My eating is terrible. I hardly eat anything but what I do eat is usually sweet. I went through a time when all I would eat was muller rice pots, but my taste buds changed and they didn't taste the same, but now I am eating bread and butter pudding with custard. I don't fancy any meat, I use to love fruit and veg but it doesn't taste of much so I don't bother. Bad I know, but it is keeping me going.
Hugs to all
Really useful recap from Moijan - thank you. I have had a few UTIs recently so drinking loads of water. My hair has definitely thinned since 1st cycle (23 Feb) however it has settled into a nice short style and I keep my fingers crossed, don't wash it too often & use Batiste brunette dry shampoo to freshen it up.
Had an MRI this morning - looking at the bone mets this time. Went in early, 40 mnutes listening to the Carpenters with my eyes shut & done!
Hope you are all getting on ok & managing the side effects as best you can. I often wonder why these drugs affect us all so differently, strange isn't it?
Big ((((((cyber)))))) hugs,
Love Helen x
im convinced that as cancer cells have at least 29 sugar receptors on their cell wall.......that loads of sugar is not ideal i have had more recently, but am definitely cutting out as much as I can......
its a toughie because sugar is comforting...but for me now, it has to change, also my teeth arent brilliantxxx
I dont know what treatment is next...im thinking it may not even change......depending on my scan result.
very best wishes for you on Eribulin....
I also found your re-act helpful. Like you I have had UTI's which I have lose count of. Some of them have stormy treatment. I get very fatigued. I lost all my hair very quickly, but it is growing back now. I had a sore mouth after the first cycle which landed me in hospital.
Can I ask you what your age is? I am 55 and seem to have been dealing with the same things you have.
Do you know what treatment they will give you now?
Warmest regards and hugs,
a great re-cap Moijan, really helpful. Lovely to hear from you.
I've had no urinary infections no diahorrea or sickness but have struggled with fatigue.
I was advised to use dark nail polish to block the light getting on nails, and that worked well for me except big toenails split off halfway up and then regrew strong.
I've been reading some very interesting research on sugar and cancer and another opinion is that lowering sugar can help PREVENT cancer in those who do not have it, but it makes little difference for those already diagnosed and for whom a pattern has formed.
I like to think 'everything in moderation' is the best way.
Like you, I'm uncertain what the next stage of treatment is- I have my scan next week.
Love and hugs to you xx
have now been on this drug for 10 months....it has been a bit of a miracle drug for me....and im grateful as it killed the bc in my liver and that site has not regrown...........however, I understand there are a few very tiny
new growths in my liver that can now be seen on an MRI.
Currently im still on this drug, but am due for a plethora of scans after 6 weeks......and then....not sure just yet what the plan is.
New ladies, take heart. This is a kind chemo, a very short time on the needle...I have had very few side effects at all, though, week 3 I am always very moody and latterly a little depressed.
I tried the cold cap but it lengthened the treatment time from 20 minutes, to nearly two hours, so gave that up..
lost lots of it, and its now regrowing...get yourself a wig or other asap, unless the tufty look suits you!
This drug does affect white and red cells, So I requested filfgrastim at the outset and have not had problems...I actually think it has helped me remain well and less tired.
have had so many of these, ive lost count! They are listed as a side effect and so drink loads, wipe from front to back and pee after any other activity down there!...dont get constipated as the overcrowding down there causes stasis in the urine drainage and can allow bugs to grow, which wouldnt normally if pee is flushing regularly......drink bucket loads of water...especially after chemo for a few days. I often drink out of glass measuring jugs to see how much ive had.
only had this during my first cycle, but I mouthwashed with sodium bicarb..which sorted it.
i had no diarrhoea, no sickness, my nails keep splitting tho...so
I add a coat of clear nail polish to fingers and toes as neccessary.....
the instructions say. "Avoid alcohol" I sometimes have broken that rule, but never went overboard.
this is purely my own opinion, but this drug is the third one that has been very useful in controlling my bc....
each of the three has failled pretty quickly after I had a break...this time, I only took one week off and bingo, the mri showed new growth....I personally think its not a coincidence.....obviously you must make your own choices, but believe me...next time I find a wonder drug......I wont risk a break......it happened after two weeks off during Cape and after I stopped Letrozole, following 6 successful years on that...
the other thing I did recently was have much more sugar than I should have and so, im going to address that too.....after the horse has bolted....but no matter.
