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Halaven - Day 1

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  • aprilgirl1
    aprilgirl1 Member Posts: 769
    edited November 2021
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    Piksie- that is fantastic ! I saw your previous post where you felt like it was working and it is wonderful that you see a drop in tm's after 1 treatment ! Wow! Happy you aren't having SE's.

  • Kattysmith
    Kattysmith Member Posts: 688
    edited November 2021
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    Hi Piksie, that is really encouraging news and I'm so glad to hear that you're not experiencing any SEs!

    You go girl!

  • latte123
    latte123 Member Posts: 31
    edited November 2021
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    Piksie, Wonderful news! So happy for you!

  • susaninsf
    susaninsf Member Posts: 1,099
    edited November 2021
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    I just discovered this thread. I'm on Cycle 1, Week 3 (week off) of Halaven. It was so interesting to me to read Paula's original posting for this thread, about Halaven being a new drug! I must admit that I had been hoping never to be on Halaven since it's regarded as the last resort chemo. When I first became Stage IV, my dearest friend in our support group told me that when she went on Halaven and she died soon after. So I had been dreading it.

    As I have found out more about Halaven, I can see that it has worked for many people. It has also been very tolerable for me, so far. I also love that the infusion time is so short. I've never been on a "push" infusion before.

    I don't know how they figured out that a cancer treatment could be derived from a Japanese sea sponge!

    Hugs, Susan

  • Kattysmith
    Kattysmith Member Posts: 688
    edited November 2021
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    I didn't realize that it was considered a last resort chemo...ouch.

    I also didn't know that it was derived from a Japanese sea sponge Richard least made me smile.


  • latte123
    latte123 Member Posts: 31
    edited November 2021
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    A last resort chemo? Yikes, I don't want to think this way! Susan, is this the way they talk about it in your oncology office? No matter how it is framed,I hope you do very well on eribulin, Susan!

  • Kattysmith
    Kattysmith Member Posts: 688
    edited November 2021
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    I know, Latte, my stomach just dropped when I read that phrase. I was already upset because I'm having some eye problems that might be chemo related. I know that I'm running out of options, but I was looking at this as viable option that might actually give me some more quality time.

  • piksie
    piksie Member Posts: 132
    edited November 2021
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    Susan - I think Halaven is offered after two previous treatments have failed, but I definitely don't feel like it's the end. There are so many thousands of ways your cancer is different from hers, I hope you don't lose hope. <3

    My second infusion yesterday. My heart rate has been creeping up for the last year or so, but I am now officially into tachycardia since my first infusion. I've found it in some of the literature, but it's pretty far down the list. Has anyone experienced this?

    Yay for Japanese sea sponges!!!

  • susaninsf
    susaninsf Member Posts: 1,099
    edited November 2021
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    So sorry if I upset some people. My friend said that seven years ago and a lot has changed since then. My MO didn't describe it as a last-resort chemo but she also didn't suggest any other options. For me, you can see my long list of treatments, it's probably my last FDA-approved treatment at this point. However, I have seen people take Halaven as a second or third-line treatment so it's not considered a last-resort chemo by many oncologists. I have been feeling good on Halaven so I hope it's working. At the same time, I'm working to get on a trial and it will feel good to have Halaven in my pocket when the trial drug stops working.

    Hugs, Susan

  • Kattysmith
    Kattysmith Member Posts: 688
    edited November 2021
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    Susan, I think I have one more standard of care option to try after Halaven, but that's it. A/A has such an expensive copay even though I am on Medicare and I've always been leery of taking it anyway.

    I might have to go off of Halaven because my liver enzymes are still out of whack. I've also developed some problems with my retinas that I'm in the process I'm getting checked out.

    ARGHHH!!!

  • Buddhahead
    Buddhahead Member Posts: 19
    edited November 2021
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    HI all,

    I've been a member here for years, but don't post much and haven't updated my stats. Need to figure out how to do that.

    Anyway, I wanted to jump on here regarding Halaven. I, too, have been on many other lines of chemotherapy and I'm not sure halaven is a "last resort". I'll need to ask my MO her opinion on that. I'm on my 3rd cycle and am glad I'm not in the chair all day either. Like you said, it's tolerable for me and the only side effect, other than the usual naseau, fatigue, etc. is my blood pressure went up the first month I was on it. I had a month break for some other procedures (cancer related) and my BP came down. Anyone else have this?

