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Halaven - Day 1

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  • Jjzn
    Jjzn Member Posts: 114
    edited June 2021
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    I have also been dealing with naseau and vomiting. I spoke with Dr office yesterday and they think the halavan has caused acid reflux to kick in. So taking two omoperazales a day. So far working ok. Still not feeling great. But I can eat a little better. I have one week to go for my off week.

    Julie

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited July 2021
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    I had treatments last week and today. Everything is going smoothly. My TMs were down 35 points last week (yay!). They are still high but 335 is much better than the 3800 they once were. All-in-all, I have felt good so far this cycle other than being a bit tired.

    I hope who ever else is on Havalen is doing well. I hope to stay on it for a long time.

    Hugs and prayers from, lynne


  • Jjzn
    Jjzn Member Posts: 114
    edited July 2021
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    Lynne

    Have you had scans yet since being on halavan? Did your liver tumors shrink? I am worried it is not working for me. Plus I am struggling with food issues. Do you not have any side effects? I am skipping treatment this week to try to get my stomach under control. I have one more round before I can do scans.

    Julie

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited July 2021
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    Julie, I did have scans last month. Everything was stable, and that is good for me. I did have several days of nausea and vomiting during my last cycle. I was also extremely tired and thirsty. My MO added a second anti-nausea medication, so I now have compazine and olanzapine, if I need them. The only other side effect that I have is a few days of fatigue following the infusion. I have had neuropathy in my feet for the past couple of years ( since my last week of taxol), but it doesn’t seem to be getting any worse. I hope that Halaven works for a long time because I am running out of options.

    Lynne


  • Jjzn
    Jjzn Member Posts: 114
    edited July 2021
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    Had my appt today and decided to put treatment off for one more week. Then I will do my three weeks of infusion and scan.

    Julie

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited July 2021
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    Julie,

    This is my week off, but I am not feeling great. I have mouth sores all around my lips as well as on the roof of my mouth and in my throat. I also feel just plain yucky ( a medical term, of course.) My MO’s office called in an Rx for Magic Mouthwash. I hope it helps. I should have called when the sores started, but I procrastinated, thinking they would heal quickly. I should known better. I have an appointment on Tuesday (blood tests, MO visit, chemo), and I think I will tell MO that I want to take another week off from treatment. Ijust want to feel good.

    I hope you are having a better week. Enjoy your weekend.

    Lynne

  • Jjzn
    Jjzn Member Posts: 114
    edited July 2021
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    Lynne

    I am with you on feeling good!

    Unfortunately my week off did not give me any relief from vomiting and upset stomach. I have labs next week to see if halavan is working and if I have something else going on like gallbladder. I just thought I would feel better after two weeks off. I am having my infusion today along with magnesium and potassium drip. Let me know how everything goes.

    Julie

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited July 2021
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    Julie,

    What day are your blood tests? I hope they find the cause of all your stomach issues. You must feel miserable after suffering with it all this time.

    I had my appointment this morning. I didn’t have to ask for the extra week off. As soon as my MO saw my lips and mouth, he said “no treatment this week!” I will try again next week. He is going to lower the dose, too.

    Let me know how you are doing

    Hugs and prayers from, Lynne


  • Jjzn
    Jjzn Member Posts: 114
    edited July 2021
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    Lynne

    Scans were not good. Acitities in the stomach and they think cancer on the omentum. Doesn't look good for me. I am switching to doxil in hopes of getting more time. Sorry to leave you on the halavan thread but glad it is working for you.

    Julie

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited July 2021
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    DARN, DARN, DARN! I wish you had received better news. There used to be a doxil thread for monthly doxil, but I can’t find it. There is a weekly doxil thread, but it was for a stronger dose, etc. There were only a few of us on it. Maybe you should start a new doxil thread to see if others are taking it. I do hope you do well on it and that cancer is beaten back Thank you for the support you have given me here. It seems that people don’t stay on Halaven very long

    Hugs and prayers from, Lynne


  • 50sgirl
    50sgirl Member Posts: 2,071
    edited July 2021
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    Here is the link to the All About Doxil Thread

    https://community.breastcancer.org/forum/8/topics/870939?page=1

    I hope you can find other people on that treatment.


