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Chemo Buddy Needed - Anyone Currently on Eribulin?

bonariensis
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan
Hope your scan results are good. Hugs while you wait, Bon xx

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Kay, thank you yes.

The neuropathy concerns me too - not sure about wether will stay on Eribulin but will depend on my MRI results - having it next week.

Best wishes
Mx
helen44
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Briliant news Liz, so pleased that it's working well for you, long may it continue.

 

Hope you are feeling better now Moijan after your hospital stay - you're staying on eribulin? Are you getting more neuropathy these days? I am on Day 8 of cycle 11 tomorrow and the neuropathy is the side effect which bothers me the most - left index finger and left toes in particular.

 

Sending big ((((((((((cyber))))))))))) hugs and hope all Spongebobbers are managing ok.

Love Helen x

 

 

 

 

Rose47
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Liz,

 

Thats such wonderful news, I bet you are feeling pretty good at the minute after those results.

 

Hopefully you are going to allow yourself a celebration of some kind.

 

Big hug

Maria x

Bousy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi everyone,

 

I had a CT scan last week and have just been to see oncologist for results. For once it’s good news! The tumour on my liver has shrunk from 4 cm to 1 cm, tumours on lungs nearly gone and bones healing. This is first good news I’ve had for over a year. Hope it works for a long time. 

 

Hope everyone else is ok.

 

Hugs,

Liz xx

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Yes Carolyn

 

must say I'm surprised that Eribulin was offered before paclitaxel - seems a little back to front?

hopefully it will help tho

moijan

Carolyn52
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Janieb

Enjoy your absailing then !! Ha ha ..the only thing to be a little bit careful with is hair thinning ..avoid harsh hair colouring/ hair straightners if u notice the hairbrush looking a bit clogged up !!
Under going through treatment ...hormone therapy ..you will see oodles of threads on letrozole which might help ..but most ladies don't have much problem especially the ones that have done the big guns chemo first !!!!!
Xxx
janieb
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

That's good news , something to look forward to if it works . I have continued to do most of those activities anyway so it looks like I'll have to take up abseiling!
Xx🤗
Carolyn52
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello janieb

Just reading your post ...letrozole is a hormone pills taken daily ..it will be an absolute doddle compared to chemo you have been having.
You can do everything ....abseiling, swimming , holidays etc ...
Hugs xxx
janieb
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Still on Eribulin for the time being but it's not working that well. Next option is Letrozole . Anyone know how does that compare to Eribulin with side effects . I'm assuming it won't be so many trips to Onc - I might be able to go abroad more easily ! Hope you are all doing ok 😘
angelah61
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi all.

Just to keep you all up to date, I'm not now going to be having Eribulin! My Onc got a bit carried away & didn't remember that its not available for 2nd line treatment only 3rd & onward. Now have to have Paclitaxel instead but as they can't give it to me at my local hospital I have to drive 1 hour to a cancer center 30 miles away twice a week! Not a happy bunny 😞

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Good luck Janie
Am booked for day 1 later today!
Let me know your future plans
Mx
janieb
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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💚💚💚
angelah61
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

nicky08
Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Angela and welcome to the eribulin thread. There's lots of advice on here if you have the time to read back over the previous posts but I can let you how I have found it over the past 7-8 cycles.

My hair thinned dramatically between dose 1 and 2 (days 1 and 😎 despite using the cold cap. However it hasn't fallen out any more since then and has grown in length and thickness, albeit slowly, since then. My eyelashes and eyebrows have completely gone, after cycle 6, which I hate more than no/little hair as you look so washed out. False eyelashes and avoid eyebrow pencil are my new friends! I started off on steroids as I was prescribed them but took a smaller dose gradually and stopped them altogether after cycle 2, same with anti sickness. I've not had any nausea, or only mild, until this last dose this week but I'm sure it's psychosomatic rather than anything to do with the chemo. I've had a bit of mild peripheral neuropathy but it's not come to much, just a mild lack of feeling in some of my finger tips. I have suffered with a low wbc (and neuts) so have had the GCSF injections - currently having 3 on days 12,13,14 of the cycle, or thereabouts as the nadir (low blood cell point is day 15). Other than that not especially fatigued, just a little bit the day after the chemo, but not every cycle. Hope that helps but there are other ladies on here who have been on this for much longer than me who can add their experiences. By the way have you considered a portacath instead of a PICC line? I have had one fitted for 3-4 years now as I was previously on Docetaxel and it makes such a difference to hunt-the-vein but also has none of the extra care needed for a PICC line where it needs to be flushed through every week. The power ports also allow the contrast dye used in CT scans to be injected, as long as you have the right needle used, and you can have bloods taken from them - but I guess that's similar to a PICC line.

