Smartie I meant are you on any hormones or other types tablets.you will feel better when drained.x?
Hi to everyone for their good wishes
Thankyou ? xsharon
Hi Smartie, so sorry you are feeling ropey. Hopefully after they drain the tum that will improve. Glad to hear from you, am often thinking about you and wondering how things are going.
Heren and Sharon, im sorry about the numbness. Its really weird tho, I spoke to my onc on Wed and mentioned my legs feel different,knees feel numbish and all down both sides of both legs feel a very different snsation to what they normally do.
he said, he doesnt think its the Eribulin! After hearing you two talk, im going to mention it again!
im not having trouble walking, but its very unsettling…I actually thought maybe it could be compression from the spinal mets, but he said that he doesnt believe it could be that because my tumour markers are still falling!
i then said that some people have been told the tms arent reliable re bone mets…he said well, we know tms give a very good picture of how ‘your’ cancer is doing! Im wondering now if your numbness is a good sign? I suppose we will all know after our scans!
on top of this, an old friend is pretty ill and fading rapidly from lung cancer, so whilst im happy about my tms, im sad for him and his wife.
love and hugs to everyonexxx Moijanxx
Oh, and Sharon, MY hair has stopped falling out and is growing!
moijanxx
Hi everyone…I’m going out for carvery today even if I don’t eat much❕ …tomorrow I just dont know I’m uncomfortable with tummy so cant how I can handle the chemo too.will see if bloods ok .i need some definate answers not so vague stuff.by the way i havnt lost any hair…sharon? x
Helen how long are you coming off erubulin for 
Sharon x
Moijan youv got hair again.?? sharonxx
Let’s all sing the song for Moijans hair:
Let it grow
Let it grow
Ha ha …that song will haunt you all day now.
Xxxx
Hello everyone. Yes some of my hair is too long. Some of it is awol! And if i was to go capless, it looks fuzzy like a baby, so im not so very keen on that.
Helen my legs sound very like yours, knees not numb, but definitely different sensation, and both side below knee level feel different. My knees have been painful…have nakkered knees anyway as when I. Was a student nurse they used to say, ‘bend you knees’ nursewhen you lift…there are hundreds of us with nakkered knees or backs! But now they dont lift people
so as the tms are showing a great plummet, im not tempted to stop just now.!
however, am off to research the effects of eribuln!
Sharon, hope you feel up to the chemo!
Moijan ‘hey ho, hey ho its off to research I go?’. (Just for Carolyn)
???
?
Hi Samrtie and Sharon
Smartie, you asked for tips re abdo swelling: Im guessing here,but try cutting out all non essential salt, as salt retains fluid. Worth a try.
true to my word, I went and researched Eribulin side effects…and here we are:
Very common (10% or more): Peripheral neuropathy (up to 35%)
Common (1% to 10%): Dysgeusia, dizziness, hypoesthesia, lethargy, neurotoxicity, polyneuropathy, peripheral sensory neuropathy, paresthesia
i am going to stick with it though, as if my scan shows a marked improvement, I might be able to go back on aromatase inhibitors( oestrogen blockers)
i understand totally if someome decides to come off, if they are scared about neuropathy tho.
Its all russian roulette isnt it
Moijanxx
Hi Helen
All I know is this since iv been on it iv deteriorated so much could be that the cancer has overtaken me .but I sure know its not helping …I’m due chemo at 10.30 tomorrow.firstly I will get blood results.then I want to discuss coming off it
Unless they can convince me otherwise…the oncologist plan was three then scan to see if its worked…if this is the final bit for me I don’t want this chemo.so I’m very very stressed…I think I need a ultrascsn or ct now.im swollen which means I can’t eat much…all me and my husband know is IM in pain.not able to get about so I have still no answers.I wish I did.xx
Moijan thanks for
researching for us erubilners…Helen onc said cant reduce dose ad it wont work
But if yr oncologist is letting you have a break maybe I can too…iv gone onto slow release pain killers every 12hours.until six weeks ago it was just paracetamol and the oramorph in evening…dont think Il sleep much tonite
I saw the specialist Dr weds she said Il prob need a drain in about two weeks
My husbands cross I need it now I cant work from their slow timetable.Il fade to nothing by two weeks.
Anyway sorry to keep moaning and whining its so not like me…im glad the tms are going down for you moijan its definayely working for you.
Love and hugs Sharon
X
Hello Sharon …
Radio silence ? How r things ? Hopefully in a way you have been kept in for a drain rather than wait two weeks.
Hi had a phone call today .drain is on20th.if I can last long.I didn’t gonup for chemo today.am booked in for next Monday.just didn’t feel well enough today…xxx
Dear Sharon
I have been following your posts and you really are suffering my heart goes out to you. Could you ask your BN to help you get an earlier appointment explain what you are going through 20th is over a week away and you sound as though you could do with it now.
Please try to stay strong we are all here for you
Sending you cyber (((((hugs))))) xxx
Sharon - gosh hang in there. Glad you got a week off chemo. Hope you are getting some sleep. Xx
FF - if I ever get to the states (wanna take the kids there next year!) I’ll pop in for a cuppa! Xx
Hi there Sharon, just a few things. Are you avoiding salt where you can? I mean extra salt as it retains fluid.
yes I would ask for an earlier drain. i am on the middle dose of Eribulin, i think they said 2mgms, but that might be per kilo not sure.( my liver functs have always bern raised so they said best to give a lower dose.as side affects less likely)
are you on filgrastim? That does boost my cells.
(am now on that dreaded very nasty antibiotic ive been avoiding! So fingers crossed for me?)
Sharon, my heart goes out to you, so sorry you are in pain, that can drag you down,emotionally and please dont take this the wrong way, but sometimes when we are stressed, we feel worse, ive said a few times that just before eribulin i had: headaches, nech aches, sore throat and cough, felt really ill…i was in an acute anxiety state and freaked out just before my first erib.
i felt ill, thought “why are they giving me this chemo, when im so ill?” I took another week, but felt no better…after my first cycle…everything disappeared…thats what stress can do…similar symptoms and then one wonders, what is happening? Is the cancer getting the upper hand?
So stress can mimic the cancer… Hopefully your scan will show a better result than you expect xxx
i go through similar thoughts…this antibiotic can have lethal effects and a lot of the side effects are same as chemo, so im not sure where I am!
lots of love, maybe, maybe the ‘feeling awful’ isnt the cancer…fingers crossedxxxx
Moijan???
.
Hi all I had nurse round today as iv got thrush she bought the prescription round
…iv got drain on 20th but it will be a permanent one
Just a bit of tubing outside which when it needs drained just screws on to bottle.i turned this down before (still dont like it-) but didn’t realise it would be swelling as often…may phone up tomorrow to see if I cam go on a cancellation list…i mean I cant eat much.and it hurts…my bloods from Fridays blood test were all fine…so something working.xx
Helen hope you enjoying your chemo break
, sharon
Moijan yes avoiding salt in fact hardly eating…good luck with your antibiotics.xxsharonc
Moijan how long did it take for your hair to go …considering going without coldcap.
Havnt lost any yet.x