TRIPLE POSITIVE GROUP

Thanks Nicky..lol..I will take that deportation!!

Miss Nicky...YAY!!!



Where oh where is Miss Lago?

Nicky that's greatt!

My baseline was 62% then dropped 40-45% I didn' feel as tired as I should of. They were surprised. I'm still not the same as pre chemo , but not sure what the problem is.

6 Cats my cardio also said its not a precise number its a range. Anyway, mine dropped and I hope its up.

Oh PBrain I'm sure it is not ugly, u just not used to it that's all, it should go back to kind of normal after a while maybe, mine has changed alot and so far it's about the same as when it grew in so I think again we;re all different. But mine is better than it was--I was the top ten of ugly hair all the 10 that's how bad mine was.

Liz I still have my port, but it's been used quite a bit and they can't use either arm so it's handy really. It doesn't bother me at all.

Cami:  I'm betting yours isn't ugly either. 

Oh goodness. This dropped of my favorite list. I am 10 pages behind. Welcome Art. Im sure I missed other new people. I am sorry. Ill do a lot of reading to catch up.

Jumping in to the last conversation, I was taken off Herceptin when my EF dropped from 57 to 43 right after I finished my TCH. I did not get to go back on.

Pbrain, when my hair came back in, I called it Hobbit hair! I actually liked it curly. My hair is stick straight. It is back to normal except it has a bit of wave in it but not enough to help. Sigh. It was the one thing I would not have minded keeping from this dang journey! LOL. Also I still have my port. Its my umbrella defense. You know how it never rains if you carry your umbrella.... LOL Much love to all. I have to go back and read now. LOL

I missed a lot! Funny stuff cami! Lots of good news out there from research to pet scans being clear. Happy for all of that. All caught up now, but dont quiz me on who did/got/had/started/finished/higher numbers/lower numbers/no numbers..... you get my drift! LOL. Just remembered my MO was worried about my kidney at one time Fluff(or was it specialk-arimidex brain-see I did pay attention! LOL) but it wasnt because it was doing good, it was when I was in renal failure! LOL. Also, geeze, all of you guys who got transfusions, how did you luck out with 1 unit? I needed 2 units and I got stuck with it that twice. I actually feel like I could use a unit (or 2) right now. But as a member of the "surgery of the month club" I guess its not surprising I am tired. LOL. Much love to all.

What does everyone think about pinktober coming up? Nicky, you know what I am referring to?

SpecialK

Ditto.

I was diagnosed on October13! That first year I felt like I was in a torture chamber. Everywhere I went pink was flashing my anxieties and fears in my face! Last year it was bittersweet. This year I think I am nearly ready to go commando.

We each handle these things differently but this is probably a good time to prepare you newbies that in October it will be difficult to go even one day without being reminded of breast cancer. Hang in there.

Oh Special K I love it--see u'll get it out of u'r system--but that's hysterical--- whys is she here and ho asked her? hahahaha That's why I like opinions. U really have them LOL I'm really laughing at u, u r funny.

PBrain ~ Thanks so much for your response. That is pretty much what I gathered, that it wasn't really used for a whole lot. I did ask them when I saw my number was "high" at 15% what it meant and they did say they don't really know, so there is that. I AM in a small {30 people} clinical trial, so maybe they are wanting to connect that data to the trial somehow. Basically, I started freaking out about it yesterday b/c they mentioned being tested for the TP53 mutation, really on no basis except my age and the fact that I was BRCA-. Maybe this is bad, but I just don't really want to be tested for it. Especially when the research I have seen points to a worse prognosis for people with certain mutations of the gene, that's just not really information I want to hold in my head/ heart, you know what I mean? I have my own theories as to what may have caused my particular disease {stressfull pregnancy/ NICU stay, PTSD and insane worry about all of that for the past 3 years, birth control pills, working as a scientist in a contract research lab right out of college where I worked with lovely cancer causing materials with no thought about it whatsoever, that sort of thing}, but really I am mostly of the "it's probabaly just a crap shoot" mindset. Again, thanks for you smart response.

