I’ve just spoken to my oncologist about the results of my liver biopsy and there is no change in the receptors, it’s still hormone positive and HER2 negative, so no new treatment pathway and I’m getting through the options quite quickly at the moment.
The oncologist is putting me on eribulin (halaven) iv chemo next. It’s a 21 day cycle with infusions on day 1 and 8 and then a week’s break. Has anyone had this, any tips? If you’ve had was it administered with any other drugs? Any advice gratefully received 😊
Julie
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Julie2233
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Hi Julie! I'm also ER+, HER2 neg and have extensive liver mets. I've been on Abraxane since Feb and got an "everything stable, liver mets shrinking a little" CT report in mid-June. But since mid-July my CA15-3 is climbing again, which for me has been an accurate reflection of what the cancer is doing.
So...just in case, I've been researching the drugs on the list of "next options" I got from my onc several months ago. These include Piqray (I have the PIK3CA mutation), Affinitor, Gemcitibane, Tamoxifen and Eribulin. I've been pleasantly surprised at how promising Eribilun sounds, especially in reducing liver mets. There was an interesting study done in Italy on older MBC patients with liver mets:
The side effects seem similar to Abraxane (hair loss, some fatigue, low counts) but less than Piqray and Affinitor. And there are some studies from Japan and the U.S. showing that a biweekly schedule can be just as effective as days 1 and 8 of a 21-day cycle. They are also studying lower doses, especially for people with liver impairment. They use something called a "Child-Pugh Score" to determine liver function and dosage.
The actual administration seems pretty easy, a 5-minute "push" IV as opposed to a drip. I haven't seen anything about other drugs being administered with it, hope there are some Eribulin veterans here who can fill us in.
One other thing to note is that, rarely but possibly, Eribulin can cause QT Prolongation, or irregular heartbeat. It seems common to get an ECG before beginning treatment and have your heart monitored periodically while on treatment.
If you don't mind, could you share the treatments you've been on? Since Oct 2017 I've gone through Letrozole (15 mo), Faslodex/Ibrance (2 months, didn't work), Xeloda (7 months, but probably should have stopped at 5 before the liver mets took off again), and now Abraxane. I wish someone would figure out an immunotherapy for HER2 negative soon!
Please keep us posted. It is so helpful to share these treatment changes and experiences. I'll be thinking of you!
I’d been on tamoxifen for 12months when the mets were diagnosed. I then had 17 cycles of ibrance and faslodex, with 1 cycle of ibrance and letrazole in the middle. Then progression from the bones to the liver was found. I then had 3 months of afinitor and exemestane. Then I took part in a trial of cabazitaxel which was stopped after 3 cycles and then 3 months of xeloda.
The oncologist said that there were other options if this didn’t work but also said that their possible effectiveness had to be weighed against quality of life. I was left with the impression that if these didn’t work he’d be disinclined to prescribe further. I will of course argue against this.
Hi Julie, I’m also ER+ & Her2-. DX with MBC since Jan 2017 with Mets to lungs. Ibrance/Faslodex for 18 months (best TX). Then Mets to bones in hips/legs. Had radiation & then Xeloda 2.5 months - didn’t work. Mets spread to liver. Had Taxol 8 months, lost hair, fatigue, anemia, neuropathy, and thigh/leg lymphedema. Then Liver Mets grew & one new lesion. Started Eribulin on May 1st, & just finished 5th cycle. Scans on July 22, showed slight decrease in liver Mets and lung Mets, and bone stability. I experienced terrible fatigue & found out I have anemia. Been on iron supplements for 3 weeks & now feel better, however still get very tired for about 2.5 days after TX. I’m especially tired with aches when I get Xgeva shots every 4 weeks. Neuropathy continued from Taxol, but my hair is SLOWLY returning. I even have eyebrows. I manage to do exercises every day unless I’m exhausted. I do water exercises and swim at least 3x week. I hate the tiredness, but I’ll take it if I can have a decent quality of life.
Julie, my advice is to listen to your body. I’ve always been athletic and on the move, but now I must give in when I’m tired, so that I can recuperate. I don’t like being sedentary, but I need to rest. As soon as I’m better I’m on the move. This is my 3rd chemo & I also wonder how many other Tx my oncologist has up her sleeve. She says she has other Txs. I just hope I can stay on Eribulin for a while.
I wish you the best on this treatment with minimal side effects. Stay strong.
Sylvia thanks. It is a really helpful response to Julie's questions and one I am asking myself now too. Eribulin will be my 6th treatment in 2 years... I really struggled on the last one taxol so was hoping this one would be less tedious but sounds like I need to brace myself!
