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Chemo Buddy Needed - Anyone Currently on Eribulin?

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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,
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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 ,
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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?
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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.
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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..

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

oh dear Debbie!

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

xx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

 

hope it it works well for youxx

 

moijan

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Lovely to see you withasmile xx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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?

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hi Clarisse Debbie

 

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

good luck today, hope everything goes smoothly

xx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Yes, please doxx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks for the info, Moijan

 

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

 

Debbie💗

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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💚💚💚

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

 
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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 🍀

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

 

moijan💚💚💚

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Kay, have sent you a pmxx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

 
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi withasmile - thanks for the good wishes. It was a bit of a shock as all other hormones I’ve been in have given me many months or years of stability so I wasn’t expecting this one not to do the same. I have already asked my onc to speak to the Marsden for a second opinion - I don’t need an appointment there at this moment as they have all my up to date notes and recentliver biopsy results so they should be able to say what it best or if there is a trail that would be available although I don’t think there it’s one at the moment. I also have the MRI booked and am emphasising the need to get a move on as I was in the position this time last year and it took ages to get a decision about what treatment was or was not suitable.

When you say that your oncologist has suggested using hormones in combo do you mean with other drugs, chemos or two hormones together? I’m interested as any suggestions or ideas that other ladies oncologists have regarding treatment is always worth knowing.

Nicky xx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hi Kay and Nicky

 

I just popped in to see how you all are, and am sorry to hear your latest news.

 

Kay- good luck with the new regime.

 

Nicky, I will be interested to hear about your next option. Exemestane (indeed none of the oestrogen inhibitors) worked for me individually, but the onc had been talking about using them in combo when the need arose.

 

Love to you all

xx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Nicky 08
I agree only been off it 3 weeks but I feel in myself a lot better but I was in excruciating pain with my liver and that was the same as a year ago when it went there so I knew this time what was wrong
Hope they give you something good can not say I am looking forward to this next round

Kay

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Sorry to hear this Kay.  I was doing well on eribulin but was advised to stop after 8 cycles as the oncologists felt my bone marrow might become infiltrated/compromised.  Anyway that didnt seem to happen once I was on exemestane (sp?) for 3 months.  Unfortunately this does not seem to have stopped my only visible liver met from increasing in size (everything else in the liver including this one had shrunk/disappeared on eribulin) so I'm now playing the waiting game to see what the next option is.  The only thing I would say I have been grateful for those few months off chemo - even if its as kind as eribulin was - I've really noticed a difference with my energy levels etc and the freedom from not going to the hospital so many times.  However it did keep me stable so I guess it is swings and roundabouts!

Nicky xx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi All 

just an update after 12 months on eribulin my liver tumours have now decided to grow back and some on my chest wall .so it has been stopped due this and will now be going on taxatare

 

Wishing all those still on it well and hope it keeps working for you 

 

kay

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks Liz.....

 

Moijanxx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Moijan,

Good luck with your results on Wednesday.

 

Liz x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello Liz, hopefully you are better....?

 

very best of luck for Friday.

 

im getting results of wbmri on wed, and also, my injections in the bum! Am taking a friend along to note down what the onc tells me...and will first present him with a list of questions on my iPad ..in fact I'm thinking of emailing him some q before then, as we don't meet in a room where they can look on the pc.

 

I do hope everyone else is fine? No lingering hangovers etc.

 

love and hugs,

 

Moijanxx

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan,

Happy New Year. Yes I should be having cycle 10 next Friday. See oncologist on Wednesday. I had to miss day 8. of last treatment as I had sickness and diahorrea. Feel a lot better now. Hope you are feeling ok with your treatment 

Take Care,

Liz

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello everyone....hope you all had a good festive season.

 

this thread seems deserted......anyone on treatment next week?

 

hugs,

 

Moijanxx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

wishing everyone the very best Christmas possible, with luck, hope and happiness for 2018.

Love to you all xx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Oh, Bousy, what wonderful news!  You must be feeling great about thatxx

 

Moijan💚💚💚

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks Moijan and hope you are keeping ok. I had a scan on Saturday and have seen oncologist this morning. It’s good news, bones healing, no movement in liver, lungs healing. Start cycle 9 on Friday. Fatigue is not as bad but have a bit of fluid on lungs. 

Still having bloated feeling under right ribs but nothing shown on scan. Put it down to windy bowels!

Have a nice Christmas everyone.

Liz xxxx