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Halaven - Day 1

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  • PJB
    PJB Member Posts: 150
    edited January 2011
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    Hi, Annie,

    Glad you got those counts up and were able to get another treatment. Well, you know what I mean. It's not like it's like you won a trip to Europe or something, but....

    Interesting that your doc was in on the trial. He must be full of good info on the drug.

     Sorry about your hair. I hate that when it just sort of all comes out in handsful. I had that on Ixempra. I guess it gets it over with, but, sheesh. 

    I've got just a little neuropathy, but have had that for awhile. I swear b6 helps when I bother to take it. Not nearly so bad as I've had neuropathy on other drugs. At least not yet.

    Good luck on your next treatment. Friday?

    Paula 

  • janetwit
    janetwit Member Posts: 15
    edited February 2011
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    Hi Everyone,  I'm in the same boat as Annie.  I got word today that my WBC were 1.9 today, ( so my 4th treatment has been postponed again. Last treatment was 1-19.   I had Neupogen after 2nd treatment which was Jan 5th.  My doctor also wants mine to come up naturally.   I usually take Astragalus,  but I forgot to take it the last two weeks, so now I'm wondering it that is the reason.  My doctor put me on B6 + B complex for neuropathy. I've never had any problems in all the chemo's I've been on.  My WBC were 2.8 last week and platlets were to low.  So, I'm wondering why my WBC dropped when I didn't even have chemo.  Nurse said it could still be the effects of the chemo from the 19th.  All to confusing to me.  I'm just hoping and praying this is the right drug for all of us.  Wishing everyone a great week!

  • PJB
    PJB Member Posts: 150
    edited February 2011
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    I'll have to look into that Astragalus... my counts have been OK so far, but maybe it's a good idea for insurance.

    Man, I have treatment tomorrow (yippee, freezing rain expected for the trip; it was 80 degrees yesterday) and I already have scanxiety two weeks out! Not good. 

  • jeanne46
    jeanne46 Member Posts: 52
    edited February 2011
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    Easy day blessings for you tomorrow Paula. It's great that your counts have been so great, especially considering what Ixempra did to you! I have chemo tomorrow, too, and am hoping my white counts held up from last week's good numbers (this is Day 8 of Cycle 2). I really did pretty well this week. A little more tired, but not unusually so (of course I don't have any children at home either!!). Am crossing my fingers and toes for you on Valentine's Day - I'm probably due for scans at the end of this month. 

    I went to see a doc at Scripps Integrative Medicine Center and when asked if there was anything I could do to raise white cell counts - he told me, "not really."  I don't know why he didn't mention astragalas.  Is it available at a vitamin store? 

  • hope4us
    hope4us Member Posts: 36
    edited February 2011
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    Good tip on the Astragalus and B6 + B complex, Jane. I will try them - nothing to lose...

    Officially, I've joined the Halaven club - I had my first treatment yesterday, uneventful.

    Paula, awesome that your counts are ok. There is not a single chemo that did not mess my counts badly and even normally my counts are at the lower end and sometimes lower of normal low  - I am hoping for magic this time so I can stay on schedule and do it right ... Good luck today!

  • hope4us
    hope4us Member Posts: 36
    edited February 2011
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    Oh Jeanne, forgot to say I called the Vitamin Shoppe and they have several different brands of Astragalus.

  • Annie4
    Annie4 Member Posts: 27
    edited February 2011
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    Okay, getting frustrated.  2nd attempt to submit due to internet problems.  Ok, here it goes once again.  I get my Astragalus from my naturapath in liquid form which is supposed to be more potent but just started the liquid this week.  Usually got Astragalus in pill from (strongest available) and took 3 pills twice a day.  Thanks for the suggestion of B6 + B complex. 

    I'm getting my 3rd dose on Tuesday instead of Friday because I want to be able to a functioning Mom on the weekends and it would also give a chance for the white blood cell count not to be too low.So much for protocols.

    Jane, has your oncologist talked about lowering the dose?  I went from 2.2 down to 1.8 in the vial.

    Anyone else getting constipated?  That's a new one for me!  Getting prunes today.

    Also, I think it was Carol that is able to work 12 hour shifts in the ER!!! Wow, that was inspiring.  I stripped the beds, did 3 loads of laundry and cleaned the kitchen after reading that one!  

