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Halaven - Day 1

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  • latte123
    latte123 Member Posts: 31
    edited July 2020
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    I did not do any icing!

  • LVGirl903
    LVGirl903 Member Posts: 12
    edited August 2020
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    So I was supposed to get the second part (day 8) of my first cycle of Halaven today, but got sent home because my white count was too low. I am beyond discouraged and upset right now. I’m discouraged because I couldn’t even get through one cycle before things started going wrong, and upset because it means I’m not getting the medication and things will have a chance to further progress now before the next one. Also not super pleased to hear I will have to go back every day for several days of injections after every treatment now. I’ve been fighting so hard to keep some semblance of a normal life, but if I have to go to the center every day, that’s all out the window.


    I’m sorry to complain- I’m not normally like this at all. Just having one of those days. Has anyone else gotten off to a rough start like this and still had success on Halaven? Because at the end of the day, I’ll deal with whatever I have to, I just need it to work.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited August 2020
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    Well I am in the same boat...kind of... I went today for my 2nd infusion and was sent home because my mouth is too bad...last week Saturday I developed oral shingles and it is THE most PAINFUL thing I have even had to endure. I am in tremendous pain. Ironically she said my Neutrophils looked ok - good...but then she said they were a 4?? I thought 4 is bad? Im confused.

    Anyway she didn't want to risk my mouth getting worse and to be honest I am glad. She called in Gabepentin for me (I will not take pain killers) and she called in something for stress because the pain is stressing me so bad that my blood pressure was 97/144 !!!

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited August 2020
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    Nicole, I remembered this thread about Halaven and hair. Although that is probably not at the top of your concerns right now. I have had shingles twice, and both times were when my body was under stress (postpartum and cancer treatment).

    https://community.breastcancer.org/forum/8/topics/873374?page=1#top

  • nicolerod
    nicolerod Member Posts: 2,877
    edited August 2020
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    Shetland thank you I just read through it. I definitely think my oral shingles were brought on by Stress and chemo...first 2 weeks of stressing because of the progression and new tumor in C7 completely freaking out (internally) and then starting a new chemo a week later...so yea. But I have to say the Valtrex (antiviral) has kicked in I am feeling better today ...I was told it takes about 3 to 5 days to kick in....the MO also is gonna have me keep on taking it at a lower dose after the 14 days for maintenance.

  • AmyQ
    AmyQ Member Posts: 821
    edited September 2020
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    Nicole, I cannot imagine oral shingles. That has to be killing. I have had shingles on half of my chest, to my underarm and to the middle of my back. I've had them since July 22nd and they're extremely painful. I would not wish shingles on my worse enemy. Gabapentin does a pretty good job of relieving the pain, but I'm just sick of the whole thing and wish it would end.

    Anyone reading this, please get the shingles vaccine!!! It should save you from unbelievable pain and irritation. I wish I had.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited September 2020
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    Im good they gave me Valtrex Antiviral...and I was great after that.

  • LVGirl903
    LVGirl903 Member Posts: 12
    edited October 2020
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    Hi Ladies,

    I've just completed 3 cycles of Halaven on a one week on/one week off schedule, and will be getting scanned next week.

    I just got my CEA and CA15-3 results this past week for the first time since starting Halaven. My CEA went down from 4.2 to 2.0, but my CA15-3 went up from 82 to 93 (it was 93 at the beginning of July, 82 at the end of July and now back up to 93 again.)

    Has anybody had one marker go up while the other goes down on this treatment? Wondering what that's about.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2020
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    Just finished cycle 3 and 1/2 and my eyebrows are now going too... :( ...... sucks

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2020
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    Grannax.

    I had hair loss (shaved it ) as you know... and also have now lost my eyelashes and eyebrows.

    The halaven cycle is 2 weeks on 1 off.

    I have felt pretty good on it I think the #1 side effect is Neuropathy.

    It works very well for liver mets, I was told that in order to get it you have to fail Xeloda and either doxil or another chemo..... Have you had that happen?

