Neratinib Clinical Trials

gk2bc0

Hello ladies, I'm playing catch-up on all of you. I don't see anyone else complaining about having dry skin.I'm feeling like I am drying out! This must be why the nurse practitioner always asks me if I am having any skin issues.  Of course, it has been cold, the heat is on, and I usually experience some of this, but even my nostrils are cracked and bleeding, and don't seem to heal very well.  I've been slathering on the body balm, using petroleum jelly in my nose, and I have chapstick within reach. On the other end, I no longer have diarrhea!  yay!  and still have an occasional rumble, and I tend to get some nausea when I exercise, but all manageable.  I've been on the trial drug since November 20th, two months down, 10 to go! too bad Femara is in my future for the next 4+ years too.  That stuff is nasty.  Stay well!  Gail

my2boys

Well, I spoke too soon.  My son and I went for a walk after dinner and I had to run home to get to a bathroom.......sigh.  I guess that I shouldn't have eaten as much as I did at dinner.  Small meals are definitely better.

Gail, I have very dry skin too and also the drippy nose just like Herceptin.  I'm glad that you are over the diarrhea.

annamari

Gail.....When I was recieving chemo last winter I had very dry nasal passages and used a saline solution which worked quite well.  I made my own so it was reasonable  as well.  1/3 tsp table salt to 1 cup boiling water dislolve and cool.  I used a Q-tip to apply.  I hope that will help you.

I am on again off again with loose BM's  Imodium on a regular basis is good now to experiment with the dose.  I am going to try 1/2 a capsule 3times a day and see if that will keep things close to normal.  I am finding 1 3times a day too much and the get constipated.  It sure is a lot of trial and error for each of us  Blessings and have a good week everyone. 

suemed8749

Hi to all of us participting in this trial - I hope everybody's major side effects are under control. I've been taking the pills for a week now, and no sign that I'm getting the drug. A few minor issues here and there, but nothing that couldn't be explained by an extra-big lunch or something. I'm thinking that I've got the placebo, but I'm going to hang in there - have to go for my Day 8 bloodwork tomorrow. Every one of us is important to the research, so I'll suck down my six little pills every night.

By the way, did you crack up over some of the initial survey questions? How satisfied am I with my sex life? My clothes????? I was wearing my ugly high school sweatshirt (I'm a teacher) when I took it, so my answer to that one was a little skewed. I had to ask my research nurse how to answer the one about my rating of my health - uh......do I take breast cancer into consideration there????

annamari

Sue.  I also had a good laugh over the sex questions.  An change in your sex life, are yousatisfied with your sex life.  No change and no satisfied.  I am long time a single mom.  25 years already, What a question to ask.  Atleast we're still laughing.

KristyAnn

Gail,

I have really dry skin too- dont know if it is neratinib, femara, hysterectomy or .... you get the idea/ I eat avocado several times a week which seems to help- natural oils from the inside out!

I laughed a lot at the sex questions at my one month checkup- I was so depleted on potassium and magnesium, severe diarrhea all day and night and they wanted to know about sex LOL

Kristy

weety

suemed, I'm not on this trial (yet) but am following it closely to see if I want to join when done with herceptin this summer.  I'm curious what the research nurse told you about whether or not to take the breast cancer in to consideration when asking about your health.  I've always wondered this, too.  Tell us what she said, so the rest of us will know how to answer that question from now on.  I think it's been on just about every form I've had to fill out!

suemed8749

weety - I know what you mean - I went to a new gyno a few weeks ago and didn't know how to answer - Uh, other than that little bc thing, I feel great for a 56-yr-old broad. Anyway, Martha (great research nurse!) said very seriously that I was not to take bc into consideration since I was "in remission." She said that I had been tested very thoroughly with no evidence of disease, so I should answer based on my perception of my health without bc in the picture.

Loved your reaction to the sex questions - what, Kristy, you mean your libido wasn't kicking in between trips to the crapper?