    Annie

  • janetwit
    janetwit Member Posts: 15
    edited February 2011
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    I just order the Astragalus in liquid as well.  I had been taking a capsule. Constipated, oh my.   I have never had so much discomfort and pain.  I eat prunes, drink plum juice, take a stool softner and take milk of magnesia and try to eat as much high fiber foods as possible.  I've had to resort to enema's before.  Every chemo I've had, I've had this problem, but it seems to be worse on halaven, maybe because it is given more often.  He lowered the dose last time from 2.2 to 1.9, which I didn't think was very much, but I guess it was considerating how small the dose is to start with.  Pretty stong stuff in that small bag.    Good luck with the treatments and the weather.  I'm glad I didn't have to fly to Chicago in this mess today for my treatment.    Hope everyone has a great rest of the week.  Jan  

  • clemson93
    clemson93 Member Posts: 36
    edited February 2011
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    Okay, ladies. I had my first dose of Halavan today at noon. So far, so good. I will keep you posted.



    Susan J.

  • PJB
    PJB Member Posts: 150
    edited February 2011
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    Annie, I hear you about the functioning mom part... Clemson, hope it goes well for you and hope it works. 

    Had last one of round 3 today (I think they said 2.4 something, maybe that's the dose?). I've got to do something about the burning stomachy kind of thing right after.

    Jeanne, did you say you take Protonix or something TWICE a day? Maybe I should do that for my first couple days. It's definitely helped at once a day, but I need more help on treatment day and the couple days after.

    So, altho I was officially "retired" as of Monday, I had junk to do the last two days. So tomorrow, after I get my son to school, I'm gonna go back to bed and stay there as long as I wish. Poor Nathan, his was the ONLY school in town that had school today because of the weather (which wasn't sleety like they forecast, but really really cold). I, of course, was also disappointed. But since I had to get up early to go to treatment anyway, I guess it was for the best. Maybe it'll make him even smarter. :)

    Crossing fingers, Halavenites....  

  • jeanne46
    jeanne46 Member Posts: 52
    edited February 2011
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    Paula, I have taken Protonix in the past, also RX omeprazole (generic for prilosec) twice a day. What's really helped this go-around is OTC generic xantac twice a day.  I get mine at COSTCO.

    I don't know why I thought I was having chemo today (maybe chemo brain??). I'm all screwed up on days of the week. My infusion is tomorrow. Am really hoping my white counts hold up!!  

    Paula, enjoying going back to bed tomorrow and snuggling in for a lovely, cozy, warm morning to yourself!! I'm so happy you're able to do this.

  • PJB
    PJB Member Posts: 150
    edited February 2011
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    Jeanne, so do you take the Xantac in the morning and then at night, then? Did you hear more about your report? Thinking of you.

    Paula 

  • jeanne46
    jeanne46 Member Posts: 52
    edited February 2011
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    Paula, I take Xantac in the a.m. with my morning meds and again in the evening before I go to bed. I didn't take one last night because I've really had no stomach issues recently but woke up in the middle of the night with a burning stomach. Popped a Xantac and within 10 minutes the pain was going away. I know it's not supposed to work that fast, but it sure did for me. Again, I use the generic stuff I get from Costco.

    So I was on the road for just over an hour (it takes 1 1/2 hrs.) to my onc's office this morning when the nurse called to tell me not to come in.  Apparently the storm in the east coast (Memphis specifically) had shut down the airport and Eribulin was stuck there.  Boo Hiss. Don't know about tomorrow. How sick is it to WANT my poison?? I really am disappointed. I don't know what happens if it's not available tomorrow.  I once heard that you can get chemo one day ahead or behind the last infusion day and it wouldn't make a difference. Anyone know what happens if it's two days or more? This was Day 8 of my cycle. Next week was supposed to be my week off, too. Yech.

    Am still waiting for the neurosurgeon to get the actual CD of the MRI films so he can compare it to the last one in early November.  They did offer to prescribe some sort of steroid packet that you take for 5 days (6 the first, 5, the second, etc.) that should help the decreased hearing and increased whooshing and ringing in my left ear.  I thought I would try it next week after the Eribulin wore off. 

  • PJB
    PJB Member Posts: 150
    edited February 2011
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    Jeanne, that's such a drag! Shame they couldn't have called you earlier, Sheesh. Talk about them cutting it close. 