    Also, I lost my hair quickly on Trodelvy (after using cold caps for 3 years on other chemotherapy agents and preserving my hair) so it's hard to tell if Halaven caused hair loss because I jumped on it pretty quickly. What's been your experience? (And anyone else on Halaven).

    Thanks and good to connect with you (all).

    Lynn aka buddhahead


  • Kattysmith
    Kattysmith Member Posts: 688
    edited November 2021
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    Hi Buddhahead, I only have a little bit of hair because I lost most of it when I was on Taxol but so far I'm hanging on to that!

    I have always had enviable blood pressure but I have noticed that its crept up since I started on Halaven, so I'm keeping an eye on it.

    I just had my 3rd infusion on Monday.

    Katty

  • susaninsf
    susaninsf Member Posts: 1,099
    edited November 2021
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    Katty, So sorry about your liver enzymes. What are you thinking of next?

    I've been feeling so much better since I've been on Halaven so my MO thinks it must be working. I will do at least one more cycle before going on the trial, assuming I don't get excluded for some reason. I thought I had to really push to get all the trial screening done quickly but now I can relax a bit. Of course, these kinds of decisions are always a gamble.

    Hugs, Susan

  • piksie
    piksie Member Posts: 132
    edited November 2021
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    I'm on Day 16 of my first cycle.

    Tachycardia started within a few days

    Day 10 or so: one mouth sore that is lingering

    Day 15. I lost ALL my hair in one fell swoop.

    Other than that, I feel good and I feel like it's working on my lungs. I'm sorry for those whose SEs are unmanagable. Seems like we're drawing straws.

  • susaninsf
    susaninsf Member Posts: 1,099
    edited November 2021
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    Piksie,

    So sorry to hear about the Tachycardia. So far, the only SE I've noticed is hair thinning. Yesterday, I started my 2nd cycle. I suspect my hair won't last through this cycle. I've been doing a comb-over to try to hide the ever-growing bald spots but I will probably shave it all off soon.

    The main thing is that you are feeling good and it seems to be working on your lungs! I feel the same way. Grateful to be breathing better which allows me to slowly work on developing more muscle strength. I lost a lot of strength after my pleurodesis.

    Hugs, Susan

  • piksie
    piksie Member Posts: 132
    edited December 2021
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    Susan - how are you doing on cycle #2?

  • susaninsf
    susaninsf Member Posts: 1,099
    edited December 2021
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    Piksie,

    I'm doing ok but pretty weak and fatigued. I also can't seem to stop losing weight. In contrast to my expectation, I felt worse after my first dosage than my second dosage during the last cycle. I hope that will be the case this time too. My hair was falling out rapidly about a week ago but the thinning seems to be slowing down.

    How are you doing?

    Hugs, Susan

  • piksie
    piksie Member Posts: 132
    edited December 2021
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    I'm doing pretty good. Second does of second cycle is tomorrow. I've been a little run down but I have a cold, so I'm assuming that my mild woes are unrelated. My bloodwork today looks good; CA153 is still declining and my WBCs are holding steady. I was nervous about that because Ibrance was pretty tough on my neutrophils.

    I'm starting to feel mild neuropathy in my fingers and am nervous about mouth sore recurrence, so I will ice my hands and mouth this time. Fingers crossed (and a bit numb). :)

    I lost some weight during the first cycle but have made up for it recently. Thanksgiving, Ice cream, and my aunt's carrot cake.

  • susaninsf
    susaninsf Member Posts: 1,099
    edited December 2021
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    Piksie,

    I seem to be the most fatigued after the first dose. I've been coughing a lot today so I'm feeling worried. My neutrophils were 3.32 before my first dose of the second cycle but my MO still wants me to take growth-factor shot five days before my second dose. I don't have numbness in my hands or feet but my hands are very shaky. Not technically on the list of neuropathy symptoms but it must be related.

    Hugs, Susan

  • Buddhahead
    Buddhahead Member Posts: 19
    edited December 2021
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    thank you to all those who,have posted on this thread.