Good luck with eribulin, I'm coming off it after the end of this cycle as my onc feels I should come off chemo's for a while and go onto a hormonal to help my bone marrow, in case it gets compromised,  as I have been on various treatments for mets for over 9 years now - not quite a gruesome as it sounds as much of that has been stable periods on hormonal treatments.

Nicky x

janieb
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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 !
angelah61
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

Marnster
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thank you Lori. There definitely will be more adventures. I'm not going to let it get in the way of doing the things I want to do. As soon as I get these clots in my lungs under control so I no longer feel breathless all the time, I'll be planning my next holiday. It's important to have something to look forward to. I'm back to weekly chemo now but that doesn't mean I can't go away for a few days between weekly treatments. I'll make it work. 

lori_travels
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Marnster! Wow! I just read your blog about your adventure to Pumpkin Island! What an amazing experience! I am so glad you were able to go despite your treatment schedule!! I'm sorry your vision wasn't what you hoped it would be! I have to say, it honestly fills my heart with joy knowing you were able to choose you, and not this stupid disease, and live your life on your terms!! So happy for you! I hope you are feeling well! I look forward to reading about your next adventure! xx Lori

lori_travels
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Kay!
Thanks for your response. Unfortunately, I don't have my consultation until September 22nd. The mapping will be 2 weeks later then the actual procedure 2 weeks after that, so...it won't be until the end of October. Ugh. In the mean time, my onc is taking me off the Eribulin and putting me on Ibrance. I'm pretty nervous about both, to be honest. Thanks for your kind words!! Hope you are feeling well!

xx
Lori
pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Marnster 

i hope you are here next year to go as well I hope your double vision is settling down 

you are really an inspiration with your get up and go I admire you for your mind set and attitude to this horrible disease and I truly hope you carry on fighting it for a few more years

have they looked into immunotherapy for you or is it available  for the likes of us I know with lung they have  had success and melanoma cancers 

 

keep that spirit flying 

 

kay

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan

glad to see your back not very nice when your not well but always seems worse when on chemo 

 

hope everyone else else doing ok with treatment 

 

kay

 

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi moijan

glad to see you back not very nice when your ill at the best of times but seems worse when on chemo 

 

kay

hope every ine doing ok with treatment 

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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💚💚💚

 

🐭🐹🐹

Marnster
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello all!

 

am back in the board to let you know I'm back from my little holiday and have finished my whole brain radiotherapy. Just wanted to share a pic from my holiday to make you jealous. 

IMG_6114.JPG

 

You can also read about my latest adventure on my blog. 

 

https://lifeistooshorttoskipdessert.com/2017/09/09/my-not-bucket-list/

 

Cheers

 

Marnster

 

 

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Lori travels 

yes you are right it is done with angiogram and you may have to stay in over night 

I have never had it not yet anyway but let's hope it works for you are you having it whilst on the eribulin?

they are only an hair with the beads but you will be checked first by the angio team that you are suitable for it 

let's hope next time we hear from you it has done the job it is good to know there is other options 

 

good luck with it all I wish you well

 

kay

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Joelle

thanks for the update glad your mom got sorted it is frightening for all of us and our families but we just all have to try and get on with it best we can there is no other option I am afraid

glad she had gone back to work if she feels that is right for her i on the other hand decided for me it was best to retire as I worked for NHS in cancer clinic and decided it was me time and I was not giving what time I had left to them we are all different the way the treatment works for us and our out looks 

i hope things are good for your mom on eribulin 

I had to wait 9 months for my first scan on eribulin because there was a back log if people and though I did see onc and the ct images they still have not got the report so I am waiting for that to be posted to me when it is done 

 

Take care

kay

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Joelle

thanks for the update glad your mom got sorted it is frightening for all of us and our families but we just all have to try and get on with it best we can there is no other option I am afraid

gkad she had gone back to work if she feels that is right for her i on the other hand decided for me it was best to retire as I worked for NHS in cancer clinic and decided it was me time and I was not giving what time I had left to them we are all different the way the treatment works for us and our out looks 

i hope things are good for your mom on eribulin 

I had to wait 9 months for my first scan on eribulin because there was a back log if people and though I did see onc and the ct images they still have not got the report so I am waiting for that to be posted to me when it is done 

 

Take care

kay

joellek
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

lori_travels
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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 

 

 

 

 

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi joellek

if things are changing for you mam please get back in touch with oncologist or her nurse if she is still in pain and pain relief not working take her to A&E  at worst they would admit her to oncology ward which will sort out pain relievers 

 

please post when when you have spoken to someone and let us know how you and mam got on

 

kay 

 

joellek
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

 
joellek
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
nicky08
Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hey, great news Kay, hooray!! Always a huge relief when you get results that show your treatment is working. Makes all of the hospital visits and side effects worth while.