I really wish you all the very best results on this drug, love and hugs
Sorry I haven't been on here for a while. My father died so had other things on my mind.
No one has said anything about my markers so I don't know if they are measuring them or not. I have just had a CT scan so will know if anything has worked or not. I am due to have more chemo next Wednesday, bloods all being well.
Hope you are doing well along with all here.
I hope all goes smoothly on Friday and you can continue ok with the reduced dose.
I'm glad the dexamethasone helped and hope you're eating again.
its lovely to have you join us but so sorry you are here...I'm sure you know what I mean!
From my experience (and I think most of the other Erib ladies here) hair seems to thin and shed dramatically and then stabilise. I know I was literally leaving a trail after the second dose but I cropped it short and although it was thinner, it stayed put.
Sorry you're feeling shattered. My treatments have been pretty continuous and I've been fatigued throughout Eribulin but it doesn't seem to be the most widely reported S.E. Hopefully you'll be able to plan a bit easier once you settle into the Eribulin routine, it doesn't have dreadful SEs like some do.
Do you have steroids with your treatment? Some do and some don't. . .I find I can use my steroid-dose days to give me enough energy to catch up on chores!
Talk again soon, take care
Just had an extra weeks break from eribulin, had lost a lot of weight watchers not eating or functioning. Had low lose of dexamethasone which seems to have helped. Onc said he will reduce dose . See him tomorrow and all being well back on chemo Friday . Hope everyone is managing the eribulin. My hair has thinned a lot around the fringe so I suppose more chemo and it will start coming out again. I did try the cold cap but gave up! Xxxxxx
oh dear- sending you best wishes for recovery from your horrible Shingles pain, as if you didn't have enough to put up with.
Thats really annoying about the wig fitting.
Hope you have a good w.e
"...the lovely slapped cheek look from the steroids..." don't we know it well- I hope by now its subsided!
Have a great w.e (raining here)
Glad your hair has settled into a pixie crop, from the look of your lovely face in your photo I think it must really suit you. The CT results are great too, and must be a great relief.
Early retirement! wow a big step! It'll be so nice for you to spend time doing what you want when you want and within a few months you'll wonder how you ever had to time to go to work. Will you have a leaving party?
Its lovely to hear you sounding so well,
Haven't posted for a while but been following everyone's stories and I wish you all the best with the Eribulin.
Kay - I do hope the shingles clears up soon, it is so painful isn't it? I had it on my back when I started herceptin.
Nicky - hope you're ok, I see you got my photo!!
I had some good news on Wednesday with my CT scan - the liver is showing improvement after 3 cycles of chemo so I am very pleased. My side effects haven't been horrendous and I've managed to get away with my hair thinning rather than complete loss - I have cut it from shoulder length to a pixie crop.
I have also had my application for ill health early retirement from my job as a school administrator approved with effect from 31/5/17! I am 49 and have worked at my school for 16 years and previously in a bank for 15 so it will be very strange not working. I have thought about it for a while now and feel the time has come to have some quality time with family and friends. I will be sad to leave though.
All the best to everyone and big (((((cyber)))))) hugs.
Love Helen x
Kay, sorry about your shingles...
have had it a few times, but only very small patches/pustules under my ribs, but on the side of my body.
i dont believe its that common following chemo....xx
i have never heard of shingles on an arm! It tends to follow the trigenimal nerves, so the face and eyes are not uncommon, the back too. The time of my initial outbreak(have had it twice) was after weighing babies at thr clinic....one of the mums had brought baby along to get checked out, but hadnt mentioned it ( a bit selfish really)
I do recall it after my initial chemo, in 2001... And found alo vera gel soothed it really well.
i have also experienced coming out in very red raised spots all over my arms, legs, face after taking nitrofuradantoin....'hives' which was much worse than shingles to be honest and much more rapid.
anyway, I truly hope yours goes asap.
Oh, and altho there are, so called treatments out there....the reality is...one just had to wait till it goes away....obviously not sharing towels if you have pustules and loads of hand washing and pain killers.
good luck with it.
