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Chemo Buddy Needed - Anyone Currently on Eribulin?

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Nicki, I’m on an 80% dose too! Sx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Sian/London1

Good for you and enjoy your holiday.

When I was on this chemo in 2017 I coped really well but this time around I seem to have been plagued by added complications such as awful toothache for 2 cycles and picking up a stomach bug for the next cycle after those 2! The disease that keeps on giving! Anyway this last cycle was the first one where I have felt similar to how I was in 2017 although with a bit more fatigue I think. I find out soon how things are going when I get my CT results so fingers crossed for all of us.

A quick question, if you don’t mind, when you say reduced dose do you know how reduced that is? I’m currently on 80%, as I was in 2017, but do know it can be quite a bit lower and still be effective. If I’m to stay on it longer term, like you are and other ladies have been I’d like to know how low a dose I could ask for. Just adding more info to my stash! 

Im also mimicking you with the hair loss and eyebrows and lashes (same thing happened last time but with less hair loss). Eyebrows few and far between but am using a tattoo eyebrow dye so at least I wake up and can see them each morning. Eyelashes still hanging in there but will eventually go as they did last time so I’ll have to get out the false eyelashes again for special occasions!

Good luck everyone on this tolerable chemo.

Nicky xx

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello all Eribulin ladies! Hope you are all enjoying the fine weather! I started this (my 4th chemo, 3rd IV chemo) dec 2018 and I’m now in between doses for cycle 12, so just over 8 months, the average according to statistics is 10 months but I hope for more than that. As in the words of George Canning (UK Prime Minister 1827) ‘I can prove anything by statistics except the truth’.  (A favourite quote!) The last scan in between doses cycle 11 while on a reduced dose was stable. The reduced dose was due to low neuts even with G-CSF injections but now the injections maintain the neuts at well over 2 in the ‘normal’ range. After the initial shedding my hair is back although it did start to shed again after cycle 11 but it is minor. This time though it is a blond white and curly as opposed to my real hair colour of a darker strawberry blond and wavy.  But at 58 I can’t complain too much as my sister and mother were both white/grey at 30. It is much thinner than before which I don’t like but at least it is there! No sign of eyelash regrowth though but I live in hope! I have to paint in eyebrows too as they are also practically non existent. I still hate seeing myself in mirrors as I hardly recognise myself! But I (mostly) feel really well and am mostly doing what I want to including riding my lovely horse. Off on holiday next week too! It has been a good and very tolerable chemo for me, and long may that continue and good luck to all others on it! Sianx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Best of luck with this one.  So far I have found it to be a bit less difficult than all the previous, except for the cough.  However, a short course of Prednisone has helped considerably.  My hair has thinned, but not fallen out.  That's a blessing!  So tired of looking like Kojak.  I'm on the third cycle, so I am interested to know how your experience goes with this one.  Sending good thoughts your way!

 

Laraine

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Morning Ramade

Good luck with your new chemo and side effects are minimal. 

You are amazing lady having gone through all them treatments and loosing your hair 5 times. 

Fingers crossed it works well for you . 

Linda 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi ramade

I hope you get on well with Eribulin and that it works for you, I know you’ve had lots of other treatments so my fingers are crossed for you.

A couple of things about Eribulin. I don’t take steroids at all for it so it's not essential to take them if you feel you don't want to.. I think some chemo units/ones prescribe them routinely but the SE s are not as significant as say the taxanes when you do really need to take them. You could try by lowering the dose until you either get to the point you don’t need them or just take a very small dose?

Also hair loss tends to be hair thinning from my own experience and the ones written on here over  the years. I was on this in 2017 when my hair thinned about 50-75% but I do (did!) have very thick hair so I got away with wide, soft, hair bands rather than a full head cover. This time around (I’ve just had cycle 4) it has ‘dropped’ twice so I’m down to about 10% hair which is truly awful. I have again been disguising it’s thinness with the same headbands as I had and also, in the hot weather, caps and a sun hat. I was going to shave it all off but asked my adult daughters if I should (they would definitely tell me the truth!) and they said I should keep it as it is but keep disguising the lack of it. I call it my ‘illusion of hair’ as it’s so pathetic. In 2017 I found it did start regrowing though after a few cycles so maybe it will thicken up slightly? Other ladies have reported that it grows back as well, so I’m hopeful it will.  

