Chemo Buddy Needed - Anyone Currently on Eribulin?

[withasmile]

Hi Everyone,

TA DAAA!

I missed you all so I'm back! hahaha 😞

I stopped Eribulin Feb 2017 when the tumours had shrunk within acceptable limits (triple neg lymphoma para-aortic and liver) and have had a fab time chemo free, but the last couple of scans have showed steady regrowth so I'm starting back next week.

My cancer has never followed a conventional path so the break was the right thing for me at that time.

Of course there's 'will-it-wont-it-work-again' worries but we won't know until 3 cycle scan so I'm not thinking that far ahead.

I've followed the threads; its good to see this tolerable drug available to so many more ladies and lovely to find support still shining.

Lotsa love

xx

[Phoebe4]

Hi Helen

Thanks for your message!

yes I was due to start Wednesday but due to an oversight in the paperwork they gave it to me yesterday. Had a good nights sleep which always helps. Thye've given me steroids for a couple of days to make sure I cope.

21 months is a good length of time (at least good in my world!) ; they've told me 12 max, and thats being optimistic, but they are hopeful of a response and of course they never can tell, so we are relaxed and positive about things. 

Sorry to hear you're having to move on, I can understand how you feel. I was doing quite nicely on the capecitibene and then a similar thing happened to me. The uncertainty of what they will offer and what you will have to cope with next is tough and unsettling.

I'll be interested to hear what the next treatment is.

All the best, I'll be thinking of you xx

[helen44]

Hi Phoebe
How are you doing? I see you started eribulin this week, hope it helps you. I am about to start cycle 21, this is likely to be my last cycle as one of the liver tumours has grown slightly. I have a liver biopsy next week & then more scans before they decide a new treatment plan. In a strange way I will miss eribulin!
Good luck x

[Phoebe4]

Thanks liz
......and apologies for the previous typo!
Predictive text can land you in all sorts of trouble!!
X

[Bousy]

Glad to hear you have the go ahead!

Liz x

[Phoebe4]

Hi all 

Relieved to find my bloods have remained stable in this interim phase - I know the cancer has grown in my liver, but fortunately I've kept well with no treatment for the past 4 weeks. Now I've been given the go ahead for my first eribulin on 10th April

I'll be celebrating my son and husband's birthdays with all the family this weekend, so we're all overjoyed I've got the promise of the 3rd line chemo and hopefully many more months/years of quality time ahead!

Beautiful sunny day here!

hope everyone in good spirits

Hugs Phoebe xx

[Phoebe4]

Thanks Nicky and Lizard that's very helpful
Xx

[nicky08]

Hi Phoebe

As has already been said you do not need steroids with this chemo. You will probably be offered them by the chemo nurses at your hospital but you do not need to have them as the side effects are not as extreme as a lot of other chemos, when you do need them, it will be up to you I should think.  I also found I did not need anti sickness tablets (and I'm the worst nausea sufferer!) so it is a matter of choice.  Some ladies might have steroids but for me I really didn't need the added SEs that steroids give you, in this case 2 weeks out of three.

The infusion is very quick, about 5 mins, but my team built up to that and gave it to me a bit slower for the first couple of cycles and then just let it free drain (it comes in an IV bag so goes into a vein/cannula/port).  The time you spend in hospital is down to the saline before and after and in my case the waiting around for the nurses to be free as at times it was quite a busy ward.  However they are all so lovely and dealing with all patients so I didn't mind, just brought enough reading things to keep me occupied.

Nicky x

[Bousy]

Hi Phoebe, No you don’t take steroids before the infusion. I have a steroid anti sicknesses infusion before the Eribulin, which takes a couple of minutes, then saline is used and the Eribulin is syringed into the line. After a few more minutes of saline,I’m all finished.

Hope this helps. I have my next day 1 on 13th April.

Good luck, you will be fine.

Liz x

[Phoebe4]

Hi
I'm hoping to start eribulin next Tuesday. Can anyone tell me if you have to take steroids before the infusion?
Thanks
Px

[Bousy]

Hi again Phoebe,

Eribulin is one of the quicker chemos to have. It normally takes about 40 mins. You have it on day 1 and day 8, then a 2 week break. I manage to go and do things and do all my shopping, housework etc , with my husband. When you feel tired just rest, then usually I can carry on! I get peripheral neuropathy, numb fingers and toes, but it’s not bad.

Look forward to speaking again on this thread,

Good luck for the 10 th. 

Liz x

[Phoebe4]

Hi Clarrise and all the other 'eribulin' ladies

I hope you are all still doing well on Eribulin?