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited October 2020
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    Yes, X and all the others failed. Halaven is the only thing my MO could think of that I haven't had. I'm glad that it has been helping on your liver mets and I hope we will be twins in that regard.

    I hardly have any eyebrows left and what there is white. Lol So I'm used to that and I have found that I like eyeshadow best for brushing them on. I'll miss what lashes I have left but will probably be okay with eyeliner. I'm sure I'll get a new wig. I do have a cute short one leftover from last time.

    What pre meds do they give you during IV?💞

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited October 2020
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    I've had the shingles vaccine so hopefully I won't have that SE. Sounds horrible. 💞

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2020
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    I do not take any premeds..but my first round they gave Steroid (dexamethasone) and one for nausea...I refused that bc I have SEVERE consitpation issues. I have not really had any nausea.

  • wallaby715
    wallaby715 Member Posts: 183
    edited October 2020
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    Good Evening All,

    I am moving over to this thread as I am now in the FORTRESS clinical trial, a pivotal Phase III study evaluating balixafortide (POL6326) in combination with eribulin (Halaven) for the treatment of patients with HER2 negative, locally recurrent or metastatic breast cancer (MBC).

    I just finished my first week of treatment, three consecutive days, on the two weeks on, one week off schedule. So far, so good! I'm hoping it eradicates those dang liver mets that have grown in the last two months on Doxil. Fairly long days in the chemo room as there are extras that have to be done for the FDA. ECGs, lots of blood draws (out of the port, thankfully!). All for a good cause!

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2020
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    Hi Wallaby welcome!

    Gran....I did get oral shingles after my very first treatment of Halaven...but my doctor gave me Valtrex and I am still on a matienence dose. I am prone to mouth sores though.

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited October 2020
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    Nicole, is your IR going to let you stay on Halaven while you're having your y90?

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2020
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    IR said I have to be off chemo for 10 days.

  • pianolady
    pianolady Member Posts: 7
    edited November 2020
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    I'm joining the Halaven wagon...I've had 2 doses and am already obsessed with poop. Again. My last regimen was Xeloda which was a great drug for me except for...poop. Now it's going the other direction. Yep, I'm turning into my grandparents!

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2020
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    Yup it constipates me...but then again...everything does even Xeloda constipated me... I take miralax everyday now.


  • Grannax2
    Grannax2 Member Posts: 2,387
    edited January 2021
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    My start date got canceled again.

    I found out that Halaven can cause hear arrithmias. Since I’m already am having symptoms of A fib, my doc doesn’t think I should start it until my Halter Monitor test results come back. So, I’m having the test on Monday January 4. It takes about a week for the results to come back. It looks like it will be about two weeks before I get to start.

    Has anyone had heart problems from this drug

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited January 2021
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    Doc did tell me I don’t to take any pre meds. Yay. I was glad to hear that it only takes 10 minutes to infuse. That’s awesome.

  • Anne45
    Anne45 Member Posts: 52
    edited January 2021
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    It looks like I will be starting this drug next week. Wednesday or Friday of next week. I was on Doxil but my scans just showed progression to my liver tumors. I am so sad over this. I am grateful to have a treatment to move on to but very disappointed. Dr said treatment on day 1 and day 8 and a week off. She mentioned hair loss and nausea and neuropathy. I plan on reading all the information here because it is so very comforting. Hugs to everyone

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited January 2021
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    I’ve completed my first cycle of Eribulin. At my second infusion on January 21 my magnesium was low so they gave me IV magnesium along with Eribulin. My potassium was low so doc put me on pills. I know electrolytes can go low on this drug. Not a good combination with heart rhythm problems. I have SVT.

    I’m also having SE of fatigue and lack of appetite. It’s a nauseous feeling and nothing sounds, tastes or smells good. No vomiting. I’m trying to keep the constipation under control by taking Mirilax everyday.

    I’m 10 days out from first infusion. I know that hair loss usually starts between 10 and 14 days out. Not looking forward to it. I haven’t even gone to look for a wig yet.

