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Halaven - Day 1

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Comments

  • flimsical
    flimsical Member Posts: 19
    edited June 2014

    I've had two infusions so far and my liver function went from dangerously high to just above normal. So I'm hoping it's really working!!

  • DEbeachgirl
    DEbeachgirl Member Posts: 16
    edited January 2015

    My oncologist has recommended i start Halaven next week. Anything I can do to prevent hair loss? I just can do that again? I read a few places he infusion time is quick. How long is it? Anyone do cold caps w it? Thanks!

  • mutherflush
    mutherflush Member Posts: 85
    edited January 2015

    Hi Debeachgirl. I'm on my fourth cycle of Halaven. My hair started to fall out after the first cycle but I have not lost it all. I had long strands cut off and it looks like a mans haircut. It is now growing again.

    My main SE with Halaven is fatigue. It hits me like a hammer on day three and I spend the whole day in bed. I get stronger each day after that and by day 8 I'm ok. Ready for next shot. The week off allows me to get me bloodwork back to normal.

    I've had my first scan but don't get results until 17th Feb so don't know what's happening yet.

    I wish you good luck with treatment and hope it kicks the big "C" into touch.

    X Helen

  • SyrMom
    SyrMom Member Posts: 575
    edited January 2015

    bump!  Just finished reading all 41 pages & this is so helpful.  Begin Halaven on Monday.  Pls keep the info coming - where are all of you on Halaven?

  • nred2002
    nred2002 Member Posts: 15
    edited February 2015

    I have completed cycle 1 and start cycle 2 this Thursday. No real issues for me so far except some constipation. My white cell counts dropped after the first dose, but were enough to get the second.

  • SyrMom
    SyrMom Member Posts: 575
    edited February 2015

    Hope my counts haven't dropped too much from the Red Devil - we'll see.  Unfortunately, winter storm predicted here on Monday, just what I need the first day.  Oh well.

  • SyrMom
    SyrMom Member Posts: 575
    edited February 2015

    Had first Halaven today, counts were o.k.

    Was given a long laundry list of other meds that can't be taken with Halaven, this includes Zofran Sad.  So ... hope

    I don't have much nausea cause the other meds I have cause too much fatigue.

  • 3littlegirls
    3littlegirls Member Posts: 17
    edited February 2015

    Hi ladies, I start Halaven tomorrow. I get all loopy on steroids so he has given me some pills to take. No idea when I am suppose to take them. opps. Anyway this thread was great to come accross. Although it was heartbreaking as well. I knew most of the ladies who initially started this thread and it's sad to know a lot of them are no longer here. I pray they find a better drug soon so others won't see our names from the past. Ugh Can you tell I am freaking out a little? Sorry


  • SyrMom
    SyrMom Member Posts: 575
    edited February 2015

    Michelle, I just started Halaven myself, last Monday.  Our stories are similar in that I, too, was Stage IV out of the box & told I was o.k. for 2 years! 

    Anyway, let's keep in touch and learn how to handle the side effects. Many women report this is an easier chemo; so I'm hoping for that as well as a long run with it.  Need to have those liver mets disappear!

    I, too, noticed how many of the ladies are no longer with us & it does freak me out.  We need to beat the odds.  So much more is needed to deal with Stage IV. 

  • 3littlegirls
    3littlegirls Member Posts: 17
    edited February 2015

    How are you feeling so far SyrMom? I get it in 2 hours. Getting a little nervous.


  • stellaratovsky
    stellaratovsky Member Posts: 131
    edited February 2015

    hello ladies I just a started this drug yesterday and I am scared as hell. I am ok with dealing with effects as so long as it works. Lately nothing seems to work and I am scared as hell. I hope this one works. I just found out I have progressed into liver and lung onc. Said it did not look so bad. But to me it's bad I was bone only for 2 years al of sudden I started to feel so bad. Please say a pray for me and hope that this one will work. I am so numb and scared I don't know how much more I could take of this. I am scared.

