Sunday, May 12, 2013

Side Effects of Halaven (Eribulin)

I took this shot in Racine, Wisconsin last week.....I was just taking pictures of the architecture and laughed when I saw that I had captured my reflection in the window.  It was a wet, grey day.

I have completed my third cycle on Halaven (eribulin) and started my fourth...I have found that every other treatment just hammers me.  Because it drops my red blood cell count so low, I am often out of breath and I spend the third through 5 day sleeping  A lot.  Like 15 hours...and even then I'm not able to do much when I'm up.

The first treatment I received, I got a shot of  filgrastin (Neupogen) to elevate my white blood cell count.  My red was depressed as well..but they let it go.  After one dose of that, my counts were good.  The second series, I had to skip the second injection (which is put into an IV line) because my counts were low.  Still, I have been dropping tumor markers at a good rate.  I won't be allowed a PET scan until Sept. to see if it is really working...if then...per my insurance....although by then I will have run out of insurance.

Other side effects have been do-able.  I have lost my hair, although I'm told by  a lot of people that it often comes back before you finish, and that is only supposed to happen in 48 percent of the people on it.  I have increased neuropathy (in my case just numbness) in my hands and feet....always a problem.  I have increased lacrimation....in other words my eyes tear up and drip...which also causes a drippy nose.

I have nausea (which goes away pretty much after my week off and comes back again just before I get my second dose in a cycle), heart burn (which is handled by omeprozole--aka Prilosec), periodic hiccups, and burping (oh joy).  I also have severe cramping of some muscles, particularly my hands and jaw, which we are trying to figure out.

I also have lost my sense of taste, yet again, that starts coming back after my week off....only to lose it again.  The lack of taste and nausea has meant that I have been losing weight, which isn't a bad thing. It isn't a problem yet....until I put on the new pair of smaller pants I bought and discovered I can no longer wear them without a belt...That's OK.

I'd like to be able to do some more exercise...I am going to have to concentrate on going back to qi gong, which for lack of a better explanation is a form of Tai Chi...very slow, controlled movements which seem to do a lot of good for me....only I'm embarrassed to do them when Carlos is around.....so he really really does need to find a job and soon!

All in all....except for the severe sleepiness, I am able to do quite well on this.  I doubt I could get a regular job as I don't think I could handle it...with all the fatigue and weekly doctor's visits, but I have to say other than anoyances, I'm doing OK on this drug.

10 comments:

  1. Hi Lisa,
    I just started taking Havalen- had my 2nd treatment two days ago and also feel hammered. The one very weird symptom which hasn't shown up in the literature is the jaw thing- hard to explain but I could work my jaw very well, it was tight and the muscles were involuntarily contracting. Is that what you experienced? If so, has your doctor recommended anything? I'm not looking forward to that every week!
    Congratulations on your long-term survival. I've been dealing with it eight years now and hope they'll find us a cure soon! Could you email me at susiebird2@gmail.com? That would be great!
    PS I am also an artist- especially fabric art!

    Best,

    Susan

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  2. Hi there. Also on Erbulin. I am getting my second injection today. Last week was rough. Very sick and tired which makes me feel down. I seem to be having a hard time kicking the funk this time.

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  3. Hi! Stumbled upon your blog looking for Eribulin info. My mom was diagnosed with triple neg BC in Jan 2003. It's come back 5 times (chemo and radiation each time) and we discovered in May 2012 that its in her lungs, brain, and some lymph nodes. She changed oncologists (I was finally able to convinced her!) in October 2012 and she was immediately started on Eribulin. She really has had no noticeable side effects. No fatigue, no nausea, very minor numbness in finger tips, but she had that before going on eribulin. She had already lost her hair from the chemo the previous oncologist had her on, but it's grown back. She's been on Eribulin for 18 months now and her quality of life is great. (still babysits my 7 and 3 year old occassionally, travels, works PT). Her positive response to the treatment has been more than we ever expected. But I kind of feel like the "other shoe" is about to drop since everything is going so well. That's why I'm surfing the net trying to find out how long others have been on this treatment. Her current oncologist is about to put her in a clinical study which will require her to be off Eribulin. That's scary to me since she's done so well. But hopefully the new treatment (enzalutamide-it attacks androgyn receptors) will give her as positive if not better results as she's had with Eribulin. If not, I pray she can go back on Eribulin and continue the success we've been having. I can't find much info out there about how long women are taking Eribulin before it stops working. So I thought this info would be beneficial to you and your readers. I also wanted you and others to know that it has really positive potential. I wish you the best in your continued fight!!!

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  4. Thanks for this post, it sounds like what you're going through is rough. I'm hoping the medicine's side effects recede in time. Does your health insurance or life insurance cover these meds? When I was getting life insurance in Burlington MA, the agents worked with me to make sure I had coverage for life-changing illnesses like this. Thanks for your courage in blogging about all of this.

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  5. Cured of TNBC!
    I want to take this time out as a cancer survivor to encourage women out there still suffering from this with my story on how i got a cure. The sad news about it is that i was diagnosed on my 36th birthday in 2008 and with stage 3 TNBC which after i made research was a very aggressive form of cancer at that point i decided and told myself i was going to die and that the end has finally come. All my life i never thought of having breast cancer because i was very active and i worked out at the gym several times every week and my diet was okay. In my search for a cure after 6 years of diagnosis and even after chemo which i did twice spending thousands of dollars but to no avail, until a church member told me all about Dr Aleta a herbal doctor that specializes in treating TNBC, who could help me with a permanent cure, i doubted this at first but i later gave it a try following her methods and instructions. It took 3 months and after it all i felt normal but still went for diagnosis and i was clean today i am proud to say i am a cancer survivor no nodes and i am totally free the new diagnosis confirmed it. Do not die in silence or ignorance because of breast cancer just simply reach her on aletedwin@gmail.com and also for any related cancer illness don't be shy just speak to her today.

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  6. ALL THANKS TO DR WILLIAMS FOR GETTING MY WIFE OUT OF FIBROID WITH HIS HERB One of the greatest moments in this world is when you see your own wife put to bed, this awesome moments makes you a man and not just a man a real man. My wife suffered from Fibroid which made her unable to get pregnant and give us a child for almost 18 years with multiple surgeries done and none seemed to help the situation. I almost gave up but due to the love i had for her because i married her a virgin i had to find a way to help her. I told a member of my church who recommended Dr. williams to me, i contacted him and he sent me a medicine and this medicine shrinked it naturally in a weeks it was like magic but it’s science. I am happy writing this because he delivered a baby girl. Do not loose hope too soon contact him on drwilliams098765@gmail.com and i am confident she will help you too.

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    Replies
    1. What's this got to do with breast cancer?

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  7. One of the greatest moments in this world is when you see your own wife put to bed, this awesome moments makes you a man. My wife suffered from Fibroid which made her unable to get pregnant and give us a child for almost 20 years with multiple surgeries done and none seemed to help the situation. I almost gave up but due to the love i had for her because i married her a virgin i had to find a way to help her. I told a member of my church who recommended Dr. davismartin to me, i contacted him and he sent me a medicine and this medicine shrieked it naturally in weeks it was like magic but it's science. I am happy writing this because she delivered yesterday a baby girl. in case you need his helping hand email him directly via his email,
    drdavismartin62@gmail.com or add him on WhatsApp via this number +2348077210007.

    ReplyDelete
    Replies
    1. What's this got to do with breast cancer?

      Delete