Member
Posts: 3
Registered: ‎03-08-2018

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi withasmile:
It is encouraging to hear that you were able to take a break from chemo after being on Eribulin and that it worked a second time as well. Positive stories like that are part of what keep us fighting the fight. Thank-you for sharing.😊😊
Member
Posts: 215
Registered: ‎10-08-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hello golfjunkie,

 

glad you've found support with this thread.

Eribulin certainly is an easier chemo when you've tasted a lot of the others on offer!

 

My BC has chopped and changed over the years from OE neg to pos and back again, so I've had the joy of sampling most drugs!

I started Eribulin 2016 when my BC became stage 4 Triple Neg Lymphoma with para-aortic and liver tumours.

It shrunk the liver ts completely, and reduced the para-aortic ts.

I asked for a chemo break with 3 month CT scans to check progress and had nearly a year off chemo. I re-started Eribulin this year when the tumours re-grew, and latest scan showed some hopeful reduction.

 

So many of us have been battling for so long - and long may we continue!

 

 

Member
Posts: 215
Registered: ‎10-08-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hey Helen,

 

I hope everything is going steadily for you.

Those nervous days of starting Eribulin seem so far away now don't they?

 

The taxel chemos are pretty heavy going - I had a course prior to Eribulin - so sending lots of empathatic hugs your way.

xx

 

 

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

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi jo, you can change your name if you want...ask the mods gelp

 

loads of love and hugs

 

Moijanx

Member
Posts: 3
Registered: ‎03-08-2018

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello everyone. I gave been following this thread for 6 months and have finally decided to join.
It has been helpful to me to read about all your experieces with Eribulin and other chemo Tx.
Maybe my story will help others.
Initial diagnosis was stage 2 breast ca..HER2 neg, ER positve in left breast in 1992. Then in 2005 HER2 neg, ER neg breast ca in right breast.
In 2015 pathological fractures to both arms ( same time) from cancer spread to bones thus Stage 4.
Currently have liver involvement and have just finished 6 cycles on Eribulin.
Of all the chemo I have had in my lifetime Eribulin has been the most tolerable.
Liver MRIs have shown the liver mets have stabilized on Eribulin. I find it quite tolerable overall and the longer I am on it the more tolerable it has become regard fatigue, nausea and appetite.
The main side effect for me has been numbness in hands and feet and in the beginning fatigue.
I am in my 26th year of battling breast cancer and feel blessed to have been able to fight the fight for so many years.
I would be especially interested in hearing about anyone recieving immunotherapy drugs in conjunction with Eribulin and of course all your stories regardless if just on Eribulin or other chemo therapies used to treat stage 4.. breast cancer.
Member
Posts: 4
Registered: ‎01-08-2018

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Okay I now see that some of us use a member name. I had no idea my JoJorules would pop up as my name. Please everyone just call me Jo. Diagnosed August 2016 with Stage IV triple negative bc. Had first diagnosis in 2006 with estrogen positive stage 2. I am still overwhelemed by it all even though it is now about 2 years. Live in Pasadena and have City of Hope in my backyard.Very thankful for that.
Jo
Member
Posts: 4
Registered: ‎01-08-2018

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

I have been on eribulin and evromilus ( clinical trial) since December. My right hand falls asleep if I hold a book for too long. My feet are warm too. But I am getting progressive symptoms with the hands and arms on the erbulin.
Member
Posts: 4
Registered: ‎01-08-2018

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi 

Can you tell me your name? I am new to the forum so if your name is listed somewhere, I can't find it. Probably staring at me in the face. It feels good to connect with someone with my diagnosis. I really appreciate your feedback about your hair. If i stay on this clinical trial I will stop using the cold caps. My insurance was suppose to pay for them, but it  is not looking good. The company I use here is US has you pay for the first 8 sessions and then the rest are free so I thought that was a pretty good deal for those of us who will be on chemo for an indefinite period of time. Thanks again... 

Jo

Member
Posts: 4
Registered: ‎03-08-2018

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

bless you
Member
Posts: 7
Registered: ‎29-07-2018

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi all --

So happy this thread is active with eribulin veterans and newbies like me (just finished 3rd tx like Hlarsen)

 

Someone mentioned cold capping and it's interesting that various research has indicated it "helps" and many insurances in the US will cover part of the cost. I see it being done at Mass General which is where I go for treatment. To me it's not worth the added hassle and cost, esp since it may/may not work. With the rate I'm losing hair I"m headed for wig and already picked out a cute one. I have a 14yo and need to keep a presentable appearance so as not to be an "embarrassment" (giggle)

 

My breast cancer was stage 2 when dx 2011 but mets 2016 and now four areas of liver mets in 2018 which have grown on Ibrance and Navelbine. Pain had been an issue as liver was enlarged but I have a great pain med regime worked out thanks to pallliative care MD. Anything that keeps those mets from growing will give me hope --I guess we'll see after 4th cycle.

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

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Helen

 

nice to see you here...how is pac going? Didn’t work for me😰

so on carboplatin

 

even less pleasant and with novweeks off

 

moijan  😭

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

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello Hlarson...