Good luck to you, and all other Eribulin ladies

Nicky x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello brave ladies glad to find this thread, I started Erubilin yesterday as so many other treatments have not worked.

Was given 4 steroids, how nice it is to be awake all night. NOT. will not be taking them tonight. you know how you wait for horrible side effects to kick in immediately, well nothing as yet, next part of cycle 1 next week. This will be the 5th time I have lost my hair, i'm sure my cancer is watching me and as soon as hair gets to the not hat/scarf stage it says right let's go for her again!!

I want to say here how brave you all are, during my time I have met loads of people who flatly refuse to have any treatment so well done all.

love and hugs

Ramade xx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi there, 

I have been on eribulin now for two cycles.  Haven't experienced anything too terrible yet....hair thinning and some lethargy.  But I have developed an unmanageable cough.  Wondering if anyone else has this side effect.

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Nicky

Hope you cope better on Eribulin this time and that you have good results.  It is strange how side effects are different for each of us.

As for hair I lost mine on last treatment Paxitaxol but on Eribulin it has been growing back albeit grey!

I have never been offered any surgery to liver.  Maybe because I also have bone mets.

Good luck to you and all of us fighters.

Lorraine x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Dawn

Sorry to hear that Eribulin is no longer working for you and that you've had such a tough time of everything.  Fingers crossed for Carboplatin.

I'm posting on this thread as I am back on Eribulin after about 18 months off it.  I had 8 cycles back in 2017, this was the suggestion from a second opinion oncologist as my platelets were acting up and he felt I shouldn't have more than 8 cycles.  As it was my platelet count was absolutely fine during that time and Eribulin worked well on my liver mets getting rid of them all except one larger one, which it was shrinking.  I went onto hormonal treatment which also worked well, although the larger liver met started to grow again.  I then had surgery to remove it plus 2 tiny ones.  Everything was still stable after a year but in April this year an MRI showed I had some lesions in the liver again.  As I know Eribulin can be given for longer cycles (certainly more than 😎 I asked to go back onto this once I knew the hormonal was no longer effective and also that Eribulin had still been effective at the end of the 8 cycles even though it had not got rid of all the lesions but they were still shrinking.

So far I've had only one and a half cycles (the dose on day 8 of my first cycle didn't happen again due to low platelet count) and am due to start my 3rd cycle tomorrow.  My platelet count has now recovered well so I am slightly less stressed about it now!  I am having gcsf injections to boost my white blood cell count as last time I had Eribulin in 2017 my wbc and neuts hit the floor.  As in 2017 I have lost a lot of hair! I'd guess about 75% which leave me with some very straggly locks!  As before I'm wearing wide hair bands to cover my loss and hope that, as before, my hair starts to regrow whilst on the chemo.  Just waiting now for the eyebrows and eyelashes to fall out (as they did this before, unlike any other chemo I'd had), this was more annoying that the hair loss.

Hope all of you still on this chemo are coping with the side effects and that it continues to work well for you,

Nicky x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Morning Dawn

Sounds like you have had an awful time but am so glad you got through it.  You are a true fighter.

I really hope Carboplatin sorts you out.

When is your first treatment?

Lorraine x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Lorraine, I still haven't discussed timescales directly with him. When my bowel obstruction was identified I was very poorly and they didn't know if it was operable, and if not it looked like I had as long as it took malnutrition to take me. We had a brief discussion about DNR which we agreed we weren't ready for unless I was going to come round as a vegetable. Onc did say we would start talking in months and cycles for the first time. 

But somehow my surgeon was amazing and I've bounced back, keeping myself well informed and on top of the nutrition.

After my latest scan he has indicated that if we cant get the liver under control, if could be ad short as 3 months before liver gets too broken to keep going. Presently affecting about 10% of the liver and it can function  well until 80-90% diseased. I'm not suitable for rads or any other surgical intervention. So come on carboplatin!!

