Hi Marnster Yes thank you…same goes for you?
it will be good to update with results etc later this weekxx
Moijan???
Hi Marnster, Withasmile the other erib ladies and Downbutnotout,
hope everyone is ok?
just thought id feed back about my mri, everything has shrunk…but they want me to stay on it!.
i do hope you all have similar good news…I remain fairly symptom free,but a bit tethered to the hospital…have been on it for six months now. I was hoping for a change to an anti oestrogen tablet…to free me up a little, will be waiting to see what your oncs decide if Erib sorts your mets outxxx
i still get a bit ratty in the third week and my fingers are slightly sore but nothing to see…
keep in touchxxx
HAPPY NEW YEAR to everyone???
Moijan???
Hi Withasmile,
Am on Day 8 0f cycle 10 tomorrow…well today now…
Am so pleased that you are getting good results…this drug has been working wonders for me and id hoped to go onto a tablet intead, but my onc has said they want to keep me on it until it stops working!
so it looks like I will be tethered to a drip for quite a while. Mine has been under the drug fund and is still, I suspect; because He said that only up to six weeks maximum break would be allowed… Or I would lose it.
Are you Withasmile, and Marnster…are you too, on it under the drugs fund? Or under general release?
best wishes anyway…am glad to have your companyxx
Moijanxx ???
Hi again!
Got my results from my CT scan and unfortunately my tumours kept growing over the three rounds I was on Eribulin. They are still small, but the lung mets, lymph nodes and chest wall tumour all got a little bit bigger. And some new lesions have appeared in my left lung.
My next step is to go on a clinical trial but it looks like I won’t be able to start until February. So I’m going to do a couple more rounds of Eribulin. While it hasn’t been successful in reducing the tumours, it may have helped slow the growth. And as I haven’t had any major adverse effects from it, it won’t hurt to continue for a few more weeks.
Not the news I’d hoped for, but also not too surprised by it.
Cheers
Hi Withasmile…are you not in the UK, then?
i was given it under the drugs fund, but now I think Nice. Have released it for general use?
or thats what was in the papers!
i know its expensive, tho. What a shame you are needing to pay.
love and hugsxx moijanxx???
Hi Ladies, hope you are ok?Moijanxxx???
Yes, this is my week off! Havejust done myneupogen injection 1.
havent so far had any s/e, just a little tendr where the canula went in.
goodluck with this cycle, isit cycle 3 and any side effects?
hoping for brilliant results for you…it feels strange that there are so few of us…would have thought now there would be more.
Moijanxx???
Hi Withasmile,
i do neupogen on days 3,4,5 and 11.12.13.
are you in the Uk? i ask because you were aying you have to pay( using your insurance) im on the drugs fund…compassionate grounds…by the drug company. But im not allowed a break…if I missed more than six weeks, i lose it for ever apparently…not sure why…but thats what the onc says…I might have one cycle off to visit oz, tho. Not too sure…seems to be working…do I want to risk it becoming resistant yo the erib?
Moijanxx???
Hi there Marnster,
feel a bit envious of you in Oz! Have relatives in Manley…spent a long time in oz in my youth.
sorry tho, that you are having to change drugs…very strange thet Erib works so very well for me, but havent yet heard any other astonishing results…feeling a little guilty…tho have had my own failures on Cape and Vinorelbine etc.
hopefully your move will be void of too much stress…will check in from time to time to see how you are going…keep in touch wont you?
love and hugs, Moijanxx
Sure theremust be some new ladies on Eribulin?
No…week 3!
Have been a little over sensitive, but otherwise ok. If you need a bit of Snow, plenty here…I can shoo all of it over… any novelty has now worn off xxx
no worriesxx. At least you know what week you are!
hugs
Moijanxxx???
Hi Both…
I think your story’s really illustrates why I have been reluctant to go for it!
to have it put in, is easy, I know, but for me…it feels an added trauma and if it ended up really visible in my cleavage…it would add insult to injury as it is already limited…
if it subsequently became unable to have bloods done through it or mri mediums, I would feel pretty fed up that id had it done…however, im not saying never…just not now xx
Marnster, am still confused as to why you are stopping? Sure you explained but couldnt find it xx the photo sadly looks like a traffic sign lol…would love to see your dogs, are you able to download it to your account…
as then I think it can be placed into a post…not sure xx
Moijanxx
forum.breastcancercare.org.uk/t5/media/gallerypage/image-id/3286iCD871BD400CED752
Ooh, thats not worked! Xx
Hi Marnster. My UK buddy Carolyn52 emailed me to say that you are from Australia and Sydney as well. I’m from Sydney and have bone mets. I’m not on chemo, but would like to be your buddy if you like. Maybe we can meet in person. Maybe you can message me, I would like that very much.
Hi all,
Apologies to those who have not been able to access private messaging. I have now enabled that for you and you should be able to see an envelope image in the top right corner of your screens within a few hours.This envelope icon is where you will be able to send and receive personal messages in which to share contact details.
Please email me at moderator@breastcancercare.org.uk if you are still not able to see the envelop icon.
Best wishes,
Bonita
Welcome Helen, xx
the stats indicate 50% either way.
Wish you the very best with this lovely drug…as chemos go, it seems pretty gentle…only takes 10-20 mins to give too!
hugs, Moijanxx
Hi Withasmil,
yes my hair is growing but at varying lengths and thicknesses…quite lng at the edges and back, plus baby hair very thin around the top…wish we knew why/how so we could tackle it!
day 8 today, vein snazzled first attempt. Almost 14 days to give them a rest…
whoop whoop
Moijanx
Ok Nicky…for Bousy.
Bousy …this is a very supportive thread( arent they all? )
here again isa copy of my post on the Eribulin thread. I tend to check here more often
Ok Bousy,
Eribuln has worked very well/wonders for me so far. I started it in June and the bc is now non active! They find it very hard to find the scar tissue on my mri scans. please PM me if you do go on it and we can chat more. Xx
i hope that gives you some optimism if you go on it…I went on it after cape, letro and vinorelbine failed.
Eribulin regime.
three week cycle intravenous, ten minute infusion:
week one. Onc, then. day 1 chemo if bloods ok
week two. Day.8 chemo if bloods ok.
MRI three monthly
i have found it very workable as a chemo…minimal side effects. Was given an antiemetic premed, but this made me panicky…stopped it and now no panic andno nausea/vomiting ever.
I lost my hair…
slight constipation if not drinking enough.
urine infections …have had a few but prob because I wasnt drinking enough…have learned my lesson!
Dry eyes, taking eye drops.
does lower the white count, so I am given filgrastim…to inject myself with
very best wishesxxx
Moijan.???
WITHASMILE…yoo hoo, how is it going?
MARNSTER did you go home and id you ever meet up with the other lady?
HELEN are you now on Erib and how is it going?
hugs
Moijanxx