    I had pretty high dose Prednisone when I "lost" my hearing from Cisplatin. It did a dandy job of fixing it right up. Took about a week, then I could hear fine. I was on it for maybe a month? No problems since. Of course, it took me off Cisplatin (w/Gemzar) which was keeping me stable, too.

    Stay warm girls. My furnace hasn't stopped running since yesterday. Should be a hell of a bill.... We're getting rolling blackouts because there's not enough power  

  • jeanne46
    jeanne46 Member Posts: 52
    edited February 2011
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    Well, luckily the Memphis airport opened up and the Halaven arrived today in time for me to get the infusion. Unfortunately my WBC was low and I need to get a Neulasta (ewwww) injection tomorrow.

    How many of you Halavenites know that your insurance company is covering the infusions? I have to sign a paper each time saying I'll cover the charges if my insurance company doesn't. I think this stuff costs about $10K a pop - or something like that. Eeks. I think my insurance is covering it, but I have yet to see a statement and I don't want to call and find out any differently!!

    Plus, I just got the bill for the first Neulasta injection. The local oncologist charged $5,100, the insurance allowed $2558 and I have to pay $1260 (the remaining amount was applied to my in-network deductible and my in-network out-of-pocket???????). Yikes that's a chunk-o-change for a nasty shot. Anyone know how much they get charged for Neulasta?

  • hope4us
    hope4us Member Posts: 36
    edited February 2011
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    Jeanne, So you got your Halaven yesterday and today Neulasta shot? That is great you got your Halaven. About insurance, everything has to be pre-approved before I get it or the insurance does not pay - so me getting Halaven means they have approved it and they pay. No reason why your insurance should not pay for it - $10k really??????? I know Neulasta is up there too and $5k sounds right ... I remember Neupogen being way much cheaper like $300 - but you'll need multiple shots.

  • PJB
    PJB Member Posts: 150
    edited February 2011
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    Mine also has to be preapproved by the insurance..... Haven't had to have Neulasta yet. Didn't realize it was that expensive. 

    Paula 

  • jleigh
    jleigh Member Posts: 12
    edited February 2011
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    hey, had my first halaven yesterday.  they did give an anti-nausea drip before hand.  so far so good.  so much better than ixempra, so far.  anything i should know in the next couple of days?  and whats the deal with the hair?  my hair grew back during ixempra.  there are still some thin spots so still wearing a wig.  didnt now if everyone lost their hair or not.  thanks!

  • hope4us
    hope4us Member Posts: 36
    edited February 2011
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    Hi Jenn, I started Monday so we're on the same boat. The hair is about 50/50, alghough it seems like a higher rate with our small statistics using the ladies here  - good luck and most importantly, hope it does its job! Like others, I have my occasions of fatigue/nausia that come and go but otherwise uneventful.

  • PJB
    PJB Member Posts: 150
    edited February 2011
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    Jenn, as a fellow former Ixemprite, I wish you a personally gentle, but cancer butt-kicking time on Halaven. 

  • jleigh
    jleigh Member Posts: 12
    edited February 2011
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    hey, quick question.  what does your "chemo calendar" look like?  I am getting halaven day 1 and day 8.  Then a week off.  Then do it again for two weeks.  Is this what you guys are doing?

  • PJB
    PJB Member Posts: 150
    edited February 2011
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    Jenn, yes, that's the same schedule I'm on. 

    Paula 

  • janetwit
    janetwit Member Posts: 15
    edited February 2011
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    That was what my schedule was suppose to be as well.  It will probably be 4 weeks before I have my 4th treatment since my labs have been to low.  I just hope my TM haven't started going up. They had said they wouldn't scan me until I'd had 6 treatments (3 rounds).  Is that in line with what your Onco are saying as well?

  • PJB
    PJB Member Posts: 150
    edited February 2011
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    Yup, that's the scan schedule I'm on. Get mine Valentine's Day instead of chocolates.... :)

    I think it's interesting that there are so many er+ at least, if not also pr+ women on here... i wish those damn anti-hormonals were more reliable! i remember the days on femara as so normal. too bad it didn't last longer.

    i wish, i wish, i wish.... sorry, i'm sure its the scanxiety getting to me.  