  • SyrMom
    SyrMom Member Posts: 575
    edited February 2015

    So far not bad, but I've only had 1 infusion (next one Monday).  I seem to have developed an aversion to foods I use to like, from the Adriamycin; so it's hard to tell what is true nausea and left over from Adria (similar to morning sickness).  Some fatigue, been napping all week.  In general I'm very unmotivated, but that's also a carry over from Adria.  Hoping this improves.

    It's scary when the beast moves into the major organs, no getting around it.  My last scans were the worse I've ever had, so I'm hoping this will do something positive with little side effects.

    Hang in there. 

  • sandpointer
    sandpointer Member Posts: 3
    edited February 2015

    My mom was diagnosed with stage IV tnbc last month with mets in liver and bone. She is on her first Halaven cycle - had her Day 8 dose on Thursday. So far, her only SE has been fatigue. Praying for you ladies, and very interested to hear how this drug goes for you!

  • lilylady
    lilylady Member Posts: 478
    edited February 2015

    I start Halaven on Tuesday. Wasted last summer on Navelbine-didn't work, major progression. Wasted all fall and early winter on Ixempra-didn't work, majpr progression. I am so hoping this stuff will work because I am just about the end of the line with drug choices. Have had Gamma Knife twice in the last 3 months and am having enough problems with my liver that it feels like someone is stabbing me with a knife.

     Nice to hear that most tolerate it fairly well. I am going to retire the first week of April and am hoping to have a nice spring and summer with little SEs.

  • stellaratovsky
    stellaratovsky Member Posts: 131
    edited February 2015

    So I am going for my second treatment. I am so scared my rib cage hurts, my body achs and my right eye is all swollen. Has anyone seen any results with this drug. I am so scared that my time in this earth is running out I just refuse to give up. It just hurts to live I don't know how u all do it. If anyone could say anything positive it would be so great. Life has really taken a turn for me. I had major progression in my petscan I have liver mets and lung mets on top of bone. I need some encouragement

  • nred2002
    nred2002 Member Posts: 15
    edited February 2015

    Halaven has worked for many people when nothing else has. I hope it works for you. It is a first line for me, I'm in a clinical trial. I just had my third treatment and so far no major issues. I hope this drug helps you turn the corner on this disease. best, Nancy

  • stellaratovsky
    stellaratovsky Member Posts: 131
    edited February 2015

    Thank u Nancy sometimes u just need to hear it. I am so stressed it's not funny I was perfectly fine upto 6 months ago. I just want a little of good news because the last 6 months nothing but bad news I just need a little of hope to look forward to tomorrow. It seems like not to many people took this drug because I have not got much of a reply. I am in a very dark place right know. Thank u again...

  • SyrMom
    SyrMom Member Posts: 575
    edited February 2015

    Stellar ... I believe it was nancyh that got a year out of halaven with good results.  I've "heard" it's great for liver mets & that's what I'm hoping for.  I've had many runs of "bad news" with this disease - once it was 18 mo of progression, nonstop; then, taxol worked for 11 months.  So do not give up - I know it's easier said, but I've been living it myself.   

    If your eye is swollen, pls make sure it's looked at as you may have an infection that needs to be treated. 

    Keep us posted as to how you are doing.  Many say the side effects are more manageable with this chemo.  Myself, I'm more scared of the worsening neuropathy as that can get me kicked off of it.

    Nancy - what is the trial you are in?  Pls explain some more, I'm interested.

  • sandpointer
    sandpointer Member Posts: 3
    edited February 2015

    Hi Nancy,

    Are you in this trial (two arms are eribulin and paclitaxel) by chance? This is the one my mom is in:

    https://clinicaltrials.gov/ct2/show/NCT02037529

  • SyrMom
    SyrMom Member Posts: 575
    edited February 2015

    Infusion #2 yesterday, so far, so good.  It's usually days 3-5 that suck, but who knows, that might have been from the left over Adria still in my system.  Hoping for a better week.  Next week is my week off - yea!  Keeping my fingers crossed with the neuropathy - taking L-Glutamine, faithfully.

