I wish we were not on this journey! I will take a look at the other forum. I am the only person in my hospital on this treatment so it is quite lonely not to have anyone to share notes with.
Im new here and it's great to read all your posts - it helps me not feel so alone. I've just had the first dose of my second cycle of Eribulin and overall, it's not been too bad. I did think I was keeping my hair but in the past day or two, I've started to lose a good number of strands - wondering whether I'm going to lose it completely or if it will just thin. I've heard that if it thins, some people say that it then starts to grow back. I was wondering How many cycles does it take to start growing back and stop shedding? I should feel pleased that I have still got my hair when others haven't been as lucky but I suppose it just adds to the stress when you don't know what is going to happen. Constantly travelling everywhere with my wig incase it all flies off in one fell swoop in the Scottish wind!
Kay, I'm sorrry you lost your mum, it's not easy! That's horribre that you are dealing with her loss and your health. I lost mine almost 19 tears ago. I miss her so much! I sure wish I could hear her voice! Take care of you! FF
Kay...yes, im sorry about your mum tooxxx
It really hurts to lose a mum doesnt it?
still miss mine...died 1987 xx
thank you for reply will have a look through site when i get chance paclitaxal was good for me i would say a walk in the park compared to my first hope this is the same but works better i have told them to put grandchild in after school club as i picked her up from school just in case i do not feel well on it and the other who is only 18months will have to go to her other nana but i hope i will not be to bad and can still enjoy them and walking the rescue dog i have took on
how long have you been on it i read somewhere that some one had been on it for 14months
glad it is still working for you and i hope your scan proves it still is i have not been on as my mother was ill and i have been busy looking after mam and grandchildren but unfortunately mam died end of November 2016 she had lung bowel and liver not sure if there was 2 primary or just one that had spread that was in august we found that out. i came straight out from her funeral to hospital as i had concerns and ct proved my fears so here i am again trying out another chemo coming to terms with that and grieving for mam i have been at an all time low but feel i am picking up now. i also had lost 8lb in weight but had been doing zumba thought it was that causing weight loss (needed to lose some) but hay o there are worse off than me
you keep giving people a laugh
good luck and take care
oh Kay.....forgot to say...usually we hang out on the 'chemo buddy needed....anyone on Eribulin thread, so you might want to check posts on there!
Carolyn...how are you? Nice to see you
How very nice to meet you! Welcome to the thread!
Am, sorry about your progression,.......but Eribulin has done wonders for me.
last June my liver mets were in progression ....since my start on Eribulin the tms have plummetted and also my last mri Showed the bc isnt active.
yes its a ten minute infusion, but i believe theres a choice between 10 and 20 mins. i have always been on the middle dose, ( my liver function tests results have always been a little high ... Not to do with Erib especially)
if you read back on this thread you will see tips etc, but withasmile says she....... and I also have found this chemo to be pretty easy compared to other chemos. It does lower the white cells, so nutrapenia is a risk, but the other bits and pieces seem to vary among people.
i started with a iv premed of antisickness drug which made me feel panicky, so now never have that nor sickness either! My previous two ex chemo buddies mentioned some mild sensation changes in their legs, which I had initially but is fine now. I do get a bit ratty in my week off😡.....am more inclned to tell people exactly what I think..... But otherwise 😎
my onc said im to stay on it until it stops working! Theres a hint there, but it is nice that its working...and I might take a wee break at some stage....Moijanxxx😎
i am not a regular user but I occasionally come on when I need info I am starting eribulin just waiting to hear if I can get funding
my secondary breast cancer has migrated to liver after being on letrozole for 1 year why I was kept on it when I have had progression through out the year in chest I do not know had radiotherapy in June then again in different area on chest in August had pain in right shoulder but thought I had been over zealous doing Zumba
saw onc Dec 19th he arranged ct in the mean time ended up on New Year's Day at the out of hours GP as I was in such excruciating pain around my right side it hurt to take small breaths when I needed to take a deep breath I was nearly on the ceiling in pain GP just said it was your cancer. Anyway this week went for ct result to be told it is on liver.