Hi to all other spongebobs, hope it is treating you kindly and working its magic.

Nicky xx

Marnster
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Great news Kay! So happy for you. So good that it is working for you. Long may it continue! 

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan and everyone 

got my ct results today my tumours have shrunk in chest which are the ones I could feel so was aware they had flattened and my liver tumour has shrunk by half so came out very happy and will be seen in Feb 2018 but will stay on eribulin as planned previously if  proven to work 

 

hope everyone is as good has they can be 

 

kay

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Next option is the pain in the bum. ...fulvestrant, ......if that doesnt work then he mentioned more taxotere...not my favoured option xxx

 

however, not changing just yet cc

janieb
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Janieb,

 

i was so excited to hear you have been on Eribulin for a year!  i have been on it for about 14/12 now ans was beginning to worry a little,because at my hospital, apparently, im a bit unusual. To have been on it so long......i have had an increase in my peripheral neuropathy( pn) on it, but not a lot of other side ffects. I am concerned

about the added changes to sensation of my legs and fingertips.....my feet have been numbner since an early brush with taxotere in 2001...Im afraid i begrudge every permanent negative change due to. Drugs.....

 

eribulin is working less well lately, so my path is slowly wending towards the 'pain in the bum' drug.......and my guess is that i will  change from being a pleasant patient -to a complainer......when that happens.

 

best wishes Moijan

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi janieb

well you go girl you certainly like living I am very active not partying past that now but love my swimming walking my dogs  riding my bike I generally keep myself busy and active but after day 8 on every occasion it knocks me off my feet every muscle aches and tired I have never experienced it has bad as this unless I have forgotten what others was like I have eribulin on a Wednesday and by the Saturday I can hardly walk my muscles  hurt so much this only happens 3 days  after the day 8 which was yesterday for me today they still ache I have managed a walk across the fields about 1 mile if that but knees hurt as well as my muscles tomorrow will be a bit easier and that will carry on improving through my week off 

i am use to it now so know not to arrange anything on that particular weekend 

 

kay

janieb
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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 !

JSmiley Happy

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Janieb

the longest on here is Moijan think 20 cycles and hers is growing again though slowly if you read back you will find what she says 

i on the other hand will be on my 10th cycle next week not got my first scan results yet  hopefully 4 th sept I will get them if report is back from were ever they are sent these  days unless it is still in house 

 

kay

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Good on you Marnster and make sure have a good time 

Glad you feel ok look forward to the pictures

kay

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Good on you Marnster and make sure have a good time 

kay

janieb
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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 ?
Marnster
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thank you Kay. Feeling ok after today's first WBRT session. 

 

Have an an island paradise holiday scheduled for weekend after next and am not going to let anything get in the way of that so expect some more photos to make you all jealous soon!

 

Am also thinking about my next holiday after that!

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Marnster 

i am sorry to hear your news will be thinking of you this is what we all dread well it is for me 

I wish you the best and hope it works for you 

you have been an inspiration to most on here with your  holidays and swimming etc and not letting it stop your life you have taken it by the horns and shown it that it. Will have a fight on its hands if it messes with you 

take care 

and I wish you lots of luck with the rads and look forwarding to hearing how it is going for you 

 

kay 

 

 

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Marnster......that is rotten news, im so sorry. This bc is a real bggr, isnt it? Try as we might, it sometimes outwits usxx however, wbr might turn ut to be more effective...fingers crossed for you and lots of lovexx

Moijanxx

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Nicky, thank you for explainng about the blood thinners....I had a dvt on cape and my haematologist is of the opinion I should stay on them, but your case is completely different and an example of the fact we must all keep in mind that individual circumstances are likely to mean different treatment plans. Interestingly, tho the haematologist, whom I saw today is coming round to letting me go onto tablets...we had a long chat..,there are still NO Antidotes to the. New tablets.....any of them, but apparently they think it wont be long.

 

if i ask her, she would change me, but not to the drug you were on...one of the others is her preference as she said it would be easier to give it bd and work out a maintenance dose...so I will think more about it.

 

i lost hair in a friar tuck way..I also lost my eyelashes and eyebrows....interestingly my hair IS RETURNING. And my eyebrows and lashes are, though a bt more slowly.

 

If you stop the cold cap it will likely thin out.

 

the new hair is that rubbishy thin baby hair just now...but the thickness is slowly increasing and my hairdresser reports no bald patches....so watch this space. I cover it with wigs, so that doesnt help the quality much.

 

Thank you for your kind wishes xx