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Halaven - Day 1

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PJB
PJB Member Posts: 150

So, I'm the first person on this newly approved chemo at my med center. Lots of people who told me side effects.... They had a fancy dinner put on by the drug company last night so they all would know about it... :) Funny, no one gave ME steak and shrimp.  

Anyway, got hooked up to some saline as usual (altho, my onc's nurse wasn't sure why. She suggested since they charge so much, they had to do something... Apparently, it's unnecessary) The drug itself comes in a little syringe and they put it into the line over 5 minutes. Then, unhook you and you're done. All told, getting hooked up and waiting for pharmacy to get the drug over, etc., took about 30 minutes. 

Main SE's are neuropathy (have it, thanks to Ixempra), drop in blood counts (they say to plan on it next week), hair loss (already have that...), they'll watch liver enzymes (they're up from when I had my last Ixempra, but not too bad and tumor markers are the same... 

So, we'll see... I'll let you guys know what comes up down the road. I'll have it again next week, then a week off. Hopefully, it'll kill cancer like gangbusters.

Thanks for all your good wishes,

Paula 

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Comments

  • jeanne46
    jeanne46 Member Posts: 52
    edited December 2010
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    Keep in touch Paula.  You will be our Halaven guru!  I'm so hoping the hair loss is minimal.  Now that mine's starting to grow back in, I DO NOT want to lose it all again.  Hope the rest of your week is easy and comfortable.  

    And yeah, why didn't the pharma company take you out to a fancy dinner last night!!

  • PJB
    PJB Member Posts: 150
    edited December 2010
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    Yes, mine has sort of (I think, or maybe I'm just hopeful) started to fill in a tiny bit. Hoping it grows back with this. We'll see. Hope the rads are treating you OK, Jeanne....

    Paula 

  • konakat
    konakat Member Posts: 499
    edited December 2010
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    Hey, this is great it's a short treatment, and that the SEs sound like ones we're very familiar with.  Thanks for starting this thread!

    Elizabeth

  • chainsawz
    chainsawz Member Posts: 113
    edited December 2010
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    I hope this stuff kicks your cancer square in the butt...keep us updated!! 

  • Leah_S
    Leah_S Member Posts: 1,929
    edited December 2010
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    Paula, I hope the SE's turn out to be as easy as the treatment itself.

    Best of luck.

    Leah

  • Fitztwins
    Fitztwins Member Posts: 144
    edited December 2010
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    Paula, I am so excited for you getting this.. When I researched the SE, I was Pissed about hair loss. I kept thinking. Why do they always have to take our hair!???

    What no special dinner? Honey I hope you went and got some great take out!

    hang in.

  • MJLToday
    MJLToday Member Posts: 42
    edited December 2010
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    Woot!  My onco mentioned this as the next treatment, even before Xeloda.  Big pharma must be pushing it hard :lol:

     And yeah, I want a steak&shrimp too!  Money mouth

  • [Deleted User]
    [Deleted User] Member Posts: 61
    edited December 2010
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    I hope you have a great response and as minimal SE's as possible!

  • justpayton1
    justpayton1 Member Posts: 65
    edited December 2010
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    Why no fancy dinner for you?

    Treat yourself..keeping my fingers and toes crossed for you.

    I echo the others hoping the Se's are minimal and this kicks it to the curb.

  • Lowrider54
    Lowrider54 Member Posts: 333
    edited December 2010
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    Ok, I found you over here...Paula - our Official G-Force Captain...going where no man (or bc patient) has gone before! 

    We shall expect a 'Captain's Log' as often as you see fit and here's to SUCCESS!!!!

    Cyber-space Hugs....LowRider

  • PJB
    PJB Member Posts: 150
    edited December 2010
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    Day 3. So far, still OK. No nausea, sleep problems, taste changes, fatigue. Neuropathy isn't worse yet. Keeping an eye out for, you know, the ability to go.... I guess treatment two next week will be the real test. 

    I did start taking an extra Norco (hydrocodone/acetaminophen) a day to fight the leftover Ixempra pains, and I swear that helps me be less tired during the day (another holdover from Ixempra). I've actually been NOT ready to go to sleep at 5:30. So that's been great, especially since my husband is working nights all week. 

    Paula 

  • SusanR
    SusanR Member Posts: 59
    edited December 2010
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    Paula,here's to great results and minimal SEs.  Thanks for bringing us along on your journey so if and when any of us receive this drug, we'll have you and your posts to educate us!

    Hang in there

    Cyber ((Hugs))    SusanR

  • JeninMichigan
    JeninMichigan Member Posts: 51
    edited December 2010
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    Paula

    So far so good ... and I am so glad!!   You are a brave girl with this new drug.    (I always hate when people tell me ... you're so brave ... like we have any choice).  However, you really are since you are leading the way on this new drug without the benefit of hearing a lot lot of others experiences and support.      I am hoping and praying this drug kicks your cancer to the curb so hard it would never dare think of returning.