I have had taxel and capecitebene, which has now stopped working. I am hoping to start eribulin on 10th April, if all my blood tests are ok

Phoebe xx

[Moijan]

Our hospital doesn’t let cold caps re Eribulin...as no evidence they make a differencex

[teri]

HI

has any body done chemo caps while on Halavan ?My daughter has just started and is using them , just wanted any feedback good or bad

thank you\teri

[Moijan]

Well, when I was on halaven(Eribulin) it really did wonders for me.....I had 16 months of it working. So it’s a good drug and very few side effects....10 minutes for infusion too.

best of luck to you daughter with itxx

Moijanxx

[teri]

Hi Moijan, my daughters are tiny and widespread also , nut the specialist at MD Anderson says the qualifies , but we had already started he Halaven her is St Louis so not sure what we are going to do ,Her oncologist from MD Anderson is out of the country but we are waiting to here back from her.Hope and pray that miracles happen for everyone you all deserve this,

[Moijan]

Teri, what is a Y90?please

Have just just looked it up...as my liver mets are tiny widespread seeds...it would be a bit impossible to use y90

Moijan

[teri]

HI Bousy,have you ever tried any clinical trials?Have you tried intragative along with conventional?MY daughter has already been in 1 trial and had great success,so she will definitaly do it again ,

[Bousy]

Hi Teri,

I have hormonal bc. I have mets in my spine, pelvis and right shoulder, my lungs and did have a 4 cm tumour in my liver which shrank and no longer shows on ct scans. There are only a few more chemos I can try when this stops working so Eribulin has got to keep working. It’s positive thinking!

Hope your daughter is ok with her first cycle.

Liz x

[teri]

HI Bousy,thank you also for your quick response.I am glad that Halavan is working for you and will pray for next scans show success.Can I ask what type of MBC do you have ,and why do you feel you are running out of options?

[teri]

thank you for your response.The chemo went ok .WE line st St Louis MO and do partial treatment here and some at MDA in Houston.In February at MDA when the liver mets showed up they were goiing to see if she qualified for the Y90 procedure .But in the mean time we started to go ahead with the Halavan. Well right when she was starting the chemo MDA called ad said she did qualify and they wanted her there Friday. so we went back and forth but we decided to go ahead with the Halavan.I hope ot goes well for her she needs a break.She is only 31 .Have you been offered the Y90 for your liver mets?Well we are going to hope and pray this chemo works in knocking them out and then she will start on Ibrance and Falsodex,So what is the plan for you now? are you ER/PR + Her2-? thank you

[Moijan]

Hello, sorry I’ve not posted for a while...those of you who have recently joined..welcomexx this chemo is a real joy and so much nicer than many....just ten minutes in the chair and minimal side effects...so I. Hope. you have a easy ride on itxxx

love Moijanxx

[Bousy]

Hi Teri and Helen 44,

I have just been to see oncologist to get results of CT scan. Bones are still healing and nothing showing on liver. I’ve been on Eribulin for 9 months and starting cycle 13 on Friday. I hope results are as good at next scan. 

Sorry it’s stopped working for you Helen, I only managed 2 cycles of Docataxel and that was enough. Hope they find something else for you. I know there aren’t many options left for me after this.

Teri this is the best chemo I have had. My hair thinned at first but now have a good head of hair, Get a lot of fatigue but no sickness. Good luck to your daughter.

Liz x

[helen44]

Hi Teri
Good luck to your daughter with eribulin today. It's very quick, with saline flushes before and after I can be done in 50 mins. I am in the middle of cycle 19 and think eribulin is a breeze compared to docetaxel. Unfortunately it looks like it has stopped working for me as liver mets show progression but I have had a year on it.
My hair thinned just after cycle 1 but didn't fall out completely. I lose my taste the day after chemo but it comes back on the day after that. I have suffered with peripheral neuropathy in the last couple of months however in all I would say I found it tolerable. Everyone is different though!
All the best to your daughter.
Helen x
Hello to fellow spongebobbers - hope you're all ok.

[teri]

HI , so herd your thought Erublin was not to bad ,,  do you still feel that way? MY daughter starts tomorrow and very scared to do chemo again ,  any positive words..

[teri]

Hi , my daughter is starting Halavan tomorrow, hrs will last 10 miutes so they say ,  so side effects are not to bad?? She has read good and bad stuff on the internet but hopefully most of you had found it easier than other . 

thank you 

[withasmile]

oh dear Debbie!

Chemo does seem to make its opinion known at the most embarrassing times

xx

[Clarisse]

Hi everyone 

i meant to post last week but got busy and didn't get it done. My chemo treatment last week was easy but later that night was not.  My husband and I and some friends went out to eat.  Great meal, good conversation.  But after two bites of dessert, my stomach was not happy.  I looked at my husband and told him that we needed to leave, NOW!!  As we started to make our way out, so did the contents of my stomach.  I was so embarrassed.

Everyone with us understood the situation.  

Since then, I have had a little nausea in the mornings, but it is getting better.  My hair is coming out by the handful.  It started a couple days ago.  Oh well, I had the same thing happen a couple years ago while on Taxol. It's only hair.  It will take less time now to get ready for work and who cares if it rains!!  I'm having it cut very short this afternoon.  Will make it easier for t.he rest of it to fall,out.  

No treatment today, just bloodwork.  Another easy day!  

Talk to you again soon.

Debbie

[withasmile]

hi Phillipa

I went straight from Capecitebine to Eribulin and felt just the same as you- in one word "phew"!!