    So glad for your reduced markers, piksie.

    I’m also on Haloven. I think I just finished my third or fourth cycle and will have scans next week if I can an appt.

    I don’t think my signature line is up to date (it got confusing for me) but I’ve been on many lines of chemotherapy to treat bone, liver, lymph nodes in lung and now near kidneys. I’m really hoping the Haloven keeps me stable and reduces the nodes near kidneys since they are effectng kidney function.


    So far my SEs haven’t been too bad actually, this is probably the most tolerable drug I’ve had. Of course, I am up at 3 am from the steroid they give me, but that’s ok. I’ll nap later.


    Again, so sorry for those who didn’t have success with this one and for one woman who posted on her a year or so ago and has now passed on. Damn disease!

    Best,


    lynn

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited December 2021
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    Hi All,

    Looks like I’ll be joining you in a couple of weeks as Vinorelbine failed. I haven’t read back through the posts yet but it seems pretty well tolerated. Hope that’s true for me as well!

    Wishing you all the best for the holidays

  • Munroe20
    Munroe20 Member Posts: 1
    edited December 2021
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    Hi Sadie,

    Flicking through some of the posts & this is pretty good forum to here what others are feeling!

    I’m in the same boat & only new to this forum , two bone biopsy’s and the call yesterday that it’s stage IV breast cancer in spine so starting chemo NYE Vinorelbine, Pertuzmab Herceptin & I think another one also stereotactic Radio … Onco told me I wouldn’t loose my hair does anyone know of this is true ? Gosh afraid of how I’m going to feel !


    Hadport inserted 4weeks ago & they left some non dissolvable stitches in so now have a really bad infection & it’s Christmas Eve :-(

    Refused the TCH “ first diagnosed in March 18” I am single mom of 2 & couldn’t cope with the side effects & emotional side of going through the hair loss again, mind you we do what we have to !

    Wish you all a really happy Christmas & 4 years ago I didn’t think I’d see another one so going to drive one one day at a time 💕


  • denny10
    denny10 Member Posts: 421
    edited December 2021
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    Hi, I am a newbie on this thread and will be getting my first infusion next Thursday. Abraxane stopped working after 11 months as I had to drop the dosage because of s.e.s : extreme fatigue and worsening neuropathy. My hair is growing back after the 6 weeks break I have had. I guess I should prepare to say goodbye to my new curls , as cold capping has not worked on previous chemos. Any other practical advice gratefully received.

    I hope you enjoy your New Year celebrations, whatever form they take and wish 2022 is easy on us all.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited December 2021
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    Hi Denny. We will be figuring this out together as I will have my first dose next Thursday. Am I reading your profile correctly and you went from HR+ to triple negative? My MO is not particularly keen on biopsies but as my list of potential treatments start to diminish I’m thinking I may need to push harder..

  • denny10
    denny10 Member Posts: 421
    edited January 2022
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    Hi Sadiesservant, yes, I had a biopsy [ my 3rd in 14 years] before Christmas and it was discovered I had become triple negative. I hoped I was going on to piqray next , a pill a day , but that is not suitable for me now. Let's hope Halaven is easy on us and it works a dream for a long time.

  • susaninsf
    susaninsf Member Posts: 1,099
    edited January 2022
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    Scans after my third cycle of Eribulin showed mixed but slightly net positive results. No new liver mets. The largest liver met shrank a lot but the second largest grew a lot. Nothing new in my brain. Progression of nodules in my lungs but decrease in other non-cancer problems like fluid, groundglass and consolidative opacities. So it's working!

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited January 2022
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    Really happy to hear this Susan. Hope we all see results

  • denny10
    denny10 Member Posts: 421
    edited January 2022
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    I think your scan results, susaninSF, deserve a little celebratory dance.

  • latte123
    latte123 Member Posts: 31
    edited January 2022
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    I also have good news. My recent PET CT showed a lot of improvement in my bone Mets. I am now on cycle nine.I had a dose reduction at cycle eight since I had gotten very, very tired. Now I’m feeling great! Am wishing the same for everyone else!

  • susaninsf
    susaninsf Member Posts: 1,099
    edited January 2022
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    Thanks Sadiesservant and denny10!

    Latte123, So happy for you!