  • Jjzn
    Jjzn Member Posts: 114
    edited July 2021
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    Lynne

    Thank you. I need something to kick these liver Mets back so my liver doesn't fail. I asked my Dr if I had at least 3 months. She said I hope so. Ugh..that is not what you want to hear. I know they don't want to commit but I guess I was hoping she would say something like longer then that. I am not ready at all for this. I am still working and taking care of my family. Sorry for the rant. And thank you for listening!

    Julie

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited August 2021
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    I think that I am the only one posting here now. Perhaps my posts will be useful to people who join in the future. After a two week break due to a severe case of mouth sores, I resumed treatment at a lower dose today. I have been experiencing severe pain in my ankles, feet, and hand. I was told that it could be neuropathy. It wasn’t pleasant, it has stopped, and I hope that the reduced dose keeps it at bay. I have had numbness in my toes since my last week on Taxol almost two years ago, but it hadn’t improved or worsened. Time will tell

  • latte123
    latte123 Member Posts: 31
    edited August 2021
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    You are not alone 50’s girl! I am on a eribulin/halaven right now. I had been on it before Covid started and it was working but my doctor took me off of it because for me it causes low white blood cell counts with possible hospitalization and Covid was overwhelming hospitals. I finished one cycle and this is my week off. I'm doing OK. I was a bit tired but doing better this week. It does cause neuropathy. I find acupuncture helps with that And I also take gabapentin.

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited August 2021
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    Latte,it is good to have someone else here. I hope you continue to feel better and that Halaven works well for you for a long time. Low counts can be a real problem. Mine look great after my two week break. I usually have WBC and neutrophils that are just within the acceptable range on treatment weeks. My potassium level is always low, so I take potassium pill daily. Fatigue has been my biggest SE ( other than the suspected neuropathy) until my recent bout with horrible mouth sores. I am hoping that the reduced dose will help

    Lynne

  • mikainsb
    mikainsb Member Posts: 32
    edited August 2021
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    I stop by here occasionally too 50's Girl.

    Halaven took me from tumor markers at about 3800 down to 60, and I am continuing to decline. They dropped my dose by 20% cause I wasn't tolerating it. (I like being able to feel my hands!)

    At the lower dose, with my markers continuing to decline, I am finding Halaven very tolerable. It beats me up a little and I do have some netflix days, cause I don't want to do anything. But all in all, I feel very lucky.

    My weird side effect is mental. It does make me weepy. I am not a weepy sort of person in general, but omg just this feeling of despair sometimes after the second dose. It sets in about 2 days after the second dose and leaves a few days after that. It reminds me of PMS from my younger years. Just weirdly emotional for no reason. A friend of mine said, "Well, I feel that way after a night with too much wine... so why do you think having poison given to you intravenously would be different." I love my friends. So funny.

  • latte123
    latte123 Member Posts: 31
    edited September 2021
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    mikainsb I wonder if the weepiness is the impact of steroids wearing off? I always get steroids with the infusion and it is a wild ride sometimes (going from lively to cranky or sad at quick intervals) but only occurs sometimes.

    I have the unusual side effect of increased glucose while on eribulin. So I take diabetes drugs and can control it well. When the glucose is controlled I feel better all around.

    I do have a weird side effect of feeling "clammy" for about 12 hours after the infusion. You know, kind of sweaty and yucky.

    And then 2-3 days post infusion my face turns bright red and hot and my feet get very hot for a few days as well. My doctor and acupuncturist think it is how the drug leeches out of my system. It's not terribly uncomfortable, just noticeable.

    Overall, my pain seems to be lessening and I am hopeful eribulin is working. I just finished my third rotation and will have scans in a month or two. I am definitely feeling less pain, which is a great sign for me.

    As treatments go, this one has is very manageable for me.

    I am sharing all this for other eribulin/halaven users and wishing you all well!


  • moth
    moth Member Posts: 3,293
    edited October 2021
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    hello, just passing on the msg that AmyQ who posted on this thread, is moving to hospice care. Please keep her in your thoughts.

