Neratinib Clinical Trials

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  • annamari
    annamari Member Posts: 82
    edited January 2010

    Hi fightinhard and suemed

    I am nine days into my trial.  I have loose to watery BMs and take imodium when needed.  I can still work through it without too much interference.  I wish you all the best in your participation in the trial.  Stay away from dairy until you know that your body is handling the treatment.  You will know if you cantry dairy again in the first few weeks.. I am still off it and thankful I am.. Blessings and good luck.

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  • carykim
    carykim Member Posts: 7
    edited January 2010

    So happy to have found this thread!

    When I started this drug a week ago, I was told I was patient #95. The first two days, I just had light-headedness and low energy. Nothing digestive. Just when I thought I was out of the woods and on placebo, the diarrhea hit. It's been a delicate balance, trying to figure out the best way to time the Immodium so that it stops it but I don't want to take so much that the next day I'm bloated and constipated. Any advice on how/when you take the Immodium would be appreciated.

    I haven't been able to exercise or keep up my normal energy level. That's been a disappointment. I feel fortunate, of course, that it seems like I'm getting Neratinib and not placebo. But it's hard to imagine feeling this way for a year. I hope this is just my body getting used to the drug and that I'll feel more myself soon.

    xo

    cary

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  • Cranegirl
    Cranegirl Member Posts: 17
    edited February 2010

    I go to Breastlink in Manhattan Beach, Dr Waisman. Cora

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited January 2010

    So does anyone on this trial think that they are on the placebo ??  Do they tell you at the end what arm you where on ??

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  • vickib
    vickib Member Posts: 1,184
    edited January 2010

    Cary - We are all so different so I really can not give you advice, it is trial and error but I think you will find what works best for you and hopefully soon. The "d" should subside or atleast slow down quite a bit after a few months, I know it did for me.

    Jaimie - They told me I would be taking Neratinib right before I took it but the trial I am in (for later stage) is not a blind study.

    I wish you all the best of luck! Let us know how you are doing.

    P.S. I just got my results back, everything is stable! I am hoping after the next scan or two those damn mets will be gone!!

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  • suemed8749
    suemed8749 Member Posts: 1,151
    edited January 2010

    Vicki - That's wonderful news! Stable is great, but I sure hope that now those mets begin to disappear. The clinical trial nurse that I'm working with said that they've gotten great results with Nerantinib in later stage women.

    This is such a great thread - if I do get Nerantinib and not the placebo, I'll have all of your experiences to learn from.

    Sue

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  • carykim
    carykim Member Posts: 7
    edited January 2010

    Great news, Vicki! Nice to know this drug is already helping people. I'm glad to be doing my part to make sure it benefits everyone who needs it.

     Good to know that the big D slowed down eventually. I'll just keep playing around with when/how much Immodium and eventually find a pattern that works. 

     My new issue is a yeast infection--at least that's what I think it must be. I think I'm just systemically out of balance. Hoping the Diflucan does its job.

     cary

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  • beebusted1
    beebusted1 Member Posts: 40
    edited January 2010
    Jaimieh: There are times when I think I am most definitely on the placebo, especially since I don't have the "explosive dr" that others talk about. However ,I do have the body rash which comes and goes and fatigue. All in all, I tolerated chemo (carboplatin,taxotere,herceptin) pretty well compared to some others, so I really don't know. Hang in there.
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  • my2boys
    my2boys Member Posts: 339
    edited January 2010

    Hi ladies,

    Well, I picked up my pills this morning and I begin taking them tomorrow.  Whatever will be, will be right?

    Mare, is fatigue listed as a side effect?  I had the same chemo as you and for the most part I tolerated it pretty well.  I just hated the fatigue.

    Anne

      

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  • snowgirlcathy
    snowgirlcathy Member Posts: 21
    edited January 2010

    Well, as of Friday I'm off again for 2 weeks - certainly not handling this stuff well.  I'm the 2nd Canadian patient and seem to be the only one of the 4 from our centre on the actual drug - based on SE's.  Apparently there are less than 400 people participating so far worldwide so they're still at the very beginning of this final phase trial.  I'm certainly not handling the stuff well at all - going to my second dose reduction and so far the diarrhea, fatigue and nausea have knocked me flat.  Even with the chemo the anti nausea drugs worked better than with this drug.  I take Gravol but I'm sure it's contributing to the 'can't keep my eyes open' fatigue... pretty rough when working f/t in a pretty stressful job that keeps me on the road a lot.  So I'm going down to 160 next and we'll see how that works.  Going to try staying on the Lomotil as well as the Iimodium and move to Stemetil for the nausea so I can give up the Gravol.  They told me 120 is as low as I can go and stay in the trial.  As my husband says, and in my positive moments I agree - better to feel like crap for a year and live another 30.  Tough to rationalize though when I have to leave meetings to sit on the porcelain bus, don't have the energy to have fun with my terrific little grandkids and feel like I'm either going to faint or throw up most of the time.... whining finished...

