TRIPLE POSITIVE GROUP

Pbrain - back on Sep 19, 2013 at 10:56am you gave one of the easiest-to-understand descriptions of the BRCA gene that I've ever read!  Thanks!  

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I'm getting caught up on the thread after many weeks of madness.  We moved to Arizona a week ago and I have my first Herceptin infusion with a new MO this Thursday. 

I just found out I'm BRCA negative this afternoon.  I finished radiation on September 13 and had another ultrasound (a follow-up) on my axilla September 20.  The results were good.  Last time (April 2013) was BiRads III.  This time I guess it was BiRads I.  The RO left a message saying everything was normal but they had already relayed that to me following the ultrasound. 

As always, best wishes to everyone!

Yay!  Welcome back LeeA.  I hope you are doing ok in Arizona.  I so wish I could live in those warm places like you.  I'm already gearing up for ice, snow, cold and dog walking spiked shoe implements :-)

OConnor, you are so sweet and so are you Moon and Cami.  I was ready to go with the "maybe they can't afford it" until Caryn told me on her visit this spring that she thinks her sister is a gold digger.  I guess the new hubbie is loaded with dineros.

You are right, I need to ignore.  And it doesn't bug me that much, it is just that I've had so many strange experiences since this diagnosis (as many of you have heard--har!) and yet I think of myself as the same easy-going, doofy scientist...maybe a little different from the experience, but still just good ole me.

And OConnor, stay strong.  You will be fine this Friday.  Be prepared for a long, long visit because they run the chemo very slowly on the first time.  So bring lots of entertainment.  We want to hear how it goes since you are the first of us to get this new treatment!!!

Pbrain, I hope your head is feeling a bit better by now!  Gee whiz . . . this thread was an emotional roller coaster!  

Nicky, I was SO HAPPY to read about the results of your PET scan!  Your post made my evening! 

SpecialK, you made beautiful babies who have grown up to be beautiful adults!  I loved your post about raising them to be leaders.  

Chicka-D, I hope you're enjoying your cruise.

Camillegal, you always make me smile! 

Shasha, so sorry to hear about your sister but very happy that you had such a good coming out day in your community.  I remember when you first started posting you mentioned wanting to do fund raising and now that opportunity has presented itself!  

And where is lago??

As an aside, I'm coming up on my one year anniversary in a few days.  What a year.  What a year . . . 

Pbrain (again), I remember that "oh no, winter's on its way" feeling from my years spent in the midwest (age 0 - 40).  It's hot here but as they (whoever THEY are) say: IT'S A DRY HEAT.  :-)

Lee it's so nice to hear from you and u'r all settled in? That a big move (to me) moving from one state to another and I honesrly don't remember u telling us, I'm sure u must have. One yr anniversary--Ohh that sounds good. And this is a good time to move there it's not the summer heat and yes they say it's dry but remember so is an oven. But I like the star thingy, sounds romantic. Continue with good results and before u know it it will be 2 yrs. Good Luck in a new home.

I haven't seen Lago on this post in a couple of days, but I personally think this is a very busy time for her with organization business going on with October being here. The run, donations etc. So Lago u;d better be all right

pbrain. its them. ouch, family sometimes! my own sister reminded me that our own brothers wifes sister died of bc, 3 months after being diagnosed! didnt say sorry, or how was i doing or anything! my own mother said about her, that she "just gave up", and started wearing diapers. and never got out of bed. i talked to the sister that was taking care of her, and it was already stage iv, and in her brain when she was diagnosed. peoples unintentionally misunderstanding and cruelty is something else. and it could be the other thing you talked about, or jealosy. leeA, happy anniversary! cami, you are so sweet and willing to hold up the benefit of the douubt in all cases! just thee kind of person i would fill my life with if i could pick & choose!

Pbrain, you are not a loon. Loons fly, you tripped.... LOL.



Staple out is no problem they pop out even faster than stitches. Its kinda funny how fast they come out. The dont really cross over like paper staples do, so they are not as hard to remove. (Hope that makes up for the loon remark now) LOL.

Who knew loons were so nice and helped other loons? That makes me like them even more than before I have always liked the sound they make.

