Well donr Sarah,
i too have vein trouble, but have decided to postpone having a port...most times the ladies get the needle in first try. Do they allow you to soak your arm in hot water first? That seems to help a lot and I do make a point of drinking 2litres prior to my chemo appt.xx also eating well,just before seems to help....
how are you today? i felt unusually tired yesterday..the day after my day 1 chemo.(Am due for my filgrastim injection today to boost my immunity.)
have a great weekend...
i think you may well lose it, sorry...they say 50 of ladies but, i have discovered the 50% seems to be the amount of hair lost! But hopefully you wont.
what you must do is wash it much. Less....
i stopped weekly washes, did about fortnightly...then used simple shampoo and cond, put it on under the shower, pat it on smooth it through and let the water rinse it out..do not rub or scrub...you can dry with a fluffy towel, but dont rub or scrub...and comb it gently. No heated appliances......or you are more likely to lose it.xx
hope that helpsxx
Hi I had my first eribulin yesterday , took 3 attempts to get cannula in . Chemo itself was ok nice and short. I did attempt the cold cap but with the pain I am getting in my lung too the pain of the cold cap was all too much , and I would have had to keep it on for 90 minutes after chemo , all too much ! Oh well will see if hair stays or goes . Xx
welcome to the thread...and welcome to Eribuln...the wonder drug...fingers crossed it works its magic for you xx im just around cycle 15 and its been very good for me....looking forward to hearing how things goxx
I'm on fulvestrant for 3 months to see if it works before going on Eribulin. I have mets in liver too. Having scan in 6 weeks.
Hope everyone is ok,
Moijan- "needle in first time" the words we all want to hear!
Sarah good luck tomorrow, sending you best wishes and hugs. Let us know how you get on.
Kay, glad you've got the problems under control. I feel quite envious of your daily creme egg.
Love to all xx
Hi all I am starting eribulin tomorrow , will be using the cold cap to see how it goes. I am hoping I am able to regain some energy ?? And start doing thing , I am in a lot of pain with the lung pleura Mets and in morphine at the momment . Good luck all xx
Hi Withasmile and rattyspongebob
i hope you are all doing ok apart from ratiness I was like that with my sister last week on the phone
I ended sending email apologising to her told her not to ring till a few days after chemo she is so forgetful she never use to be she lives in bath so I only see her a couple of times a year I just got fed up of telling her the same things she is well educated done nursing all her life she looks up and studies everything on breast cancer and has been very helpful with all what is going on with new treatments coming out I link to her medical pages to read the latest but this time she did not know you have steroids with chemo also antihistamines etc she thought I had chemo weds and Thursday I found her hard going I am worried as all my mothers side apart from one but she died of breast cancer at 60 all the others have or had dementia 2 from 60 and 2 from 70 and my mother from 80 when she started and apart from 1 who now is bad with dementia they all died from cancer as well but bladder in mams case she had bladder removed in 2002 and died in Nov 2016 from bowel primary lung primary and liver but got septicaemia which was the ending and only one from breast her brother prostrate but that is related to breast so they told me when I was Brca tested
and have you seen they are removing 2 more drugs from the breast can fulverstant being one of them that is the injection in buttocks one I was going to be put on that if it had not gone to liver
Hugs 🤗 to all
welcome to the eribulin I agree with the others this is not has bad as others I have had
withasmile and Moijan are very helpful they have been on it the longest so they answer lots of questions I have just finished cycle 2
but if you have read other posts you will be aware of my symptoms but I have them under control now
indigestion was the worse but last week I had a cream egg at 2pm and was crippled up by 4 usually it has been at night 2 days after chemo and I was having my cream egg about 7pm then suffered really bad have changed how much fruit and veg I was eating cut it down and upped my lansoprazole to 30mg so tomorrow there will definitely be no cream egg it is the only thing I never cut out and as I fetched it forward by 5 hours and got symptoms it has to be that so I will see what that brings
I wish you luck with your new regime and i hope it works well for you in very way
there must be 6 of us on here now
I slept for three hours after my yoga class and now I'm smiling again.
Its been a bit hectic this week (and its only Tuesday!) I just to want to do EVERYTHING and I hadn't reckoned on still feeling so tired.
