Member
Posts: 8
Registered: ‎21-08-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Great that worked!! Lol!
Went were it was supposed to 😀
I have just started eribulin, day 8 today me first cycle.
I have Inflammatory TNBC with skin mets and other breast secondary.
Thought I'd like to join and see how other people are getting on with it!
Already had gem /carbo and cape this year neither worked so here I am.
Member
Posts: 8
Registered: ‎21-08-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Evening ladies
Member
Posts: 13
Registered: ‎20-07-2017

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Mojan,

 

I have been on eribulin since june, just had my first scan results cple weeks ago, the tumour in liver, adrenal gland and nodes have all dramatically reduced, was very shocked and pleased. My oncologist has given me alittle break from it till Jan 10th.very pleased about that, I have also beCen drinking japenese tea as well, so dont know if this might have contributed,dont suppose i will ever know.  How are you doing, i know you said they were prob taking you off eribulin, are you on another chemo now,this chemo is very kind to me,i only really suffer with fatigue.  Hope you are doin well,lots love, Carol Pope xx

 

Community Champion
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Registered: ‎04-02-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Can you try a chiropractor?

Member
Posts: 205
Registered: ‎01-05-2012

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

[ Edited ]

Hi Carolyn

glad things seem to have stayed the same for you let's hope MRI gives good results you have been lucky with the  letrozole and let's hope it continues 

I am ok just just my leg so saw GP all he wanted to know was if I had indigestion told him I am on lansoprazole then he asked what was the worse scenario so I told him going to the bone so he said he could do 2 things have X-ray or do urgent referral back to onc (which I could do my self ) so in the end I just said do X-ray if you think it will show tendon or muscle up he then decided to do both he sent the X-ray off electronically gave me phone number to ring radiology department came home rang no one there so left message waited 4 hours rang again still no one there waited another hour rang spoke to someone asked if I could have following day before chemo they said would get back to me which they did but I can not have X-ray till next Thursday 14th bet I do not get results till after xmas 

so I rang onc secretary left message to ring me. Luckily I know her well so I can alert her to look out for X-ray and then she can say to come in and see onc or stay with appointment in Feb I know I could be very wrong but I think I have over done it and pain  killers not working so wanted something different that's why I went to Gp but as usual they are passing the book back to onc 

 

kay

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?


Carolyn apparently nice reconsidered xx

Community Champion
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Registered: ‎26-10-2015

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello kay...can't remember where I saw the link now !!
Yes I got my results Wednesday. .bones stable , adrenal glands recovering ( this was a shock as they have never been mentioned before ) and a mri scan on liver in 3 months as the ct scan didn't give a clear picture ..oncologist thought that maybe contrast didn't go through properly for scan ...
So I'm continuing on letrozole. .not a bad result so just going to focus on Xmas now !!
Hope u doing OK.
Member
Posts: 205
Registered: ‎01-05-2012

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Carolyn 

I thought they only allowed it this year I got for funding  for it just before they opened it up as in 2013 they stopped it due to cost and did not give us as long enough time to live at that price can you send the link so I can read it please

have you got your results yet ?

 

kay

Community Champion
Posts: 8,325
Registered: ‎26-10-2015

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Just reading online that NICE have rejected use of this drug to ladies that haven't already had two failed chemo treatments ...so it's going to limit new ladies becoming sponge bobs here !!
Apparently they can't justify the high cost against standard cape pills which are cheaper. ..
Xx
Community Champion
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Glad things are stable Helen xx

 

M💚

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Posts: 344
Registered: ‎18-01-2013

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

So pleased that you are doing well Withasmile.

I started cycle 14 last week as the eribulin is keeping me stable in liver & bones. The 2.7cm tumour is still 2.7cm in liver but at least it hasn't grown or any new mets appeared- for that I am grateful. The neuropathy in fingers and toes has eased off a bit as well so happy (!!!) days....

Take care Spongebobbers, love Helen x
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Let us know Bousy....

 

love and best wishes, Moijanxx

Member
Posts: 69
Registered: ‎27-10-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks Moijan, hopefully I will find out what it is.

 

Liz x

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

[ Edited ]

Hi Bousy, 

 

Your bowel perforated on Doxetaxel? Oh how very scary for you xx

 

well, as you know, we aren't allowed, nor qualified to give medical advice on here...however, I can share the things that have happened to me...I had a huge gallstone, which I wouldn't let them remove at the time- that gave me severe unreleivable pain behind the right ribs....it came after eating too much fatty food..and that pain can be felt in the back also..        

 

After I'd had my gallbladder removed, and sometimes now, I had a kind of similar pain, which was much milder and seemed to go when a rumble of wind occurred.. I got examined and a registrar told me that the bowel can cause a similar pain if it's a bit overdue for being emptied!

 

i do occasionally get mild pain on the right side further down, which I've been puzzled about but. I suspect tight belts may have contributed to this.  I have also had hyperchondritis - a rib pain which is associated with intra-muscular pain......

