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Halaven - Day 1

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Comments

  • PJB
    PJB Member Posts: 150
    edited February 2011

    Hi, Hope,

    So, this last time, I had it Jan 25 and Feb 1. Don't have it Feb. 8. Have it again Feb. 15. Does that help?

    Jeanne, I'll try that Avastin thing, maybe with half a pill. Thanks.  

  • hope4us
    hope4us Member Posts: 36
    edited February 2011

    Yes, it does, Paula - I must insist on the 21-day cycle then - I don't know why 28 was picked even when the clinical trial was 21-days - probably just a mistake, going for a shot tomorrow anyway, will ask. Thanks!

  • jeanne46
    jeanne46 Member Posts: 52
    edited February 2011

    It sounds like the nurse is confused.  Question her again. Since this is such a new drug she may not have gotten all the facts straight. See the official website for Halaven below.  (Sorry, but you'll have to cut and paste).

    http://www.Halaven.com/Pages/PrescribingInformation/Default.aspx 

    Edited to add:  Paula, it's ATIVAN or lorazepam (generic).  It's an RX, but should be very easy to get from your onc.  Also used for anxiety. (My daughter takes one every time she has to fly!).

  • PJB
    PJB Member Posts: 150
    edited February 2011

    Sorry, Jeanne, chemo brain. I knew what you were talking about. :) Avastin's the stuff that made the hole in my nose; Ativan is the anxiety stuff I take every night to help me turn my brain off. Maybe I should keep it on more!

  • hope4us
    hope4us Member Posts: 36
    edited February 2011

    Ladies, THANK YOU! Yes, it was a mistake and I'm now put on a 21-day cycle, phew! This is actually my favorite nurse and she is usually very good, this time she simply got it mixed up with my 28-day cycle for Zoladex - mistakes happen just glad we caught it in time. I am really so very thankful for your posts!

  • jleigh
    jleigh Member Posts: 12
    edited February 2011

    hey, quick question.  do you feel a little out of breath?  kinda dizzy?  sorda feels like my red blood count is way down.  i had it during TAC four years ago.  when i climb the steps, it sometimes feels like i just ran a marathon. nothing to do with lungs or anything like that.  i had procrit shot for this years ago but not sure if they give it to you now.  i have my 2nd treatment tomorrow so i will see if they are down.  just wanted to know if you have this side effect too. not fatigue like icky ixempra.  just winded.

  • PJB
    PJB Member Posts: 150
    edited February 2011

    Jenn, I have that when I'm climbing stairs, but I pretty much always have that when I'm climbing stairs. :) My muscles are shot for anything but regular walking.... When do you get your blood counts? 

  • hope4us
    hope4us Member Posts: 36
    edited February 2011

    Had that but it was a bad cold. Also in my case I needed blood transfusion. Good luck tomorrow..

  • Robin-Kaye
    Robin-Kaye Member Posts: 5
    edited February 2011

    Hello Halaven ladies,

    I'm having horrible liver pain and had a CT scan yesterday which I'm certain will show growth and that Ixempra's stopped working for me. Halaven was going to be my next tx. I haven't had Adriamycin this time around and was wondering if anyone thought I should try that first or if you have a lot of confidence in Halaven?

    Thank you for any information.

  • PJB
    PJB Member Posts: 150
    edited February 2011

    Robin, I hope the Ixempra has not quit working for you and that the liver pain is instead a sign of it eradicating those cells. But if it's not, have you had Doxil yet? It's sort of a supposedly gentler version of Adria. I've had it with disappointing results. But I know it works well for some.

    I'm not sure that the order of which drug you get when matters much with mets. I will say that with Halaven, some of us are keeping hair, some of us not. And it hasn't been a hard chemo so far, for the most part, at least for me

    I'm not sure any of us know enough about Halaven to have confidence, but we have great hope. I get scans next week. i generally get more pessimistic the closer to scans I get. 

    When do you get scan results? Hugs as you wait.

    Paula (former fellow Ixemprite) 

  • Robin-Kaye
    Robin-Kaye Member Posts: 5
    edited February 2011

    Well, it's official. Scans showed liver tumors doubled in size so I'm done with Ixempra and start Halaven Wednesday. I asked my onc about other chemo choices but she has the most confidence in Halaven, which gives me some confidence too. Although it's hard to feel much hopefulness after getting bad scan results. I'm so grateful for your posts and have read them thoroughly. Hoping for positive results for all. Love and hugs.