I hope everyone else is having an ok week so far?
Hugs to all
Its strange, but mne hasnt really gone...my virus has, but im wondering if its possible to get withdrawal symptoms? Because after my first dose, I always feel great....anyway, i will ask the 'oncle' when i see him tomorrow! Trouble is...would they actually know? He was a bit surprised when i told him that id spoken to others about week three and that a lot of us get it!
hope you feel better soon Withasmilexxx
I've got a dose of your ratiness Moijan!
I think its mainly tiredness, not sleeping too well and can't seem to relax. I went to a yoga class this morning which I thought might help
Hi Spongerat-Rattybob-Spongenarc-"bleep"Rat-"bleep bleep"-Bogoff-Moijan
Hope this morning finds you less ratty
Hello Spongebobs xx
here I am, smack in the middle of week three and feeling ratty as hell.
Was thinking, could change my name to one of several alternatives,:
to mention a few of the nicer options...!
hope you are all feeling ok
I think you'll find Eribulin a pleasant surprise after your previous chemo regimes; the side effects all seem bearable.
I have a few quiet days after the treatment but have been able to carry on with life pretty much as normal (albeit with an afternoon nana nap!) for the rest of the week.
I've done a cooling cap twice- once back in the 90s and then in 2011 but I didn't bother this time. My hair fell out after the first Erib cycle so I chopped it really short, then it stabilised, stayed thinner but didn't grow and then it gradually started to thicken up.
When do you think you'll be starting?
wishing you all the best
Hi all , saw oncologist yesterday for scan results, EC chemo had not worked on lung pleura mets, pain increasing so next step is eribulin. I did 3 cycles of EC chemo , previously had capecitabine, gem / carbo , taxol and FEC for primary.
I now now have a spot showing on the 5 th rib too.
Any advice on eribulin ? Don't know if I am spelling it correctly.
I am on morphinefor for lung pain etc so really hoping this chemo will work. I used the cold cap for EC which worked well on the hair. Any advice tips etc would be gratefully recieved. I know it only takes 5 mins for infuse? Anyone done the cold cap? , if so how long do you have to ear it for after treatment.
The EC chemo floored me so hoping this will be a bit gentler, I would like my life back please !!
Thanks all xx
i use to alternate each side in tummy sitting grab fat inject
also I am not if I understood right not having ct scan till after cycle 6 but will check if the specialist chemo nurses are free for my talk on how it is going which at the end of cycle 1 they were booked up and I refused to go back at 4 0clock but They can ring me I have since found out at 4 if I do not want to do the 20 mile journey
Hi Kay, hope the prine juice works...if you are like me, then your body will adjust,...it will get better. Im convinced now that its lack of water....i get bored with water, but i try and drink fluids from a measuring jug at least teice in the day..( 500 mlls each time...but usually rooibos)
will pm you too
am pleased about your positive scan..xx
re the injections...yes I always go into my tum...thighs would be painful! Picked up a tip from Barton there.. I always give it sitting now ( she does it on the loo) I sit forward on side of bed as the fat comes forward and im less likely to hit a previous lump! I give it last thing before bed and press hard on the area for a while as did get more lumps if it bled after.
they say to move 4cms over each time, but i dont ...I do try to alternate the sides tho
will pm you.
phew- good to get all that off your chest! xx
I hope to stay off chemo until the beginning of May. I have my CT scans every 12 weeks at the moment and the May scan will decide what's next treatment-wise
Have a good dog walk and yes, definitely wet weather gear for the w.e
Hi Moijan and Withasmile
wii it is Friday and started prune juice Wednesday evening in my nutri bullet with figs raspberries spinach took ffkaxseed capsules no go again last night same drink but with pomegranate and something else with a tablespoon of flaxseed oil in during the day I had glass freshly squeezed orange juice rooibus red tea plus my 2 litres water and a few cups of normal tea still no go so this morning have had apricots with my skyr yoghurt and just took movicol which I will take through out he day not sure what I will have to lunch but I know I am having jacket sweet potato and beans at tea my choice if I have not been but I will eat around 4 in the hope I do not get this really bad indigestion otherwise I feel OK to walk dog today
i did have on wed evening my knees were aching quite a lot not sure if that is to do with the eribulin but will see
Withasmile you enjoy your freedom whilst you can how long you coming off for have you had a 6 month ct scan yet?
