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Halaven - Day 1

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Comments

  • SPAMgirl
    SPAMgirl Member Posts: 137
    edited August 2012

    She knows. They have been looking through all of the info they can find and even called the drug rep. I had my shot at noon and they had done all of this before 4. They want to know what side effects I have this week. I was curious if this happened to other people. My taste buds suck like they were on chemo. That's probably okay since I need to lose forty pounds from the steroids.

  • holdontohope
    holdontohope Member Posts: 44
    edited August 2012

    SPAM, I get it through my port.   Wow, getting it like a shot seems like a pretty major mistake.   Hope you don't have too many ill effects.

    Nancy B, I had gotten two Halaven treatments in the time frame I should have had four.  The first one was 100%, the second 80%.   Not sure how that works out, whether 40% reduction or what.   My chemo brain can't quite figure that out.  :)    I just had my third treatment last Friday, after missing two because of low counts.  This time, they are giving me neupogen shots every day until Thursday when I am due for chemo again.  On Friday, I will receive a Neulasta shot and be off chemo for 14 days. 

  • K-Lo
    K-Lo Member Posts: 826
    edited August 2012

    Spam, its always been slow IV push. That nurse needs to take a leave of absence but in any case, please be sure your Onc knows? You need to be taken care of with the proper chemo and take precautions with the area that was injected. I would call the halaven maker and ask what needs to be done to the belly whete the drug went.

    not fooling around here.

  • scuttlers
    scuttlers Member Posts: 149
    edited August 2012

    http://halaven.com/sites/default/files/HALAVEN_full_Prescribing_Information.pdf



    Spam - the PDF above details the PROPER administration for this drug. What the nurse did was absolutely wrong. Print the PDF, give it to the doctor, the charge nurse, and the pharmacist at your center. Let them know that you know it was WRONG! I would also call the company and let them know. Also, what K-Lo said.

  • scuttlers
    scuttlers Member Posts: 149
    edited August 2012

    Also, with this situation - I would request (demand) full PDF's for any and all drugs they give you in the future, with time to read them prior to administration of the drug. We MUST be our own advocates!

  • menan
    menan Member Posts: 18
    edited August 2012

    Hi Halavens!  And so long Halavens!  After 6 cycles of treatment, my PET Scan yesterday showed an inprovement in the sites seen in June, but also several new sites - no major organs, just in sternum lymph node and in the tissue surrounding my lungs, heart and stomach area.  Brain, lungs and liver all looked clear.  I started on Gemzar (Gemcitabine) today and because of my history with neuropathy will take it alone on days 1, 8, and 15 with day 22 off and start over on day 28.  MO gave Halaven a 10% chance of working and gives this one a 20%.

    I am really disappointed as I had hoped this would work for me!  Best wishes to the rest of you and I will be back here occasionally to see how you all are doing!

  • K-Lo
    K-Lo Member Posts: 826
    edited August 2012

    Nancy,

    I get confused, because I've had results like called mixed but good...  I get the feeling , which is about worthless, but hey its all I've got, that they want to move on after a certain amount of time on any drug.  Know what I mean?

    But I would feel good about this, myself!

    Laughing

  • apple
    apple Member Posts: 1,466
    edited August 2012

    boy this last treatment was a doozy.. I've been so tired since Thursday. I guess there is the same amount of work to be done when i wake up on Sunday nite..... it that makes sense.  I need to change my chemo schedule, maybe have it on a Monday or Tuesday.   As of now all my work is scheduled from Thursday to Sunday.  I walk like an 80 year old alchoholic and stumble and fall occasionally.  ick

  • K-Lo
    K-Lo Member Posts: 826
    edited August 2012

    I know Apple, I think my people wonder why I am so unpredictable as to  energy.  I wonder myself.

  • SPAMgirl
    SPAMgirl Member Posts: 137
    edited August 2012

    Apple, I always do my Che,o on Monday and I sleep for about 20 hours between Wednesday and Thursday. That way I have the weekend to spend to spend with the kids.

  • dianaleo
    dianaleo Member Posts: 18
    edited August 2012

    I start on Halaven this Thurs.  Nothing has worked very well so far, so have my fingers crossed I will get some results with this.  I just got off taxotere which has not been very easy for me and didn't do much - is this worse, about the same, or easier? 

  • SPAMgirl
    SPAMgirl Member Posts: 137
    edited August 2012

    I've been on halaven for 5 months now. I don't think it's too bad. I have some fatigue. My hair fell out in thing beginning, but it's been growing back for awhile. I do not have any naseau. My WBC has dropped, but I think it drops just by walking into the chemo room:). It has worked very well on bringing my liver mets down.

  • K-Lo
    K-Lo Member Posts: 826
    edited August 2012

    hey Diane,  I think this is a promising drug.  I do not feel as bad as when on Abraxane.  My hair is limp  but pretty much covers my head......   very mild on the mouth sore, skin reaction scale.

    Um, well, I hope it is good for you.

  • apple
    apple Member Posts: 1,466
    edited August 2012

    I am liking Halaven.. i just have so much pro work to do from Thursday to Sunday.. I am going to have to switch to Mondays or Tuesdays... even Wednedays.  I am glad to know others have to sleep like a log for a couple days.

  • alesta29
    alesta29 Member Posts: 240
    edited August 2012

    Just got my first one today which was good news as platelets were low but have come up. Feeling shattered (prob post WBR) and snored my way through the Halaven and Zometa then slept in the car for the entire 2 hour journey back home. Off to bed now. Hoping this one keeps things under control for a little while at least....

