Thanks so much withasmile, that’s so helpful. I did 8 cycles of chemo in 2014 & your words reminded me at how good you get at planning around energy levels! Xxx
Filgastrim even x
Hi everyone,
Glad to have come across this thread.
My aunt’s just gone on Eribulin after coming off a trial due to elevated bilirubin levels.
Her bilirubin levels continued to go up after the first two 1.1mg/m2 sessions of Erilubin on days 1 and 8.
She currently has jaudince and ascites.
I wanted to know if anyone else went on Eribulin when at a similar stage wtih her liver tumours and if the chemo helped at all.
Thanks,
Mahsa x
Hello everyone!
Hope everyone enjoyed the weekend!
I have two questions…
The first is regarding something I read a few posts ago about feeling a bit irritable during your off week. I am in my off week after my 4th cycle and I can’t stop crying…I have quite a bit of stress on top of the pesky cancer, but I’ve not really experienced this kind of breakdown since starting Eribulin or on any of the other drugs I’ve taken. Has anyone else experienced anything like this or am I just losing it??
The second question is about taking time off. I am going on holiday (which makes my crazy sadness every more confusing) on Wednesday and won’t start cycle 5 until July 25th when I return. Has anyone else taken a few weeks off? Any good or bad effects from taking the time off? I’m nervous to not have it for a month, but I am also desperate to get away.
Any insight would be so helpful!
Thanks,
Lori
Hi Lori,
I’ve had lots of different treatments and some of them have definitely made me very emotional, particularly feeling low and tearful. As much as possible I tried to just have a good old blub, choosing my location as appropriately as possible - there’s probably a few fellow dog walkers who must wonder what’s up! Once I’d had a cry it would often pass, I could put it down to the drug (& cancer!) & then move on.
Hope you have a fab holiday, I’ve not started yet but am planning to take a trip during my cycle two, my Oncologist has said it’s absolutely fine to go.
Best wishes, Jo xx
Hi again Lori,
Meant to say, great news re your treatment response, it gives me a real pick up to hear you are getting a good response with this drug.
Jo xxx
Hi ladies,
Sorry for the delay in responding but thank you for your replies to my post of 29.6.17. It has been a hectic few weeks; had a new kitchen fitted which looks fab, i am like a child with a new toy and it was my son’s 13th birthday, so another stroppy teenager to deal with :smileylol:
Had my first dose of eribulin today and you are right it is a totally different experience to others. It literally took 5 mins for the dose to go through, took them longer to get the cannula in. Feeling really good, hopefully still will after next (Day 8) dose. From reading other posts think I have misunderstood the frequency of doses. I thought it was Day 1, Day 8 first cycle then 1 dose every 3 weeks but now think each dose is a Day 1 and Day 8 with a 13 day gap in between! Is this right??
Teresa xx
Pussy
Not sure why you think your tms aren’t good!
Mine have been sooooo much higher than that before… cruised at 300 a couple of years ago …
Mx
.
Nicky,
It’s a sticky one isn’t it? I know I once queried why others have a steroid and not at my hospital - my onc is lovely and didn’t mind me asking, but said they don’t do that, so I wondered if maybe that was why I felt as if I had a bit of cerebral oedema and acted out of character( became VERY. truthful and tactless) during week three.
The literature def says not to have filgrastim for at least 24/24 after chemo so as not to affect the chemo process, and mine is prescribed a day even later after the second chemo, i.e. 3 days after Day 8, so I’ll be taking it tomorrow instead of today this time.
But Nicky, I’ve never felt as you describe-maybe it’s the brand? Later I’ll get it out and look - but I’ve had two brands so far, same dose and prescribed on the same days and never felt like I was going down with anything-but I have felt a little dizzy once or twice during a filgrastim day
I think Erib might have increased my tendency to dizzyness -I once had a middle ear infection and since then I have to be careful how I turn when getting out of bed or if I bend over and turn my head, so the dizzyness might not be a symptom for you.
Love and best wishes
Moijanxx
incidently ladies, I tried to post this reply just now - and the site posted it as a New Thread! Which Ive deleted.so we have to be carefulxx
Hi Kay,
i have had readings on both of the tms…they only put down one ofn the form, but my guess is that the test may show both!
Anyway…I did see on another thread that you very kindly said I was an expert on Eribulin…I wish I felt like one…its really strenge because this cycle im getting new symptoms…some of which you said you already get…it feels a bit scary so maybe you can reassure me
I have never had pins and needles in my fingers on this drug…have had slightly sore/red fingertips…but never much to worry about.
this is just past week three and I for a few days now ave slightly sore fingertips, but also pins and needles and tingling of front and back of bothhands…which I find a bit scary. Not unpleasant-but dont want this permanently! Am hoping it will ease up by my onc appt…did email him to let him know…but frankly any damage will or will not occur so nothing to be done in my view.
so will have to make a choice as to wether or not to have my last cycle before my mri. What I am doing is taking a leaf out of Zena 75’s book( you will have to read her posts) to see if it helps. Lets just say ‘a leaf’ is a bit of a punxx
Anyway, hope everyone else is ok…it is a little scary being a front runner for a chemo drug xx
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Hi Marnster
Iwas so interested to read your blog…because I too am two years older than my mother.
and your thoughts on it, were mine exactly.
l lost mine thirty years ago and still miss her desperately.xx
love and hugs,
Moijanx.
Kay, something like 16 lost count xx
Kay look on her profile x
hello there,
i know ive asked before, but things got so crazy i cant remember anything. Mom’s first erubilin was friday. saturday and sunday havent been too bad. some fatigue and thats about it and pain here and there. what should we be expecting in the upcoming days? any tips?
joelle praying for a cure xoxo
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Joelle-no telling really as we are all different
Maybe nothing at all - have a scroll down now tho and see some of the stuff xx
Hope she gets a good result.
Moijanxx
thanks moijan and withasmile,
i cant even explain how weve been feeling. just so worried and down, praying the erubilin works and this fear phase passes…
none of us can think straight
joelle praying for a cure xoxo
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Kay…yes, have been thinking that comment over…its a bit like several of my friends- who were quick to say that ‘any of us could get run over by a bus at any time’! Not as comforting as one might think - that one!
im thinking that people aretoo quick to trot out platitudes…almost as a way to avoid dealing with the issue.
.( I still watch out for buses in my living room, bathroom etc in case one runs me over at any time!)