Sue

vickib

I love those questions too! Oh yeah, the constant urge to run to the bathroom really made me want to have sex & makes me feel super sexy too. I really do not have those serious bouts anymore, just once in a while but I often do feel kind of bloated and feel like I might have to go.. It is kind of hard to explain but that is the way I feel. My poor husband! I had my ovaries removed and on different AIs so that already hurt my libido but this was the icing on the cake. I went from saying sorry honey, I have a headache to, sorry honey, I have to poop. How sexy is that?!? I am in my thirties and supposed in my "prime", well that is not happening!! Maybe someday, atleast for my husbands sake:)

We are all doing a good thing girls! I pray this works for all of us!  

beebusted1

Gail: I have really dry skin/scalp as well.  It almost feels and looks as if I have wind burn. I put enough moisturizer on at night that its no wonder I don't slide out of bed. I have been really good with the DR until last night...during kickboxing no less. Not a pretty feeling.I'd love to see what the people look like who will be reading our survey responses. We may all be up for a reality show..passion of the pink ladies.  Be well all.

awhome

I joined phase 3 of the clinical trial the first week of January 2010.  Even though it is a "double blind" study and you are not supposed to know if you are getting the actual drug or a placebo, once the side effects hit - I was pretty certain I was getting the real thing.  Unfortunately, I am one of the minority that has had the more severe side-effects and will be pulling out of the study because we haven't been able to manage them effectively enough to allow me to work while on the Neratinib.  I will be meeting with my Oncologist tomorrow to discuss all of this and will more than happy to share my observations/experiences with anyone else who is interested.

snowgirlcathy

I was supposed to go back on this Friday but am putting it off until the last possible minute to try and deal with some major depression issues which we don't know are or are not drug related.  I have not had any more than minimal depression symptoms over my lifetime before and they usually only lasted a week or so and I could cope.  Since I went on the trial in early December it's been a downward spiral that may or may not be related to the drug, drug interractions with the other meds I take or just one spinoff of the severe side effects I've been experiencing.  Hoping to get a handle on this and restart at 160mg on Feb 15th.  If the s/e's aren't better (dose reduction hasn't made a difference so far) I'll go down one more time to the minimum 120 but then that's as far as I can go.  awhome, I too have found it really difficult to handle the s/e's and work f/t as well as look after all my other family responsibilities - grandchildren, adult children going through tough times and a 96 year old MIL that lives with me... I'm a 'triple decker' sandwich.  Maybe I'm just asking too much of myself and my poor old bod.  Yeah, I laughed at the sex questions too - chemo pretty much stripped all my libido 2 years ago.  Luckily hubby and I love each other enough to be able to  answer 'what's that' when people talk about it!!! LOL!

awhome

I hate to say it, but it's good to know I'm not the only one!  My study coordinator said I was the only one in their study group who had been this bad off - twice I ended up back in the infusion lab with an IV in me because I was so violently ill for hours - I couldn't even keep water down.  After 3 different types of IV anti-nausea meds I was able to finally keep immodium and compazine down for more than 15 minutes this last time.  It took Vicodin to manage the bone pain in my back and legs - which was worse than anything I experienced on chemo to include the Nuelasta aches and pains.  And as a single person, with no motivation for intimacy it has been easy to become a hermit over the past 2 years - so I don't think I even remember how to spell that thing people supposedly do when then feel romantic !

suemed8749

I feel so sorry for those of you suffering from such awful side effects. If you cannot stay in the study, PLEASE do not feel guilty - your participation and honest reporting of your experiences is incredibly valuable to Wyeth and the researchers. You are as important to this study as anybody (maybe this is easy for me to say because I'm SE free and assuming that I'm getting the placebo.)

Wishing you all the best -

Sue

KristyAnn

awhome- I also had a terrible time with side effects- Ive been dose reduced twice, now at 160 mg and Im finally managing the situation. It was so bad at the higher doses that I kep Depends in my desk at work- had a few total disasters and ended up in infusion room getting potassium due to all the big D.

 Hang in there and I hope you get to feeling better (on or off the drug)!

