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
i am sure withasmile will not mind she will be honoured I am sure
it is nice to see you are feeling a little better
I had something similar last week but it came to nothing after a couple of days I seemed OK off to onc Monday at 2 about my indigestion episodes on both the Fridays after chemo I hope he is not going to take me off this drug I only asked for some advice from the head chemo specialist nurse and she said I had to discuss it with the onc. I feel sure it is to do with eating lots of fruit and veg trying to get my bowels to work after being constipated from the chemo so the wind is trapped.
I got rooibos green with manuka honey and one called red bush you did say they helped with the Bowles so I will let you know also I got some flaxoil capsules so see if that works this Wednesday if I can still go ahead
have a nice weekend enjoy your week off mine as been lovely had youngest grandchild yesterday all day and I was fine so that is good hope it is like that every week off
big 🤗 hugs
survived day 8, relatively unscathed. Still feeling virusey, but have heard its going round!
hope everyone else is ticketyboo!
lovely to hear from you- yes it's been really warm here in Dorset too- like a summers day.
Its good your SEs haven't been too bad, I have the fingers/toes too.
The Easter break sounds great I bet you're really looking forward to it- and all those muscles in lycra (be still my beating heart!)
I hope your 'rest week' goes well, take good care of yourself
hope your treatment goes smoothly, and take care of that virus.
Bruce says he's very proud you've used his smile for your avatar (he's going to get even more big headed than he is already)
As a breed of horse, he's an Irish cob (a cob basically being a horses body on shorter legs) so now he's going to be known as an honorary Spongecob!!
thanks for sharing that, it really helps knowing others are managing it ok
It seems like we're all wearing our clots with pride!
Now I've got my head round it I'm ok- just another trial and tribulation, which I guess is the price we pay for staying alive.
Glad your second dose went well- I'm there with you on the jittery steroids and sleepy afterwards. Can't do without my afternoon Nana Naps!
This is a lovely group isn't it
Moijan hope you are all ok for tomorrow my love. Sending lots of hugs and yes get a good rest tonight.
Withasmile I'm also in the same boat with the clots. I had a massive one on my lungs over Christmas so like Moijan I'm on the Fragmin (10,000) indefinitely. However seems to have done the trick as they couldn't see any more clots and the original one had disappeared. I did have a procedure to burst it too... wasn't fun!!! But I have taught myself how to inject my tummy- I was so squeamish at first but realised I had to woman up and do it! My husband was doing it previously but bless him he works late a lot so I thought I better just do it and it gives me freedom if I want to stay at my mums/sister I don't have to rely on anyone. I still hate having to do it but hey ho just another thing to add!! But I'm sorry this has happened to you too Hun. Sending big hugs x
Had my second Eribulin treatment today and it was ok apart from me feeling sleepy after and a bit jittery from the steroids. A nap and a good lunch from my mama helped so hopefully will be ok. I like the fact I don't have to be chained for ages to the machine and we have cut the pre meds down so I'm out in an hour. I do hope it works and SE's arn't too bad. But I am encouraged by what you ladies have said and it's easier to cope with. Next week is my week off... let's see what this brings!!!
This is such a lovely group. Thank you for welcoming me and hello to my fellow newbies too!! We all in it together!!!
Sending lots outs of love and hugs...did someone mention fish and chips?!😂Oh I want some now!!! Xxx
Oh dear, ive been a bit cheeky, lets see if Withasmile notices? Wonder what she will say xxx
Hi Kay, buddy.
My temp is currently ok, technically, I have a personal norm which is lower than the accepted norm, this week it has been at the accepted norm, and thats when I feel unwell..., I did ring the nurses to check my blood results which were all ok and passed by the doctors for me to have treatment tonorrow.....my guess is that Ive got a virus......well am resting up now.
was lying here, casually considering Withasmiles suggestion of changing my avatar to a purple bob, but you know what? I like her horse's smile even etter...so I might borrow that, ill have to see.
Withasmile you enjoy your day out
I have walked 6 miles with dog then went to lunch with my husbands tia chi club £3 for 3 courses soup carvery desert and my neighbour paid so cost us nothing very nice
Moijan I hope your temperature is coming down and you are feeling a little better
i hope Helen 2nd dose went ok and she is now alongside me on her week off
i hope all others are managing ok please let us know how you are all getting on with the ERIBULIN
cyber hugs to all
Hi there everyone,
thanks Withasmile x
hope you get treated to lunch...seaside always makes me want fish and chips!
hi Moijan, Marnster, Kay, Nicky08
lovely supportive messages, thank you all xx
I was a bit shocked but I've got my head round it now. Very aware of clots with 2ndaries but have no symptoms at all and I'm feeling so well. I was stacking hay before I left for the hospital!
Fragmin, high dose for the first month then maintenence dose...onc nurse says I'll probably stay on it.
I'm off to the seaside today. I just felt like seeing the ocean and having a walk in the rain, and hopefully get treated to lunch 😉
Kay and Helen I hope your rest week goes ok, you must be relieved not to be at the hospital today?
Moijan keep that temp in check, Marnster and Nicky08 look after yourselves...in fact everyone look after themselves really really well!
What a shock but thank goodness it/they got picked up and you got immediate treatment. I had to have heparin injections after I had a mini stroke (TIA) back in 2013 - not necessarily caused by chemo but probably the atrial fibrillation I had at the time. I got fed up giving myself daily injections so asked to be put on one of the newer tablet form anti coagulants ie NOT warfarin which has too many blood tests for my liking! However, as Moijan has said, it seems to be down to your oncologist/cardiologist as to how long you may be on the blood thinners for. I have just been taken off mine for the first time in 4 years as Kadcyla is hammering my platelets so I don't need my blood to be any thinner at the moment!
Good luck to all spongebobs with your treatment.
i am sorry about your news but hope you are feeling s little better now you are home
I agree I had a blood clot the other year in my lung caused by tomoxifen /and cancer I was swimming 20 lengths of our local pool walking 6 miles a day was only s little breathless if I walked with my daughter and talked at the same time I injected for 6 months and it is easier doing it yourself rather than waiting for the jab by the nurse
i hope all goes well take it steady
Oh gosh Withasmile, that must've been quite a shock! Had you had any symptoms to indicate it?
Just after I was diagnosed with secondaries in my lungs last year I flew to Hong Kong to visit my brother. I was in a lot of pain for a couple of days there where every deep intake of breath was accompanied by a sharp pain in the ribs. I figured it was related to the lung mets. When I got back from Hong Kong and mentioned it to my oncologist she said the pain I was describing sounded like I'd had a blood clot in my lungs, most likely caused a deep vein thrombosis from flying. Fortunately the clot just went away by itself, but I am taking precautions when flying now, particularly for any long haul flights. It was a bit scary.
Hope your needles are OK to administer and you're feeling better soon.
well, some days are more surprising than others!
My CT scan was going very smoothly when the radiologist came back into the room to say he'd just checked the scan to make sure it was clear. . .and it showed I had a very large blood clot in my right lung and some more in my legs.
An oncology nurse was summoned to escort me to the ward to have a clot-busting jab, and I've come home with a pack of ready filled syringes and a sharps bin, so I can inject myself every morning in my tummy. I'd rather do it myself than hang about waiting for the district nurse.
I must admit it wiped the smile off my face- all this hooha with the cancer and I could've dropped dead even sooner!
Going to have a nice calming cuppa now and feel even MORE grateful to be alive