Good luck with your treatment, let us know how you get on

xx

[Moijan]

Hi Phillips, yes one of the few chemos I look fondly back on.....

hope it it works well for youxx

moijan

[philippa]

I was just reading everyone's  positive remarks about eribulin. I swapped from Capecitebine & feel so much better now on eribulin....on 6th cycle now. Major hair thinning after the 1st cycle, but apart from that feet, hands are amazing now & energy levels are so much better than before. So encouraging to hear some people are on for many many cycles. Will know if it's doing the job in a few weeks time. But I feel like a different person so that's good. Good luck to everyone else on eribulin too.

Philippa x

[helen44]

Hi Debbie
Hope you're getting on ok with eribulin, I am about to start cycle 18 next week.
My hair thinned just after cycle 1. After complete hair loss with docetaxol I was really pleased that it didn't completely fall out. It has grown over the last year! There doesn't seem to be a pattern on hair loss/thinning - everyone has a different experience.
I find eribulin tolerable and hope you do.
All the best with your treatment.
Helen x

[Moijan]

Hi, there, you know what, I think it was quite quickly....but I did stop washing it very often...like now actually! And I had got a couple of wigs from last time, but I went up and ordered one fairly early, I also wore those little headscarf’s that are ready made, eg with elastic at the back. I keep meaning to mention ‘Heathers hair’ on here..they are a charity who make headbands with real hair on, so you can wear them under a cap or scarf and you have a fringe,* or even an all round short bob.*

it is free, but as it’s a charity, they like small donation.xx I have two of those myself.*

Moijanxx

[Moijan]

Lovely to see you withasmile xx

[Clarisse]

Had my first treatment yesterday. Was amazed at length of treatment-only 5 minutes!!  Tolerated it well, haven't had any side effects yet.  Have next treatment on Friday next week.  Will see how that one goes.  To those who have lost hair: when did the hair loss start?

[withasmile]

hi Clarisse Debbie

after your other chemos I think you'll LOVE Eribulin!

good luck today, hope everything goes smoothly

xx

[withasmile]

Nicky,

thanks for the update, its so annoying when things take so long.

My onco was muttering about trying hormone drugs together in combo to try and prevent a recurrence but we didn't get very far with discussions.

I'll keep popping back to hera your updates, you're in my thoughts

xx

[Moijan]

Yes, please doxx

[Clarisse]

Thanks for the info, Moijan

I will let you know how everything is going after my treatment on Friday.

Debbie💗

[Moijan]

Hi Clarice, after taxol you should find Eribulin a doddle.xx

have a scan back through the thread to see what side effects you might get...but I did lose my hair, it came back slowly whilst on the chemo. Most of us found the erib pretty tolerable and it worked for about 15 months for me. The drip is about 10 minutes and I drove to and from the hospital, about half an hour.

was getting no side effects other than my hair really. I did get cellulitis, but have lymphoedema so that was a given.

welcome to the thread xx

Moijan💚💚💚

[Clarisse]

Hi everyone

I am starting Eribulun next week. I'm not sure what to expect.  This will be my 3rd chemo drug.  Started with Taxol for 9 months and lost hair.  I got good results, but neuropathy was getting bad. Next was Xeloda, hair came back. I was on this for 9 months.  Got good results until last scan.

Any advice about Eribulun?   WillI lose my hair with this one?

Debbie

[Moijan]

Kay,

good luck with with your mri results...I normally get asked to start a new treatment the day after. Not sure about getting erib out of your system, eg how long.

mx

[pussy]

Hi Helen 44

yes I Had 16 but the scan I had on the 9 th of jan showed progression I presume I will have to wait while eribulin gets out my system I have not heard from the chemo specialist nurse practitioners about going getting the information about Taxotere but I have just received appointment for onc for mid March, I am waiting for bone scan which I will have next week so when I ring my breast care nurse to tell her I have had it I will mention not hearing from the chemo nurses and double check what I presume is right because I do not recall hearing onc saying anything other than I would hear from the nurses 

good luck with your treatment I hope it carries on working for you 

kay 🍀

[Moijan]

Good luck to you guys....and keep in touchxx

moijan💚💚💚

[helen44]

Hi lovely ladies,
Sorry to hear that eribulin has stopped working for you Kay & I hope that you get started on a new treatment quickly. We were on same cycle I think, just started 17 today. The neuropathy isn't great but I am pretty ok apart from that. Should be time for another scan soon -what joy!!
Big (((((cyber))))) hugs to you all xx

[Moijan]

Kay, have sent you a pmxx

[pussy]

Hi Withasmile

nice to hear from you none of the hormones worked for me either but when I was on exemestanen it was given with everolomus of which I could not have has I had had to many other treatments can not remember now if it was only 1 chemo and 1 hormone but you can look it up plus they may have changed  the combo in last 2/3 years 

take care 

Kay

[Moijan]

hi Nicky, Kay and withasmile, 

i too would be really interested to hear WIthasmile about any suggestions you might have about combos, thank you.

Moijanx