Neratinib Clinical Trials

Hi gals. I had a few days of "light dr" took some immodium and that was it.  Now I seem to be battling a hive like rash that has spread across my chest. I have to stay covered or else I can scratch myself to death. All in all, my SE's seem to be tolerable. I just wish I knew if these were real SE's or triggered by something else. I'll feel like an ass if it turns out to be too much fruit and  bad detergent   I hope you all have a happy and healthy holiday. Hugs to all out there.

Good Evening Ladies,

I met the doctor and we had a nice talk.  He is going to be very nice to deal with.  I feel that I will be followed very closely and I am comfortable with that.

Has anybody heard from Lisa1964?  I hope that she is doing okay.

I will have the tests at the end December and I start the trial in the middle of January.  Wish me luck?

Anne

Hi,  I'm new to this and started the clinical trial about 3 weeks ago. I actually have just been taken off or taking a week break b/c I woke up during my sleep, w/ heartburn, bm issues....stayed up most of the night then vomited the next day..My doc wanted to rule out whether this is a flu bug or the meds...I have had one really bad day each week since I started of bm issues so seems like I'm on the drug. We will be meeting xmas eve to decide whether to lower the dose or even consider taking immodium daily w/ the pill. I don't like that idea only b/c I can get constipated easily and the idea of taking immodium daily doesn't sound so great..but guess have to wait and see. I do definitely think the meds have decreased my appetite and caused some nausea and bloating especially the day before my day long explosion...Anyway just wanted some input on your recent experiences w/ the trial. I hope you all are doing well. Thanks!

Tarheel,

I havent had any problems with neuropathy on nertainib- the problems I was having seemed to be eliminated when they got my Vitamin D level up to where it needed to be- I went through that a few months ago and they put me on daily D3 and also a weekly D2 for 8 weeks- now its just the daily D3 but my achiness and other stuff all cleared up.

Kristy

Hi Jeanne and welcome to our little thread- we have "talked" in email earlier this year.

I had my potassium checked today and it had dropped to 3.3 so we are upping the potassium supplements and the research nurse is going to talk to the doc about a second dose reduction- should hear from her in the morning. The big D is still hitting 5-7 times a day so it is still considered Grade 2 side effects.

Just a reminder to everyone- if you are in the study and having problems, PLEASE call your onc or research nurse rather than modifying your treatment yourself-they have protocol to handle side effects and you can actually be removed from the study if you are not following the treatment protocol. My nurse is absolutely wonderful and very concerned with getting the right dosage and treatment in place to make me able to stay in the study for the year!

Kristy

Wishing you the best Jeanne- you have been through a long journey and deserve anything good you can get- hopefully the neratinib and great success with neratinib.

Held off the drug today per nurses orders- trying to get potassium straight again and nurse is pushing for another dose reduction.

Kristy

Kristy, as of Dec 23rd I'm on a 2 1/2 to 3 week break to counterattack the SE's and try and get me back to 'normal' before I start again on a reduced dose.  All my tests came back OK as far as liver, bloodwork, ECG etc. but I've lost more than 5 lbs due to the D, the  nausea is still there and I'm so tired I can't stay awake all day at work it seems.  I got an RX for Lomotil, only took it once and It's now the 28th and the D seems to be mostly gone - still the odd episode but the queasiness still shows up every once in a while and I'm slowly getting over the fatigue.  My 'gut' seems to be constantly in a state of rumbling but I'm hoping after the break I'll go back on at 200mg and see if that works for me.  The Trial nurse and Onc both want to make sure I'm free of SE's before I go back on so she'll call me about Jan 7th to see how I'm doing and we'll go from there.  Frankly it's the fatigue that is the most debilitating since it really affects how you get through your day - I also really NEED to get on some kind of regular exercise program to build my stamina which had never recovered after the chemo/herceptin.  I'm really a sloth so this will be the biggest thing for me and finding a way to get walking out here in the COLD country with slippery roads and no lighting - going to -27C today with the wind so it's time to dig out the 'walk away the pounds' tapes and see if I can push myself to get going with those!  Good luck to everyone and Happy New Year.

Kristy, I'm glad you're doing better but disappointed to hear that you're still having the SE's at 160 - they're only reducing me to 200 so I hope I don't start all over again.  Even after being off almost a week now I still have the very occasional D episode and the queasy feeling still shows up on occasion.  I haven't had to eliminate anything I'm eating but I'm sure not eating as much as I was (except for the turkey leftovers last night and I felt like a stuffed hog when I was done!).  Still tired but I'm hoping that reduces over the next week or so.  We're off to see Trans Siberian Orchestra tonight in Hamilton - really looking forward to it despite the -30C temps today!  Boy, I hate winter!!!

Gail,

Glad you are doing better at 200 mg----- 160 mg seems to be a manageable place for me after having tons of trouble at both 240 and 200 mg. I see my onc Monday so we will see how the blood and EKG and MUGA are all doing!

Kristy

Thanks Gail, I still have the occasional 'flash' but not enough to keep me warm... how come hot flashes never happen outside???  I've got another week until I check back in with the Trial nurse then we'll see.. I hope 200 is the ticket - she said I could go as low as 120 and stay in the trial so we'll just play along and get it right.  Happy New Year and good health and long life to all of us!

Had my appointment this morning- MUGA scan, EKG, lab and onc- waiting to hear on the potassium and magnesium- will probably get that tomorrow when I go back to the research nurse for the next round of drug. Spent 4 hours there - seemed like an eternity and it was NUTS the first Monday of a new year!

Ive lost 18 pounds the first 3 months of neratinib- mostly the first 6 weeks when I was side effect Queen! But Im not complaining either!!!!

Kristy

Good for you Kristy, having everything holding it's own and managing the s/e's is the trick it seems.  I go back on @ 200mg starting next Monday - don't know whether that will be low enough or not.  They'll try me on that with a combo of Lomotil and Imodium to see if they can get it right - if not, I'll be able to go as low as 120 and stay in the trial... I'm hoping 180 or 200 will do it for me.  Can't afford to lose any more weight or be so tired all the time.

Well it looks like I will be starting the drug in a few weeks.  I had all of my testing done and now I'm just waiting to start.

One of my kids has a special event next week, so I asked the doctor if I could wait until after he is done before I start.  I didn't want to risk SE's for my child's big day.

Smiles,

Anne

hello ladies - i almost disappointed to report that I am practically SE free at 200mg, feeling envious of KristyAnn and her 18lb loss! I'm feeling pretty normal now. I'm also on Cymbalta and Femara, both of which have side effects that include constipation, so in fact, neratinib may be keeping me more regular!  Frankly, I could stand to lose a few lbs after the holidays. Guess I will have to do it the old fashioned way...diet and exercise.

Good luck Anne, and to everyone else, hang in there! 

Gail

Prohealth...Desiree?? If so then we are one of five enrolled there, she is allowed 10 all together. Wonderful group of doctors.  My SE's (if they are SE's) have been manageable. My only complaint now is insomnia.  I'm awake like clockwork at 0300 every morning. I'd gladly take the loss of lbs, but I'm quick to remember that I lost 24lbs on chemo and then gained it back when I was put on steroids for my reconstruction. Fat or thin, thank Gd we're here to complain about it Be good.

Mare