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Lorraine, I still haven't discussed timescales directly with him. When my bowel obstruction was identified I was very poorly and they didn't know if it was operable, and if not it looked like I had as long as it took malnutrition to take me. We had a brief discussion about DNR which we agreed we weren't ready for unless I was going to come round as a vegetable. Onc did say we would start talking in months and cycles for the first time. 

But somehow my surgeon was amazing and I've bounced back, keeping myself well informed and on top of the nutrition.

After my latest scan he has indicated that if we cant get the liver under control, if could be ad short as 3 months before liver gets too broken to keep going. Presently affecting about 10% of the liver and it can function  well until 80-90% diseased. I'm not suitable for rads or any other surgical intervention. So come on carboplatin!!

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks for the tips Dawn.  It all seems a bit daunting.  Have never discussed with oncologist any timescales for my outlook.  Ignorance is bliss. 

Lxx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks Lorraine, great news on your results. I hope the neuropathy settles, I've been warned that this is a risk with Carboplatin as it was with taxol and eribulin, I've been fortunate on that front so far.

Has your oncologist or GP signed form DS1500 for you? My onc did it as soon as my organs were affected, it fast tracks you to benefits and can support your ill health application. We are technically terminal when we get stage 4 diagnosis but it appears that insurance, pension etc take terminal to mean you've been given a specific time frame under 6 months. I had to be referred to occupational health, complete forms for them and provide contact details for GP and oncologist who in turn had to report on my health and prognosis. You do need to have a thick skin as to support your application the medics need to report on the very worst case scenario and say that you are not fit to work and have a poor prognosis.

Good luck with whatever you decide to do xx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Dawn

So sorry your results are not what you wanted.  It is so upsetting and frustrating every time we have to go through this.  Hopefully Carboplatin will be the answer for you. 

Thanks for the information about retiring on ill health.  Have been in touch with my pension company.  They asked me if my cancer is terminal and was not sure how to answer.  They are sending me out some paperwork.

As for me I have this morning been told things are stable for now.  Having been off Eribulin for five weeks due to problems with neuropathy I  am to restart Eribulin but on a lower dose.  Am having pain in my shoulder also so being referred for bone scan.

The rollercoaster goes on.  Think carboplatin is next once this stops working.   All hospitals must follow same treatment plan.

It's awful and worrying getting the bad news that things stop working its the waiting and wondering.  I hope you manage to have a good weekend.

Lorraine xx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Well that's it for me on Eribulin, progression continues in my liver so moving onto Carboplatin next week. Onc said I could stay on Eribulin ad I'm well on it and it's probably slowing growth but he wants a better result and I may not be strong enough for Carboplatin in the future. 

 

Hope your results are better and you can stay on this for a while and it's a kind drug. Xx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi ladies

Sooo fatigued this weekend, Friday was day 8 of cycle 3. Hair loss has stopped. 

Vicky, I'm seeing onc on Wednesday. I've done some googling on platinum chemo, looks like anything ending in "inum"!

Sian, your horse sounds amazing! And having quality time away with him must be so special rather than ending up with daily chores and not so much fun.

Lorraine I should get results on 10th. Big week for both of us. I worked for a school trust so we have local government pensions. I was only there from Sept 2016 but the policy is that if you're eligible for ill health retirement, then they top up the pension as if you're employed to retirement age. I'm 52 so they've added 15 years to my fund...... I am very fortunate, so lucky to have changed jobs when I did. I can get 25% of the pension value as a lump sum plus annual pension. Because of length of service it's only about £3500 a year but tops up PIP nicely. 

The procedure is that either the company can suggest retirement if you've had lots of long term sick leave or you can request it. There's a danger that if you request it and you don't quality, they can then dismiss you on capability grounds as you've said you're no longer fit for work! It's worth looking into though.

Lots of hoops to jump through. I applied when I came out of hospital on 6th March, retirement date is 7th June but I'm still waiting for lump sum and first monthly payment.

More news in a few days after scan results.

Dawn x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Morning London1, Vicky77 and Riverside Dawn

I have now had another CT scan and am due to see Consultant for results on 11 July.  I have now been on a break from Eribulin for a few weeks and am enjoying not having any treatment.  If only I could stay this way.  Unfortunately this is wishful thinking as cancer does not take a break!  My last and only other scan since starting Eribulin was inconclusive as imaging was bad.  Hopefully this one will give me answers as to whether Eribulin has worked.  If not it will be change again.  Still having problems with neuropathy and with my legs.

