Member
Posts: 69
Registered: ‎27-10-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks Nicky. Just hope it keeps working. Side effects are kicking in a bit more now but can cope with that.

 

Bousy x

Community Champion
Posts: 4,507
Registered: ‎01-05-2012

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hey Bousy

Great news and a very welcome relief I’d imagine 😊 We all love a Stable Mabel so thanks for sharing with us and long may Eribulin work it’s magic. Enjoy the next few months between scans! Oh and a belated Happy Birthday, what a lovely present 🎁🎈🎂

Nicky x

Member
Posts: 69
Registered: ‎27-10-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Everyone,

Just got back from the hospital where I received my results from my 3 monthly scan. I am still stable after 20 cycles of Eribulin. It’s my birthday today so best present I could have. Take care everyone.

 

Bousy x

Member
Posts: 215
Registered: ‎10-08-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Well, another month has arrived!

How's everyone doing?

 

I've got my 3-month CT scan next week and results (hopefully) 10 days after, so I'll see whats going on and whether I change from Eribulin, continue or get a break.

 

Hope you're all still smiling, even if it is through gritted teeth

x

Member
Posts: 68
Registered: ‎03-08-2015

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Streaming eyes are so debilitating! Every time I look down my glasses are covered in tears. I have a tissue in my hand permanently. Even had someone say ' Don't cry' when I was walking the dog!!
Member
Posts: 215
Registered: ‎10-08-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hi all

 

re steroids: 

originally I started with steroids pre-med with the chemo, and a take-home pack twice a day for two days. I've since cut down to less than half dose.

I tried with no steroids at all, and had no sickness but the fatigue was too debilitating. I know my biggest problem is always the expectation of what I can still do while I'm having chemo!

 

I've been having bag leg pain like Nicky described and I think its caused by drop in red cells causing damage to the nerve sheath. I'm seeing the onc on Monday for blood tests and hopefully he'll explain it more scientifically.

 

Nicky, it wasn't until I read your post that I realise I've had a constantly runny nose and eyes!

 

Love to all

xx

 

 

Community Champion
Posts: 4,507
Registered: ‎01-05-2012

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Eribulin ladies

I was on this chemo in 2017 and had 8 cycles during which it worked well but an onc that I saw for a second opinion felt my bone marrow would only cope with 8 cycles so that was all I had. As it is my bone marrow is fine but maybe if I had stayed on yet another chemo it would have been compromised, guess we’ll never know! Anyway what I was going to say is that I started off having steroids after the infusion, and probably just before it as a pre med (I can’t remover exactly) but decided to not have them after the first cycle (day 1 and 8). I didn’t suffer any nausea or I’ll effects other than those that usually affect you like tiredness and some fatigue. I’m glad I decided not to continue with the steroids as I have a,ways felt really rough for a day or so when I’ve stopped them as you have to have them with some of the chemos I have had. As Laura has said, if you don’t need them there’s no point adding something extra to the mix however I know some ladies do take them and I understand why.

Good luck to all of you on this chemo, it is very doable but sometimes the SEs can get you down like the hair loss and in my case constantly runny nose and eyes, I spent a lot of my money last year on tissues! I know also that some of you have mentioned a feeling in your calf muscle which reminded me that I used to get really excruciating pain down the front of my shin. It was as if the muscle at the front had just contracted (as when you bend your foot up towards your knee) and the tendon that goes onto the ankle bone also tensed. It was so bad at times I literally cried and couldn’t stop it until it eased itself off in about 5 minutes. I’d forgotten all about that until the calf muscle was mentioned on here.

Nicky xx

Member
Posts: 7
Registered: ‎29-07-2018

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

[ Edited ]

HI all!

I had my 4th dose yesterday and it went without a hitch. Compared to Navelbine, which I was on before, I don't have any side effects with Eribulin administration so I can drive myself to and from which eases leaning on friends.

 

Initially I was prescribed steroid with Eribulin (4mg dexamethasone) I think to prevent/minimize side effects (nausea mostly, I think). I asked to have it lowered to 2mg, and now none at all as I'm not having any side effects I think the steroids are good if you need them, but if not, why add one more thing?

 

I may be one of the few that's destined to lose all my hair on the big E; I'm down to just thin, wispy strands. The other day someone called me "SIR" and even the dogs are giving me strange looks! Lots of days with a baseball cap on recently. I have a cute wig but with the hot weather, fake hair on my neck is not a good feel. I can put it in a pony tail or flip which I"m probably gonna do.

