Hope you are all still gettng along with spongebob? Hes working a little less effectively for me now…
the next drug im destined for -after my mri…is quite literally a ‘pain in the bum’
(which im not looking forward to)
Mx
I’m glad I’m not alone on the ‘Mum issues’, spoke to my mum yesterday about my disease progression & move to Eribulin, she told me she ‘Didn’t like to ask’ about my health and care. Not too sure how to respond to that?.
I understand people find it hard, and I’m thankful every time I come into the forum that I am not the only one experiencing these things (though obvs if I could make it go away for everyone I would in a heartbeat).
Thanks lovely ladies xxxx
Well Kay, I hope erib give you at least a year… am just 13 months but I heard I’m very unusual. Talking about pain in the bum - apparently my bloods show it’s suitable … but currently am suffering WITH - a pain in the bum ? Cause so I hope that clears up as no one is going to approach me from behind with a needle until it does!
Best wishes
moijanx
Hello,sorry this is my first time on here. I have metastatic breast cancer, this is the 4th time. I have had it on breast, had chemo and mastectomy and radiation, then went to my ovary, had another op to remove it,then went for 6 yrs until it showed last year in my adrenal gland and now sightings on my liver. I have been on clinical trial it did work for afew months, then oral chem tablets they didnt work, now been put on Eribulin,had day 1 first cycle last week, due in on weds this week then a free week. Is there anyone out there that is on this chemo, it isnt on nhs and my oncologist had to apply for funding for it. Thank you so muchx
Hello Withasmile and Kay, Bousy and all the newer family members.
Just had an MRI this morning and will hear my fate on the 16th. Am hoping to stay on the spongyjuice for a bit longer-but I expect the 'pain in the bum’will be unavoidable at some stage.
I wish you all, at least as much success as I have had on Eribulin… tho my legs are feeling stiff and I have a sore lip this time round! Have just finished cycle 17? Anyway
Do take care of yourselvesxxx
Moijan?
Hello Spongebobbers
Good luck for 16th Moijan. You continue to be my inspiration.
I had my onc appt today. No visible reduction in the liver but no progression either so cycle 9 day 1 tomorrow and I am stable apparently. Next appointment 20th Sept. I will take stable!! Bones are behaving too.
Take care everyone, try and enjoy the sunshine wherever it is!!
Love Helen x
Hello everyone, have bedn away and very poor wifi.
someone asked how many cycles ive had and from my recent gp letter i discovered its 20.
have had fluid retention, and sore legs this cycle…also loads of itching…so im thinking( and this IS a first for me…but im thinking that if my mri shows minimal change, I might ask for a short break…only thing is…I was told more than 6 weeks and I cant go back on it…,not sure if thats still true as initially it was funded on the drugs fund…but even a few weeks might help me feel like a ‘normal’ person…have to chat with him.
by the way, have any of you ever hurt one of your middle toes and wondered if it was broken? I caught mine in a shoe on the floor( Stupid, I know) and wrenched it…saw a walk in centre nurse treatment who examined it about 45 mins later and thought no break or dislocation, but its still swollen two weeks later…,tho it hadnt been hurting until I examined it again this morning…usual care is to strap it to the next toe for support…whch I did.
hey ho
Moijanx
I’ve been on Eribulin for over a year now ! Not sure how long it could keep working for. Anyone been on it for longer than this ?
Scan results on Tuesday so will see if it is still working. I have so few side effects I will be happy to keep going with Eribulin. Swam 25 lengths this week, kayaked for a couple of hours, yoga every day, danced at a party till the early hours and then had to walk home 3 miles in high heels due to no taxis. Resting today as have blisters on the soles of my feet - oops I guess i should be looking after myself better than that! struggling with posting on here though. I found a thread that I had posted early this year but cant find it now !
J:smileyhappy:
Hi Moijan
Sorry to hear your neuropathy is worse . I think mine has remained the same since I stopped Paclitaxel but it might be I’ve just grown to live with it . I am sometimes a bit unstable when on uneven pavements but still manage to do yoga balances which seems weird to me. What is your next option , I think Capecetabine was mentioned to me as next chemo . Fingers crossed for scan result . Don’t want to change just now as have holiday in 2 weeks
Janie x
hey there,
so glad erubilin is working for you kay!
got a question for you ladies! so its 4 an our
time here in boston and mom and i are up. Shes had non stop pain on the sides of her.back since last night, to the point of not being able to sleep as well as shortness of breath. She tried taking a pain reliever, but nothing changed. Any ideas? could this be from the lesions and fluid on her lungs? or could be a side effect of the erubilin? Can’t even begin to tell you how many bad thoughts have crossed her mind that it could be smthg ti do with new cancer or more cancer. Ive tried to say anything to help ease the fear, the pain, but nthg is working…
joelle praying for a cure xoxo
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hey there!
