TRIPLE POSITIVE GROUP

Hugs back to you Pamela. I actually appreciated reading responses to your post, as I too have ruminated over causes and "what ifs." So reassuring to hear others' well-articulated thinking. Thank you everyone!

kmntwins

You are pretty far out from having had chemo. Below is a link to a very lengthy paper on Nerlynx. I know there are some on here able to decipher all the scientific mumbo jumbo, but I'm not one of them. I did however note the following passage:

"In clinical practice it is likely that neratinib will be sequenced shortly after the completion of adjuvant trastuzumab. The results of the adjuvant trastuzumab studies suggest that patients are at a higher risk of recurrence closer to completion of adjuvant trastuzumab, and the risk of recurrence may decrease over time."

With your stats, the risk of recurrence were already low and your risks decrease the further out you get from treatment without a recurrence.

I will be interested in seeing what others have to say about this new drug and if MO's all start recommending it. The last time I saw my MO was in June, so prior to this being approved.

Here is a link to Nerlynx

PoseyGirl, of what I red in one study on bc connected to pregnanc (in Korea) on the web there was no particular condition on whether the nodes were positive or negative. Instead it said that those who was diagnosed postpartum had worse prognosis then those who were dianosed during the pregnancy. It was not explained why, I do not understand what is the difference but it might be as you say the more into the pregnancy the higher the hormone level is and after delivery it will be a havoc which can cause a bc. As far as my diagnosis is concerned, the tumor is 1,5 cm, I am highly Her2 positive and have high Ki. Besides I an getting paranoid and do not trust the doctors, feels like they do not want to burden you with any detailed information, I have to dig it up myself in order to be able to ask the right questions. And when I do I see it bugs them they start to look at you like oh, you are one of those. What I am trying to say is that I do not know how accurate the stage diagnosis can be If they only base it on SN surgery. It is still an IDC and it has vascular strukturer so the cells are in the blood and they say they cannot check it, at least what they say here, and that is why I have to do chemo. They do not do any scans and they told me they wouldn't until there will be any symptoms. I saw several profiles here where people were misdiagnose in the beginning and they had small tumors and no involvement. I understand these are the rules of this game, but I still have hard time to accept all this situation. Exactly as you said, like stubb in the heart of completely pointless regrets. I am so glad I can read about everything here and pour out everything I bear inside. A few days ago while in the shower it hit me what would I have done If I had not foundthis forum? My first thought was desperation,total lonliness. And the second thought was oh I would have sooner or later, I was after all turning the web upside down for info. Cherry

coach Vicky congrats on your last infusion! I am so happy for you!

Specialk you are amazing thanks for all the great info. I'm especially interested in the info regarding nutrition, here I thought a plant based diet would be better but there are flaws in that too! It's just so darn hard to know what to do with some many different perspectives out there. Thanks for sharing specialk I feel your info is the most reliable

Posey I think the anxiety and fear does ease up somewhat but for me it comes and goes. I am almost a year in and feel much much better than when diagnosed but I have days where I get myself worked up about recurrence.

I have to constantly remind myself one day at a time and stop trying to predict the future lol

My husband called my MO to ask about the new drug Nerlynx. My MO said that they had lengthy discussion in their group and they were surprised that this drug was passed. He said that the improvement in preventing recurrence is too low in comparison to the possible side effects. He was especially concerned about liver toxicity. All in all, he doesn't think I would benefit from this drug.

I'm curious to read about others' MOs and their decisions regardingthis new drug.

thanks Hapb! There aren't any results published yet. Interesting question about the Herceptin, I will ask my MO at my next appointment. He has stated multiple times that the AI is more beneficial than HP because the HER2 feeds and grows off the hormones.

deni1661 - Congratulations on being almost done! I'm surprised my MO fought to get me this and even more so that the insurance company approved it. I don't believe I've seen any studies on the effects of HP for a year, so I'm a little concerned about long term issues. Have your doctors discussed this with you? My tumor was only 1.2cm and from everything I've read on here, it doesn't sound like they usually even give Perjeta to people unless their tumors are larger than 2cm, let alone give it to them for a full year. Believe me, I'm not complaining, but I do find it curious.

The clinic I am treated in did a neratinib trial back in 2011-2012. I found this article on their website. Now it is not a scientific one and it does not say how many patients were enrolled but it tells about a woman who participated, sh suffered diarrhea as one of the se. There was a link in English

http://ki.se/en/research/smarter-drugs-to-save-liv...

I was searching for neratinib before because it seems that it can cross a bbb and I asked my onc whether I can get it but he said that I will only be getting Herceptin.

Back in 2011 there was a user in this thread Christean, SpecialK knows her, she was enrolled in a lapatinib (Tykerb) ALLTO trial but could not do it due to the se, she mentions it in her profile. According to her it was the lowest point of her bc experience so ill she felt and had to go back to Herceptin. I was also looking for info on lapatinib because theysay it also crosses bbb.

Cherr

Dannajae, I haven't met with my MO yet, but my breast surgeon brought up the option of no chemo for me. I wouldn't think he would do that if it weren't a possibility considering triple positive, but we will see. I get final pathology on Wednesday from my lumpectomy and will let you know what is said then. I don't want to give you false hope - chemo definitely seems to be the preferred line - but you're not the only one to hear that as an option.

omg Coach Vicky that's funny. I was at a sporting event Friday and someone told their child not to sit to close cuz I had cancer and it spreads. I was laughing so hard I cried. Poor kid. And just to be a b***h when I got up to go to the bathroom I purposely touched that lady. Her face was the best. My husband looked back at her and said "you better go see your dr"

Shelabela, no, please say she didn't. Are people analphabets, ever red a book or paper? Anything except for a drive-in menue? Now your husband was funny, what a great line. What kind of adult this child will be when he or she will grow up with the parents like this? Stupid people is the worst kind Unbelivable

Hi guys, when is it better to take my Zofran? I have an infusion in the morning 10 AM. Now or right before it starts?

There is another thread on Nerlynx, very recent, started in July by Moderators. The user geewiz used to be on this thread a lot before, she participated in a neratinib trial years ago

Here is the link to the Nerlynx thread. I posted what my MO told me this week when we discussed it.

https://community.breastcancer.org/forum/80/topics...