Chemo went smoothly and, yes, I have warmsd up after the cold cap, boy it was freezing this week, but that's down to my rather thick hair thinning a lot. Luckily the ward was quite warm so I didn't feel too cold but glad to get the stupid ice making machine off my head! We will see just how long I either need it for, ie if I lose all my hair or how long I can bear having it on for. I took the pre med steroids and anti sickness, the ' bottle of champagne' ones but have not taken or needed either since. Next time I will halve the dose of steroids and see how I get on and if it's OK will drop them all the following dose. I have the lovely slapped cheek look today from the steroids and hope it goes down soon. As for which week I'm on I have no idea! I had about 2 and a half weeks between the first and second dose so in theory I'm now in the dreaded week 3, or coming up to it, but could have had a mini one already! Looking forward to little in the way of medical appointments for a few days now but, as Kay/pussy has written we can get bitten on the bum when we're least expecting it. I ended up in A and E a few months back with confirmed flu in my week off treatment and in an isolation wards, which was not much fun I can tell you. Kay, hope you don't suffer too much with the shingles, definitely something you hadn't wanted or expected. Take care.
Hi Withasmile and Moijan and all you newbies
hope you all had a good Easter and everything going smoothly
after all my bloods being top notch the last thing I expected was to feel so rough on my week off I had appointment on Saturday to go see wig lady in Leeds area got my daughter to take me (I do not like driving on motorways) and felt very tired so after 2 hours well just under we arrived parked up found place it was all locked up so I rang phone no answer I sent email no reply hung around i case she had time wrong and thought it was 12 and not 11 nothing so tried to find somewhere decent to eat to no avail so decided to come home
arrived home took cardigan off my left arm was covered in a red rash next morning it was across my left breast and on my back left side rang out of hours GP told to go see a pharmacist at a chemist that was open 7 miles away if they thought I needed to go to hospital then ring back pharmacist thought it was some sort of allergy told me to put on my steroid-cream I have for dermatitis went to have bloods done ready for this weeks chemo sat talking to others on chemo got home thought this us getting worse so rang my GP 3 hours later they rang back after describing it yet again told to go straight to surgery so I now have shingles and given horse tablets aciclovir 5 x a day for 7 days my message do not always believe what pharmacist tell you I should have insisted going to out of hours GP on Sunday. now I know why I felt so rough but it was not because my bloods were low they were all close to range. So I have had to miss chemo this week but can have it next week but got to go in isolation cubicle. Apparently it is common. In chemo patience if you have had chicken pox has a child it lays dormant in the spinal column and when you get low or stress it activates it and you can not catch it from chicken pox but others can catch chicken pox from shingles as if we do not have enough to cope with. With blood clots neutropenia and what ever else
after all that the lady had a new computerised appointment system put In and she had no recollection of my appointment I sent her copy of email confirming my appointment I would never have gone that far with out knowing I had appointment
will be back when I am feeling more normal well as we can be
Hope you've warmed up after the cold cap Nicky!
Glad the filgrastim did its job.
I know what you mean about getting rid of your hair if it starts being ragged, I'd rather do scarves or bald.
I hope this week goes well for you. . .which week is it?? 😉
ps when the oncs mention domperidone I always think of domperigon champagne! *if only*
I hope all goes well at the hospital today.
I think its amazing how the oncologists mix chemothapies together to get good results and from the research so many combos do work well together.
Sending special hugs at this scary time for you
Many thanks for your replies withasmile and Moijan, currently sitting with my cold cap on being infused! Neuts were off the clock, in a positive way, so the filgrastim injections did their job, I was a bit worried they wouldn't recover sufficiently but I hope now they get back to a more normal reading whereas they were a bit on the low side when I started.
Will have to see if the hair hangs on but if anything I'd rather get rid of it and wear scarves etc if it starts looking ragged. I am going to see how I get on with fewer steroids or even not take them at all and see how I get on with side effects, I was OK last time, just some slight nausea but nothing that a domperidone couldn't sort out.
Thanks again for sharing, it really helps. I will keep an eye out for week 3 extra side effects! However, as this has been a completely drawn out first cycle I'm not sure when my week 3 might be!
Good luck today Nicky xxx
like withasmile, I wasnt given any diet restrictions. Hopefully you will be fine with your hair, mine came out like falling sleet! But has grown back quite a bit...very fuzzy baby hair, but I wear wigs all the time just now.
have been having reflux for past three years since recurrence( thru cape, vinorelbine and erib) I now have cut out anything containing tomato and sleep on my left side( see the research on that) and have much less probs...I try not to eat after 6.30. And take milk up to put on my bedside table in case.
dont always sleep that well on erib and during week three, I feel compelled to be honest..to a fault, which has caused me some problems....am sure everyone will tell you about week 3 so wont go on too much!
