Calling all TNs

Swanny

Happy Birthday LJ.  How did your exhibit go or is it coming up?

jenn3

Yan - it sure would be nice if they could get that approved for TN patients.....too much waiting.

Happy Birthday LauraJane - hope you spent the day pampering yourself.

Titan

Hi Swanny!  Hi Teka!  Happy Birthday LJ!  And of course my twin Heidi...did you have a diagnostic mammo..or just a regular one...I'm having a regular one in May..I requested a diagnostic and they said no..a regular one is a good thing..a diagnostic is when there is something bad going on...I was like..excuse.me.I DID/DO have something bad going on...didn't change anything though..I just feel that women with BC should be told IMMEDIATELY whether they are Ok or not...now I will have to freak out for a couple of days..I think that sucks...

I don't know how many of you have dense breasts but I do..I read on here that taking Tamoxfin can reduce the density..not sure if that is just for the positives or not...I for one would like to take the Tamoxifin if it would reduce my density..or maybe I wouldn't...I dunno..I'm going to ask the onc next time when I see him..if I can remember...

Have a great weekend everyone...maybe spring is coming..maybe..we just had tons of snow again yesterday..and then the tsunimi (can spell it)..in Japan...and that crazy dude in Libya...sometimes I wonder about our world right now..it's scary..

Teka

Titan,                                                                                                                                               Tomorrow my daughter is taking me to see the Johnny Depp cartoon movie 'Rango'.   I need a good laugh!

Huskerkkc

Teka, I went to see that movie last weekend. Couldn't get my 15 yr old son to go but my husband and I went. It's great and movies are a GREAT escape from all this cancer drama! 

Sugar77

Rango is next on our list.  I take my 11-year-old and her friend to the movies it seems every week or two these days.  We recently saw Justin Bieber: Never Say Never, Gnomeo and Juiliet, and Just Go With It, which were all pretty good.

Teka

 Huskerkkc and Sugar77,

'Rango' is a cute movie for all ages.

Huskerkkc

We are a movie-crazed family and I just joined Netflix this week, thinking it might be a way to pass the time on my iPad when I'm sitting in chemo. 

Teka

Huskerkkc,

So many good movies.   Chemo can be a drag.

MonikaV

Good morning girls, I had my exchange surgery yesterday. I feel okay. Pain is under control now. Have a great day. MBJ thanks for the good luck wishes.

Laurajane Happy belated birthday.

cc4npg

MonikaV:  Feels good to be on the other side, doesn't it!?  Glad you're doing alright!

Anonymous

Titan- it was a diagnostic. I was told the difference is in the insurance payment: screening is yearly & diagnostic is every six months. So, in order for my insurance (BC/BS) to pay for the 6 month mammos (typically to be done for a period of 2 years post Dx) it has to be coded as diagnostic.

I am now going to eliminate MSK and my BS, as the only reason I make that trek is for their annual screening and exam which I can get done more frequently (my med onc, rad onc and GP want me to get mammos every 6 months but MSK only does annual) right here at home. I figure I really don't need to continue seeing the BS (he does a good BE, but so does my rad onc) and that cuts one more doc out of this (seemingly)  endless cycle of doctor's visits.

I have four more this month alone: GP, neuro (for my occipital nerve block for migraines) sports med (going to try Botox in my neck to see if it will unseize the chronic stiffness from an old injury), and final ortho on my knee.

But now, I am headed out with my two Boston Terriers for a fun day with other BTs in a nearby dogpark.

27 days until Cherry Blossom Festival...

MBJ

MonikaV:  So glad you are doing well--such a relief to be on the other side of this.  I hope you heal up quickly.  Don't forget:  no lifting or reaching or driving for a couple weeks.  Hugs!

Wow, Heidi:  That is alot of doctor visits.  You must be the healthiest woman on here to have so many interested in your well being!

Luah

Wow, trying to catch up after a week off - visiting my son in Whistler.

Regarding bogus claims, it's so unfair that there are people out there who take advantage of people with cancer by appealing to their basest fears and urgent will to live. I am very skeptical of any information that is not posted on the web site of a recognized medical journal (peer-reviewed research) or qualified cancer center. Suppliers of supplements can be the worst, imho, as they have skin in the game. It totally sucks, but that's the way it is, patient beware.

Kymn: Very good chance you will not require neulasta, as you are on a triweekly chemo regime. Many women find that their body builds back up their white blood count by week 3 and treatment progresses on schedule. (Many of the women here were on biweekly AC which does require neulasta). As for work, it's hard to know how you'll do with SEs until your chemo's underway, and even then it may change from cycle to cycle. My sister did FEC-D and found days 4-7 the worst. She probably could have worked 2 out of the 3 weeks, but had good benefits, so chose not to. If your work exposes you to lots of germs (working with children or needing to rely on public transit, for example), you may be better off taking a leave. I chose to work through my chemo, but I am self-employed, could choose my hours, and commute only 27 step! If your employer is flexible, maybe you could see how it goes...   

Titan

Heidi..I'm on one year mammos already! (next one in May)..wasn't too happy about it.but it is what it is..My BS and Onc give one hell of a BE (onc every 3 months)..so I'm ok with that..Last time the onc said I wasn't as lumpy and bumpy!  WOO HOO!...He said everything was normal breast tissue...I think I will be seeing the onc every 3 months for awhile yet...I dumped the rad onc already...

Isn't it true (and correct me if I'm wrong..which I often am)..but that Tn's rarely reoccur in the breast...I would prefer that the focus be mostly on the rest of me.