  • Kattysmith
    Kattysmith Member Posts: 688
    edited October 2021
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    Hi,

    I just had my first infusion of Halaven yesterday. I didn't have any pre-meds and the infusion only took about 3 minutes. It was so different from any other chemo I've had - weird! I spent much more time having my portaccessed and deaccessed. Today I feel a little extra draggy, but that's probably because I didn't get any steroids, usually the day after chemo I feel slightly more energetic and usual because of the steroids in the pre-meds.

    Other than that I feel okay.

    This thread doesn't look very active, but I hope those who are here are doing well on it and that I have a good response too. I haven't updated my treatments in years but this may be the last chemo that's available to me and my MO didn't seem very confident about finding another type of treatment that I hadn't tried already next.

    Katty


  • 50sgirl
    50sgirl Member Posts: 2,071
    edited October 2021
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    Katty, I am no longer on Halaven, but I remember how few people posted to this thread when I did. It was a bit discouraging. I wanted to let you know that I did well on that chemo. It was still working when I had to switch treatments, and I was disappointed that I couldn’t continue.. (I had a rare SE, severe and persistent joint pain that afffected my QOL of life to a big extent, and MO wisely decided to change.) All-in-all, I found Halaven easy to tolerate. The only other SE I experienced was mouth sores, and that resolved with a dose reduction. I hope you have a long and uneventful time on Halaven and see good results.

    Hugs and prayers from, Lynne


  • latte123
    latte123 Member Posts: 31
    edited October 2021
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    50s girl, I am sorry you had to switch treatments and hope the next one works well with few or no(!) side effects. I have had cramps in my feet and hands with halaven but I’ve gotten them under control with magnesium glycinate and strangely enough, pickle juice! Don’t know if that would help with joint pain.

    Katty, During the first few infusions I would get a clammy feeling for a day after and also bright red cheeks. That is all in the past. I am in cycle 5 and feeling quite well on Halevan and my pain and ability to walk has improved quite a bit. I do have edema and taking lasix to help with that. I have an unusual, rare side effect where my glucose is impacted and I take diabetes drugs for that. I have a PET scan soon and we will see what that suggests. Overall, I find this a highly tolerable treatment. My energy is good and I feel pretty well. I wish you all the best with this treatment and if you ever have questions or want to share, I am happy to connect.


  • Kattysmith
    Kattysmith Member Posts: 688
    edited October 2021
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    Thanks so much to both of you! I just got over a short bout with mouth sores from Doxil and I'm hoping to avoid more problems. I already have severe neuropathy and I'll be keeping a close eye out for any progression... I can't afford it to get worse.

    I hope you are both having a good week and finding some enjoyment in the midst of all this! As we used to say in the sixties, onward through the fog!

  • Kattysmith
    Kattysmith Member Posts: 688
    edited October 2021
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    Dammit, I just went for my second infusion but my neutrophils were too low to have it (2.1).

    So now I have to wait until November 1st to have my next one.

    Bummer.

  • latte123
    latte123 Member Posts: 31
    edited October 2021
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    Kattysmith, That is always frustrating and mine was borderline during my first treatment cycle, although i still got an infusion. Since then I drink bone broth everyday in the hopes that it is helping with this issue. I haven't had to delay any treatments yet and I am on cycle 5. Of course, who knows whether it works or not as there is not any scientific research on the topic. I hope you are feeling well otherwise. Take good care of yourself!

  • Kattysmith
    Kattysmith Member Posts: 688
    edited October 2021
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    Thanks so much, Latte. Normally I take bumps in the road like this in stride, but I've had a really rough month for other reasons, so I wasn't ready for even a little disappointment. I suspect that my MO will lower the dose a little and we'll see what happens!

  • piksie
    piksie Member Posts: 132
    edited November 2021
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    Hello. I had my first Halaven infusion today. I recalled Katty's original post on 10/12 and expected it to be a quick port access and 2-5 min push. I was a little surprised when they strapped an EKG on, hung a bag of fluids, and handed me a pill cup with Dexamethasone, some apple juice, and a blanket. I guess it helped me justify paying for parking. :)

    It looks like Xeloda was effective for my bone mets, but I have worsening lymphangitic carcinomatosis that requires a change in treatment. We're hoping to find a genetic mutation in the lymphangitic spread that will offer more treatment options, but for now, it's Hail Mary Halaven.