I was put on a reduced dose( middle one) as lfts were high before starting it...seems you get more s/e on full dose if lfts are high...I do have alcohol...the instructions say dont, but i only have one if am at a do...and only a few days after treatment, not just before. Check that with onc if tempted.
am on filgrastim and really believe it helps me a lotxx
love and best wishes
I was advised to eat just what I felt like eating, but told small frequent meals were better than a big meal.
I discovered a few things that gave me bad indigestion and a few things that the chemo made taste too weird, and I didn't drink alcohol, but apart from that my appetite has stayed pretty normal (I lost my appetite completely on Cape). I eat natural yoghurt to keep healthy gut and lots of fruit and veg, lean meat and fish and not much fried stuff and my weight only dropped about 6 lbs.
On FEC, Taxol and Cape I had to have doses lowered to 75% so I started Erib on a 75% dose and then went to the full dose after the first cycle and have been fine with it.
My hair fell out in buckets after 1st dose so I cropped it mega short to avoid the motheaten look and it stabilised. By the 3rd cycle it was growing slightly. I never lost it completely, I did cold cap with FEC and Taxol but didn't bother after that. I didn't wear a wig- I had The Chemo Look but was happy enough with it. Eyebrows I pencilled but It was loss of eyelashes that really bugged me.
I really hope all goes well for you tomorrow and you have a smooth treatment.
Well, we try again tomorrow, bloods first thing then onc and hopefully treatment. Our local hospital usually gives treatment the day after the blood test and onc appt, that way you aren't left hanging around for the pharmacy to get the drugs ready however due to the re scheduling I expect to have to wait a bit. Luckily l live quite close to the hospital so may come home in between the appointments.
A few questions for you long termers, and not so long termers:
Have you been advised of diet restrictions? I had a long list whilst on FEC many years ago but nothing given out for this one. Either the nurses assume I know what to avoid or maybe I don't need to avoid anything. Any thoughts or direct instructions from your nurses?
Have many if you had dose reductions? I'm worried about my blood counts even with the filgrastim injections for future cycles. I was on an 80% dose when on Capecitabine which worked well and I'm sure I've read on this thread about similar reductions.
Also, I'm sure my hair has decided to give up the ghost, even having used the cold cap. If yours has fallen out, has it regrown whilst on this drug? Although I'd rather keep it (wouldn't we all!) I'd also shave it off if it was going to look too moth eaten! If it grew back to even a fine covering I suppose it would be better than nothing.
Thats all my picking your brains for now, I expect I'll ask other questions as and when I get into regular dosing.
Good luck everyone on this regime and Moijan, I hope the dentist didn't give you any nasty news - so many things to consider!
that sounds horrible I hope the dentist can do something to ease it.
There's always something isn't there- besides the obvious!
Too tru, withasmile,
i now have a sensitive back heavily filled tooth! Seeing dentist tomorrow, but dont think he will do anything...feels like a bomb waiting to explodexx
oh, Nicky and Shirley
what a flippin' nuisance (if this wasn't auto-censored that phrase would've been a tad stronger!)
I'm sorry you're both having this hassle. . .I'm sure the one single lesson cancer has taught us is you can't plan for anything.
Hoping things improve steadily
It sounds like you are having the same trouble as I am having. I have just managed to get cycle 3 day one. I didn't complete cycle 2, because of my whites were low. Now I am having the injections, I am hoping that things will be better. I have a CT scan due on the 2nd May, and with the little chemo I have had, I don't think it is going to be a good one. Guess I will have to wait and see.
, Hi Nicky and withasmile,
just to say, Nicky, altho I dont have steroids or antisickness drugs and im never sick/nausea...I did ask about the premeds when i saw my onc, as so msny of you are on steroids I thought maybe i was missing something! But he said that ' they ' just dont give them with Eribulin...i have noted that the guidance suggests that steroids are useful for some people.....amd I wondered if steroids might get rid of the week three miseries!
Nicky, sorry your little whites are low....have you started filgrastim then? I have been on it from the start
and my bloods have always been very good plus minimal s/e. Filgrastim also boosts the red cells, which gives us more energy and so, for me, I think thats why i have minimal s/e.