So…I finished my 6th Eribulin cycle on August 22nd. I have been feeling pretty great (apart from the fatigue and all) and each appointment with my dr was more encouraging than the last. I had scans done and got the results yesterday. My dr said the results were mixed…a few lesions in my liver either stayed the same or shrunk minutely, as well as the mets in my spine continued to be stable. All lymphnodes and soft tissue were clear as well, too.
Unfortunately, 1 lesion in my liver more than tripled in size which is what I’ve been feeling, thinking it was my gallbladder. Sort of wish that was what was wrong…It’s a prominent, painful lump at the top of my right rib cage. I am gutted…I now have to have an angiographic radioembolization. I guess they shoot radioactive beads (yttrium 90 / y90) thru an artery to the tumor as long as there is a clear path…and the process for that is just that…a long process. Could take at least a month to get the actual procedure done. Anyone around here ever have anything like that done?
I don’t really know what to feel right now…on the one hand, yay…so much looks good, but…well, yeah…this sucks.
Thanks for taking the time to read this! Hope everyone is feeling well!
xo Lori
Hi ladies!
im back again, I just want you to know i always read your posts and think of you all. just dont always post so im not the whiny daughter! bc i know u guys all are going through this and so much more!
so we r currently waiting in the waiting room for erubilin infusion after seeing the onc. Onc gave us some good news that tumor markers for liver were at 150 in july and now we are at 81! so, seems to be working and we can only hope its doing the same in the lungs and bones.
As for the horrible pain on monday night, it went away on tuesday morning and hasnt came back. thank god. Onc thinks it could be just fatigue from the erubilin.
Starting the 3rd cycle of erubilin today, we have a ct scan for chest and liver on the 25th, praying that all are shrinking!
Mom had the summer off as she is a teacher, she started. bk last week and is hanging in there and doing not too bad. im glad she went bk i think it keeps her happy and fights off fatigue!
praying for all you ladies that your treatments are working and your pains are getting better! lots of hugs
joelle praying for a cure xoxo
Hi Ladies,
had day 8 cancelled as had a virus and was quite unwell…better now. Hope you are all managing well?
take extra care of yourselves.
Much Love, Moijan???
???
Hello everyone, I’m posting in this thread as have been on Cape for 1 year & at my onc appt today have been told it has stopped being effective & my bone marrow isn’t tolerating it well, so have been put onto Eribulin. Just wanted to find out from all you lovelies what side effects you got & the best way to deal with them? I’m due to start treatment in 2 weeks, I think, & will have to have a picc line put in due to awful veins!
Thanks in advance
Angela xx
Hi Angela and all , sorry I haven’t been replying lately but I have been galavanting around the country catching up with friends and generally having a jolly good time! I had my scan results and it showed some more peritoneal fluid, not a lot, but enough to make me feel uncomfortable when I eat?Onc was going to think about next treatment but he’s happy to leave it for now and see as apart from fluid there is no evidence of progression. I did discover that I am still er positive ( just to estrogen ) so it could be a hormone type or Cape next Welcome Angela - I have been on Eribulin for over a year with virtually no side effects! Sometimes I’m less fit going up big hills and stairs , i live in Scotland! I never took the post chemo pills for sickness as I forgot and they said don’t bother if you don’t feel sick. Glad to hear cape was good for you for a year being my probable next option . How is your hair ? Mine is thin and very short, I’m told I look like Annie Lennox !
Thanks janieb & nicky.
Glad to hear that you’ve both not experienced bad side effects. Due to start treatment on th 29th with picc line being put in on 26th. Haven’t been given the option of a portacath, nicky but if the upkeep of a picc line is causing me issues I’ll defo ask. I’m hoping that I don’t lose my hair but I’m not precious about it, lost it all on primary treatment so know what looks good on me to cover my head. My hair is currently just above shoulder length, although quite fine. Just hope it isn’t patchy! Found that I suffered quite badly with less common side effects on primary treatment (loss of finger & toe nails & awful taste changes) so hoping that I don’t suffer too much this time. Hope you keep well on whatever treatments you have next.
Angela x
Hi Janie, like you I’ve been on Eribulin for over a year and few side effects - a bit of peripheral neuropathy, no sickness. It’s been a dream really, as I didn’t bother with cold cap I’m usually in and out within 25 mins on a good vein day!
I have just had a week in hospital, I think I got a bit run down as wasn’t sleeping-got a urine infection AND cellulitis and ended up on the ‘sepsis’ protocol. Was so glad to get home again!
Think I’m starting another cycle later this week- so fingers crossed???
Best wishes
moijan???
Hi Moijan , that’s a shame you had to go in to hospital, hope you are feeling better now . Just off for my chemo today, it takes all day waiting for clinic appointment and then a wait for pharmacy to deliver chemo. then I’m in and out for the chemo in under an hour! Not sure if I’m carrying on with Eribulin , will find out today . Janie xxx