I just read on thread below about a 10 minute infusion is that all it is or have I read it wrong I know it is 1&8 in 21 and I have been told I could be on it for a long time or his words as long as it takes I see some been on it for 14 months is there anything I should be aware of I had had 2 other chemotherapy in the past epirubicin and cyclosphamide which was awful changed my personality well that's what I blamed it on I then had paclitaxol weekly which shrunk tumours but they never held on letrozole they were growing with in 2. Months I was allergic to the flouracill in capcitebine so only on it for 24 hours and I have had anastrozole ttamoxifen exemastane and letrozole all since 2010 when I was re diagnosed any tips how to cope welcome on eribulin
Eribuln has worked very well/wonders for me so far. I started it in June and the bc is now non active! They find it very hard to find the scar tissue on my mri scans. please PM me if you do go on it and we can chat more. Xx
i hope that gives you some optimism if you go on it...I went on it after cape, letro and vinorelbine failed.
three week cycle intravenous, ten minute infusion:
week one. Onc, then. day 1 chemo if bloods ok
week two. Day.8 chemo if bloods ok.
MRI three monthly
i have found it very workable as a chemo...minimal side effects. Was given an antiemetic premed, but this made me panicky...stopped it and now no panic andno nausea/vomiting ever.
I lost my hair....
slight constipation if not drinking enough.
urine infections ....have had a few but prob because I wasnt drinking enough...have learned my lesson!
does lower the white count, so I am given filgrastim...see CHEMO BUDDY NEEDED thread
very best wishesxxx
Hi everyone, I may in 3 months be put on Eribulin. Found out yesterday that Capecitabine is not working for me as liver met has grown and TM gone up. They have put me on Faslodex hormone injections for 3 months, followed by another scan to see if working. If not it's Eribulin.
Hope everyone is ok.
No, I agree with you...and I recall your saying David Cameron would be an asset to your government
since your latest election...you know what, I think you were right.....hed be quite a calming influence.
take care of yourselfxxx
Noonan, I don't know how far it woukd be allowed to go! I don't know how they can take away your right to help someone!!
Hi Funnyface....sorry to hear that...how can they penalise someone for being kind to people less fortunate?
would they actually get such a case through the courts?
Yes if crazy here! The homeless situation is bad! In some cities they made it against the law to give handouts of food! If I see someone that needs food and I have some to give away then I guess I'm getting arrested!! I ended up having a very bad day without it. I tried to go cold turkey and it didn't work. I. trying every other day. That seems to be going smoother. FF
Ooh, you sound as if you make a real effort to look sexy in bed( expected a bleep then) lol
seriously, i have a cream routine in the mrnng...arm and face, also tablets, injection's etc. I wear an eye mask, but no bed socks! But tend to prance about with a naked head at present!
Hi Funnyface, its a pain...literally.!
is the US of A as hectic a place as the Uk is at present?
what happens to all the homeless....do they get shelter etc...we have loads....and am sure loads of elderly lonely people, and other groups around...all very sad!
How is your reflux? Got caught out with severe pain last evening on my way somehwere...had to buy some milk...and id taken the omep twice!
Thank you Gadsbyxx
thank you Carolyn....glad your teeth are good as new again, I had a toothache but its gone, think Ive bedn grinding my teeth in my sleepxx
Hi Andrea, yes steroids for appetite makes sense.! Yes its cycle 9 day 1 today
yesterday asked reg if Erib passes blood brain barrier..she said she wasnt sure...and that its not a med 'they' use or brain mets...but as it is potently mood changing..I think it does go past it...so it may be helping your mets even tho noone knows!
have to get ready now. Best wishes..glad it went well....
hope everyone else is ok?
love and hugsxx
Iwould think Erib could be good for brain mets, as it def affects my mood!💥⚡️
feeling good today tho...nextcycle starts on Thursdayxx
Andrea....sorry to hear you have brain mets too. Xx
are your tumours lobular or ductal?