 

welcome to this thread.  What a lovely positive and inspiring post xx

 

hope things go well for you on Erib..it killed mine atoepoint but sadly grew back later, but had about 21 months

on it.

 

actually, I got sore fingers which recovered well, I must have got the tiredness,but really I can’t recall...this chemo is an absolute joy, compared to my current one! I recall it very fondly.

 

alto I began the thread..Withasmile is now likely the current lady who would be good to discuss s/e and strategies if need be...I lost my hair, but it started regrowing almost immediately! I lost my lashes and eyebrows, got them back now tho.

 

 

very very best of luck...and enjoy.xx I miss this chemo

 

xxx

 

Moijan🙏🤗

Member
Posts: 344
Registered: ‎18-01-2013

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi everyone
A warm welcome to the new Spongebobbers on this thread. Just thought I'd share my eribulin experience if it's any help.
My hair was shoulder length so had a short pixie cut, it thinned after 1st cycle but then started to grow and was back to shoulder length when I stopped eribulin after 23 cycles. I did have neuropathy which came & went with no real pattern and I did have the strange no feeling sensation that Withasmile talks about in calves and thighs. No nausea. Loss of taste on day 2 & day 9 only. Fatigue sporadically. All in all it was an ok Chemo, certainly better than paclitaxel which I am on now (no hair whatsoever!). I have bone & liver mets, dx straight to stage 4 in Dec 2012. The liver mets decided to multiply somewhat towards the end of eribulin treatment hence switch to paclitaxel.
I am on Isle of Wight with an oncologist from Southampton.
All the very best with your treatments lovely ladies.
Helen x
Member
Posts: 215
Registered: ‎10-08-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hi Hilarson,

 

I hope Eribulin helps you- after all the other chemos it seems a much gentler regime.

I was first diagnosed 1995, so like you I've worked my way through most of the available drugs!

Its amazing when you look back, just how far treatments have come, and attitudes have changed.

 

The fatigue seems to come and go, I've not been able to work out a pattern.

Good luck with everything

x

 

 

Member
Posts: 4
Registered: ‎03-08-2018

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi everyone- I just had my 3rd dose today. 2 weeks on and 1 week off. Only thing I have noticed so far is a pretty heavy fatigue off and on. No neuropathy yet and no hair loss yet. I am sure the hair will come out. I have never kept it. I have ER+ metastatic breast cancer. Diag 1999; 1st Met to bones 2008; mulitie bone Mets since and 6/2018 meta to lungs. I have had most every chemo over the years, both Iv and pills. So far this is good and I am hopeful this works! You are all warriors. Fight the good fight
Community Champion
Posts: 3,294
Registered: ‎04-02-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

[ Edited ]

Hi jojo

 

I  did lose my hair on Eribulin....but it started growing back..my hosp doesn’t use the cold capwith it as apparently there is no evidence it work...it’s avery busy hosp and cold cap, as you say adds a lot of time to either end

 

my treatments were about ten minutes with a pre and post flush, I was usually out very quickly indeedxx

 

good luck with everything

 

Moijanx

Member
Posts: 215
Registered: ‎10-08-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hi,

 

funnily enough, this morning I was reading up about immunotherapy with Eribulin. It does seem to have some good results.

 

I find the neuropathy fades away during my recovery week off. I also get a strange no-feeling sensation down the front of my shins and thighs.

 

Glad your TMs have decreased, hope it continues!

x

Member
Posts: 7
Registered: ‎29-07-2018

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi all --

Chemo routine for Eribulin here in the US sounds the same (day 1,8,15)

 

I was disappointed not to get into the trial combining immunotherapy (Keytruda) with Eribulin, but excited to know it's happening and hopefully with good outcomes! If results are positive they may open more slots. My oncologist thinks finding an immunotherapy and chemo drug that work together is the key to shrinking the tumors and progression free survival.

 

My tumor markers decreased after just two doses, so I'm encouraged Smiley Happy

I had the sensation of numbness in fingers of my left hand for a few days last week but thankfully that subsided. I know neuropathy is a side effect and hopefully won't be problematic.

Member
Posts: 215
Registered: ‎10-08-2016

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hi Jo,

glad to hear the treatment is working for you.

 

I too have Stage IV triple negative bc.

 

I found with Eribulin my hair shedded and got thin at the start, and so I cropped it short, but then new hair started to grow back in.

 

I had success with the cold cap, and didn't lose my hair for my first chemo back in 1996, but haven't bothered with using it on subsequent chemos.

 

Hope this helps- let us know how you get on

 

Member
Posts: 4
Registered: ‎01-08-2018

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi, 

My name is Jo and currently on a clinical trial with Eribulin and everolimus. I have been on this trial since December 2017. So far it is shrinking my tumors. I have Stage IV triple negative bc. I have used the cold caps for all cycles. I recently started to cut my cold cap sessions short by about an hour.  I have kept all my hair and have not shedded at all. I am playing with the idea of not doing the cold caps anymore due mostly to cost and inconvience. Does everybody lose their hair on eribulin? Or are there some people who don't? After 16 sessions of infusions, I am thinking I may be okay without the coldcaps. Was wondering what others think about this. 

Thanks, 

Jo