I have been signed off work to rest and although part of me wants to go back to have some normality I do wonder about stopping work.  I saw a couple of you had taken ill health retirement and am not sure I fully understand what is involved in doing that.  I have a work pension and assume I would need to contact pension provider?  Our HR at work is not that great.

I wish you all well either continuing on treatments or with changing to new one.  Keeping positive is all we can do.

Lorraine x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello all Eribulin ladies! I’ve just had day 8 cycle 9 and the second CT scan after cycle 7 showed stable. I wanted more than this but the light of Vicky’s news gave me perspective. So sorry to hear about this progression and hope more treatment options are given soon.

 

Overall I’m tolerating Eribulin well, (I think) no neuropathy at least.  Riversidedawn,  I do sometimes get tired so our dog now has a walk with a good dog walker every morning! Then I take him for his afternoon walk and adapt the length as required, mostly I can do the full walk around our local park which takes about an hour. I no longer work (I’m an architect) and keeping my brain busy with projects is now my new normal.

 

But I do have G-CSF injections now  and for the first time before day 1 cycle 9 my neutrophils were too low at 0.9 and it was delayed two days when a further blood test showed the neuts were back to 3.0! Then the blood test at day 8 chemo showed the neuts had shot up to 10.6 and I realised later that the day 8 dose was then reduced by 20% but I was still given G-CSF injections! ?

 

Until I next see an onc ( I can no longer say my onc as I’ve seen five different ones in my last five appointments,) I won’t know why! I googled it (stupid I know!) and high neuts show a source of infection supposedly but if so I don’t know where it is! I have no symptoms!  I have felt fine throughout so as always it is as if I feel one thing and my body shows something else!

 

I do find doing a weekly pilates class gives me a sense of normality! I’ve had SBC over 5 years now (straight to SBC) I had EC chemo first Vicky. (It always surprises me that there is so much variation in treatment.) I then had tamoxifen which didn’t work for very long, then Docetaxel,  then letrozole, then Capecitabine so this is my 4th chemo in 5 years. My liver mets are quite large but they have not in themselves ever caused me pain or problems. My bone mets are small and have always been stable.

 

Two years ago when just about to start Capecitabine I finally bought myself my first horse! I’ve ridden from aged 12 but I never was in the position to own one, best thing I’ve done for ages! I keep him at long distance livery though at a specialist yard as he is a Lusitano stallion. Now when I’m with him I’m on the regular breaks from treatment  and far far away from hospitals etc! That works for me! My husband is very tolerant and knows I have to ride to keep sane!

 

My hair started growing back after cycle 5 and is now obvious and curly (I had wavy hair and curls now just looks wrong), unfortunately there is no sign of eyelash replacement growth yet!

 

Good luck with treatment all Eribulin ladies! Sianx

 

 

 

 

 

 

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Riversidedawn

 

I've gone onto 3 sessions of EC (part of FEC) and then onto hormones again. The hormone part of E & E treatment. My oncologist thinks that as I'm not responding to chemo then I might respond better to hormones.  I had 18 months of being stable on Anastrozol when first diagnosed so fingers crossed this will work. My liver mets are bad so the chemo is to try and hit them hard and try and reduce them. 

Very disappointed I didn't get better results with the Eribulin after the first good scan. Very frustrating that some ladies get years out of treatments and I'm struggling to get 3 months!!

What is your platinum chemo? I ask every time about new treatments I have read about but knocked back each time as they are all first line treatments.  My only options now are clinical trials and there aren't any currently in my area.  

Fingers crossed for good scan results,  please keep us updated.

I've just retired on ill health at 47 and gone onto PIP. Not how I expected life to turn out!

Vicky

 

 

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi ladies, I'm now on cycle 3 of eribulin and find I'm tolerating it as well as can be expected.

I'm having CT scan tomorrow with onc appointment booked for 10th July, chemo day 8 is Friday so I'm presuming if they report it quickly and it's bad news, they should tell me as it would be pointless having treatment?

