Neratinib Clinical Trials

I have searched this thread but missed any mention of doctors suggesting that Neratinib possibly may help prevent "cross talk signaling" between the Her1 and Her2 receptors, or the Her1 or 2 receptors and ERs.  I believe I read of this possibility somewhere and if true, could it be part of why Her2+ cancers can sometimes exhibit resistance to trastuzumab (Herceptin)?  This is complicated stuff for me to understand, but if the anti-cross-talk question is valid, it may give another reason to sign up for the trial.

bird

Cloud,

I would go ahead and try- only 50 percent are getting the drug and most can control with Immodium- only a few of us get the really rotten side effects. Maybe you could start at the beginning of Spring Break or something where you would have a few days to adapt and see how you are reacting to the meds.

I can tolerate some dairy now- dont really push my luck too much on it though and I also have to be careful with beans/really high fiber veggies- I eat them all the time but have to make sure they are in a mixture (vegetable soup) and not just straight by themselves. I can tolerate a little chocolate but too much can push that one into some bad episodes also---- so basically a really healthy diet with very limited treats for me!!!

Kristy

Ipohgirl I don't like the mammos either.  Maybe you could ask about having an ultrasound instead.  I don't know if they would go for that but they might.  It would be much more comfortable and still get the job done.  It seems every time I have a mammo they also have to do an ultrasound any way so I would figure why not.

Meco,

My MUGA dropped at the 3 month check- no symptoms except a little tired- but Im on femara, working fulltime, 5 kids (3 still at home) etc so fatigue was not a big change from the extra fatigue during chemo and rads- they are watching me until the 6 month visit in April. My MUGA never dropped during chemo and rads and herceptin so cautiously optimistic.

I am finally getting back into the walking routine which I am hoping will also help- between the horrible side effects the first 6 weeks and then winter crud, I have not been able to exercise regularly- back on the band wagon now so maybe that will help too!

Kristy

Hey Ladies! I read in some earlier posts that some of you were comparing pill types to see if we could figure out if we were getting the real deal or a placebo. Mine are salmon colored on the outside and an off white color on the inside. I don't think its a 'white-white'. However,I've been having stomach issues since day one. I'd appreciate any thoughts..........

rebekah 

Very interesting about the dizzy side effect... I had that too but always associated it with the D episodes but now that I think of it, it happened a couple of other times as well.  When the D was really bad, I spent a lot of time on the bathroom floor trying not to pass out.

I have a question....has anybody had a drink of wine while in this trial?  If so, did it make you feel worse?

Welcome bonbon! I also think I'm getting the placebo, but my research nurse also reminds me that, like you, I handled chemo and Herceptin with very few side effects, so I shouldn't think that I'm getting the placebo. Thanks for the info about the new one-pill dose.



my2boys: I have had a glass or wine or two while taking Neratinib with no ill effects, but since I'm not sure I'm getting the drug, I guess you can't go by my experience.



Thanks, Franci. I teach high school English - my kids just find me to be a laugh a minute !

I have had wine as well with no ill side effects.  Ever since my chemo, I find that alcohol does not have the same effect on me.  I would have to drink 2 glasses of wine to feel something now, where as before, one glass of wine was fine.  My husband says I'm a cheap date

That sounds really interesting, Anne - share some of the high points of what you learned.

Sue - The nutritionist told me that the two big no-no's were alcohol and soy.  I was surprised by this, but she said that alcohol has been linked to breast cancer and soy is okay in small amounts, but not as a regular because it affects hormone levels.  I just started enjoying soy chips too.....grrrrr.  She said an occasional drink at a social gathering was okay, but to seriously consider limiting my alcohol to just that....special occasions. Dairy is important, since most of us have entered "chemopause" and we have to be concerned about bone density.  She said that fat free dairy is just as good as 1 or 2 percent dairy for calcium.  She also made a point of telling me to watch the fat content of the foods I eat, since a lowfat diet is important...this means limiting or eliminating red meat from my diet.

Vitamin D levels are very important....mine were checked and although they weren't alarmingly low, they were low enough that she told me to take a supplement each day and I will have them checked again in a few months.

On the other hand, I was happy to learn that those dried fruit pieces I've grown so fond of are wonderful and healthy and cracker barrel makes lowfat cheddar cheese, so I can nibble on cheese again.  Fish is important.....fatty fish is the best, like salmon.  She also told me that I don't need to shy away from shrimp even though they are "high cholesterol" because eating them doesn't necessarily raise cholesterol.  The same thing with egg yolks.  Both are okay as long as I eat them in moderation.  I'm also battling high cholesterol, so she sat with me and went over everything I eat on a regular basis, item by item.  It was worth the time. 

Mare - Thanks for the info.  I would much rather take 6 small pills instead of one horse pill so I guess it's for the best.

Have a nice weekend ladies.

Anne - thanks for the info! I'm surprised that soy is a no-no since you, like me, are ER-/PR-. I thought soy wouldn't affect us, so I haven't looked for it in ingredients. I've read about the alcohol on here, so I've been watching it. Next week is spring break and I'm going to the beach with the family, so I'll break that no no then! But I've cut on my normal glass of wine every few days. Have you tried the dried Calimyrna figs from Trader Joe's? I love them. They also make a good 1/2 fat brie.

Hope everyone is doing well!

Sue

Have been on the drug for one week. Mainly gas issues and nausea. I am hoping that the fatigue isn't cumulative! thanks for info on dairy. No D. Perhaps I'll try taking  with dinner and may help with nausea during the day.

Glad to see so much good information on this thread.

 I started the trial in January and had a horrible first six weeks of the D. Then it seemed to get better, perhaps because I changed my diet. When I thought I was out of the woods, I returned to my normal vegetarian/salad based diet. Disaster! Dairy is out too. So hard to change to a low-fiber diet after how hard it was to change to a healthy one.

 So my new issue is weight gain and bloating around the middle. Terrible leg cramps in the night that are unlike anything I've ever experienced before. Can't unbend my foot or relieve it readily. I think potassium deficiency from all the diarrhea may be to blame?

 Anyone have experience with bloating/weight gain despite reduced food intake and maximum diarrhea output?

 Thanks!

cary 

Cary,

In the beginning I only had a mild case of diarrhea and nausea, dizziness and fatigue, but have had continual problems with leg cramps, foot and leg pain (from the knees down) to the point that I've taken a two week break from the trial and am on a mega dose of potassium. The bottom of my feet feel bruised and the top feels like I have "tendinitis."  Blood work indicated that my potassium was only slightly low; however, this is exactly what I experienced while on Herceptin.   Otherwise everything is pretty much ok. I would love to hear from others, if they are having a similar experience.

Thanks.