Neratinib Clinical Trials

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  • Joanne-CCRC
    Joanne-CCRC Member Posts: 1
    edited February 2010

    I recently came across this site.. I am a research coordinator and our site just started screening subjects in the Wyeth Neratinib studies. You ladies have given alot of insight and suggestions regarding managing the side effects that could come with this drug. I applaud all you for your courage and strength and also, your support of Cancer Research. If not for women like yourselves Cancer Research wouldn't be where it is today. Many thanks!

    I will suggest this site to my patients as a support group.

    God Bless!  Joanne, CCRC, Largo, FL

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited February 2010

    Cranegirl,

    Ive noticed a huge decrease in libido also- dont really know if it is neratinib (Im definitely on the real drug) or the femara or just the fatigue that seems to be associated with both of these drugs.

    Kristy

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  • beebusted1
    beebusted1 Member Posts: 40
    edited February 2010

    Cathy: Good luck to you and feel better :)

    I can't tell if the neratinib reduces libido since I'm convinced the chemo zapped my mojo. I have my skin rash/hives back again all over my chest and although I've been slogging thru a few boxing classes I have no energy. Not that it's that big a deal, but will it always be 6 mini pills thru the study or will it eventually go to just one?  Don't understand that.

    Cranegirl: my little pills are salmon in color

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  • my2boys
    my2boys Member Posts: 339
    edited February 2010

    Hi Bethany it is good to hear from you.  I hope that all is going well for you.

    Thanks Joanne....I'm sure everyone here will agree that we all like to hear encouraging words. 

    Regarding Libido, I think that the chemo-induced menopause did a number on mine.  I have been feeling a little better since finishing up chemo, but not like before menopause.  Stinks being post-menopausal and still in my 40's.

    Cranegirl - my pills are just like beebusted's...salmon in color.  I haven't broken them open to see what color they are inside. 

    Beebusted - Our clinical trial coordinator told me that a while back, she heard they were planning on switching to one pill instead of the 6 mini's, but then she heard nothing more.  She was planning on asking about it the next time she spoke with the people from Wyeth. 

    I was doing fine, but then on Saturday I felt myself bloating up with gas.....sigh.  I'm on the slender side to begin with, but by Saturday night I felt like a hot air balloon ready for flight.  Has anybody had problems with excess gas?  Seems to have settled down some, but still bothersome.

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  • Cranegirl
    Cranegirl Member Posts: 17
    edited February 2010

    My pills are also salmon in color on the outside. I meant the inside color is white white  not yellowy white.

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  • Cranegirl
    Cranegirl Member Posts: 17
    edited February 2010

    My pills are also salmon in color on the outside. I meant the inside color is white white  not yellowy white.

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

    Cathy - You gave it a run but I am proud of you for hanging in there. I wish you all well and check in often.

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  • traceyz
    traceyz Member Posts: 745
    edited February 2010

    HI CRANEGIRL,

    I AM GONNA START NEXT MONTH. SO YOUR SAYING THE PILLS DONT ALL LOOK THE SAME???

     ALSO LADIES THE BIG D HAS ME A LITLLE CONCERNED, I MEAN NOT ENOUGH TO NOT TAKE IT BUT JUST CONCERNED ABOUT QUALITY OF LIFE. I AM A FLIGHT ATTENDANT AND I WORK ALOT!  IT WOULD BE HARD TO WORK WITH THE SYMPTOMS. I GUESS IF IT WAS REALLY BAD THE DOSE COULD BE LOWERED OR I WOULD LIVE ON DIARRHEA MEDS!Cry OH WELL, IM JUST GLAD TO HAVE A PLACE TO COME FOR DIRECTION.

    THANKS LADIES!!

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  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited February 2010

    My pills are white in the middle.  I dont "think" im on the real thing because i havent had any stomach issues, just a little nausea the first two days.  I have become really tired though, no energy at all!  So who knows....

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  • traceyz
    traceyz Member Posts: 745
    edited February 2010

    FIGHTINHARD,

    YOU MAY ABSOLUTELY BE ON THE DRUG. REMEMBER CHEMO? SOME HAD SIDE EFFECTS AND SOME DID NOT. SO YOUR FATIGUE MAY VERY WELL BE AN EFFECT OF THE DRUG.

    THANKS FOR THE RESPONSE!

    TRACEY

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  • anitach
    anitach Member Posts: 191
    edited February 2010

    This thing about the inside color has me interested..... mine are salmon colored on the outside as well but white white on the inside. Is anyone's yellow white inside? I'm still pretty sure I'm on the real deal, even though I haven't had the big D. Mine is mostly nausea, cramping and a lot of tummy gurgling. Fatigue is becoming quite the issue as well. By the end of the workday I'm not sure I'll be able to do anything but go home and lay down... I have to force myself to stay on my feet so I can get dinner ready and help kids with homework. Is fatigue a major issue for anyone else?

