TRIPLE POSITIVE GROUP

Thank you Posey! Your birthday is Feb 14th, this is a nice coincidence in itself. I really hope I will have much better birthdays ahead of me and I will never ever take them for granted anymore. My last three I actually did enjoyed very much even though I was not in the mood for a couple of years.

Trisha-Anne, thank you for advice. My tooth feels better today but I have 6 treatments left and in case it will get worse I will need to go to the dentist.

Thank you, Kimberbir!

All- I know there's been a lot of talk about being able to search for side effects of drugs as they're reported by doctors and patients. Well, the FDA has made their FDA Adverse Event Reporting System (FAERS) available for searches. I'm not sure how long it's been available, but here's the link. https://www.fda.gov/drugs/guidancecomplianceregula...

I wasn't able to try it on my phone so I have no idea how easy it is to use. Hope this helps.

Hapb - You're right. The information that come out is only as good as the information that goes in.

Hi Jagger, I see you also didn't know you were her2 positive until after your surgery. That was the same as me. I was wondering if you had chemo prior to surgery? If so, did they give you additional chemo when they started herceptin?

Vicky...that is so hilarious; you have coconuts! And I have one raisin lol. Glad you got some pretty bras!!

Jagger, I tried writing you once before, but my message didn't complete. I have a similar diagnosis to you and live just 2 hours from you...I, like you, did a ton of research. I still do. May I ask what research you're referring to regarding oncologists communicating with one another about triple positive? I haven't seen anything like that as yet. It's my impression from all my reading that, while aggressive, triple positive is not the worst bc you can have. It's basically "the best" out of the aggressivecancers. The best bc anyone could hope for would be an indolent hormone positive cancer.

Is this the site you go to, Jagger? I found this panel discussing neratinib. I know several ladies here have talked to their doctors about this, and they say no to neratinib. Dr. Blackell is a top oncologist in the US, and suggests that for women with node positive Her2, who responded well to chemo and Herceptin, and who can tolerate the symptoms, she'd suggest neratinib because she'd rather over treat.

Here is the link:

http://www.onclive.com/publications/oncology-live/...

I feel like I need to pursue more info about Nerlynx

I think listening to Christ Beats Cancer is good regarding the diets but it sort of ends there for me personally. We are all different. We believe different things, some wants to know everything there is, some do not and so forth. Jagger, I can relate to your sudden fear, if I read too much I just think it is the end so trying to keep it to a minimum at this point. Saying that I still want to know your sources...:) and keep informed...it is such a double edge sword...knowing and not knowing...I keep in my head this is not going to recur. Period.

At work I try to keep it a "cancer free zone" never bringing it up so at least I have a space where I am too busy not to worry, knowing damn well it can happen any day, so just trying to enjoy the moment and "forgetting" about it at least part of the day. Sending love to all in this helpful group, the best I have found so far during this journey.

Jagger2015, welcome to this group, sorry you had to join it. I red everybody’s responses trying to add something new and realized there is nothing much to add. This group and the forum became my liveline, I feel guilty for pouring everything here but I was never waved off and was always met with comfort, understanding, competent answers to me questions and tons of compassion. I am so grateful for all this, sometimes when I think what if I had never found this forum and imagine going through the chemo all on my own, I keep telling myself I would have found it evetually. I know I write it all the time but this is just how I feel.

It is obvious we all would like to know what research you are referring to, even though I can only take it in portions, sometimes I just cannot take it anymore and sometimes I just have to know. I believe I am right now at this point where I realize that no one can give you any straight answers, because no oncologist knows for sure how an individual bc would behave. I am rather prepared to be over-treated but the oncologists I met told me that I mat already be, they just do not know. This knowledge resulted in me started to take anti-depressives but I felt that I hit the bottom and there was no other way but so far I am glad I did it. Never thought it was for me but extreme times call for extreme measures. If you need support, comfort, just a place to vent, this is a thread for you

Cherry

Thank you HapB!

SajeScents

After my experience with 2 generic Arimidex, I went with the brand name. I feel the same about the Prolia injection.

My sister-in-law (not a cancer survivor) takes the Prolia injection. She, too, has reversed her bone density lost.

My MO wanted me to wait 21 days after my last Hercepin before getting the Prolia injection. He is a one at a time guy. I bet he eats is food separately (meat, then beans, then potato ...). I don't know. I made that up about him. He just never wants do multiple things to me.

Vicky

Thanks SpecialK.

I did have flu like symptoms. I got the instructions AFTER the injection on how to deal with this. My MO wants me to double my calcium one week before injection and two weeks after injection. He said for some women it helps with the flu like symptoms.

I don't know if it was or was not the injection that caused the flu like symptoms. I think my body is just tried from all of this. When the Nurse brought the Prolia to the station I almost walked out and said forget it. I think emotionally I had enough at that point.

Why did I stay? This was the Nurse that always gave me my Neulasta injection. She has been kind, tender, listening every time I saw her. Her past demeanor with me was the only reason I stayed. It was early morning and I knew if I walked out, she'd have paper work to do about it. I didn't want her to have a crappy day.

Strange how that played out.

Vicky

I too did not get my HER2+ status until after I had had my lumpectomy and finished brachytherapy. I don't know if no tests were done on the biopsy or that they just found it on the final path report. I remember my surgeon saying at my one week follow-up that the full report wasn't back yet (Surgery was Dec 22nd so don't image the lab was running fully staffed). I don't think the initial treatment would have changed but team did add chemo and herceptin much to my surprise because I went into my first appointment with my MO just thinking I would get AI's. Yes, the HER2 threw me too. Still have 4 months of herceptin and who knows how many years of AL's as the recommended time keep going up. Keep hanging around and these ladies will be there for you.

Posey, I would be thrilled about it if I were you. You are amongst the lucky 20%...:) I think it is important because you know the treatment has worked a 100%, how strong ER+ and PR+ are you? Do you know? Ok low PR but ER? I will try to find the link going back in the thread.