  • K-Lo
    K-Lo Member Posts: 826
    edited August 2012

    Hey, Heavenlies, was it here where I bitched about needing a TEAM approach, etc?   My MO said there's no hurry to call Ortho doc for Rotator Cuff tear until my chest, etc, scans come back because he will ask her what my 6 month life expectancy is.   Undecided

    That bummed me out!   But as if reading my mind, the excellent Rads Onc praised my assertiveness and called the ortho-cancer specialist to look at the scans.

    She said Breast Cancer is making more progress than other cancers because there are so many of us pushing and speaking up. She said, "I like what you're doing"

    Laughing

    (Also Posted in brainmets thread to share this encouragement from a major player in the field.)

  • holdontohope
    holdontohope Member Posts: 44
    edited August 2012

    Do any of you Halaven ladies self-inject neupogen or neulasta?  After the first week treatment of Halaven, I then get a neupogen injection for the next 5 days.  After the second week treatment, I get a neulasta shot the next day.  I am really tired of driving to the infusion center for these shots--50 min. from my home.  I read online that it is not unusual to do self-injections.  Any thoughts?

  • SPAMgirl
    SPAMgirl Member Posts: 137
    edited August 2012

    My husband has given me other types of sub-q shots. It wouldn't be that difficult to teach someone how to do it.

  • alesta29
    alesta29 Member Posts: 240
    edited August 2012

    I've done the shots on my own - common practice here in the uk. They give you the bag and you do it yourself (actually I taught my 12 year old to do mine as she likes that kind of stuff!)



    Lx

  • holdontohope
    holdontohope Member Posts: 44
    edited August 2012

    Thanks!  I will ask permission to do this when I go to treatment this week.

  • alesta29
    alesta29 Member Posts: 240
    edited August 2012

    Hair gone - whatever.



    Waiting for bloods to see of I can have my second dose today then I guess it's off to bed until Wednesday :-(



    Having big oral probs with sore mouth (and the dreaded can't taste anything). My friend who is a dentist has given me something called hyanuric gel ? which is supposed to resurface the bits of the mouth that slough off.



    I'm so hungry but can't find anything I want to eat or can taste:-( Really want one of those big cinnamon buns with lots of icing but chances of eating zilch sigh!)



    Lx

  • alesta29
    alesta29 Member Posts: 240
    edited August 2012

    So no neuts, a hint of a WBC and no chemo for 2 weeks.



    Waiting for a bed and just had my first filgrastim. Then onto antibiotics and hopefully out of here by weekend...



    Every damn time I start a new chemo this happens to me. Stop attacking my white cells and get to work on the bloody cancer!!!!

  • SPAMgirl
    SPAMgirl Member Posts: 137
    edited August 2012

    My taste buds come and go. It mostly affects my coke consumption.

  • holdontohope
    holdontohope Member Posts: 44
    edited August 2012

    So sorry, Alesta!  I know that feeling of wanting the chemo so it can fight the cancer and then being put on hold.   Maybe neupogen shots could keep you on schedule?

  • K-Lo
    K-Lo Member Posts: 826
    edited August 2012

    Darling Alesta,

    This has to be wearing on your soul and body.  I hope of course the current management turns things your way.

    Do you think you are sensitive to ALL chemos?  I ask because Doxil made me sick in 5 different serious ways (open painful lesions, in mouth, labia, arm pits and other creases.   I truly suspect the massive DVT that occurred one month into it was caused by my bodies reaction to Doxil)

     I asked to stop it.  Ever since then, nothing has been so bad.   My body hated Doxil.

    Just a suggestion.......

  • K-Lo
    K-Lo Member Posts: 826
    edited August 2012

    Tomorrow i find out if the rogue unprofessional. Nurse knows i wrote her up. Must be done.

  • menan
    menan Member Posts: 18
    edited August 2012

    Alesta;  Hoping your WBC come to life and you can go home!  I was hopsitalised the first dose on my first and second treatments and they never did find out what caused the fever.  On my third one Iwas put on preventative antibiotics. 

    I am really going to miss you all so hope to run into you  on the other boards!

  • holdontohope
    holdontohope Member Posts: 44
    edited August 2012

    Got chemo today and permission to do neupogen self-injections starting Sat.  Who ever thought I would be so happy about "sticking" myself.  :)   

    Alesta, how are you doing?  My onc gave me a prescription for a liquid that I swish and spit out.  I've used it once and it did seem to help make my sense of taste better.

  • K-Lo
    K-Lo Member Posts: 826
    edited August 2012

    Hope, good for you!   I'm sure they told you where to stick it!  Wink

    When taking 2 lovenox per day subcu, i found that my lateral hips had the least feeling with the needle.  That's just me.   I'm not a doctor and haven't slept well this week so cant even brag about a good motel stay.

  • alesta29
    alesta29 Member Posts: 240
    edited August 2012

    Mouth is better with antibiotics, anti fungals and I stopped using chlorhexidine and the other pain numbing stuff which was pretty harsh.



    My dentist came me some stuff which you use as after as needed which redcoats and replaces bits of mouth that should be there. Weird stuff to use but works. I think it's called hyaluronic Acid 1% (also known here as Gengigee professional fluid) has been excellent and not harsh.

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