Neuropathy while on Eribulin

angg66

Hi all,

I've had mets in the the bones & liver for a few years now. Over the last 3 months I've been doing chemo (Eribulin). The side effects have been ok. But over the last few weeks I've noticed some numbness of my feet. It was usually when I rest and put my feet up. But today I woke up with numbness in my right calf muscle and some numbness in my right arm too. it feels like the numbness is travelling up my legs and now my arm. I know it is neuropathy as it is one of the common side effects of Eribulin. So what happens if this neuropathy gets worse? Do they stop my chemo indefinately or permanently? Anyone had the same experience?

Thanks
Ange

Afraser

I had peripheral neuropathy, so only in hands and feet not elsewhere. My oncologist was reluctant to stop chemo ( I was two thirds through the course) but agreed to monitor on a week by week basis. But that may not help if you are on a long course of treatment. I would suggest talking to your oncologist soon and getting further advice. The worry can be as bad as the actual impact. 

Jlb

I was on Eribulin for 10 months. I was feeling great. The lesions in my liver reduced by a third in size each 3 months and the lesions in my lungs disappeared. I was feeling healthy with no pain and plenty of energy.

Neuropathy in my feet was slowly progressing up my legs so the dose was dropped by 10% for one round and another 25% for the next 2 rounds. I did not think I was that bad but was advised I could end up in a wheel chair with rapid neuropathy progrssion.

Unfortunately my scan last week showed significant progression of the cancer in the liver and the images from my bone scan today do not look good.

There are only 2 chemos left. One causes neuropathy and one causes heart damage which I already have. 

I was diagnosed in 2008 with metastisis in 2012. Will see my oncologist in 2 days to see where to from here.

Hopefully there is another chemo out there that is effective like Eribulin without the neuropathy.

I empathise with your concerns.

Tennille

I am also on Eribulin. I hope to stay on it as long as I can as I have the side effects so easy to manage. I do have a bit of neuropathy not bad but my legs feel numb to touch. My onc said they only stop if you start falling over and have balance issues. I am in Perth and I am sure different oncs have different opinions.

angg66

Thank you everyone for your responses. I went to do chemo today & when I mentioned that the numbness in my legs & arms is getting worse the nurses called the locum oncologist (as mine is away on a conference). The locum wasn't willing to make a call regarding reducing the chemo dose so I was sent home without doing chemo. Now I have to wait until Tuesday next werk to see my oncologist. The joys of cancer & chemo! What is worse - the disease or the treatment?? 

Tennille

My Onco also put me on Vitamin B12. I use  Bioceuticals Spray

angg66

Thanks @Tennille, I will ask my oncologist about using B12 too. 

angg66

Hi all,
Just to update you all on my situation. I saw my oncologist two weeks ago & he agreed to reduce the dose of Eribullin by 25% due to the neuropathy. I did two chemos at that strength. But when I met with the oncologist again this week, he was concerned about my numbness. He suggested neuropathy from chemo usually starts in the toes & fingers and then moves up the leg & arm. But my numbness is in the right leg & arm (not toes or fingers). So he sent me to do an MRI on yesterday. The test was supposed to last around 1 hour. I was on that table for 2 hours. I am now very scared that they have found that the cancer is more wide spread than thought and/or the numbness is something else. My brain has gone into overdrive!! I don't get the results of the MRI until mid next week. 
Ange 

LMK74

Hi @angg66, I hope you get good news from the mri scan. I can only imagine how worried you must be. The waiting is the worst.
Xo

jennyss

Dear @angg66, Hear from you later in the week. Best wishes from jennyss

Mollygirl

@angg66, I know its impossible to not think the worst but keep a glimmer of hope. Best wishes, thinking of you. Xxx

wendy_h67

Hi, just started on Eribulin yesterday,  so far so good. I couldn't believe how quick it was to administer.  I have neuropathy of the feet from previous chemos so I hope I can cope with this chemo and more important I hope it keeps my bone mets stable. 

angg66

Hi everyone. I met with my oncologist yesterday about the MRI results.  Good news - no new growths & the existing mets appear stable. No evidence of it in my brain either! Also I do not have neuropathy from chemo. It appears the numbness in my right leg is referred pain from my lower back. Go figure!! So will continue with Eribulin at full strength again for as long as it is working. The joys !!! 

wendy_h67

I'm so happy for you. What good news.  I have just started on Eribulin so I'm  hoping for some good news too.  Just to stay stable for a while would be good.

wendy_h67

@ Jib sorry to hear your news.  I hope you have found a chemo that will work for you and not have too many nasty side effects. Wishing you well.