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  • Franci22
    Franci22 Member Posts: 7
    edited February 2010

    I am off to see the doctor again today.  I ate a little Friday night, had terrible bouts on Saturday. But Sunday took the cake.  Or I wish I had some cake!  Because my diary wants to know, I had 23 runs from the bed to the bathroom.  My nurse friend calls it intractable Diarrhea.  I stopped the drug Sunday night and last night.  I believe I will be dose reduced today.  I'll give it one more week.  My onc is so excited about this drug.  I told him yesterday, through tears, that I wanted to do it for him, me, and all other women, but I didn't think I could do this.  After two years and my D.I.E.P. surgery in December, I've about reached my limit.  I did want to take advantage of the follow up and close monitoring.  One thing that I have noticed is how quickly this drug works on the system going on and off.  The SEs are almost immediate.  I am taking the immodium every 4 hours.

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  • annamari
    annamari Member Posts: 82
    edited February 2010

    Sorry you are having such a hard time with the diarrhea.  Remember there is other anti diarrhea meds available. and your onc. can prescribe some for you.  It may help.  I just take some imodium and that is enough to help me. I tell my friends imodium is my best friend.  I hope they can help you so you will be able to continue in the trial. My nurse says that you should have a good quality of life.while you are on this.  I get tired as well and after work I just veg. Take care all of you gals and blessings.

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  • my2boys
    my2boys Member Posts: 339
    edited February 2010

    Hello ladies,

    I had another bout with diarrhea yesterday.  It is definitely brought on by what I eat.  It has only happened three times, but each time it is when I eat a very full meal.

    I guess the key is not to eat too much at one sitting while you are on this drug.  I am thankful that I only have the grumbly stomach today....hopefully will be better by morning.

    I am hoping that you are all doing well today.  Hang tough.

    Anne

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

    Oh Franci, 23 runs! That is amazing - I hope a reduced dose helps reduce the SEs.

    Bethany, hi! It's SO good to see you - you look great! I'm doing well and excited about being a part of this study, although I think I'm getting the placebo since I've really had no side effects. Although maybe if I made 23 trips to the bathroom in one day, I wouldn't be so excited.

    I cracked open a pill, and it's white-white inside.

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  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited February 2010

    So are all the pills white white in the middle :)  Mine are also!

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  • anitach
    anitach Member Posts: 191
    edited February 2010

    OK now I'm really interested..... Kristy Ann you are going to have to take one for the team and crack open one of your pills!!! We know for sure that you are getting the real deal so it would be fascinating to know if the inside of your pill were a different color!! Surely they wouldn't make it that easy to figure out if you were getting the placebo right? Do any of you think that the put something in the placebos to make some side effects to lessen the ability to tell the difference?

    Anita

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  • KristyAnn
    KristyAnn Member Posts: 793
    edited February 2010

    Mine are white on the inside also- Im not sure that the color matters, wondering if it is just different batches.

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  • Franci22
    Franci22 Member Posts: 7
    edited February 2010

    Mine are white on the inside as well.  I asked my nurses about the placebos imitating the real thing and I was told that the company can't do that.  Well, I am being dose reduced to 200 mg and will begin again on Sunday in order to give my body time to "regulate" itself.  I have a perscription for lomotil that I am to start on Friday to make sure that it is in my system for Sunday's restart.  I have several trips coming up and I'd like for things to be under control by then.

    Is lomotil stronger than immodium?  I, too, feel like I have a stomach of steel, but these 6 little pills take me down!

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  • beebusted1
    beebusted1 Member Posts: 40
    edited February 2010

    I just broke one of mine open and it is pure white inside as well. I don't think they would make it that easy to distinguish what is real and what is placebo, but you never know.

    Tracey: As a former Flt. Att. I understand your concerns. Might I suggest to try to start in between your trips or if you have a longer lay over, start then.  Nothing would be worse in my eyes than to have to bolt down the aisle and use one of those bathrooms. Good luck.

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  • Cranegirl
    Cranegirl Member Posts: 17
    edited February 2010

    I know someone that compared our pills. She said hers was a yellowish white with an asprin sort of taste. Mine was white white with not much of a taste. She has had diarrhea a bit but no other side effects. Ive had other side effects but no marathon diarrhea. I was just wondering what everyone else has. Thanks

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  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited February 2010

    i felt nauseus for a couple of days, then just tired!  I havent had the diarrhea people seem to get and i feel quite ok now -  think im on the placebo! Mines white white inside!