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  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited January 2010

    I went and did my blood on thursday.  They are going to call me on Monday with the results and then i go for a mamo on tuesday and then hopefully get the pills,  I am more than a little nervous about side effects.  Im a very active mom, running my kids around everywhere, just hope i can do it!

    Laura

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  • vickib
    vickib Member Posts: 1,184
    edited January 2010

    Cary - My body was so out of wack in the beg too, I felt  that "not so fresh feeling" a few times and had some fever blisters etc. but they went away after a while too.. I hope I did not seem insensitve in regards to the D advice, it just took a while to find out what worked for me and again, we are all so different.   

    Bee - Who knows?? You could be tollerating it really well but either way, you are doing a great thing!

    Anne - Good luck honey! 

    Cathy - I hope 160 works for you honey and feel free to whine as much as you want! That is what we are here for!

    Good luck to all of you!

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  • carykim
    carykim Member Posts: 7
    edited January 2010

    One piece of advice I'd give on managing the D is that one day without it doesn't mean you are in the clear! I thought I was all done and didn't take my immodium this morning to head it off, and it's been a rough day. I've gone more than seven times which the nurse said was the cut off for having to take me off the drug for a bit. Not sure if I want to report it tomorrow AM, though. Yesterday was a great day, went to a 40th b-day party and had a great time, stayed out late...maybe it was the cheese in the appetizers that did me in. Definitely feeling a dairy connection.

     And perhaps TMI, but I don't think I had a yeast infection after all. I think all this D is giving me a hemmorhoid (ewwwww) and the "burning" to me only meant yeast. Had no idea the itchiness was coming from some where else.

     Ok, i'm sure you've all heard more than enough from me tonight. Have a good week. 

    xo

    cary

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  • my2boys
    my2boys Member Posts: 339
    edited January 2010

    Well, I started cramping up around midnight last night.  I'm definitely on something.  I don't feel like myself, but it's also not the worst thing in the world.

    Hoping for the best.

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  • beebusted1
    beebusted1 Member Posts: 40
    edited January 2010

    Anne: Yes it is a SE. Hopefully if you get the "real mccoy" it won't affect you too bad.  Good luck.

    Cary: You are right. While I don't have dr as bad as others, I do get a false sense of security when I have nothing and then lo and behold I'm bathroom bound.

    On a lighter note, since it seems I'm in the bathroom so much, it is now the cleanest room in my house. Be well everyone, take it one day at a time and we'll all get there. :)

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  • carykim
    carykim Member Posts: 7
    edited January 2010

    I ended up going 15 times on Sunday and felt horrible Monday morning. Went in the day before my two week mark and ended up having to give a stool sample--yuk! Then did lab work just to make sure there wasn't something really awry. I don't have the results yet, but I wanted to correct what I said before. Going D seven times in one day is NOT the cut off for having to go off the drug. I misunderstood.

     I'm still on the 240 mg dose but they gave me a prescription for opium tincture (of all things!) in the hopes that it will prevent diarrhea. We'll see. It certainly put me to sleep last night....

    cary

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  • rebekah2
    rebekah2 Member Posts: 12
    edited January 2010

    I decided earlier today to go ahead and do this trial. But now I'm nervous.I know I made a good decision but its the thought of putting more drugs in my already saturated body thats making me question this whole thing. Anyone else feel this way before starting? It's just starting to feel like the 'never-ending battle'.......

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  • suemed8749
    suemed8749 Member Posts: 1,151
    edited January 2010

    I just took my first dose - guess I'll know if I have the drug or the placebo pretty soon Smile.

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited January 2010

    Welcome to all the newbies on this thread!

    Cathy- I am on 160 and it has been a world of difference. I still have an occasional day when it is bad- but nothing like the higher doses- maybe potty 5-6 times max but most days it is 1-2 and not the big D. Dairy definitely makes it a lot worse for me!!!!

    My only advice is to keep in touch with the nurse about your side effects- most of the ones on here from late last year know I went through a terrible 2 months trying to get my potassium and magnesium levels back up after the horrible diarrhea.

    I still seem a little more fatigued than normal- not sure if it is the neratinib or the femara!