yes hopefully eribulin will do the trick! I too have low appetite, but today am feeling quite hungry....
i have a couple of hairline fractured ribs( for a long time) which are either mets or rad damage....but they hurt sometimes if I twist the wrong way.....I have heard of pain occuring when tumours shrink......but was thinking, do you think it could be reflux? I Get that a lot......many chemo ladies do..and the pains I get are sometimes my rear teeth ache in the lower jaw, sometimes I get pain in the chest on my right side....I can tell what it is because a glass of milk gets rid of them...
My gp queried a pulmonary embolus as similar area, but that pain wouldn't go with milk drinking! So next time it comes, try a glass of milk, or if you are off milk, then oat, almond, soy milk, whatever and see if it goes!
mine can go with just water.
Andrea yes, I hope your results are good, (all of you) on E. You are on a lot of drugs then...something must work! I was on Letro for about 7 years but told to stop...the bc came back and then the Letro wouldnt work!
i do hope that i wont get muscle weakness tho, like your onc said can happen!
So glad he thinks good results can happen tho xxx
Love and hugs
Hi Marnster, I think our replies crossed as I took so long to type!!
hopefully it's because it's working you've got the chest pain, it seems ages to wait, 3 cycles and then scan but I suppose you've got to give it time....
My Oncologist did say that weight loss can be a side effect as you lose you appetite and a bit of muscle weakness can occur too.. will see how it goes but let us know how you get on. I've been seeing a dietician at the Haven (it's free) and one of the things I have if don't feel up to cooking is eggs.... boiled with soldiers, not has since a kid & beans in toast...
Great to hear everyone is doing so well on Erubulin. I've just finished my second round after my Day 8 dose on Wednesday. Don't feel too bad from it, but feeling a bit sore/tender in my chest near the lung met today. Hopefully that doesn't mean it's got bigger. Am hoping the Erubulin is zapping it to pieces. Won't know until I have my scan in January though. Still got another round to get through before then. Am hoping I have the same results as you Moijan! I have the same no appetite as you! It's easy to forget to eat and a lot of the time I don't feel like eating, but I try to get a little bit down to keep my energy levels up.
glad its going well, I wasnt offered steroids either...so its a puzzle why some oncs presc them, maybe its because of the antiemetic causing agitation? I recall having steroids with EC ant Taxotere.
i realised that ( just thinking a minute ago) that the 'feeling low' seems to occur on the week off...which makes sense, as other chemos seem to do that..like cape..
the other thing is, I feel very well on Eribulin...and Think im. Healthier than Ive been since my mets came..
looking at my tms, they were lower than they ever were during the past 18 months.....
I Am crossing my fingers for you both.......the more recent studies seem very positive and I guess they can now see how well the 2012/3 ladies are doing....as time has passed.
Hi Linda and Andrea!
sounds as if 'so far, so good' for both of you....thats really great.!
Was trying to think back to my first cycle...the antisickness i/v* made me panicky....
i couldnt understand why, as I have Zometa i/v 6 weekly anyway! A staff nurse suggested we try without the i/v antisickness drug and since then...no panicky feelings..apparently that drug* makes some people agitated when its given i/v.
I did Feel tired on the second day after...eg day 1hree and 10, but then I started filgrastim/neupogen and it helped boost my energy as well as my immunity, so i dont get that massive tiredness. However, i sleep very badly, so I Get tired some days because of that.
i did get mildly sore mouth during the first cycle, and constipation...both of those have not been a problem since really,but i try and drink buckets of water.
i dont feel hungry ...sometimes have got to lunchtime and realised id missed breakfast!
i did have changed sensation in my legs, also swollen ankles the next day, but that seems better now.
a few cycles..during my week off have felt depressed and got angry really easily...Thats happened this week...but I think it's going again... Both my ex eribulin buddies talked on here about feeling low too, so it is obviously a feature of Eribulin.