  • spouse1
    spouse1 Member Posts: 1
    edited February 2011

    Robin Kaye:  Sorry to read of your results.  I hope you have better luck with Halaven.  Keep smiling.  Thoughts and prayers are with u

  • jeanne46
    jeanne46 Member Posts: 52
    edited February 2011

    Robin-Kaye, 

    Sorry about the progression news.  I did not have good results with icky Ixempra either, but I believe Halaven has been helpful.  And so much easier.

    Welcome to the Halavenite club.  Hope you will also find it much much easier and that it will kick some cancer butt, too! 

  • hope4us
    hope4us Member Posts: 36
    edited February 2011

    Robin-Kaye, Sorry about the liver progression. Hope Haleven does the trick for you. It surely is not too bad to tolerate - for me there is occasional not-so-horrible nausia and fatigue. Don't want to jynx it but hair is still there. Most importantly, I hope it works for all of us. Love and Hugs, Martha

  • Debh
    Debh Member Posts: 1
    edited February 2011

    Hi...new to site stage iv fighting since 2004... I am part of the Halavan club. I have been on the medicine since 12/17/10... Just got scans back and the mets in my liver are the same and the mets in my lungs are smaller. We always pray for smaller or the same. It has been a long time since we have had a nugget of god news so we are thrilled. Unfortunately they found pneumonia and a dilated kidney in the process, but wes are working on all of that. Hopefully we all will do well in the Haalavan Club. How is everyone else doing?

  • PJB
    PJB Member Posts: 150
    edited February 2011

    Hi, Deb, 

    Welcome to bc.org. Fighting stage 4 since 2004 is quite a battle. I just started that particular battle in 2009. Stable is good, and smaller is better! That's terrific news. How are you faring on the drug? You started the same week I did (I have scans Monday). I've found it quite tolerable, in the spectrum of chemos. 

    I hope they get that pneumonia under control and fix that kidney problem. As if you needed something else on top of stage 4.

    So glad to meet you and hope your scans continue to get better and better. That's very encouraging news. Thanks for sharing it with us.

    Paula 

  • Nancycare
    Nancycare Member Posts: 25
    edited February 2011

    Hello I'm so glad to have found this Halaven Club web cite.    I  will start Halaven in two days  I can see  being a new drug  they are still confused as to when to administer the drug during the 21 day cycle.  My nurse said first treatment one week second treatment the next then off for 21 days. I can see from all club inputs she is way off base.  This creats a scheduling problem because I have some important commitments to make out of town and I want to make sure it will coincide on the week I don't have to take the Halaven treatment on the 21 day cycle Halaven treatment. I will get it straight with my oncologist today.  Thank you for your input

  • Nancycare
    Nancycare Member Posts: 25
    edited February 2011

    HI  Jeanne 46

     Thank you for your positive comment about Halaven.  Every lit bit of good news helps!  They said, Halaven is a more aggressive drug to fight cancer.  Pease tell me how did your body react towards the drug during the first week  versus the second week?  Did  you have some relief from side effects during the week you were off or was it the same.   Thank you so much!

  • hope4us
    hope4us Member Posts: 36
    edited February 2011

    Hi Nancycare - glad you found us - I am so greatful for this thread as well. I knew exactly what to anticipate (mostly right on) and caught a scheduling problem thanks to the discussions!

    For me,  not much difference between first and second week - the same issue week 1 & 2 - occasional nausia and fatigue that would come and go, zero appetite, and constipation (probably due to bad eating) are so far the only side effects I have seen. This is my week off - improved appetite (and regular bathroom stops), much less nausia and less fatigue (although I have gotten fatigued and nausiated a little yesterday).

    Good Luck!

  • hope4us
    hope4us Member Posts: 36
    edited February 2011

    I wanted to add Janetwit, I bow to you with so much gratitude!!! I have ALWAYS had CBC (mostly WBC) issues with every chemo I've had - except Halaven! It must be the Astragalus. Yesterday, the nurse triple checked it was indeed my CBC report (the platelates were a little low - always are with or without chemo - and that kind of confirmed yea, it is really my report LOL), we were all surprised to see such good numbers for the first time in ... I don't remember when.

