My oncologist has never ordered a PET for me. He said my blood work would show a red flag if there was something I needed to worry about. Do you think that's true or should I push for a PET? I wouldn't assume you will need a hysterectomy for a uterine cyst. They can just laser that sucker. Unless cysts are precursors to the one that shall remain nameless. I agree you need to keep your ovary and estrogen as long as possible. You will miss that estrogen in ways you never realized before. Trust me on that one! Please let me know how next week goes.

I can't thank you enough for sharing all of this information with me. I feel so much better knowing more about the drug and what to expect. And I do like knowing I can quit at any time, but I'm certainly going to give it my best shot.

You and I seem to have a lot in common: Her2/neu+ and I also have 3 kiddos and had a tummy tuck and breast reduction years ago as a 40th birthday present to myself :)

But I was 46 when I started chemo last summer and it threw me into medically induced menopause. You are younger than me so I'll bet you got your periods back. I tell all my friends to appreciate their ovaries while they are still functioning because no more periods means no more estrogen. And no more estrogen means mama ain't happy.

Thank you so much for your reply! You are a wealth of information on Neratinib- I learned more from you than from my own oncologist. My doctor never mentioned the possibility of brain mets. I guess he didn't want to scare me. He just said I had an 89 percent chance of being recurrence-free for the next 5 years and that Neratinib would increase that to 92 percent. Do those numbers sound right to you? Like you, I am very interested to know my chances of disease-free survival. Funny how I was never a numbers-girl, but have had to become one. Am I right that the first two years after diagnosis are the riskiest years for recurrence? I'm so grateful for these new therapies, but I'll be even happier when there is more data available! I'm so relieved to hear about the European study you mentioned. Such great news!!!

I am coming up on 6 months post-Herceptin in November and went ahead and said I would do the trial. I am scheduled to go in and sign all the paperwork on Oct 19. I hadn't realized there would be a questionnaire that would determine if I was eligible to enter the trial... I'm praying I get accepted. The Perjeta did a job on me. I had such horrible diarrhea because it took a while for me to figure out how much Imodium to take and when. I developed an anal fissure that has just recently finally healed. Sorry if that's TMI. I was just curious if Perjeta had the same affect on you and if Neratinib was easier or worse to tolerate. My oncologist did say the Neratinib trial was more of an Imodium trial (ha!) so I'm hoping I will get thorough advise on how to manage the diarrhea.

Thank you, thank you, thank you for sharing your knowledge with me! You just made my day!

Yes, ma'am. I'm pCR, too, and I am just finishing up a year of Neratinib. It is a magnificent trial--everyone gets the drug because they are just doing the trial to see how best to manage side effects. No placebos. Cancer prevention for us all!!

The side effect is diarrhea, and I've been able to manage it very well personally. (They're testing how much immodium it takes to control.)

The thing about Neratinib is that it made it to stage 3 trial for the wonderful effects it was showing on reducing brain mets in HER2 early stagers. We are prone to those because Herceptin--though wonderful--is too large of a molecule to cross the blood-brain barrier. We don't get any protection up there. Neratinib is SMALL and makes it through to the HER2 receptors in our skulls as well as anywhere else in our body. Not at all as effective as a first-line treatment as Herceptin is, but.... extremely promising as a neoadjuvant prevention med.

Since I started the trial, I've learned someone in Europe has just wrapped up a study on Neratinib that shows it extends disease-free survival as well. Not just brain mets--recurrence overall. I'm so sold on the stuff it's crazy, and I'm so glad I had the opportunity to get some before it hits the market. (Honestly, it's expected to be FDA approved inside of 2 years--it's a done deal--but in 2 years it would be too late for me to get any... you have to be within 6 months of finishing Herceptin.)

I really hope you consider doing it. Besides the manageable diarrhea, I haven't run into any other side effects. It's an oral med. It's a little trying for the first 3 months (monthly visits to get drugs and EKGs), but then you only have to go quarterly until you're through. Only runs 13 months. I highly, highly recommend.

So glad I found this. my oncologist recommended this yesterday and I am feeling lost. I feel like they kept saying " don't worry your risk of recurrence is small at Stage I esp after chemo and herceptin" and suddenly I was being told to start this medicine for a year so I don't get brain mets. I had felt so happy prior to this appointment and now I feel like I'm starting all over again. ugh!
glad to read the diarrhea is managable and honestly your explanation was better than my oncologist!