    ((((hugs)))) 

    Jennifer 

  • PJB
    PJB Member Posts: 150
    edited December 2010
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    Day 4 and I slept most of the day. Not like the Ixempra fatigue, I was just sleepy! Very weird. Feel fine otherwise, besides the continuing Ixempra ache that my onc's nurse says "should" go away eventually. Now I'm thinking I'll take my son to the store to do some last Xmas shopping after I pick him up from school. 30% off coupon!

    Take care, girls

    Paula 

  • justpayton1
    justpayton1 Member Posts: 65
    edited December 2010
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    Glad to hear you are feeling good and up to last minute shopping :)

    Thanks for keeping us posted..

  • jeanne46
    jeanne46 Member Posts: 52
    edited December 2010
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    Paula, so glad to hear you are still doing well after the first Halaven infusion.  It gives me hope.

    Just had my hair cut (!) - it was about an inch long with little tufts and fuzzy things sticking out.  I was in a constant state of "bed head" look.  So my husband's haircutter evened out the hair on the sides and the back of my neck and cut off the fuzzy things.  All this to say, I hope your hair doesn't fall out!!!

  • konakat
    konakat Member Posts: 499
    edited December 2010
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    You sound great Paula!! 

  • Ready2Win
    Ready2Win Member Posts: 7
    edited December 2010
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    This is exciting!  Good Luck to you.  Hoping for great results for you. Keep us posted.

  • PJB
    PJB Member Posts: 150
    edited December 2010
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    Day 5 started out very sleepy again. Then, well, I had lunch. I have to admit I haven't really had an appetite for anything in months and sometimes do a poor job of making myself eat. After a carb-filled french bread pizza and a hydrocodone, I feel much, much better. 

    Note to self: do a better job of grocery shopping.

  • konakat
    konakat Member Posts: 499
    edited December 2010
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    Mmmmm, pizza.  I don't see a problem with that!

  • PJB
    PJB Member Posts: 150
    edited December 2010
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    Elizabeth, you're right. I'm lucky I found that sucker buried in my freezer. Otherwise, my lunch prospects were pretty dim. How many peanut butter sandwiches can one person eat? And I'm out of bread! :)

  • konakat
    konakat Member Posts: 499
    edited December 2010
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    OMG -- peanut butter sandwiches are my stand-by too!  And toast!

  • Leah_S
    Leah_S Member Posts: 1,929
    edited December 2010
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    Paula, I'm glad to hear you're doing well.

    I must admit, I'm used to people haveing beer (or at least coke) with pizza, not hydrocodone.

    All the best.

    Leah

  • lwd
    lwd Member Posts: 234
    edited December 2010
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    Paula,

    It sounds like you're doing very well!  So glad!  Keep up the good work.  Hope this drug does some serious damage to cancer cells!

    Lane

  • [Deleted User]
    [Deleted User] Member Posts: 61
    edited December 2010
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    Go Paula Go!

  • chrissyb
    chrissyb Member Posts: 11,438
    edited December 2010
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    WOW Paula, you sound like you are managing very well with this new drug.  Hope the trend continues for you and it kicks some serious cancer butt!

  • ibcmets
    ibcmets Member Posts: 312
    edited December 2010
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    Paula,

    It's great to hear from a pioneer here.  I'm glad you're doing so well on this and wish you much success with the results.

    Terri

  • jleigh
    jleigh Member Posts: 12
    edited August 2013
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    im do glad halaven is treating you well so far.  i am very interested to see how it works for you.  after my first ixempra, i have felt shitty so i am not sure if i want to take it.  i hate to cut out a chemo but whats worth living if you feel like crap?  so i am curious about this new drug and will mention it to my doc.  keep us up to date and good luck!

  • justjudie
    justjudie Member Posts: 196
    edited December 2010
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    Alright Paula!! This sounds really good!  Not bad S/E's, at least so far!  I am so glad and I hope it is killing that cancer like its never been killed before! 
     
    Go Paula and Halaven!!
     
    Judie 
  • PJB
    PJB Member Posts: 150
    edited December 2010
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    Well, tomorrow is treatment number 2 if my bloodwork comes back fine. Counts were down as expected, but "I'm still eligible for chemo," as the nurse said. Gosh, I wish I got a free lottery ticket too, or something, when I got bloodwork. I'd rather be eligible to win the lottery.

    The rest of the results weren't in yet. I guess they're waiting to see how the liver enzymes are, as I had one a bit high last time and Halaven is known apparently to mess with them. I'll also be interested to see if tumor markers came down any, altho I don't know if that's likely to show up just a week after the last TMs were done.

    I've been a little tired the last couple days, but nothing a well-deserved nap couldn't take care of. My son and I put up the tree last night (note to self: next year, just by a real tree not an assemble by numbers one.) Tonight, the fun part: ornaments. AFTER we go walk the dogs on this beautiful, warm day. 

    Our cat is loving the Christmas decorations coming out. She likes to pretend she's one herself.

    The drag? Looks like the sprouts of hair coming back during the weeks since I quit Ixempra are now falling out. Hair loss is sort of a 50-50 proposition on this drug, as far as I can tell. So I guess I'll be one of the have-nots.

    Jeanne, if you see this, how are your rads going? I know you said you'd be starting Halaven next month. I hope you're doing well.  

    Hugs to you all,

    Paula