Moijan when my hub gets on my nerves taking over MY housework he does not do it properly he never dusts and we have a log burner and that causes lots of dust or even loads dishwasher properly I have to sort it when I know he has switched it on I get up stop it and put them in order the paddle can not even turn it is hitting his big plate everything put in backwards I am sure he is losing the plot any way I take dog out at these points even if we have already been out for normal walk or go to another room as the more I scream and shout the more stressed I get sometimes I think he does these things to annoy me he will not answer phone because there is no one who rings him then he wants to know ever bit of conversation I have had and who it was I just say if you answered it you would know then they would talk to you MEN!
now i that of my chest hope every one is doing ok
have I missed any newbies if so I am sorry and how are you doing?
i have just had part 1 of cycle 2,
hugs 🤗 to you all have a lovely weekend weather permitting looks as if I will be getting my wet gear out
I think it gets through the bb barrier. It does appear to work in a more subtle way than many of the other chemos we've had.
Sorry about your Week 3 rattiness. I've been taking oral magnesium drops which have definitely helped stabilise my moods and did ease most of the Week 3 symptoms. At the moment I'm nibbling on pumpkin seeds which are supposed to help with mood swings- it feels like eating rabbit food!
Happy to report my last scan showed (apart from numerous blood clots hahaha!) the tumours in my aorta lymph nodes have shrunk to 'normal' size and the liver tumour down to 9mm. I've asked to extend my chemo holiday until they re-scan at the beginning of May. I know its risky but its what is right for me at this time.
I keep meaning to ask you- when I inject the thinner into my tum its fine but when I go into my thighs it leaves red marks and hard lumps. Do you always go into your tum?
Its a lovely sunny morning here so off to enjoy,
Yes, my thighs get numb nd then improve, but they still feel different...my fingers are ok, now tho. I hope your symptoms get better over your breakxx
do you think your symptoms are why your onc has given you a. Break? When two previous chemo buddies came off erib and said they had had numbness, i me tioned it to my onc, who is excellent and he said Erib wouldnt cause my knees to feel numb...but actually we all had that! Anyway, im convinced it. Gets through the blood brain barrier..hence the week three syndrome...tonight, I started getting ratty with himself and just need some space, whereas id been fine until then! If it does get through the bbb then that bodes good as a preventative method for frightening any stray brain mets away!
Well time will tell.
have a good break from it tho, x
mine has got steadily worse- constant tingling in hands and feet, the fronts of my thighs are completely numb and my arms feel quite odd. Hoping that things will subside during my chemo holiday.
Thank you Withasmile.
Interestingly last week after chemo, my fingers got redder tips and were tingly...concerned me a little...one of my legs also felt funny, but both symptoms have now eased. I Recall a couple of ladies were taken of erib due to parasthesia getting worse.
anyway, next cycle im only having day1/ then two weeks off.
all well here; I have been given a few weeks off chemo so I'm making the most of my new found freedom and energy and loving every minute of it.
There's an odd bronchitis-y virus doing the rounds that also seems to affect sinus, I wonder if thats what you've got? My husband has had it for a few weeks and he found Vicks Vapour Rub on his chest at night helps. Luckily I love the smell!
I went to see the cancer counsellor this afternoon. I haven't been for a couple of years but I couldn't think of much that I needed to talk about so we discussed a few aspects of treatment. I realised as I was driving home how (at last) I've come to accept all this, and how much easier that has made it. Its been a long slog.
Wishing you well for tomorrow and sending lots of love
Hi Withasmile, was wondering how you are? Hope you feel ok?
Kay, i definitely get less reflux since cutting out tomatoes...a bit a shame as they are so good for us.
this virus is really weird....have been getting nasal pains doen one side and lots of runny nose, sneezing, and eyes ache...for about two weeks now! And its not really better! It feels much improved after a cup of coffee, for a while, later it comes back. And sonetimes, I cough up stuff from my throat, so there is definitely bacteria, but not a sure throat......in the past, these symptoms have been part of cellulitis in my arm, but just now my arm is fine!