Vicky, so sorry to hear you have had progression after a promising start. I feel like I'm going downhill rapidly since October when bone mets became active. This is my third treatment since secondary diagnosis - palbociclib/letrozole, taxol and now eribulin. Onc said one of the platinum chemos is my only option next. I do hope your next treatment is more successful, what are you on now?

Lorraine, your last post was 2 weeks ago saying you were due a scan in a couple of weeks - any news? 

London1, are you still on eribulin? How are you getting on?

I've lost more hair on this than on other treatment, very very thin. Started wearing scarves and got a new (old) wig last week which I wore out for my daughter's birthday.

My main SE is extreme fatigue, I have to seriously pace myself and can only comfortably manage one thing a day - yoga, walk the dogs, take kids to social or extra curricular activities. Feel very lazy but if I do too much I just spend then next day or 2 in bed.

I have also got back in the saddle, albeit very tentatively with a leader, instructor and someone walking beside me. Extra caution is because I have a new stoma as a result of my abdominal mets so I'm at risk of hernia, also the fatigue and low blood pressure can come from nowhere, so taking it very slowly. 

I'm feeling older than my 52 years and have just taken ill health retirement, still awaiting paperwork to complete this long drawn out process. 

Scan result update to follow when I get it. Fingers crossed for a of us.

Xx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi

Scan results today and after initial success the 2nd cycle of Eribulin has failed to work and I've had further progression. I went expecting bad news as since the weekend I have had liver pain and took this as a sign that things had changed.

I was expecting to be told that was it and there was nothing else but my consultant wants to press on with treatment. Because I don't seem to be responding to chemo she thinks changing to a hormone treatment is worth a shot. I will have 3 hits of EC (FEC) without the F to try and impact my liver as hormone treatment takes longer to work and then onto one of the E'S of E & E.

Am devastated that another treatment has failed and I'm very short on options. I just don't understand how some are getting years out of treatments and I can't, it's so frustrating.

Trying hard to be positive , Eribulin has been kind to me and can remember FEC being harsh but maybe this will be the one.

 

Vicky

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Vicky

Thanks for your reply.  I saw my consultant this week and he has put me on a break from Eribulin.  He said I need to rest and that was the only thing he could suggest for my legs which he thinks is due to neoropathy which I have in hands and feet.  I think I do need the break as my legs are like jelly.  I am having a scan in next couple of weeks.

I wish you all the best with your scan results.

Lorraine x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Lorraine

 

Unfortunately I can't offer any solution to our lead legs problem.

I am much more mobile than I have been and am back walking the dog but can only walk for about 15 minutes and walk quite slowly, but the exercise definitely helps.

I mentioned it yesterday to my oncologist but she couldn't offer any help either.

My legs ache when I first get up but once I'm up and about feel better. I also have to remember not to stretch in bed or I get cramp in my calves. 

I think it's something we may just have to live with. 

Have another scan coming up and hoping the Eribulin is still working for me.

 

All the best

 

Vicky

 

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Vicky

Hope you are doing well.

My legs are still playing me up.  Can I ask was there anything you took or did which eased your legs?

I am back at consultant next week but have had my chemo delayed because of problems with legs.

Any tips would be gratefully accepted.

Lorraine xx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Riversidedawn

Sorry for not replying sooner to your post.  I myself am on my sixth round of Eribulin.  Like you before that was on Paxitaxol which stopped working.

How have you been since starting Eribulin?

Regards,

Lorraine

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks for saying hello Nicky. There's not many on it, even fewer going through chemo after ileostomy!

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi riversidedawn 

Yes, it looks like this thread is still active as there were several posts last week. I’ve noticed during the time I’ve been a member of these forums that a specific treatment thread can go quiet depending on how many secondary ladies are currently on that treatment. I’ve also noticed that it seems to go up and down as to which treatment is in favour so to speak. For a while there was a really active thread about the E/E combo (neither drug I can spell by the way!) but now there’s not many ladies on that combo. As us secondary ladies tend to move onto another chemo at some point it also reflects where we all are in our treatments. I’m sure if you wanted any questions answered a current Eribulin lady will try to help or if not one of us who have had it in the past.

