Neratinib Clinical Trials

Hello gals, Had all my tests done and started 1st set of pills today. Here's hoping for no bad reactions. I did very well with the chemo, so hoping I do just as well on this. Have a good Christmas everyone and a happy new year.

I am almost done with the drug.and I found using Biotene toothpaste and mouthwash helpful.  I did not have much problems with a sore mouth only an occasional canker sore. and at that time my whole mouth would be sensitive.  I hope that helps you some with you problem.  I found that staying away from dairy products prevented a lot of diarrhea.  I did not find lomitil helpful and after a month or two of trying it I decided not to use it and there was no change in the severity of the diarrhea.  I wish you all the best in your treatment and that you will be able to handle it well.

Yea! I finished my year. Very thankful that I found this forum just as I began the trial. The feedback and support meant a great deal. In the end, the only surprise was elevated liver. Numbers had been fairly normal, but in the end one of the factors had more than doubled SGPT/ALT (U/L) putting me in the high range. I guess the good news is unless something else is going on, then I must have gotten the real drug. My major challenge throughout the trial were bone & muscle pain/cramps and moderate D.  Glad to have had the chance to be in the trial, but thrilled it's behind me.  For those new to this thread...hang in there. Hopefully, the year will go by as fast as it seems to have for me.

I've just been told that I'm eligible for a neratinib trial after I complete herceptin this coming August.  It is so helpful reading everyone's comments as I make up my mind whether or not to participate.  The side effects sound annoying, but considering that survival is at stake, it must be worthwhile.  Here's hoping to be on the real deal, and not the placebo!

It's now a year of the clinical trial and done with the pills.  After a year I am happy to be done with this phase.  Now it's on to reconstruction next week and I look forward to being even instead of lobsided.  I hope everyone doing this trial will bennefit from it or someone in the future will.  all the best to those just starting with it.  you are all helping to find a cure and hopefully find a way to wipeout breast cancer and all other cancer.  Blessings to all!!!!!

Hi all, happy, healthy new year. Just checking in to say hi and hope everyone is getting thru the trial okay. Its been one month since I finished and I'm just starting to feel like my old self.It goes by fast so hang in there.

Hi there flutter,

For me I do seem to have a little more fatigue than usual. However it can be overcome. I just don't let it bother me. When I can sleep a little longer, I do. When I can't, I don't. I work a 10 hour day in a manufacturing plant, making windows. So they are kinda heavy. Makes me a little more tired, but I've felt this way since I started all this crap, not just this new trial drug.

I believe I am taking the real deal. About a 1/2 hour after I took my first set of pills, I came down with diarrhea. Which is the biggest side effect. It is also manageable. For the first week or so, yes, I had to take Imodium everyday. But after that I learned what not to eat, DAIRY, corn, beans,Oranges (the juice by itself is fine, no pulp). For me, pulp comes right back out. Not that I can't eat them. I just know if I do. I will be having a bathroom day.

So to be on the safe side I only eat those kinds of things when I know I'll be at home near a bathroom. I'm not willing to give up all the things I like. I just pay the consequences. Now when I do eat these things, I don't always take Imodium, I just let it run it's course. Once it runs through my system ( usually 1-2 times ) then it's done and over with, and I'm back to normal.

Another thought, just for your information, do eat a little something before taking the pills. I did find if I didn't eat something then I had severe stomach cramping. Now I have a banana or a very small bowl of oatmeal ( 1pk. micro ), a muffin. Something along those lines. Just to get something in there. Didn't take much, but if I don't have time and take them without. I can tell, right away.

If you want to know anything else, just ask. Hope this helps.             Leisa

I have a question for those of you who have been on the drug a while or are at the end of it. Did any of you get thrown back into menapause? I had chemopause when I was on chemo. I'm 46 (Dec.2010) Then I started my normal period again. Now after being on the drug for awhile I am not having a period again. I started on the drug December 23rd,2010. Had a period in November & December, haven't had one in January and so far not this month either. Was just wondering if I'm done again until I finish with the drug? Any feedback would be appreciated. Thanks in advance. Leisa

From the way it was presented to me we don't, ever. Even when it's all over with. The only way they would break protocol, was if you came down with some very serious liver damage. Anyway, that's what I was told. Maybe it's different for you. Where are you? I'm in NW Missouri. Maybe it depends on where you are from but I wouldn't think so. Just my opinion.

I have another question. Has anyone also had any kind of bloody stool? Has happened a couple of times, so was wondering if I needed to contact my onc or if it was normal. Would appreciate the help. Thanks,      Leisa

thanks anyway

What a wonderful Valentine!  Thanks.

I have completed nine months of the trial and have just had the longest, lingering cold I have had in years.  I am wondering if it has anything to do with the trial drug.  I have had symptoms, so am convinced I am getting the real deal. 

On the issue of unblinding, I was told the same thing that I would never be told unless I had a very compelling reason and only if I was still taking the pills. 

Boo

Leisaparis, YES exact same thing is happening to me.  I have been wondering if it is the drug.  I have not had "major" side effects.  Some D in beginning and now terrible heart burn and of course the "chemopause".  Soon after I finished Herceptin I stopped having hot flashes and had a menstrual cycle.  In the middle of that week I started the trial and had spotting for a month.  Nothing since then and the hot flashes have returned with a vengence!

I'm sorry if it has been asked before.  How soon afer starting does the D start?

KAryn

I did not have diarrhea to the extent that others have described it.  I had symptoms other than diarrhea, and my oncology team concluded that I am on the drug.  I had mild neuropathy following taxol and it advanced noticeably almost immediately after starting the pills.  I had two years of Herceptin and my neuropathy had been stable for over a year.  

I did not ever have diarrhea bad enough to take anything for it, and I had more like loose stool for only three months or so.   Then it stopped.  Now I'm occasionally constipated, but no more symptoms to speak of, other than the neuropathy, which seems to have stabilized again.  

I was told that this is consistent with other patients who report that their symptoms abate after a few months; we adapt to the drug and take it without further incident.  

I hope this helps!

Cathy 

I can't find this trial in Pittsburgh, PA.