Anyway, Kay, you are doing just fine, by the sound of it. And hopefully you wont get nutrapaeninc...im lucky with the filgrastim..years ago on Taxol, it happened to me a few times, and the onc at the time wouldnt give it to me, but actually its more cost effective to give it, rather than the nhs pay more money for say a weeks hospital stay! Try and keep away from crowds, etc, I also use first defence....its only because of a lapse in taking that...that I got this virus!
I do hope the reflux eases for you.
I've got a hiatus hernia and the Erib certainly seems to aggravate that- I did find eating earlier in the evening helped.
Sending you hugs
thanks for that I will up the lansoprazole if that does not work I may try and stop it and see what happens
I do eat tomatoes I make my own tomatoe soup so I will also try cutting them out I am open to any suggestions I will give most things a try but I have noticed since on the eribulin I am belching more these days or burping
this week I made parsnip and apple soup very tasty perhaps it is the bread causing me the indigestion who knows
just got back from chemo neuts 2.5 so I will see if by eating some nuts will help fetch it up or not get any lower I did ask if it goes down to 1 would they give me the filgast as eribulin is known to cause it but at our hospital protocol is that it is not not given unless under 1 thought they ,any have given me it as a precaution any way I am the only one on eribulin at our hospital even the nurses had to look it up
Hugs 🤗 to you all
Kay, I hesitate to say this, because its a bit Sds law....but my reflux seems a lot better!
i have had a lot of it for over a year now.,,the only things I have cut out....are tomato and very acidic foods.
i do have loads of milky stuff.....i was on omeprazole because had chest pains last year and they responded to milk, so gp wondered about an ulcer....anyway latterly the omeprazole seemed to make it worse, so I cut it down ( gp wouldnt give me lansoprazolr? Too expensive). and now its not that bad.
oh, and I try to eat earlier when I can.
you must be feeling a little better now if you are going out
I agree about it not controlling your life I will not either though my husband would have me sat on the settee every day he says I do too much but being a man who goes to bed with the first sign of a cold he would do
but I have told him if he thinks I am sitting festering on the settee waiting for the grim reaper he can think again life is for living
hope you enjoyed your day
withasmile are you ok how is your injecting going? Are you coping doing it ok
hugs 🤗 to all on this eribulin hope you are all managing it ok
onc has upped my lansoprazole can take laxative Thursday night if I wish and I will cut down on my fruit and veg intake till Saturday in the hope I do not get that really bad indigestion this Friday I have also bought a bottle of root ginger and lemon (No Alcohol) from holland and Barrett to settle stomach
i am doing ok my last day of my week off apart from a bit of tiredness today I am ok I hope my next cycle which starts tomorrow is as good if not (hopefully no indigestion) a little better
I am just hoping I can lay off using scarves or wigs a little longer as I do get hot when out on my 6 mile a day walk there is only Thursday I do not do my dog walking though I may give it a go and see how far I get but I am trying not to over do anything but enjoy what I like doing the only thing I have stopped is my Zumba but I feel I could only do it every third Monday
I hope you are and anyone just starting are managing it all with no serious side effects
sorry about your hairy coming out you have such lovely looking thick hair on your picture but as long as you are well enough to be there that is what matters most
take care cyber hugs 🤗 Fir you next round starting thursday
I'm a day behind you on treatment and mine starting falling out this morning - 2nd cycle Day 1 is on Thursday 16th. I used to have very long hair, see my avatar, cut to a short bob Oct 2014 before docetaxol and then I had just grown it back to shoulder length before eribulin. I have a wig which I really like & loads of turbans but I was hoping to keep it for a friend's wedding in late April - I don't think so now!
How are you feeling at the moment?
Hello to all you lovely Spongebobs. Love your hair Marnster - you look a real rock chick!