 

Too soon to know if Eribulin is doing it's job on the liver mets for me, but bloodwork and other indications are good.

Hugs to all!!!!

Laurainboston

Member
Posts: 68
Registered: ‎03-08-2015

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Just wondering if anyone else at Christies on eribulin? Are you having steroids? I'm on 8mg for 3 days. I'd like to wean off . Plan to chat to doctors next time. I've had 6 cycles but my dose has been reduced twice as my liver tests are up and down and it has hit me hard, although no nausea. I think dex can cause muscle weakness so given the neuropathy I wondered if it would not help. Alternatively I guess it might be reducing inflammation? Will be quizzing the oncs!
Phoebe xx
Member
Posts: 215
Registered: ‎10-08-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Helen-

 

'Currently looking after 3 of my grandchildren with husband and daughter and they are all taking a nap!!'

Made me smile big time!

 

Hoping the paclitaxel does its stuff and shrinks those liver mets

xx

Community Champion
Posts: 3,294
Registered: ‎04-02-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Was using on taxol._theymust have helped a bit,, have the feet but have t used

 

carbo.   Diff kind of pain, worse, but  will. Have to seeEACH MITTIS AROUND 100 TO BUY AND YOUU NEEED A COOL BOX TO TRANSPOT AS HOSPTS OFTEN DONT HAVW. FREEZERRS

 

I. UNDERSTAND CHRISTIE USES ALL THE TIME

 

MOIJANSORRY RE CAps b,lasted nuisance 

Member
Posts: 344
Registered: ‎18-01-2013

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Withasmile and Moijan
Thanks for your good wishes. On week 7 of 18 paclitaxel and ok so far. Feel much more tired these days than on eribulin. Currently looking after 3 of my grandchildren with husband and daughter and they are all taking a nap!! Nice for some!
I hope that it is shrinking the liver mets, they worry me far more than my bones.
Take care of yourselves x
Member
Posts: 215
Registered: ‎10-08-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Moijan,

 

how long have you been using the cold mitts?

Do you have feet ones too?

Would love to know your opinion.

I get awful Reynauds and I'm wondering if they would make it worse

xx

Member
Posts: 215
Registered: ‎10-08-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Phoebe-

 

the less said about capecitabene the better!

 

Hope you got through Moody Monday ok, Moijan and I used to compare our moody days, but for me they've either eased off or I'm just moody all the time and haven't noticed (and no-one else dares mention!)

x

Community Champion
Posts: 3,294
Registered: ‎04-02-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Did kill my liver mets, but sadly they grew again..we are all differentxx

 

m

Community Champion
Posts: 3,294
Registered: ‎04-02-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi girls, I have been using the cold mitts and the juries out but will let you know,

 

‘’another lady suggested that l glutamine can help and I’m trying that..but check with your onc.

 

m

Member
Posts: 68
Registered: ‎03-08-2015

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Yes the fatigue is really hard. It's my worst day today (Moody Monday i call it) I have finally accepted I just have to collapse and rest completely. Yes drinking loads is essential too
I will let you know how the mitts go. Could have done with the foot ones when my feet were burning up on capecitabene! ! Love to all xx
Member
Posts: 215
Registered: ‎10-08-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hi Phoebe,

so pleased to hear about about the shrinking liver mets.

 

The extreme fatigue is horrible isn't it, just total wipe-out. I can't offer any solution because as yet, I haven't found anything that helps.

I think 'rest, and drink lots of water' must be imprinted on my brain!!

 

Interested to hear if the cold mitts help the neuropathy as I've had it really badly these past two cycles (4th and 5th). Let us know how you get on

x

Member
Posts: 68
Registered: ‎03-08-2015

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi everyone good to read about your eribulin experiences. I have had a bit of a rough ride I think possibly because my liver mets are very advaneed and I seem to be very sensitive to the chemo. After 3 cycles though the liver mets were shrinking which ishould fantastic. I have had to have a 40% reduction in dose to cope. My main problems now after 6 cycles is extreme fatigue and neuropathy. I've just started using the cold mitts for hands and feet like the cold capping to see if it helps. Know what you mean about the weird calf sensation too!
Phoebe xx
Member
Posts: 3
Registered: ‎03-08-2018

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?