Chemo Buddy Needed - Anyone Currently on Eribulin?

[nicky08]

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

[withasmile]

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

[pussy]

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

[nicky08]

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

[pussy]

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

[Moijan]

Thanks Liz.....

Moijanxx

[Bousy]

Moijan,

Good luck with your results on Wednesday.

Liz x

[Moijan]

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

[Bousy]

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

[Moijan]

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

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

hugs,

Moijanxx

[withasmile]

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

Love to you all xx

[Moijan]

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

Moijan💚💚💚

[Bousy]

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

[Moijan]

Just sending a bit of love and encouragement to everyone on Eribulin and all the poppers inxx

Moijan💚💚💚💚🤗

[Moijan]

Hi Shirley, I was on eribulin for 14/12 before it became less effective.did wonders for me, but bc grew again.

now on Fulvestrant,......but not everyone gets it as many hospitals can't afford to pay for it...it's not approved by Nice

good luck, , don't despair xx

Moijan🙏🤗.;

[nicky08]

Hi Shirley and I'm sorry to hear that Eribulin is no longer working for you.  As to what you can go onto next it will depend on what type of receptors your BC has ie are you hormone positive/negative (I'm assuming you're not HER2+ as you've not mentioned Herceptin) and also what previous treatments you've had.  Sorry I can't be more specific than that but I do hope whatever you do go onto it is kind to you and sorts out those liver lesions.  Let us know how you get on, and about any of info about the above we may be able to help with a bit more advice.

Nicky x

[Atters]

Hi everyone, I haven't been here in a while. I have been on Eribulin since January. It seemed to be working, even though I was having a hard time with numbness etc, and had my treatment reduced  to half. I had a scan in November which showed that my liver lesions had grown. One in section 2 was 20mm and had grown to 29mm, and one in section 6 which was 13mm now 27mm. It also showed new lesions. So Eribulin has stopped working. I am in a daze, and don't know what will happen now.

Does anyone know what can be offered after Eribulin?

I hope you are all having a better time then I. And have a happy Christmas.

Shirley (Atters)

[Foxylady]

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.

[Foxylady]

Evening ladies

[bezza111]

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

[Moijan]

Can you try a chiropractor?

[pussy]

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

[Moijan]

Carolyn apparently nice reconsidered xx

[Carolyn52]

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.

[pussy]

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

[Carolyn52]

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

[Moijan]

Glad things are stable Helen xx

M💚

[helen44]

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

[Moijan]

Let us know Bousy....

love and best wishes, Moijanxx

[Bousy]

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

Liz x

[Moijan]

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😎

[Bousy]

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

[Moijan]

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😎

[pussy]

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

[pussy]

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 

[pussy]

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 

[nicky08]

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

[Moijan]

Hi Tessa, yes, a very brave and positive lady.

lovely to hear from you tho, and eribulin really helped me...my tms were over 1000 in June last year..  .and eribulin knocked them down to 79 ish, sadly it stopped working for me this summer, but I have to admit it was a real comfortable chemo...if you have to have one!  I suppose I must have been getting to the 20 something cycles mark.

hope all the other spongebobs are doing well xx

love, Moijan🤠

[Tessa]

Hi everyone,

I haven't posted much on here but do check in from time to time to see how everyone is getting on. 

I am starting cycle 7 now of  eribulin and have been tolerating it well with few s/e, mainly tiredness and aching joints, thankfully  recent scans show it is keeping the pesky tumours at bay. Was speaking to one of the chemo nurses who said they have had a lady that has been on eribulin for 39 cycles which is very reassuring.

I have been off work since February and need to decide whether to return in the new year and would like to know who is working and how you are finding it. 

Moijan - I have been following Marnie's blog, such an inspirational lady x

Hugs Teresa xx

[withasmile]

hello everyone-

thankyou for your care and concern its very much appreciated, everything is ok!
For some reason my notifications ceased- I've just re-set them so I'll know now when I get a message or a new post goes up.

I'm very well, very tired, doing too much (of course!) and enjoying every moment of non-chemo bliss.

My next CT scan/onco appt is January; I'm endeavouring to put any scary thoughts out of mind mind until then. At the last meeting onc said he was amazed the scan results were still clear, I'm just thankful I let myself be persuaded to give Eribulin a chance.