Kristy

my2boys

Good Evening Ladies,

I guess that I have adjusted to the medicine (or placebo) because my grumbly stomach is all gone.  Aside from those two bathroom episodes, I have been just fine.  It seems that it was the first two weeks on the medication that I had a few symptoms.  When I eat too much it grumbles a bit.....soooooo.....I make sure I don't eat too much.  Problem solved.. )

I hope that you ladies with the severe symptoms are feeling better soon.  

Anne

fightinhrd123

I go to get my pills on Monday.  Anything i should be prepared for?  guess i should go read the paperwork LOL!  I didnt realize we have to give blood alot! My veins are shot!

annamari

One of the best things I found was to go off dairy for a while so you can see if you will adjust to the meds.  I am Ok after a month but have to watch the dairy products.  I do get some diarrhea but can usually manage with 1/2 to 1 caps 2-3 times a day.  Glad you are giving it your best shot and I wish you well

fightinhrd123

Ok i know its along shot posting this ? on a sunday but when you pick up your pills did you have to give blood?  Its superbowl sunday and i really wanna have a couple glasses of wine, but scared to mess up my labs tommorrow...Stupid trivial ? i know, but anyone have an answer

Thanks,

Laura

annamari

I had bloodwork and and ecg on the morning I got my pills.  I did not have those tests before so if you had the blood work a week or 2 before you shouldn't need it done again.  I go for my 1 month check up tomrrow am.  Also Gail I've been thinking about your dry skin,  I might try something called Bio-oil.  It is a good lubricant and does not leave you feeling super greasy.  My plastic surgeon recommended I use it to soften my chest wall tissue so I can have reconstuction done.  I hope this is helpful and you will be able to get it in the USA  It is available in most drug stores and even Walmart up in Canada.  Good luck to you.  It may also help your dry scalp and hair. 

fightinhrd123

Thanks for responding~  i had all my tests and bloodwork last week~

vickib

I know it is kind of late now but I had several beers the night before and no one said a word..

Girls, You are doing your part rather you stay in or not. QOL is key!

Hugs and Prayers.

fightinhrd123

Well  i just took my first six pills.  Guess its wait and see now?  How long did it take before you guys "felt" any side effects?

Laura

annamari

About 2 days after I started I got some gurggling and a day later some diarrhea  I armed myself with imodium in the house and when I needed it I didn't have to get it before I could use it.  Stay away from dairy products and brown beans.They didn't like me.  All the best girl and let us know how you are doing.

KristyAnn

Laura,

I was queasy and loose the next day, by the third dose I was hunting for immodium!

Kristy

beebusted1

Annamari: I used bio oil after each of my surgeries and it worked great on my scars. I never used it on my face though.  Good luck.

fightinhrd123

well today i took my second dose, and ive noticed my appetite is shot,but nothing else.  Guess it could be in my head! Its very annoying not knowing if i have the placebo or not LOL!

snowgirlcathy

Started back on again on Monday night at 160mg.  Couldn't wait any longer since 3 weeks is the longest lapse to stay in the trial.  Took 1 lomotil Sunday night, Stemetil 1/2 before dinner and pills with dinnerMonday and Tues.. so far so good.  I know the lomotil works really well for me so every 3rd day will be my goal for taking it.  The Imodium does nothing for me at all.  If the D comes back the way it has before, I think that's the end for me... it's so debilitating I find I can't work, have a social life etc.  We'll see....

weety

snowgirl, Even if you have to drop out of the trial, it will still give them important info as to how harsh and horrendous the side effects can be.  I think that is what will keep herceptin looking so great (because of its relatively ease and lack of side effects)  and keep it as the standard of care for HER2+ tumors for a while longer until they can find a comparable replacement that has fewer side effects than Neratanib.  Maybe they will find out in enough women on the lower dosages of neratanib (like you) that it works just as well as the higher dosage they initially when in to investigate.  I just wish herceptin could cross the blood brain barrier. . .

KristyAnn

Cathy,

I hope the 160 works for you like it has for me- world of difference. I rarely have diarrhea anymore- take lomotil maybe once every 7-10 days (more if I eat much dairy) BUT I have been able to add back in a little dairy and still be ok!!!!

Kristy