    Hang in there, sisters. 

  • nred2002
    nred2002 Member Posts: 15
    edited February 2015

    Sandpointer,


    Yes, that is the trial I am in. I was randomized to the eribulin arm. Without the trial the onc wanted to put me on Taxol, so this gave us another option.l

    It is going well for me so far, and hope it continues. My WBC count took a hit the second and third doses, but it is back up to normal today (Dose 2 of Cycle 2). I am losing some hair (in strands, not chunks) and they are working on adjusting premeds for constipation, but otherwise doing fine so far.


    Nancy

  • sandpointer
    sandpointer Member Posts: 3
    edited February 2015

    Hi Nancy,

    Thanks for responding. That sounds very similar to my mom's onc - wanted her on Taxol but the study provided this other option. She starts cycle 2 on Thursday. Very mild SE so far - mostly fatigue. But this weekend her hair started to thin. We made an appointment to pick out a wig, and that should be here this week.

    I'm glad to hear it's going well for you!

  • nred2002
    nred2002 Member Posts: 15
    edited February 2015

    Sandpointer,


    That is exactly the point at which my hair started to thin as well. this week, it is still thinning a bit, but pace/number of strands seems to have lessened. The onc and nurse changed the pre meds and I didn't have constipation. No fatigue, though I sleep a bit more for a couple of days after the treatment. Hope this continues for both me and your mom! And that it works!

  • SyrMom
    SyrMom Member Posts: 575
    edited February 2015

    Anyone having swelling in their lower extremities?  I'm fairly certain this has happened suddenly due to the fact I can't elevate my feet/legs in the recliner as I usually do, due to back spasms, but curious how common this is.  Had a lot of swelling after months on taxol.

  • SyrMom
    SyrMom Member Posts: 575
    edited February 2015

    Bump!  Hey, where is everyone? 

    Need to know how many cycles of Halaven you had before your first scan?  I'm being scanned after only 2 cycles (2 weeks on/1 off) & worried it's not long enough to show any response. Shocked 

  • nred2002
    nred2002 Member Posts: 15
    edited February 2015

    Syrmom

    I'm on a trial and my first scan is at the beginning of Cycle 5 (about 12 weeks), which for me will be April 9.

    I noticed after two cycles that my axillary lymph node was a bit smaller, but only marginally so. I would wonder as well if two cycles was really enough to give it time to work.

  • SyrMom
    SyrMom Member Posts: 575
    edited February 2015

    nred, I agree & am very worried.  Can't seem to find any protocol for this.  Thank you.

  • GemStateGirl
    GemStateGirl Member Posts: 55
    edited February 2015

    SyrMom--I'm just finishing up my first cycle of Halaven (2 weeks on/1 week off) and my doctor is also planning to scan me after I complete Cycle 2. I'm assuming that will be sometime during the last full week of March which starts March 23rd. I'm going to see her next week for a follow up appointment so I will double check with her then that that is still the plan and ask whether it might be too soon.

    In some ways, I'm happy to be scanned sooner rather than later. I waited 6 months to be scanned on Faslodex only to find out it wasn't working at all.

  • SyrMom
    SyrMom Member Posts: 575
    edited March 2015

    Gem, thanks for the info!  Pls. let me know what she says, but I'm relieved to hear another oncologist is also scanning after 2 rounds.  I really want this to work & so far the side effects have not been bad (I realize it's cummulative) so I would hate to see a potentially effective chemo stopped too soon.  I'm usually scanned every 3 months; the last scan was longer stretch because of a toxic reaction to doxil, so I had a chemo break, which resulted in a lot of progression in a short period of time.  

  • nred2002
    nred2002 Member Posts: 15
    edited March 2015

    It's interesting how different the philosophies are on this. I have noticed some shrinkage of the lymph node after two cycles, but still seems pretty quick to be scanning unless this stuff is supposed to work really fast!

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