    Has anyone else had the same SE I’m having? Fortunately, my WBC didn’t drop too low with my first infusion. I’m anemic but HGB is 9.2. So I’m okay.

    I know NicoleRod had some severe complications from her y90 and is currently not on Eribulin. At first, her liver mets responded but now I don’t know. Has anyone else had good response for liver mets?

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited February 2021
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    My hair just started falling out. I have had three infusions. I’m on Cycle 2, Day one was Feb3, day 2 will be February 10. First Cycle started on January 15.

    So, my hair loss took 24 days to begin. Anyone else had this time- frame?

  • nicolerod
    nicolerod Member Posts: 2,877
    edited February 2021
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    Same thing for me I just shaved it off.

  • mikainsb
    mikainsb Member Posts: 32
    edited March 2021
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    On heart side effects... YES. My resting heart rate is very affected by Halaven.

    I have an Apple Watch which graphs your average resting heart rate. I can compare one day to another day. It is clear as day. 24 hours after an infusion, my resting heart rate rises about 15 BPM. It stays high for about four days, then it starts to decline. But add another infusion, and suddenly my resting heart rate is about 25 beats per minute higher than it is the day before cycle start. They gave me Atenolol to manage the heart rate changes, cause I wound up in urgent care with a resting heart rate around 135 one day. It is pretty uncomfortable and they still don't entirely believe me. (I have only been on Halaven for three infusions.) But my resting heart rate was low seventies before Halaven, and it is low seventies in the off week, but 85-105, 24-48 hours after Halaven.

  • mikainsb
    mikainsb Member Posts: 32
    edited March 2021
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    I am sharing for those who visit new to Halaven. I am four infusions in and this has been my experience.

    Summary

    Heart rate increases about 24 hours after infusions, sometimes radically and uncomfortably. Stays high for a few days. I have been prescribed Atenolol for this side effect and referred to a cardiologist.

    Susceptibility to getting sick for me has been dramatic. I have been very sick day 23-30. (I had this problem on Xeloda too. Constantly sick.)

    Hair loss was sudden at day 21.

    No bowel changes. No neuropathy. No nausea. (I get nauseated on EVERYTHING. So this is the first thing I have ever had where I am not nauseated. It is amazing.) I have actively declined being given Zofran. I don't know how anyone can have a bowel movement on that stuff. It is so constipating.

    Most importantly: my tumor markers dropped by 1/3 after two infusions. So this is DEFINITELY working for me.

  • Pormango
    Pormango Member Posts: 1
    edited March 2021
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    I started Halaven infusions on Feb 1 (2 weeks of infusions with 1 week off). I am very thankful for my week off. Week 1 has been milder than week 2 of infusions but each cycle has been slightly different. Week 2 I just feel terrible. I wouldn't say nausea but overall week and sick feeling. I have to remind myself to be as active as I can tolerate. Exercise does make me feel better in the long run.

    I feel the constipation has gotten better (or at least this cycle it is). My hair has been falling out. I got it cut short a few weeks ago as I wasn't sure if I would loose it completely or not but it has thinned considerably.

    I am wondering if anyone has felt better following a diet or avoiding certain foods (gluten, sugar, fat)?

  • SusanR
    SusanR Member Posts: 59
    edited March 2021
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    Just got the call from my Onc that Doxil has stopped working after 11 months. I will be starting Halaven next week. My bone Mets after 12 years are significant but she said yesterday’s PET shows even more Mets. I’ve gotten so used to feeling pretty good and having hair (thin, but still hair), and I’m dreading the change. I had severe neuropathy on Abraxane and had to be taken off of it and I understand it can happen with Halaven too. This will be my 9th treatment and I know my Onc doesn’t want to skip over it. She said if the neuropathy gets too bad again we can move on.

    I’m bummed that I have to make another change, but really glad you ladies are here for support

  • snooky1954
    snooky1954 Member Posts: 850
    edited March 2021
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    Hello group, just got my first Havlen treatment this am. So far so good