 

mri scans are brilliant at picking up some of these things, but often there's no proof exactly what it is.

in your place I'd be making sure I ate and drank appropriately and I'd likely monitor my temperature for a while....I think I'd get an appointment with my gp......or at least chat to a trained pharmacist..they don't diagnose but I often chat stuff over with them and find them helpful.......bounced my situ around with one this morning and am going to experiment  with a very mild antacid to see if it helps...but if things worsen, I'll call my gp.

 

Moijan😎

Member
Posts: 69
Registered: ‎27-10-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan,

Hope you are ok. 

It’s funny you should say about pain under ribs. I keep getting it at right hand side under my rib and at the back . I’ve just finished cycle 7 and see onc on Wednesday. The pain under rib feels more like it’s swollen. Do you get swelling or anything when liver mets are shrinking?

I’m worried about bowel, that goes near the ribs, I think. Mine perforated with docataxel so worried. 

I had this a bit before last scan in September but nothing showed up. Due another scan next month.

Liz x

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

[ Edited ]

Actually, ladies, I have been waking up with left sided, under the ribs pain, which on waking makes it hard to move around. But does improve during the day, but I am puzzled. Googling comes up with loads of stuff, spleen, constipation, reflux and on and on.

 

must admit..initially I thought of spleen because of where it is...but seems lots of people have had it after a course of antibiotics! So am keeping an open mind for the present and hoping it will go away!  Just thought I'd share this as lots of newer bc travellers often say how we seem calm etc.. but we too, go though times when we don't know what is happening.

 

 I'll also comment that gp's are inaccessible except In emergency and

i don't think it's an a&e scenario (yet ) on the symptoms...I'm certain it isn't bc either - antibiotics are in themselves anti inflammatory..but can irritate the bowel and I suspect can encourage muscles and tendons to be a bit slack whist we take them...and of course gut bacteria gets a beating...so I'm going to drink loads of water and take Kefir with probiotics added at a different time to my antibiotic -

 

I am no longer on chemo, so I'm currently safe to take probiotics without checking it out with the onc!

 

will feedback how I get on xx

 

hope you are all happily chugging along xx

 

Moijan😎

Member
Posts: 205
Registered: ‎01-05-2012

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Withasmile 

Glad you are ok and keeping busy hope your horse is keeping you occupied as well 

good luck with you CT in January 

i have chemo weds before xmas and wed after so I probably have to try and be social during the festivities 

at least I do not have to cook 

 

you take care and enjoy your chemo free time 

 

kay

Member
Posts: 205
Registered: ‎01-05-2012

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan 

thanks for that will take more notice next time it gives me a kick see if I have eaten anything different

I thought I had gallstones when I was diagnosed with the liver mets 

At the minute I have a very bad ache in my right thigh which is curtailing my walking at the min but just re read the xgeva and it could be that any way I am not worrying about but you know what it us like just that little nag that thinks is it the cancer or I do rationalise it with myself 

 

take care 

kay 

if this goes on site 3 times keeps saying error 

Member
Posts: 205
Registered: ‎01-05-2012

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan 

thanks for that will take more notice next time it gives me a kick see if I have eaten anything different

I thought I had gallstones when I was diagnosed with the liver mets 

At the minute I have a very bad ache in my right thigh which is curtailing my walking at the min but just re read the xgeva and it could be that any way I am not worrying about but you know what it us like just that little nag that thinks is it the cancer or I do rationalise it with myself 

 

take care 

kay 

Community Champion
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Registered: ‎01-05-2012

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi spongebobs

Although I am no longer one of the gang I do follow the threads although recently have been very busy so hardly been on the forum.  Anyway, I've had a quick catch up.  Thanks for asking after me Moijan. I am off eribulin as it was decided I needed a break after 8 cycles.  I was tolerating it fairly well although did need the GCSF injections each cycle - which is why I think it was decided to stop, to give my bone marrow time to recover.  I know you also had them, Moijan, but I guess we are all different, as are our oncs. So, I'm currently on a hormone treatment, exestamane (Sp? Aromasin is its trade name) which I was put on whilst waiting to go on a trial. Well, guess what? No trial is available as my disease isnt progressing and you can only be accepted on a trial on the basis that your disease is not stable. So, it is good news that I'm doing OK but a bit daunting not knowing 'the next step' - which I always want to know. Having said that I am enjoying not going to hospital which is why I've been so busy.  I will be scanned at the end of December with results early Jan to see whether the hormone holds things at bay which of course I'm hoping for.  I have always responded well to hormones but am also aware of their decreasing effect the more you have/try.  So we will see.

In answer to the question about tooth extraction I did have one removed some years ago, whilst on bisphosphonates, before I had gone onto denosumab.  I had it done at the maxo-facial (again, sp?) at the hospital as they are aware of the risks of jaw necrosis.  Everything was fine but that's not to say it would be in every case so I'm not sure this helps much - sorry.

Anyway, wrap up warm spnogebobs and hope eribulin is treating you well but attacking the little gremlins.

Nicky x