bless you
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.
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.??
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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
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
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
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
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!!
I’m so glad to be hearing good news about no further spread from so many!
I have one more cycle before CT scan (it will be more first scan since starting Eribulin) I wish I could say I’m optimistic, but tumor markers came down and went back up, I developed a mysterious rash on my left upper arm last week (it came and went within a few days but looked very angry), I have a bloated feeling and some swelling in my lower legs, and worst of all the pain has returned to my right upper quadrant. It mainly comes on in the evening.
I have an oncology appt next week, so will discuss all this with MD. Part of me is hoping she’ll say lets do the scan early, just because I’m curious. We haven’t talked about “what’s next” if Eribulin doesn’t work and hopefully won’t need to…
Hanging in there,
Laurainboston
Very saddened to hear that Moijan, who started this invaluable thread, passed away last month. She had such good advice and we often Pm’d. Like me (23 cycles) she was on eribulin for a long time so was able to help others with their worries. You will be missed by us all. Rest in peace Moijan xx
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Hi everyone,
Thank you all for these posts - I am new to the forum so not sure what i’m doing!! But all your advise, info and tips have been very helpful,
I am just about to start on Eribulin next week. I was dx with ER+ BC in 2013 with liver mets. Have had lots of Chemo, both iv and tablets over the last few years. Now have bone mets and a few new liver mets so just had weekly paclitaxel for 14 weeks with mixed results (some reductions in tumours but also some increases) so now my onc wants to try me on Eribulin. I used the cold cap for the paclitaxel and have lost a lot of hair but have just enough of a covering to get by without a wig/scarves. Been told I can’t use the cold cap with Eribulin and as i’m already thinning am worried my hair will be a gonna if I don’t cold cap. I have an 8 yr old and 11yr old and losing my hair is a really big deal to me and the kids.
Was wondering how I could convince the nurses to let me continue with the cold cap.
Jo - you said cold cap has worked for you and you were thinking of stopping using it now. Did you have to fight to use it in the first place and have you stopped and if so what are the results?
Also had terrible neuropathy with paclitaxel - dreading it continuing on Eribulin. Otherwise hoping this will be more tolerable.
Hi
Re hair loss on eribulin- I had 23 cycles of eribulin and didn’t cold cap. As Nicky says, the treatment literally takes 7 minutes to administer, using cold cap would have added hours to time in chemo unit so I didn’t bother. My hair was shoulder length & very thick before eribulin (Had returned quite nicely after docetaxel in 2014) - it thinned ever so slightly after 2nd cycle & then continued to grow throughout 23 cycles. I am now on paclitaxel & lost it but embracing the turbans.
Neuropathy was worse on eribulin than paclitaxel for me. I had numb toes most of the time & no feeling in my lower legs on several occasions. On paclitaxel it seems to be confined to toes only. Everyone is different!
Wishing everyone starting eribulin all the very best, as chemos go I found it very tolerable.
Helen x
Thanks Jen and Nicky, going to see if I can use the cold cap for the first 2 cycles and see what happens - that’s if they’ll let me! I have a wig just in case (although I hate it with a vengeance!)
Great to know about the steroids - I really don’t like them. Sleepless nights and then a day of tears and depression when they stop is sometimes worse than the side effects of the chemo. So after your advise i’m going to ask to try without them.
Thanks so much for all your advice - it’s only those that are going through this that really understand. I have an amazing hubby and fabulous sisters but it’s hard for them to help sometimes.
Starting Eribulin next Tuesday - ? it works for us all and everyone stays well.
Claire
Xx
Thanks Helen and good luck on paclitaxel x
I’m changing to eribulin next week. Can’t find much info on it? How are SEs? Xx
I am now 66 & was diagnosed with Stage IV Breast Cancer in 2012. It has spread to several areas of my bones, spine, ribs, thorax, & pelvic. I’ve been on Eribulin, (Havelin), since February, 2018 after trying all other meds that were being used like Taxotere, Arimidex, & even the Red Devil along with several others, all of which were not effective. My last pet scan was done in September, 2018. This is the first time that I showed no activity & the cancer area in my breast has decreased in size. At this point I don’t know if I will ever be able to stop the chemo treatments but as long as I continue like this, I am a happy camper.
Hi there ladies new to the forum so please bear with me. Im not great with tech lol
Helen44 while you were on the eribulin did you have the 23 cycles in a row or did you have breaks?
I’m on my third cycle and hoping to stay on it as long as i can to get the most time i can.
Any sucsess storys would be lovely i’m a worry wort. Xx
All the best to the newbies on eribulin. I had 23 cycles in a row Angiex before moving to paclitaxel. I found it very tolerable & it kept me pretty stable until the last couple of cycles when liver mets increased a little.
Helen x