Hi Julie. Just caught up with you. After 6 months on taxol I have serious progression in bones and liver so due to start eribulin.How do you find this treatment? They also mentioned possibility of a trial " tropic' I think. Have you heard of it?
I’ve done my first cycle of eribulin and so far so good. Mine is administered intravenously but the actual drug only takes 5 minutes. I also get antisickness and dexamethasone for anti sickness. With dexamethasone tablets to take home. I haven’t needed to take any anti-sickness tablets though.
I have the infusion on a Tuesday afternoon and I feel fine for the next couple of days but I’ve noticed that on Saturday I feel tired and as though I have a cold starting and a little queasy. By Sunday lunchtime it’s gone. The worse thing for me is an unpleasant taste and a couple of mouth ulcers on the Saturday. I’ve also had dry eyes.
It’s my week off this week and I’ve felt a bit out of sorts and tired. I appreciate its only been one cycle but so far so good. And my blood results have stabilised. Oh and my hair is shedding but I always seem to get that when I start a new drug.
I haven’t heard of a trial tropic, but here in the U.K. our treatment options tend to be more limited.
Thanks Julie. Really helpful. I am in the uk too ( London)... I am not putting too much hope on the trial it is the 3rd time in a year they dangle one in my face before taking it back ... I have learned to manage my own expectations ;-)!
I’m in the back of beyond on the Welsh/English border.
I was included in a trial for Cabazitaxel (January to March) my bones were stable but I had progression in my liver So it was stopped.. Before the trial I was told taking part in it wouldn’t preclude me from treatment with other taxels, but now my oncologist is now saying that because the cabazitaxel didn’t work he won’t try paciltaxel. I’m suspucious about this - that they don’t want to cloud the long term outcome results of the trial. Call me cynical.
I haven’t been offered access to any other trials. And he is talking about stopping treatment if this doesn’t work, which I’m not happy about.
Hi Julie & Marieleb. Hope you're doing well on your treatments. I see you're both from the EK. I'm in North Carolina, USA. My fatigue moments have diminished on Halaven. However, I want you to know that I take Ritalin, 5mg 2x day for energy. It helps me even though it is a pediatric dose. Last Friday, I had infusion. On Saturday, For 1 1/2 hrs, I did water exercises and swam. Felt really good, so I did my PT exercises. I did the same on Sunday & Monday. Then on Tuesday, despite the Ritalin, I fizzled at about 10am. Spent most of the day in bed distracted by 1940 movies. Next day, I'm ok. So, I never know when I'm going to be exhausted. On Halaven, my leg/thigh lymphedema has almost resolved with the help of drainage massage & pump. The foot neuropathy has not worsened. I will have scans in mid October. I hope results in lungs, bones & liver are stable. I don't want to change chemo again. My best to you both. Sylvia
Thank you, it’s really interesting to hear that you’ve been given Ritalin.
Interesting that your lymphoedema has resolved. I have lymphoedema in my left arm that has been relieved by the LVA operation but I still had swelling in the back of my hand which I’ve just noticed has gone since starting the Halaven.
I’m now on my third cycle. The first cycle was a breeze, no nausea or unpleasant side effects apart from a sore mouth and nasty taste.
I had the second cycle but only had one day of the cycle because my liver enzymes had gone through the roof. That time I had a couple of days of nausea, lowered energy levels and a fuzzy head, my mouth was fine but the nasty taste returned and my hair is shedding quite heavily.
The strength was reduced for cycle 3.
Last week was awful but before I worry you I think it was caused by my own stupidity. I don’t think having the flu vaccine 2 days before chemo was the most sensible thing I have ever done! I don’t recommend it!
Back on my feet today and I get the second infusion of cycle 3 tomorrow if my liver enzymes are behaving.
Leaving aside last week, I’ve found it manageable. The chemo infusion takes 5 minutes but I also have anti-sickness and steroids so the whole thing takes about an hour. The steroids make me buzz. I had to take a couple of days off work last week but apart from that I’ve continued working, though I have 3 weeks worth of ironing sitting in the basket and the house could do with a bit of attention.
Of course everyone reacts differently to all these different drugs. In a way I feel quite comforted that I am getting some side effects because I’m hoping it means it’s working. A silly thought I know!
I think some oncologists set a number of cycles, mine has said that if it’s working and I can tolerate he will continue. To be honest my oncologist is not the cheeriest of souls and his actual comment was, I don’t think this will work but you can give it a try. 😊 Think Eeyore out of Winnie the Pooh. The link in macromum’s response above gives a much more optimistic view of this treatment. It is iv chemo but I’m finding it manageable - the side effects I had from affinor were far worse.
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