Heres wishing you all a very good trip on your next Needle Party xx
Hi Nicky and withasmile,
just to say, Nicky, I dont have steroids or antisickness drugs and im never sick/nausea
Well ladies, unfortunately my wbc and neuts were too low to have the second dose - goodness knows how long this first cycle will be eventually as Easter added a few days in between! I amd now on the bone marrow boosting injections (I will learn how to spell it! I was on the other ones with FEC which were just initials so I knew how to write that!).
Enjoying the week away from hospital and treatments but just want to get the second dose under my belt and get a move on! Also I want to understand how both doses affect me when given at the right time intervals, that way I can plan a few things and try to get a mini break in between cycles. Oh well, I'll just have to be patient.
Hope all the other spongebobs are coping with treatment and side effects.
Take care all
I'll be really interested to see how you get on without the steroids as I'd like to drop them when I start back.
Hope all goes well Tuesday
Hope your bloods are OK Shirley and you get your next dose.
withasmile - I realise you posted a message to me back on the 10th but for some reason I didn't see it until the other day, and then it's been a bit busy over the Easter weekend. I felt Ok with only the need for 1 or 2 domperidone in the first day or so. Glad to get off the steroids and will have to see how much they help or hinder with future doses, I'm not sure everyone has them so it's not a case, like docetaxel, that you definitely have to have them, or so it seems. Overall doing OK with a bit of indigestion which was awful the other night, I think I need to up the dried fruits to help! My next dose is due on Tuesday (which is day 11 rather than day 8 due to the bank holiday weekend) so I'm hoping the bloods are OK. I know my platelet count dropped as I had a lot of nose bleeds which were a sign to me on my last chemo that they were low. They seem to have stopped so fingers crossed all bloods have recovered enough. After this cycle I will be on the proper dosing on day 1 and 8 so I may need to buy some of Babsy's mushrooms to boost the counts!
Hooe all spongebobs are having a nice Easter weekend and that the treatments are kicking the little uggers butts but giving few side effects.
ps have just re-read my post and noticed that 'bloods' had been auto changed to 'looks'! Have edited the post to change it back.
I am back to the unit on Monday to give blood, if it is OK then I am getting another cycle of Eribulin. It would appear that my blood is still low, yet I haven't had chemo in three weeks.
Good luck to anyone having treatment this week coming.
glad to hear that things have settled into a rythym for you and the side effects are bearable now you have them sorted.
Have a happy Easter and if you can't have your creme eggs then sending extra hugs
hope you are all going to be well enough to enjoy Easter I have nothing g to report all bloods very good finished cycle 3 mild indigestion just coming on though only a light tea of seabass new pots carrots and peas
other end OK since starting prunes on Tuesday Wednesday and Thursday so apart from tiredness which must be the poisons rather than my bloods I am doing fine
hope all you other newbies settle down and it gives you all good results I am not having scan till end of cycle 6
so 3 more to go before I know anything
have a lovely Easter 🐣
🤗 hugs to you all
good luck with your 2nd cycle today Sarah, I hope all goes smoothly.
I hope everyone else is getting on ok and managing to enjoy some of the sunshine.
Marnster, how is your new treatment going?
No but I think that is coming, as my bloods have dropped again so no chemo for me. That means I have one and a half cycles of the Eribulin. And on top of that I have a UTI, just waiting to get antibiotics from the doctor. I feel it is one thing after another since I was in Hospital. Sorry to sound little down.
I've found so many of these side effects come and go at random so you might well stop squeaking. . .
I hope the nausea has worn off and you're feeling that Eribulin is copeable-with (obviously, one of the side effects is that you make up words cos you can't think of the correct ones!!)
Has the cold cap held your hair? I really hope so.
I have an anti sickness pre-med 20 mins before my treatment, then steroids and anti emetics in the IV.
I have two days of steroids (2 x 2 per day) and two days of anti sickness (1 x 1 per day) to take home.
I get a real buzz off the steroids (think Duracell Bunny) and can't sleep but they really get me through the first couple of days.
My bc status has also changed tactics. My 1st tumour was hormone negative, the following 5 were hormone positive and this last one is a combination of the two! I've remained HER neg throughout and I'm BRCA2 pos. Onco says its cos the cancer has altered to overcome the chemos and hormone therapies. I just say flippin' heck!!
Wishing you well and 'speak' again soon
My voice is often husky or froggy...bu im convinced its the reflux...have had 15 cycles now and it does vary
i spoke to my chemo unit about my voice when I was there in Fri, and they said it can be a rare side effect of Eribulin and it could be long term. I sound like a little girl!