Nicky x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Is this thread still active?

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Vicky

Glad you are feeling more active.  Good news about results.  Hopefully I will ne lucky too.

Lx

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Lorraine

I have been really poorly for about 6 months and very inactive so wasn't sure if that was the reason for my jelly legs but now I'm much more active I still have the lead legs. I'm on about cycle 5 of Eribulin and scanned after 3rd cycle and it's working really well for me. This chemo was the last chance saloon for me but so far so good with a reduction on my liver mets.

I also feel so much better and have little side effects so fingers crossed it continues to work for some time as prior to this I had  3 consecutive  treatments that didn't work for me.

Good luck with your scan results I hope it has worked as well for you.

 

Vicky 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Vicky

Thanks for your reply.  I am sorry that you are also suffering.  For me this has only come on in the last two weeks.  Sometimes it is such an effort to move around and like you say stairs are a problem.  I am seeing my consultant next week so will ask him.  I am due to get my first CT results on Eribulin to see if it is working.  If it is then it is a double edged sword as if side effects affect my legs badly then that is not so good.

Will let you know what he says.

Regards,

Lorraine

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Lorraine

I have neuropathy in my hands and feet , and also have lead legs. 

I don't really have any other side effects and I'm finding Eribulin very manageable apart from the legs.

I feel like I'm walking on someone else's legs and find the stairs hard too. I have to try not to carry anything up the stairs so I can use both hands to pull myself up. 

I didn't mention this to my consultant yesterday but will next time I see her. 

 

Vicky

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi ladies can I join your group? I start eribulin on Friday. Sorry to hear about Moijan, we crossed paths on many occasions.

 

Original dx sept14, mx, implant, stage 3, 26 affected nodes, FEC-t followed by rads.

Delayed DIEP sept 2017.

Bone Mets Dec 2017 -  palbocciclib/letrozele 10 months

HlJan/Feb 19 - Mets in peritoneal cavity including bowel obstruction so emergency ileostomy and stoma in Feb2019, weekly paclitaxel 4 weeks later. Had 2 cycles, 6 doses my ct scan shows progression in perineum and new Mets in the liver.

So now onto eribulin day 1 and 8 of 21 day cycle.

 

I've managed to keep a reasonable covering of hair through taxol. I cold capped in 14/15 and lost 50% to thinning. I couldnt face the extra teatment time involved but find it looks pretty much same now as after first FECt . Ie a mess that doest need hats, scarves,wigs etc but still doesn't look right! 

 

Look forward to sharing this next stage with you. All tips gratefully received, especially how to gain weight with poor appetite? 

 

Riversidedawn x

 

 

 

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi ladies can I join your group? I start eribulin on Friday.

Original dx sept14, mx, implant, stage 3, 26 affected nodes, FEC-t followed by rads.

Delayed DIEP sept 2017.

Bone Mets Dec 2017 -  palbocciclib/letrozele 10 months

HlJan/Feb 19 - Mets in peritoneal cavity including bowel obstruction so emergency ileostomy and stoma in Feb2019, weekly paclitaxel 4 weeks later. Had 2 cycles, 6 doses my ct scan shows progression in perineum and new Mets in the liver.

So now onto eribulin day 1 and 8 of 21 day cycle.

 

I've managed to keep a reasonable covering of hair through taxol. I cold capped in 14/15 and lost 50% to thinning, l

I couldnt face the extra teatment time involved looks pretty much same now. Ie a mess that doest need hats, scarves,wigs etc but still doesn't look right! 

Look forward to sharing this next stage with you. All tips gratefully received, especially how to gain weight with poor appetite? 

 

 

 

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Ladies

Looking for some advice.  I have now had four cycles of Eribulin and at times find the side effects hard.  At the moment I am at the end of my week off and my legs are really aching.  I have some neuropathy in my feet and hands.  My legs feel like lead weights and going up and down stairs is an effort.  Just wondering if anyone else is suffering with this?

Any comments would be greatly appreciated.

Thanks.

Lorraine x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi alison

Ive not had bad neuropathy myself, just very mild however a friend of mine has. Her chemo nurses suggested she iced her feet whilst having the infusion (of a different chemo) and this she said helped. I’ve also heard of some chemo units having ice gloves. All similar in practice to the cold cap.