SpecialK/ Ashla ~ This will be my FIRST year of immersion in the pink, while being in the thick of being PART of the pink. I'm not sure how I will feel about it. I do want people to think before they give money, but I also want people to be aware that this horrible disease happens to people of all ages and does not discriminate. However, I also want people to be aware that early awareness does NOT seem to be the key for many and that more money needs to be given to research for finding an actual cure for this horrible disease. I don't hate pink {the color}, not yet anyway. Breast cancer is not cute, I make sure people know that through speaking with them and through my blog, but I AM STILL CUTE {haha!} so if I want to wear pink, I will, because I still think it's pretty and it still makes me happy. I don't want any negative comments on what I am about to say, I did participate in the "Race for the Cure" this year. I know in my heart that there are likely better places to give my money as far as the kind of research I believe needs to happen, BUT at that time {it was after my 7th or 8th taxane treatment} I wanted to feel like I was a part of something big, I wanted to SEE WITH MY OWN EYES other people who are doing good after all of this crap, AND I wanted to prove to myself that even though I was in the midst of treatment I could still run 3.2 miles and feel good, and I did! What does piss me off though is I just got my free Self magazine for signing up for the race and the ENTIRE THING is filled with pink advertising, it's not even a magazine really, just basically a catalog for different pink crap I can buy to send money to different bc organizations - and now I understand why when the race was in early August, I didn't get my magazine until right now, because they wanted to push all of this crap. So, I may do runs and stuff like that, but it's because I like them and I like the OTHER PEOPLE, but I think after all of this is over and I start trying to raise money for bc research I will give the money directly to the University Hospital where I receive treatment and support.

Wow - Sorry for the long winded post!!!

PS - I haven't been around lately b/c I had my husband block my access to these sites. I am sure that makes me sound like a crazy person, but I needed a break from scaring myself.

PPS - HELL YES NICKY!!!!!!!!!!

Twinmamaheather..



No negative comments whatsoever here. And as for what your husband did....there were times when my family tried to pry me from google and this forum as well . We all handle this differently. I stopped google searching at times but could never stay away from my friends in this forum too long. We've gone through the worst of times together.

twinmama - I have less heartburn with the local Komen races because a larger percentage of the money they raise stays in the local community - those races are put on by the local Komen affiliates, not really the national organization.  I too have run in a number of Komen races in Washington, D.C., with the thought that I was doing good for people - for whatever reason I know an inordinate number of people who have been affected by BC - I always ran with a "in support of" card with all the names, and a "in memory of" card for those we have lost.  I'm not sure I ever thought my own name could be on the back of someone's card!  I also enjoyed being with an upbeat crowd and the closed-off streets of Washington, D.C. in the spring were absolutely beautiful.  Here is a pic of my son, he was probably nine in this photo (he is 25 now), and he ran with VP Al Gore, and Tipper.  My favorite is the cranky Secret Service guy in the background.

Special, I was diagnosed one year from tomorrow.  :-)  I did feel bombarded by pinktober too, and our communications department made a sign that was plastered all over the bathrooms talking about awareness.  It started out with statements like "my mommy died of breast cancer when I was 3..."  A little tough to take when you don't even have your treatment plan or know much more than it is IDC.  Arghhhh!

Ashla, it is funny you say that.  I have much less grey and my brown hair is now coal black.  Black hair runs in my mom's side of the family, but I was always a dark brunette.  I thought I was imagining the black.

Twin, I bet you a million bucks they are measuring your anti-p53 for the clinical trial.  The big thing now is to connect your disease and recovery to a biomarker, so they test all kinds of whacky things.  I know this because I used to be in charge of the Phase IV trials for Roche's biomarkers.  We had one investigator that measured over 28 markers, some for reasons I could not understand...

Ok, so I roll out of bed this morning, and literally, I roll.  My mattress pad had moved and I thought I was lying on the bed while trying to turn off my alarm.  I crashed to the floor and hit my head on a very solid pine rustic Mexican night stand (very rustic, so no soft edges).  I was a bloody mess, so I quickly walked my dog, fed my cat, brushed my teeth and drove to the emergency room, bleeding like a mo fo.  I now have 9 staples in my head.  But that isn't the worst part---they had to cut my hair!!  I am now bald on one side with 9 staples.

I'm such a beauty.  Just ravishing.  Har!!!