Neratinib Clinical Trials

Oh my goodness. Ihave one month oleft and finally relaly read this post. I have had one bad D each day for the last year but my big concern waas acne and sores in my nose that would not go away and I just read someone else say the same thing. Is that a side effect. Has anyone heard how the study is doing and are there any other studies after this you gals know about.

 I was on the board to share my invention that is just on the market . I invented before cancer and got motivated after. So here is that post too but really interested in feedback on the trial.

Anyone know how cinrae from the TCH board is doing? I also wanted to share that I have loads of easy recipes to go with so anytime you need to know what is for dinner pop over and look something up. When I had my surgery I could not or was afraid to move my arms for fear of ripping a stich and using bags to do everything was a huge help and as a chef I had always used them but invented The Bag Holder to have a container to help me to everything that a bowl or plastic containers did. I hope you love it, share it and show some support. I was a TCH girl and currently in the neratinib trial with 4 weeks left. Since I thought I would be dead by now I moved quick and wanted to make things hapen, do any of you feel that way. Praying for a cure each day> http://www.thebagholder.net/  see me on face book too:)

Thanks so much to everyone for your input.  I love the moose image!!  I feel like a fly on the wall, just watching and reading about everyone's experiences before I make my decision to jump into the study in August.  Keep being strong, ladies! 

Hello everyone. I am one of the ones who could not take this. I had 5 days and I called it quits. I would throw up every time it was in my stomach a short time. anyway I do know some that have posted here and finished. I got a call from the chemo nurse that was my study nurse and they want me to sign some more papers which some of which I have already signed but then they asked me to postpone my onc appointment so match their schedule and I said no because I still have problems and need to speak to my onc. Also the fact that they want me to have a mamo every year which is what I will be doing next year. Up till now it has been every 6 months. I can't believe I would be almost finished by now had I stayed with it but I still have problems with my blood counts so I still go every month for blood tests and a Procrit shot. I think I could not take this because my stomach is so sensitive and I have problems with TCH too. When the nurse called I was afraid they were wanted me to try something else. I just can't do it. I am proud of you that have been able to do this. I hope you can but don't feel bad if you can't. Good luck everyone.

Carolyn

Started the trial today. It's funny to sit around hoping to have diarrhea. Geewhiz.

Suemed8749,it is good to hear from you. I do remember you and so many here and on the TCH post. there are so many new ones but a few old ones too. I don't post much nor do I read alot. I got my papers signed and returned but I swear I had nightmares the night before I could get back to the study nurse. I am so glad they did not want me to take anything else. I am 3 years past surgery by a few weeks but still have my port. He said indefinitely.

I wish every the best here.

Carolyn

Leisaparis,

Don't have the infection problem, but I think will all the s/e cause by the Neratinib (like bad acnea), I won't be surprise your infection would be from it.  Keep me update, what your onc told you about it?

.................... 

I'm presently seriously questioning myself if I stay in the protocol.  I'm at the lower dose (3 pills) since one month now and still have problem dealing with:

Diahrea :  have to take immodium everyday then one day off (or two) to have a break, then back on it cause liquid D. (sorry for the crude words).  Really boring cause I have to drive by car to work (highway and brige), and when this kind of D come , it's really an emergency!

Abdominal pain : Tylenol or advil, it comes and go.  Also have bloating (maybe because of immodium on and off)

Nausea : Like while in pregnancy, mostly in the morning and not at the point to throw up.

Stomach: Now taking pantoloc everyday - had more and more burning.

Nose bleeding & itchy : salted spray, doesn't help much now its constantly pain.

Acnea : bad, but can do with it.

Headaches: They come fast, are terrible, but don't last long.

Legs cramp:  Lot less problem with this since at 3 pills.  When it come and hurt bad, I use Voltarin cream.

Hope this will help the newbies.

Suzanne

Wow, Thank-you for all your insights ladies, for relaying your experiences on your most recent of our journeys, It helps me to know what may or may-not happen !!! Please keep them coming, and how ever the graphic details, I for one don't mind at all,

Big cyber hugs to you all

ps: Geewhiz, I can relate to the sitting around hoping & waiting for the diarrhea, as I know I will be in the same boat, Anxiously !!!

Hello, friends.  I have been on the neratinib trial since November; my research nurse and oncologist believe I have the neratinib and not the placebo based on a surge of neuropathic symptoms right after starting.  Predictable diarrhea followed for a few months, but I had had that with Herceptin, also, and the farther I got from the herceptin, it seemed to resolve.  And finally stopped.  I've been practically symptom free since around February.

Until about ten days ago.  I ate a turkey burger, and about an hour later had an indication of food poisoning--sudden onset diarrhea, mild cramps, over.  I had been taking a course of Keflex for a chronic ingrown toenail infection, so I figured it was either the burger or the Keflex.  However, it hasn't let up, and has kind of morphed into a routine.

I had a colonoscopy about eight weeks ago and it was fine.  I am a very regular kind of gal--no constipation or diarrhea during chemo, but both the oopherectomy and the Herceptin increased "regularity."

Has anyone else had a later onset symptom like this?  I recently returned to work after many years of semi-retired self employment and my diet is all over the map now, whereas it was kind of more controllable before.

I don't feel sick or nauseated.  I am resisting the Immodium because I hate it.  I see the doc at the end of July and I'm resisting calling him because of work (I call, he calls back, secretary is alerted, I close door, I leave to go to doc....it's a new job; I'm trying to stay under the radar).  So far this is not of the OMG get out of the way variety of Big D.

Thanks for your help.

Cathy 

For me, it's not really a loss of appetite, but more of being afraid of what's going to set off the diarrhea. So I really try to watch what I eat when I'm at work. At home I eat whatever I want. Even though I know in advance it will give me diarrhea. I'm just so tired of not being able to eat things I want, so I indulge at home. I was told that loss of appetite was one of the side effects. I just haven't had that problem. Sorta wish I did, a little, wouldn't hurt me to loose a few pounds.

I think there is no question I got the real drug. It took about 5 or 6 days, but diarrhea kicked in. There is no nausea, but the stomach pain feels like I am being punched in the gut!

The trial now gives loperamide, which I am supposed to take at the first sign of the big d, but like others here, it causes constipation and does nothing for the cramping.

I'm not so sure I can handle a year of feeling so badly. I am on 6 pills...have others here been dose reduced?

GWiz, For the abdominal pain, try Tylenol or Ibuprofen...

I don't think this trial is in Pittsburgh, PA.  I am unable to find it and my oncologist knows nothing about it....urghhhh.....

Gwiz, they reduce me at the beginning due to the abdom pain - I was managing the D with Immodium (loperamide).  But was still getting terrible abdominal pain. I suppose it depend of your onc.  but for what I understood, they know very well that 6 is very hard to endure.

Yep, you guys are right. They dose reduced me to 5 today. My onc said the same, everyone knows 6 is too much. He said 4-5 seems to be much better tolerated. Fingers crossed!!

Thanks Girls, I am meeting with my Onco and the research team tomorrow for the first time after having just finished one year on Herceptin 5 weeks ago and already I am feeling like some one has taken my security blanket away !!!  I will go in armed with a Brain full of  Information I have learnt from you guys, and of corse this wonderful web site..  Thank You so much for your giving and sharing with each and another, and will no doubt have some Karmic returns in some form I'm sure.  Cyber Hugs to you all, regards

Catherine, Melbourne Australia