Hope this helps and you’re able to tolerate these SEs

Nicky  xx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Withasmile,

 

I had 3 cycels of eribulin then had to delay one cycle because of the intense neuropatyhy. It affected my hands such that I couldn't really write, type, open a tea bag. My feet were also affected, almost tripping when walking. Very weak in my leg muscles. So wild! I started up my treatment last week, and go again tomorrow. Will have a scan Friday as it has been 2.5 months since I last scanned. I had amazing results so quickly and just pray that I can continue Eribulin, and that it will continue to work. The question remains how to deal with the neuropathy. I already feel it creeping back in after last week's infusion. Any great thoughts?

 

Tell me about your equine therapy and how it helps please.

 

XO, Alison

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thank you so much Helen! I started it again last Tuesday. Just seeing your reply now, as I was away with my daughter for her spring break.I meet with my oncologist at Dana Farber in Boston for scans etc on Friday and hope for some great information.

 

XO, Alison

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Alisonc 

Sorry to hear that you are suffering with neuropathy. If you look back on this thread you'll find that a few of us experienced neuropathy. I had 23 cycles of eribulin during which I had neuropathy mainly in my toes but also a strange numbness in my shins and calves from time to time. No-one really knew what to do about it but when I had paclitaxel afterwards I rested my feet on ice packs during chemo and it really helped ease the neuropathy. It did take an hour though and eribulin is much quicker to administer of course.

Withasmile has taken breaks from eribulin & restarted it so hopefully she might see this & reply, have a look back on the thread at her posts. All the best with your treatment. 

Helen x 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi, I completed my fourth cycle and have to take a break because of my neuropathy. It’s pretty bad. And I am wondering if you know whether people start up again. If the cancer cells recognize you were on it already and it doesn’t work when you do start up again. I can’t see it it’s resolving very soon. It doesn’t seem like from any of the comments above that people experience neuropathy. Any suggestions are helpful I was feeling great on it and doing really well and am wanting to continue with it. How do I get this neuropathy under control? Thanks 😊

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Re: Anyone Currently on Eribulin?

Hi Ladies

Sorry to hear your stories about hair loss.  I lost mine during paclitaxol and only have a very fine amount.  I have two lovely wigs one of which i wear the most.  Does get itchy after a day of wearing it.  Don't bother around house.

Had a bit of a weekend last weekend with high temperature which ended up with a couple of nights stay in hospital whilst they tried to work out where infection causing temperature was.  They then put it down to chemo.  I had had one dose of Eribulin but not sure it was that.  On antibiotics and feeling better.  

Unfortunately this meant no second dose of chemo this week.  I have to wait until next cycle is due on 14 March.  This worries me as to cancer progressing in the meantime.

As to looks from people which I find I get when wearing turbans/hats I just smile at them and think to myself well I might have cancer but here I am out and about and getting on with life.

Lorraine 😆

 

 

 

 

 

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Re: Anyone Currently on Eribulin?

I didn’t use the cold cap and I have lost a bit more than 50% of my hair if that helps! But the good news is that it stabilised and now after 3 cycles I think I won’t lose any more. There is enough of a fuzz left to have the wide headband look still, as I hate wearing hats. This is the third time of loosing my hair and it doesn’t get any easier to cope with! But the first two times I was bald so I had to wear caps! So this time it is a bit easier than that! Sorry to say though that I also have very few eyelashes left now. That is the pits! However I’ve just got some of the new c-lash false eyelashes for chemo patients in reserve now. I haven’t used them yet though as from a distance smudged eyeliner seems to work! But it needs regular reapplication as my eyes water a lot because of the lack of eyelashes! I’ve also got a real hair false fringe which I also keep in reserve! It matches in quite well surprisingly. 

 

I too just hate ‘that’ look that some people can’t help but give you and I’ll do a lot to avoid it! I don’t want to be pitied I’ve just had bad luck. I still think I’m fitter than a lot of people my age and when challenged recently my onc had to agree! And there are still many good days! Sx

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Re: Anyone Currently on Eribulin?

