Neratinib Clinical Trials

Well ladies, here we go again.  I picked up my latest round from the Trial Nurse this morning and will be starting back again at 200mg.  I also have been given Lomotil and Imodium to take for the first few days to see if that will keep the diarrhea under control.  I was glad to hear from her that, if I have the same reaction despite all the anti-diarrheal meds, I'm to let her know right away (I send an email report to her every 3 days) and they won't wait to reduce the dosage again.  I've been told I can go as low at 120 and still stay on the trial but I'm hoping 160 is the magic number.  Can't say I'm not really anxious about starting again tonight - I feel like I did when I knew my next chemo treatment was due and I just knew it would make me feel miserable.  Let's hope that's not the case this time!

KristyAnn that's amazing!  You are my inspiration that this can actually work!

I've been following this post for the past few days.  I started in the trial today.  I,m taking the meds at noon so that if I have any reactions I can hopefully deal with them after work at home.  I'm hoping that I'll sail through this as I did with my other treatments.  Keep in good spirits everyone of you.

I first started taking mine in the morning (that's the trial protocol) but was really bothered with nausea during the day.  Dr. determined it was because I probably didn't have enough food in me at that time.  Switched to after dinner and that worked much better - much less nausea, really just occasional queasiness that 1/2 Gravol took care of.  Restarted the program last night but they've added Lomotil 2x per day for a few days as well as Imodium if needed (took it this morning).  Hopefully I will only need the Lomotil for 3 or 4 days in combo with the Imodium to regulate my inner workings.  If it isn't working, I'll be letting them know right away this time and they won't wait a month of me riding the 'porcelain bus' before they lower the dose again.   Bought a new pair of jeans yesterday - the weight loss meant a size 6 - haven't worn that in 20 years!  Skinny jeans no less but I certainly don't want to lose any more!

Hi!  I take mine at lunch time because I have to take some other medication and vitamins on an empty stomach and then I don't have enough time for a real good breakfast and at coffee time I don't have enough in my stomach and I eat a good lunch--usually left overs so that is the best time for me.  I sure don't want to get up at 5:30 in the morning.   Hope you are all doing well.  So far so good for me.  I am the first at my clinic to start on the clinical trial.

I'm back to my morning routine and that seems to work best. I haven't had my period since I started the trial, don't know if this is related to the drug.  When I was on chemo it stopped and didn't return for 10 months after, so we'll see.

Bethany:

I was told that they want women of all age ranges to get a good idea of how it works for everyone.  I just started on Monday.  After reading some of the sidefx I decided not to use dairy products from the start.  I have some loose movements but I can handle it.  Also crampyness when i have to go. Don't know if I'm on the neratinib or a plecebo but I'm OK with that.  It will hopefully help someone somewhere.

Is anyone having muscle/bone pain in the trial? Ive gone off of everything else but the trial drug and now the Dr wants to go off of the trial drug for a week to see if that helps. Im starting my forth month.  Cora

I start the drug (or placebo) on Friday.  I see that many of you take it in the morning.  Does it cause drowsiness at all?

Very true Bethany everyone counts and I hope that you will give this a go.  You are young and I would tell my girls the same thing.  You are the same age as some of them and I know I would not wish BCon any of them.  It's a hard road and we have to be strong warriors on it.  I pray the best for you.  I had a good day and I like it that way. Still working full time .

YAAAAAYYYY Kristy!! I am sorry, I don't know why my reply did not post I am so happy they finally found the right dose for you. I am proud of you for hanging in there and I hope you had a great D-free weekend!

Cora - I have not exprienced any joint pain at all with the drug but I did with a few of the AIs . I do not miss the joint pain but I sure do wish they would let me take something for estrogen! I hope they get to the bottom of it for you!

Annamari  - Wise choice to stay away from the dairy! I am so glad you are handling it OK. 

I wish ALL of you the best of luck!

This week is test week, I hope to come back Thursday with good news! 

Cranegirl,

I've had problems with foot and leg pain just as I experienced during and after Herceptin.  I understand from reading some of the research literature on Neratinib, as well as from the trial nurse that neuropathy can be a SE.  I'm on 240mg. During the first several weeks I had diarrhea 1-2x daily and some mild nausea, but that has all gone away; however, the leg, foot and arm pain is still there. I call it "background" pain. It doesn't interfere with my day-to-day activities, but when I am still or laying down at night, that's when I feel it or am aware of it the most. I just finished my 1 month followup; blood work, liver functions & EKG are all normal. I have to say that minus the diarrhea early on my experience with Neratinib seems pretty much like my experience with Herceptin.

Hi everyone... wow you miss a lot when you're not here for a few days!  Cora, my joint pain is minor but I'm sure it's the Arimidex since I've had it long before I started the Neratinib.  Not enough to even take Tylenol for though ... my MIL's 96 and lives with us and I get a running commentary on REAL joint pain that's for sure!  Annamari I haven't restricted any food type but find the trial drug's an appetite killer regardless.  As for nausea Anita, I experience more of a low grade queasiness most of the time rather than out and out nausea - especially since they reduced the dose.  It's still there and I go back in to see them on Fri and they'll probably reduce me again to 160mg. The BM's have definitely improved and only have 'episodes' infrequently and Imodium seems to keep it in check.   Kristy, sounds like you're back in the groove and going to have an exciting few weeks with your girls.  I think I'm looking after my 16mo old grandson, 3 yr old granddaughter and the other two that are 10 and 12 this weekend .... I'll need a vacation for sure after that!  As you can tell, I'm definitely more than 30!!!!

well tomorrows the day i go to sign the paperwork and start enrollment.  Im a little nervous about the side effects.  I have three kids im pretty active with, so hopefully i'll be ok.  May even get the placebo right?  Does anyone else go to breastlink in santa ana cali, for this?  Does anyone have any advice for me ?

hi suemed,

i posted a reply, i thought!! anyway, i see the onc tomorrow, then have to do my tests, but since i jst had a PET/CT im hoping i wont need too many scans!!!  I would love to have someone to compare notes with whose starting at the same time as me!  Our diganoses are very similiar, except i had a couple of nodes, but i had chemo first and a complete response.