    Kristy

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  • beebusted1
    beebusted1 Member Posts: 40
    edited January 2010
    Rebekah2:  The thought of more drugs makes any of us groan, but then you think of the positive. If you have the placebo, no harm, if you have the drug it can only help you in the long run. I did it not only to do "my share", but it made me feel like I was being pro-active rather than sitting around thinking is that all they can do for me, was that enough?  Just know its a step in the right direction and you'll have good people helping you along. Be good.
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  • golfgirl
    golfgirl Member Posts: 20
    edited January 2010

    It's my first day on the trial.   I saw the postings on this trial back in Dec and had my last Herceptin treatment just before Christmas.  I called my onc to inquire about this trial.  She encouraged me to do the trial even though they don't offer it at that office.  I went about an hour away to the nearest office that offered it.  Saw a great onc there and had all the tests.  

     I figure that doing the trial is better than just sitting around the rest of my life wondering if the big C is going to strike again.  Even if I get the placebo, it would be no different than what was already going to be case.  Every day during all my treatments, I gave silent thanks to all the women who came before me and did the clinical trials that resulted in the drugs and treatments that I was getting... so now it's my turn to help those that come after me.

    Anyway -  I took my first dose at breakfast this morning.  Feeling a bit weird in the stomach now, but that may be just psychological at this point.  I was very lucky and never had any side effects at all from prior chemo  (other than hair loss), so I'm keeping my fingers crossed.  

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  • my2boys
    my2boys Member Posts: 339
    edited January 2010

    golfgirl and beebusted1 - I agree that doing the trial is proactive and better for us than sitting around and wondering "what if".  It is always better to know that you did all that you could do.  Another positive to the trial is that you have the benefit of being followed more closely than if you didn't do it.  I like that now I have two oncologists watching me, instead of the standard follow-up from the one.

    Believe it or not, I felt something the first couple of days on the pills....worst cramps were Sunday night, but things have settled down.  I was a little crampy in the intestines this morning, but it passed.  Following the advice of some here and I have been steering clear of dairy.  I'm hoping that if I am on the drug, this is how it is going to be since I can tolerate this, no problem.  Time will tell.....sigh. 

    Enjoy the rest of this beautiful day.

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  • suemed8749
    suemed8749 Member Posts: 1,151
    edited January 2010

    Well, 19 hours after my first 240 mg dose, and still . . . not much. My stomach was rumbling during 7th hour, and I felt a little crampy, but that was it. As some of you have posted, it could be psychological. Never before have I been disappointed NOT to have diarrhea! I know that 50% of us in the trial have to get the placebo, but I really did want the drug. We shall see. . .

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  • carykim
    carykim Member Posts: 7
    edited January 2010

    suemed, my first few days were similar, gurgling belly was the first sign. no D doesn't mean you don't have it. fatigue and vague "malaise" started the 2nd day. it's very subtle, so there's no way to know for sure. keep us posted.

    cary 

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited January 2010

    My tummy rumbled and made all kinds of noise- still does some.

    I avoid dairy and dont ever eat to really full- that seems to help with the side effects- eat more often smaller meals!

    Hang in there ladies- the nurses can help with side effects! I love my research nurse!

    Kristy

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  • my2boys
    my2boys Member Posts: 339
    edited January 2010

    My tummy rumbles so much that I'm afraid other people in the room can hear it!  I made the mistake of having a cup of coffee this morning.  Rumbling and little nausea from that.  My appetite has decreased and I've lost a few pounds this week.  Do the side effects get worse before they get better or do they settle down?  I'm hoping that this is the worst of it because no bowel issues so far, just tummy rumbles and cramping from time to time.

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  • rebekah2
    rebekah2 Member Posts: 12
    edited January 2010

    Thanks beebusted1! I'll be sure to continue posting here as I begin taking the drug (or placebo) You're absolutely right about not sitting around and wondering if enough was done....its what I've been doing a lot of recently.Being pro-active is much better!

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  • golfgirl
    golfgirl Member Posts: 20
    edited January 2010

    It's now day 4.  Had rumblings yesterday then loose stool late in the evening and some D this morning.  Took Imodium each time per onc instructions.   Not terrible yet.   Remains to be seen whether it gets worse through continued doses day after day.   I guess this means I'm getting the drug.   I know what you mean Suemed8749,  it was strange kinda hoping that I'd get D.   Now just hoping that it's not too bad.   

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  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited January 2010

    I go Monday to chest xray, muga and ekg, already did all my blood work and mamo!  Then i get my pills.  Its been so helpful reading this thread and having an idea of what to expect if i get the real deal :)

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  • my2boys
    my2boys Member Posts: 339
    edited January 2010

    I'm feeling much better.  Rumblings have quieted down and I feel just fine.  Something was up for the first few days on the pills, but I seem to have adjusted. 

    Either way, I'm glad to be symptom free at this point.

    Anne

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