We had sun on Ohio today!  Yippee! 

mitymuffin

This was posted on the TNBC Foundation talk forum, and its from the TNBC conference in London, a talk by Dr. Lisa Carey of UNC (renowned TNBC doc and professor):

http://www.cancernetwork.com/conference-reports/mbcc2011/content/article/10165/1817148

Anonymous

Titan- I was told only about 5% recur in breast...

Anonymous

A quick photo from yesterday's Boston Terrier Meet-Up. I call it:

Eating a Bassett Hound... sort of.

MBJ

Heidi:  They are so cute!!!

Titan:  I didn't know that, or I forgot (chemo brain).  Glad you saw some sun today.  Spring is coming and it can't come fast enough.

Titan

Heidi..your dogs are so doggone cute..I had a toy fox terrier when I was growing up..named Friskie..he was black and white also...I miss that dog! Everything was fine until he decided to catch a milk truck in our driveway..Yikes!

MonikaV

Good morning girls. Heidi love the pic.

Ok I am up today and the pain med makes me dizzy and nauseated. UGH!!!!!!!!!!!!!!!!!!!!!!! I don't like taking meds. I ask my DH to go get me Tylenol extrastrenght instead. Have a good day everyone.

Claire82

Where do TNC reoccur?

Luah

TN mets often show up in soft tissue - lungs, liver and brain. Less likely than other BCs to show up in bones.

Claire82

Have you all had body scans? Should I request one?

NavyMom

Mitymuffin--Thanks for posting the link.  Question for all....Has anyone been told that their tumor was "Basal-like?"  I just put that on my question list for my next onc appointment.

Navy

NavyMom

Claire--I had chest, abdominal, pelvic CT, and a bone scan for initial staging.  Then had them repeated one month after final chemo per my onc request.  An enlarged axillary node was seen on my BC side so had to go for a pet scan.  Had that repeated 6 months later and again 5 months later.  At this point Onc will order scans if I want or will just keep me under observation with physical exams every3 to 6 months.  Its my choice.

Navy

swiftbird

HI Ladies, it's been awhile.  Since last I posted, I accepted a new job that moved me to Washington DC area; so I'm commuting from coast to coast. Life has moved on and I am trying to, but wow, I find myself thinking "hey, exactly a year ago, I just had my second chemo..." and it all comes back... 

 I am coming up on my first follow up next monday (21st) and am in fear and dread of it. pre-test anxiety. which is sort of strange because having gone through this, and come out this ordeal a little worse for wear but doing pretty well-- I know I can handle just about anything after facing what I did last year; but on the other hand, the not knowing and guessing is I think about one of the worst things about this process, isn't it?  *wringing hands* I'm nervous I still have a sore breast from time to time; and strange pangs at lumpectomy site; and unusual fatigue from time to time. Being 5 months out from radiation, my logical mind (and this great bc.org site) tells me this is all normal, but I will admit to you fellow travelers that I am nervous.

LRM216

Navy Mom: 

There are some gals over on the TNBCfoundation.org board that had that testing ordered by their BS and it was done on their path reports; however, they are few and far between.  My own experience was that once I found out about the different subsets, i.e., true basal, basal-like and triple neg, I became very concerned as my path stated nothing about what it was.  At my first onc visit, I told her that I definitely wanted the testing to be done and she, having a lot of expertise in triple neg, told me that it would have to be ordered and  then approved by my ins. company.  Since treatment would not vary one iota for me (A/C & T), she felt insurance would not pay for it and it was thousands of dollars to have done on your own.  I let it go at that point, figuring I would just convince myself that I had just plain old triple neg and none of the others!  From the article that Mity copied here, and I was the one that posted it on TNBC, it appears that it still has no specific purpose to know at this point in time.  It does look like in the future when and if more drugs become available and they can target same to the different subtypes, that this will then become a regular test on all TN pathology reports.  Why those few docs of the ladies I mentioned requested the type, I have no idea, but they too were given the three choices all of us get (at least 2 yrs. ago when I was presented with them), of T & C, A/C & T and TAC, even knowing they were true basal.  Hope this helps a bit.

Linda

Kymn

Hi ladies hope everyone had a good weekend. I am starting to get very nervous and sad and scared and angry . Start chemo on thursday and I just dont want to go through this  not really anything else to say just feeling very sad

Titan

Monika..love your pic...I've got to get a new pic on here..that one is over a year old!  My hair is totally out of control..I told my hairdresser to cut it short last time and either she didn't do it or my hair grew a couple of inches..My dd said I that I'm starting to look like her "old" mom. I don't want to look like that any more..I'm not that person anymore...or am I???

Linda..thanks for the info...I guess bottom line..is that if you are basal or not..it really doesn't matter as far as treatment goes..hopefully, in the future the researches can find something to combat the basal tumor..or whatever cause the other subsets...wonderful to be so special isn't it....

Swiftbird..good for you..one year out!  Oh yeah..you are nervous..I still have twinges in my breast..and some aches and pains and freak out at appts..you are as normal as anyone else on here...I understand the fatigue thing...I freak out when I'm tired during the day or even at bedtime...sometimes it is hard to realize that fatigue is normal..we are allowed to be tired..just try to remember back b-4 you were diagnosed and probably didn't feel "right"...and then the stress of diagnosis, surgery and treatments...I would call that fatigue..unless you are feeling like that again you probably shouldn't worry too much.

And nope..no scans for me...but I still have to have an colonscopy this year..Yikes!