Love Helen x
yes caffeine does irritate the bladder and coffee is the worst for it I usually drink plain boiled water during the day with a normal cup of tea in the morning then differing herbal teas but had never tried the rooibus so now I have tried the rooibus green and today will try the red I save the lemon and ginger for day after chemo hoping the ginger settles the stomach
as for the gin and tonic that is one drink I have never had due to once I asked for a vodka and lime and the person got gin and lime it was awful so never had gin since but I have not really drank for years only the odd wine or wine and soda when I go out for a meal. I do not keep drink in house as I do not enjoy it on my own only if I get company and I do not encourage drink and driving and those that come and see me have to drive to get to our village so they have to settle for coffee etc
enjoy your day
i did think of prune juice I thought of buying it to put in the nutri drinks my daughter makes me but when I did my shopping on line I forgot I looked was going for the long life one as it was cheaper than the fresh
will try and remember this week after seen onc
your hair looks great and you look well it does suit you
I am already grey given my 65 years young this year and the other chemo's
but I will not shave rest off yet given what everyone has said I have a wig but it is a light brown with blonde streaks and after being grey for a couple of years I prefer the grey so I am going to see if my hairdresser can colour it grey I was going to give it to the wig bank so I have nothing to lose by trying though it was expensive but I did not wear it a lot it has a lace front and microfilment so it is my scalp you see but I still found it not in summer and cold in winter also I do not have a long neck and if I put a coat with a collar on it pushed it up when I got hot it slipped so only used if going out.
This time I have bought a platinum fringe and a type of scarf which I will see how I get on with scarves are only £15 so I can change often but I may not need them if it all does not come out but I minute I feel like friar tuck I can see but hubby says it is not that bad
off to get ready now for onc appointment which I feel us a waste of his and my time
big hugs 🤗 every one
make the most of this lovely sunshine
wishing you the very best with your Day 1 I hope it all goes smoothly for you.
let us know how you get on
Marnster you look FAB!
I hope you don't mind but I'm unashamedly going to copy you- my hair is the same length and platinum blonde is definitely the way to go- lets rock it!
Wishing you the very very best result with the RT.
Moijan at the moment I'm less g&t and more of a Guinness girl, its one of the few things I can actually taste!
Kay- good luck with your onco appointment; on my last cycle prune juice was my saviour. For me, different things seem to work at different times.
The suns gonna shine today ladies so everyone enjoy it- the weather really IS as nice as Oz!
Yes, my hair came out in huge handfuls after the first cycle. Every time I washed it or brushed it, big clumps came out. And mostly from the crown. I shaved it back again so any subsequent hair loss wasn't as noticeable. I'd maybe notice a few hairs in the basin after washing my face and wetting my hair in the morning. It always seemed to be worst just after my day one treatment. I could pull on my hair and it would slip out of my scalp. But it was never as bad as after the first cycle when my hair was longer. I only had five cycles and I didn't lose all my hair. Just a bit thin on top!
This weekend I went to the hairdresser for the first time since I got it shaved back in November and I got it dyed platinum blonde for a bit of fun. I'm going to lose part of my hair in the next few weeks from radiotherapy so I figured, what have I got to lose! I'll have to shave it back to even it up some point anyway. I'm loving my new blonde hair! Makes me look less like a cancer patient and more like a rock star!
hi Kay and Withasmile,
ooh, am all in italcs! Never mind.
yes, my hair fell out rapidly from my crown....left long soft grey baby hair behind all round, like some kind of aged hippy Friar Tuck! Now its growing very thinly over the crown..himself says he can see my scalp thru it!
am finding the wig a bit hot at present!
re the bowels, I think water is prob best, but i get bored with water and too much caffiene affects the bladder so Rooibos by the measuring jug is what I aim for! ( not too sure, but i think Withasmile recommends gin and tonic by the bucketful...lol)
yes, mine fell out after the first and during the second cycles.
I chopped it really short and it stayed like that without further shedding for a while, then began to grow back.
After six cycles it looks more like a short hair cut than chemo hair
just a quick question
has anyone's hair fell out mine after 1 cycle is coming out like mad got hairdresser to cut it short which I do not like anyway but now wish I had it shaved off but I was hoping I might have just got thinning
Hi All you lovely ladies
have a lovely weekend I hope every one is coping on the eribulin
if it is your week off make the most of the lovely weather they say we are having next week especially those of you down south
hugs 🤗 to you all