    Based on two years of Ibrance, I anticipate neutropenia. At the lowest dose, I still hung out around .7 to 1.2. I didn't get specifics, but MO indicated there is a treatment similar to Neulasta to assist with Halaven-induced neutropenia and could be self-administered if I'm okay with giving myself shots (which I totally am!). Have any of you heard of this or used it?

    Katty, I'm sorry your treatment was delayed. It is so frustrating!

    Latte, I'm definitely going to try bone broth!

    Oh... and how is your hair holding up?

    I see that this conversation ebbs and flows, so I hope to hear how you all are doing.

  • Kattysmith
    Kattysmith Member Posts: 688
    edited November 2021
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    Hi Piksie, I'm jealous that you got some dexamethasone; I always had that as a pre-med with my other chemos and like having a little energy the next day!

    Unfortunately, I had to skip another infusion because even on a reduced dose my neutrophils were way too low plus two of my liver enzymes skyrocketed.

    Ugh. So Monday we are going to try again and I'm hoping that my neutrophil count will be high enough and that my liver enzymes have calmed down. I need to double-check, but I think my doctor is going to reduce the dose again, assuming I can take it Monday.

    Best of luck finding more treatment options! That's so frustrating.

    As far as my hair goes I had just gotten it back from my previous chemo and it is very very very short, but so far it's hanging in there. Of course I've only had two infusions.

  • latte123
    latte123 Member Posts: 31
    edited November 2021
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    Katysmith, I am sorry you're still struggling with neutrophils. That can be very tough and frustrating. Hopefully the lower dose will help. Sending you hopeful energy!

    Piksie, I had problems with neutropenia on Ibrance. I have not had those problems with Eribulin. I hope the same is true for you!

    Update on me. I started Eribulin in late July 2021 and most of my hair fell out so I cut it very short. I don't completely shave my head anymore after losing hair several times because you never know how much is really going to fall out. Instead I go for a very short cut and see how it goes. Right now I'm having a lot of hair growth and it feels great! I had a pet scan in October and it shows a lot of improvement in my bone Mets. I don't have mets anywhere else. I'm very grateful for this because I've had a lot of treatments fail over the past five years. I continue to have some side effects, but they are managed pretty well and I'm living a good life right now. Pain is much better and I can walk without a cane or walker! The side effects include glucose issues solved with diabetes drugs (unusual side effect), heartburn solved with protonix and occasionally tums, Swollen feet, especially my right foot, helped but not completely resolved with elevating foot and taking diuretics, muscle cramps in hands and feet improved with a daily magnesium supplement and drinking pickle juice. I also drink daily home made bone broth and I believe that it is helpful with keeping my blood counts stronger than they were. I share all of this because I find otherexperiences so helpful in managing my own problems. Thank you to all the helpful women on BCO and I wish the very best for our current Eribulin folks.

  • piksie
    piksie Member Posts: 132
    edited November 2021
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    Hi there. I'm on day three, so not much to report. I haven't had any SEs, except perhaps a little tired? Could be work, kids, holidays, any number of things... nothing that I would attribute directly to Halaven.

    I have been wrong before, but I really feel like I'm benefiting. Lymphangitic carcinomatosis has made it difficult to get a full breath, but I definitely feel like my lungs are working better! I sure hope I'm right! My baseline scans are scheduled next week so won't be true baselines, but I just know it's working! (Knowing from experience that I might be completely wrong). I'm anxious to see what CA 153 says in a few days.

    On hair, I've kept mine very short since it came back in after AC+T in 2019. It should buy me some time if it does start falling out. At this stage of the game, I'm not going to worry about it.



  • piksie
    piksie Member Posts: 132
    edited November 2021
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    If anyone is reading this, I have good news to report. After one treatment, my CA 15-3 has leveled out at 1,000. Since June, it went from 120 to 1,053 while on Faslodex and Xeloda. My panic has temporarily subsided.

    I've also not experienced any SEs. I'm feeling pretty good right now. Nerdy