After successfully persevering with the cold cap for 9 sessions of Paclitaxol and being reassured that you don't lose your hair on Eribulin I have lost over 50% of my hair in 4 days.

I know in the grand scheme of things it's minor,  but I can't tell you how sad this has made me. Keeping my hair was the one thing I felt i had some control over. 

Hey ho will dust the hats off and get used to people looking at me with pity again!! 

 

Vicky 

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Re: Anyone Currently on Eribulin?

I relate to so many on this thread, but even though we all have Stage IV breast cancer we are all different. I will start haloven on Monday and will turn 66 during my first off week. I did not start out Stage IV, mine started out Stage II. My colon cancer, however, did start out Stage IV, so now I have two Stage IV cancers. The breast cancer is the most agressive though, now being in breast, liver, and bones. The bones are giving me the most trouble. I have 6 tumors in my spine and have recently found out that it has now reached my skull too. Collar bone, shoulder bone, and rib recently broke due to the cancer, they called them pathological breaks. The ones in my legs and ankles are acting up now making it hard to walk but I'm stubborn and keep on doing as much as I can every day. Right now I'm trying to put a book together for my sons to make it easier for them to find what they need after my death. I feel this will give me a greater piece of mind that I'm done dealing with all this death stuff and can start doing more of the stuff I want to do. It's about to be spring here in the south and I can't wait to start working in my yard again!  I've planted so many of God's beautiful flowers over the years and am very much looking forward to seeing them bloom again. Looking forward to walking around flowers with grandson Carter later this month and hoping to get to do the same with my grand daughter Zoey once she can walk, but I've got to wait a little while for that since she's not quite five months old. I've got a lot to live for so I'm fighting this cancer thing with all I've got. Hanging in there for a little over seven years now. 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi

Good to see it's working well for you it's great to hear positive news. 

I've had my first circle without any problems fingers crossed it continues. This is the last chance saloon  for me so everything rests on Eribulin to sort my liver out.

I haven't walked my dog for so long and I miss it so much, dog walking is like therapy it just clears your head especially on a beautiful day like today.

My mobility was affected by fluid build up and the cape and I've never really got my strength back.

In have sat in the garden for a few hours which was fab. 

 

Vicky

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello all, I received CT scan results today after 3 cycles of Eribulin which started mid December. (The first was abandoned though due to low neutrophils and the other 2 needed me to have an extra week to recover neutrophils sufficiently well to continue treatment) But despite not following the best practice standard treatment programme, results still show stable! Phew! I now have three largish liver mets with multiple small liver mets ones too and a single bone met which has always stayed stable from the beginning when diagnosed secondary from the start in feb 2014 (liver and bone.). The third liver met grew when Capecitabine stopped working (sometime after cycle 17 (when a mid may scan was stable) I completed 22 cape cycles in all then a mid nov scan showed the new one which had grown from nothing to 21mm. So in my book as I was not on a working treatment for possibly 6 months Eribulin is very positively working! Double phew! I’ve been completely ‘normally’ well on it too and the only not so great side effect is lack of hair and eyelashes. I’m not completely bald though as it stopped coming out after the first infusion of the second cycle and I can just get away with a wide headband. Good luck to all others now on Eribulin. Take time to enjoy the lovely weather! I’m going to take the dog for a walk now something I had to stop doing while on cape because it made my feet hurt too much and I’ve just spent the last week with my lovely horse too so all good! X

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Lorraine

I haven't had any bad side effects from the Eribulin as yet. Had the 2nd yesterday and now have a week off.

Have you rang the hospital? You should if you have a temperature and get them to them to check you out.

The steroids are helping and I'm having days of good appetite and I managed to get up the stairs last night without gasping for breath so hoping a little bit of improvement in my general health. I'm feeling much older than 47!.

Hope you temperature settles but best to get the experts to check you out.

All the best

 

Vicky

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Vicky

Sorry to hear your news. I hope Eribulin is the answer for you.

I certainly hope it is for me.

I started on Thursday but havebeen feeling rough since.  Headaches and my temperature keeps spiking.

How have you been?

Hello to all you other ladies in this thread.

Have moved from Paxitaxol thread.

Best wishes.

Lorraine x