  • Annie4
    Annie4 Member Posts: 27
    edited February 2011

    Hi All,

    Well, I had my 3rd dose last Tuesday and again very low WBC but just enough to get the chemo.  But they also gave me my first Neulasta injection.  Does it make you guys fatigued, with weird pains in the pelvis and back?  I also had my ascites drained on Friday (Perenscentisis sp?) and the Dr. was a bit rough so all in all, a very hard and exhausting weekend.  I am on astragalus and hoping I don't need to do the Neulasta injection every 2 weeks.  I really don't like it.  Also, for those of you with insurance issues, Neulasta is having some type of promotional program where it costs a very low amount of co-pay.  I'm really not sure what I signed up for but the adminstrative person in the office said it would save me a lot of money.  Chalk it up to chemo fog brain.  I really have it.  

    Also, have terrible constipation.  I'm doing prunes, metamucil, stool softeners, etc.  Today I told my best friend that it felt like I was giving birth. I named my new child "poopie".  We both had a good laugh.  I guess I'll be buying a new onsie!

    Annie

  • Annie4
    Annie4 Member Posts: 27
    edited February 2011

    Oh also Paula,

    I've been thinking about you and hope your scans results are good!  

    Annie

  • hope4us
    hope4us Member Posts: 36
    edited February 2011

    Me too, wondering how it went yesterday Paula?????? Hope all is good.

  • Nancycare
    Nancycare Member Posts: 25
    edited February 2011

    Thank you for you reply.   I've got some out of town  family events coming up and was wondering what week I would feel best enough to attend.  I'm glad you felt somewhat better on the week you were off  treatment.  That is something positive! Thanks again!  Nancy

  • jleigh
    jleigh Member Posts: 12
    edited February 2011

    just checking in on everyone.  wanted to know about scan results from paula.  hope you are doing well.  i am on my week off and feel really good. first time in a long time that i feel normal. having a little pain in my feet at night so i went and splurged and bought myself a nice foot massager.  screw money :-).

  • Lowrider54
    Lowrider54 Member Posts: 333
    edited February 2011

    Howdy Halavenites!

    Paula...you have really started something wonderful...this is great for all of you to be able to share your experiences with this new treatment - and bless you for all shaing as at any given moment whatever we are on could fail and here we would be!

    Jenn, I am so glad to hear your liver pain is starting to fade.  AND - congrats on making the work decision and the accelerated benefits - all that worry and stress will feel so good to be gone!

    Wow, there sure are a whole bunch more of you than last time I checked in (I knew Jenn was coming over is why I stopped by...lol).  hope still here, lots of new names. 

    I wish you all success with this new drug - it looks super promising so far!

    Hugs all...LowRider

  • PJB
    PJB Member Posts: 150
    edited February 2011

    Hi girls,

    I'll be keeping tabs on you guys and hope you continue to do pretty well on Halaven. Alas, it wasn't the magic bullet I hoped for. While some spots in my liver appear to have gotten smaller (it's diffuse in my liver, so it's not real easy to measure. And I refuse to look at scans because I'm chicken), the biggest one got bigger.

    So, I'm onto something else. Don't know what yet; my onc and I are discussing it and I hope also to talk to the doc who did my 2nd opinion at MD Anderson. Scarily, I asked my onc if it would be bad if it took a couple weeks to decide and he said it might be. Given that there is no easy option, I''m more than nervous.

    But, it had to not work for some people. I hope it works great for all of you. I'll be checking up on you.

    Paula 

  • pattih
    pattih Member Posts: 31
    edited February 2011

    I am sorry and disappointing to hear. I hope your next chemo will be tolerable. I understand your fears. I have my scans on Monday and I will update you when I have the nerve to find out. Good luck.

  • terryv
    terryv Member Posts: 2
    edited February 2011

    Hi Paula,
     
    I'm really sorry to hear that the Halaven didn't work for you.  I have been following your thread because I started Halaven on January 13th.  I've been meaning to post here but just haven't had much to report yet!  I think you and I may be in the same boat as I asked my doctor when I started this how many more options I had if it didn't work and she said I would probably need to start looking for trials.  I hope the next thing you try will work for you.  Thanks for sharing your experiences with Halaven.
     
    Terry V 
  • hope4us
    hope4us Member Posts: 36
    edited February 2011

    Oh Paula!!!!! I am so sorry and heartbroken! Well, you are right - of course it does not work for everybody - but I hope the next one does work. Emotionally it gets better with new treatment and new hope, once the decision is made on how to proceed. You are in my thoughts and prayers. Love and Hugs, Martha

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