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  • ipohgirl
    ipohgirl Member Posts: 85
    edited February 2010

    Dear Ladies,

    Hi there! Thanks for the wealth of information and sharing here.

    I shall do my 18th Herceptin early next month, and is scheduled for the N trial in mid April.

    Could some of you ladies please share what the protocol is before admittance?

    A friend who was on the Stage 4 trial quoted different procedures to what the trial doctor breifed me. For exampe, does one need to go for mammos once every three months? What about pet scans and tumour markers? What about the monitoring for the rest of the four years? Do we pay the onco supervising the trial?

    Thanks!

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  • annamari
    annamari Member Posts: 82
    edited February 2010

    According to my info a mammogram is yearly and other scans as needed only.  An ECG and Muga are done at 1,3,6,9,+12 months along with blood work.  It also states that the drug co. pays for anything that your health care does not cover.  This is in Canada and it should be the same in USA.  I wish you well with the trial and the follow up.  I hope your friend is doing well also.  Just remember this is a drug study that everyone starts at the same place and your friend has a different protocol to follow because of her personal situation.  Good luck to both of you

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

    Holy cow! 23 times!! I hope you get it under control soon, that is terrible.

    I am to get a mamo once a year, ct every six weeks and the echo/muga and bloodwork same as above.

    Tracey, I would take some time off, once you start to see how it affects you. I know in my case, it just took a few days for the d to kick in. 

    BTW, I know for a fact that I am getting the real deal (it is an open label study) they are salmon on the outside and white inside.

    Good luck everyone.

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

    Hi ipohgirl: To get in, I had a lung x-ray, MUGA, blood work ... anything I left out? Same info as annamari for the testing protocol - no PET/CT unless indicated by symptoms.

    Today, I had a 3 hour doctor's appointment (1 month check-up). The damned Palm Pilot survey thingie wouldn't transmit the info - we were on a speaker phone with the lab as he was trying to get it to work - my nurse was cursing under her breath - my onc watched this, concerned for the poor nurse but also pretty amused - we discussed books for awhile, then, as he left, he said something about this being a pretty good indicator of the condition of healthcare.

    Unfortunately, there are no study questions to which I could have replied, "I was not in pain when I came in here, but right now I've got a pounding headache and a major pain in my a## thanks to your malfunctioning electronic device!!!!"

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  • CaliforniaCloud
    CaliforniaCloud Member Posts: 160
    edited February 2010

    Hello Ladies,

    I posted earlier that I was trying to get a clinical trial set up near my home.  After many phone calls, it seems that this is not possible.  So now I have a question for you all:

    How wise, or doable, do you think it would be to join the trial and experience the gastrointestinal side effects with

    1. a trial site two hours away and

    2. manage the side effects with a job that has ten minute bathroom breaks every 2 hours?

    I finish my Herceptin on Tuesday, March 2nd and I would really like to jump into the trial, but perhaps it would be wiser to wait until the school term ends in June.

    Thanks for your help.

    Cheers!

    Cloud 

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  • annamari
    annamari Member Posts: 82
    edited February 2010

    Hi Cal. Cloud.  I live about a 1.5 hr drive from my cancer centre.  I do have some diarrhea but can manage just fine to get there even in North country.  Not everyone has explosive diarrhea every hour or so. I get some diarrhea but I'm managing it with some immodium twice a day.  I can't tolerate dairy products and do fine if I avoid them completely.  I drink soy instead of milk, and use cr. of mushroom soup in stroganoff  If I do have even a small amount of dairy I suffer for it..You can do it with care.  I also found that brown beans and other legumes don't agree with me right now.  I hope you will give it a try.  if you have problems the onc and nurse will help you control the side effects.  Good luck!!

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  • my2boys
    my2boys Member Posts: 339
    edited February 2010

    Hi Cloud,

    My clinical trial coordinator spoke with Wyeth and they told her that my symptoms are more typical of the participants in this trial.

    I have had bouts with diarrhea and painful cramps on three separate occasions, all three times after eating large meals.  Other than this, I have gasiness and gurgling stomach most days.  Nothing I can't manage.  I do not take the immodium at all, but I have taken phasyme(sp.) for the gas.

    I am on a low cholesterol diet, so I don't have dairy unless it is fat free and no red meat.  This could help.  I would give it a try if I were you.

    Good luck.

    Anne

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  • CaliforniaCloud
    CaliforniaCloud Member Posts: 160
    edited February 2010

    Thanks Annamari and Anne!  I really want to do this and I really do not want to wait for the school term to end.  My husband says that the economy, employment, and health care issues are just too dicey not to take advantage of the many benefits that this trial offers.  He has been through my cancer therapy every step of the way, so I guess if he is willing to take on another year, I can too!

    Cheers!

    Cloud

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