SpecialK u are just to sweet--another loon will come cuz they think it's their eggs, they don't know any better--That's why they are loons. U silly loon. See the silly stuff I know, nothing of importance.

Oh Fluff we all hope it's nothing but u have to have it checked.

fluff - I think that's our lot for the rest of our lives, to worry about every single lingering ache being more than something simple. At least you are getting it checked, maybe you have a small fracture from your fall? I have tingling on the left side of my back these days, which I'm pretty sure is just from the baby getting so heavy to rock now, but my brain does the exact same thing and imagines the worst. Sending you good thoughts!

I am just wondering if any herceptin veterans have remedies for all the dryness my body is experiencing after 11 rounds - my nails are in a fragile state and don't get me started on my nose and other body orifices. I got my hair cut (yay! enough hair to cut finally) and the stylist told me I needed a really good conditioner. I didn't mention that with an 8-month-old baby, I rarely shower let alone care about my hair's optimum hydration...

Thanks in advance for any suggestions.

Hi Marlene.  My fingernails have been very thin and brittle - I was blaming it on the taxol but maybe it's the Herceptin.  My last Herceptin was 3 weeks ago, so maybe they'll improve.  In any event, I read somewhere on BCO that something called "Rejuvacote" helped the nails dramatically.  I actually bought some (less than $10 on Amazon as I recall) but haven't used it yet.  It's like a clear nail polish that you put on daily.  As for the hair - I used cold caps and never lost my hair, but it was very dry and had no body.  At my last color appointment, we did a "treatment" of some sort after finishing the color, and it really helped a lot.  I couldn't tell you what it is, but she applied it, covered my head with plastic and I sat under the dryer for about 15 minutes.  Then she rinsed it out with just water.  Your hairdresser should know something like this to use.

I am triple positive. I was diagnosed in late March and had a double mastectomy in early April. At surgery, two tumors were found although all pre-op imaging showed only one. The largest dimension of the first tumor was 1 cm, and the second .9 cm. Both were triple positive and had a high proliferation rate. They were both grade 2. I was diagnosed as Stage 1. I had 6 rounds of TCH. After completing the TCH, I was started on tamoxifen at the next infusion of Herceptin and will be on both until May when I am through with Herceptin. Were you on Herceptin and tamoxifen at the same time? Did anyone else have more than one tumor? I truly appreciate your insight! I am 39 years old with a little girl and husband that I adore. I get very scared that I am not goo g to see her grow up. I think I am more nervous than normal because I know 3 more people all younger than me that we're just diagnosed. Love and strength to each of you!

Ah crap. Just got back from lab work. Another infusion of magnesium. Over 14 months PFC and still getting IVs. Sucks.

Marlene, welcome back and you are looking good!  I have been using Curel anti-itch and it is wonderful!  I'm my regular dry self, but I know I probably have way drier skin than usual because I itch and itch.  Give it a try.  It is relatively inexpensive, in the drug stores and walmart/target/kmart/walgreens etc.

Patin, your friend probably had a glaze, which is a clear conditioning coat they put on hair to smooth the cuticle.  I've had one or two and they do help to make your hair feel much better.

Hutchins, I'm amazed they didn't see the second tumor on MRI.  I hear that technology captures every little nuance.  I'm on arimidex (tamoxifen for us post-menopausal gals) and still doing herceptin.  Hang in there.  With your diagnosis and all of the new treatments coming out for triple positive women, you will very likely be here for a very long time.  I'm petrified of recurrence, but there are two new treatments that make herceptin so much better, that now I feel a little less frightened.

Thanks guys for the staples reassurance and the hysterical comments!  I'll keep you posted.  I'm putting my emla cream on the wound tomorrow before I go visit Nurse Ratchet at our corporate wellness center.  ;-)

Oh and Fluff, get that x ray, but I'm betting you have a stress fracture in your rib from you fall.  I had one in high school from a rough lacrosse game and it took for fricken ever to heal.  It was painful to the touch for a long time.  Bones can heal slowly because they aren't vascularized.  Let us know how it goes, and remember, it could still be there (stress or greenstick fractures don't always show up on x rays)...so stay positive.  The number one cause of malpractice lawsuits in the US is missing the diagnosis of a fracture.