I hope everyone is bearing up under the weight of chemo, scans, S.Es and the onset of winter...I think of you all and am always grateful for the support you offered so willingly. Such a lovely group of people brought togther in unwilling circumstances.

I'm going to read through all your posts now and catch-up

lots of love

xx

[Moijan]

Helen, good luck for tomorrow xx

Kay, just a quick comment...I used to have a very large gall stone and had really bad pain in the liver when I ate too much fat, and the pain was pretty unbearable.......was rolling around on the floor.

..had my gallbladder out ages ago now, but I recall being ultrasounded after getting symptoms and wash told that actually, apparently constipation can cause what feels like a pain in the liver, ( as we know the large bowel runs across in front of it).....I have mets in my ribs too which tend to feel like a burning pain and cramp when they occur, I also get what feels like a mild pain in my liver when I have a lot of wind but with a gurgle it disappears...... Just sharing in the hope that it helps?

Moijanxx

[pussy]

Hi Helen

i am ok as far as I am aware I do not see onc till Feb then he will arrange CT  bit back to front for me I do not know why I can not have CT then see him with results but who ami to say which way is best 

I have been having some pain on sternum and behind implant and in liver but I also am aware I can have that if shrinking  so I tend not to fuss to much about it I would if it got really bad but it is not bad enough to take painkillers 

Glad you have replied and fingers crossed it is still working for younand yes I am on cycle 14 also which is why I asked how you were doing 

good luck with scan 

let us know 

kayn

[helen44]

Hi Kay

Just checking in, haven't been posting for a while but still reading. Hope you are ok at the moment, you must be just starting cycle 14 like me? I have CT scan results tomorrow so I'll know more about whether I am carrying on with eribulin. I hope so as I seem to tolerate it pretty well and have got myself into a routine with the treatment and know 'where I am at' if that makes sense.

I too was wondering about Withasmile - please let us know you are ok.

Hope all you lovely ladies are doing ok with eribulin.

Take care, Helen x

[Moijan]

Hello KAY

I have noticed the forum itself has been quite quiet. For Marnster....have a look at her blog' life is too short to miss desert'

hope all is well with you...and that eribulin is working it's magic for you xx

[pussy]

Hi Marnster 

not heard from you for a long while please pop in to say Hello if your able

kay

[pussy]

Hi Withasmile 

not heard from you for a long while I am hoping everything is ok please respond only if to say hello 

also have not heard from Helen I hope you are both ok please just give us update Helen again if only to say Hello 

kay

[Moijan]

Withasmile, how are you these days?  And the lovely horse from your avatar?

who else has been away?Nicky, how are things with you?

Moijanxxx

[Moijan]

Hi Kay,

so so sorry to hear about your tooth! I too hate things done now I'm on Zometa,

have an an appointment to have three fillings done in December and like you I live in trepidation of possible side effects ...but have had fillings done already whilst on Zometa 

also, some years back Nicky posted on a thread somewhere that she had an extraction.....and things were ok...tho, I have been told to avoid extractions as you have.

My dentist did have a lady who I think was the first one in the U.K. To get jaw necrosis,,,, apparently hers is growing back now. Anyway, my dentist is adamant that fillings and hygienists are ok whilst on biphosphonates.

very best wishes for your treatment Kayxxx

Moijan

[pussy]

Hi Moijan 

that is about right that's why I have stopped donating now seems pointless when you can not get the drugs in the first place 

I told my sister that there would be a catch as there usually is in our cases 

i had the same problem with everolimus and exemastane we have had too many treatments 

Now I have broken a tooth so off to see if Dentist will put temporary filling in whilst I see what the score is I am not due xgeva till January so that could be my stop date not sure about the chemo  though and fillings 

but first I will see if a filling can be done and it is not a tooth extraction as i know I can not have it taken out with out stopping xgeva but think I can have a filling but not sure whilst on chemo what I can have done 

That will teach me  to fancy a chocolate eclair do not very often have a toffee think last xmas was the last time 

kay 

take care

[Moijan]

I fear not Kay. It was the thought I'd had too, but they don't seem to be allowing us to have it once we've had chemo.

The 'Nice' website now has all the decisions making process on there......makes me feel quite cross.