  • jeanne46
    jeanne46 Member Posts: 52
    edited February 2011
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    That's in line with what my onc is saying. Scan after three cycles. I believe the Halaven schedule is the same for all of us. That's how the trials were run as well.  Day 1, Day 8 then off a week (it's actually two weeks before Day 1 again).

    Am fixated on the crappy Neulasta. How many of you need Neulasta after Day 8?  It turns out my insurance company only pays 80% for injections until my maximum has been met,  That should cover less than two shots!

    Welcome Jenn and best of luck with Halaven.  I'm certain you will find it much less harsh than Icky Ixempra; I hope it kicks butt as well. As for hair, mine is still hanging in - all 2 inches of it. Thought now it has turned curly. (I didn't lose mine on Ixempra either - but wasn't on it more than two months.)

  • clemson93
    clemson93 Member Posts: 36
    edited February 2011
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    Well....so far so good with Halavan treatment number 1. I was tired on day 3 and 4 and a little queasy for a few days but I may be fighting the stomach bug. My husband had it this week so I guess this weeks treatment will really tell if it is the drug or not. My schedule is the same as everyone else: 2 weeks on and one week off. Best of luck to everyone and I am saying lots of prayers for great scans, Paula!



    Susan J.

  • jleigh
    jleigh Member Posts: 12
    edited February 2011
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    hey.  just wanted to share this with my halaven ladies.  i have not had any liver pains since my first treatment last thursday. not sure if this is from tumors shrinking or if i am finally getting relief from constipation from icky ixempra.  but whatever it is, i will take it. i love a pain free day in cancer land. here are my symptons; high fever day two, cold symptons - runny nose, slight fevers, tiredness - i take ritalin for this.  i do one or two activities a day and rest at night. so far so good. nothing compared to ixempra. although today my constipation turned the other way. anyone have this?  and have you noticed that your conversations have turned into that of a senior citizen? constipation, prunes, laxatives, pains, aches, etc.  the 42 year old has disappeared. glad i could share them with you.  people who are not battling cancer have no freaking clue.

    also, i am stopping work. screw the man :-). retired at 42. taking 100% LTD and taking some $ from my Life Insurance.  i feel so much better all ready.

    here's to a great new drug and praying we all get good scans in the next couple of weeks!

  • PJB
    PJB Member Posts: 150
    edited February 2011
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    Jenn, good for you. I just retired, too. (Altho alas my LTD is not as good, didn't have the 100 percent option with our new owners) I haven't done much with my retirement, YET. But I have great plans. I hope you have a great time and give yourself some time to get feeling better.

     Glad things are going well for you and Susan. Awesome on the liver pain. I made the mistake of taking some Zofran for nausea end of last week and was reaquainted with the Ixempra constipation game.... The pain it involves. I've decided I'll choose occasional queasies over that. I had asked onc's nurse to give me some Aloxi during tx next time (assuming it's the same drug), but I now asked her to cancel that. I forgot what those drugs can do.

    I am still taking Prevacid (well, I will when I go buy some more, ran out yesterday). When I was on Xeloda and had gas/runs problems, it really helped. It does also help some with the stomach/heartburn I get with the Halaven. 

    Have a great Monday, girls. 

      

      

  • jeanne46
    jeanne46 Member Posts: 52
    edited February 2011
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    Jenn - great news about "no liver pain."  Let's go with it being the Halaven!!  I had a lymph node shrink after first infusion.  I think this is good stuff.  As for nausea, I've found that sublingual Ativan works well - if it doesn't knock you out.  Years and years ago when I was first going through chemo, the usual suspects (compazine, etc.- there were no such things as Emend or Aloxi or tablet Zofran) didn't work.  So my onc suggested Ativan.  It works like a charm for me.  Melt the tablet under your tongue (it gets into your system much faster that way).

    I have very few symptoms after Day 1, but after Day 8 I tend to run a fever a few days later and feel achy and flu-ey.  I figure that's from the Neulasta. 

  • hope4us
    hope4us Member Posts: 36
    edited February 2011
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    Please advice on the cycle. Today I hand my first Day 8 and the nurse gave me a schedule that I questioned but she insisted it is a 28-day cycle Day 1, 8, and back on cycle 2 on Day 28 - meaning there are two off weeks. You guys look like you are on a 21-day cycle 2 weeks on and 1 week off. Is there anybody else on 28-day cycle or am I the only one???? Thanks.