Calling all TNs

gillyone

Are there age "rules" for being tested? It was never offered to me and I never asked about it.

Anonymous

gilly- my onc told me I was borderline for testing, and since I had no daughters or BC history there was no need. That was basically OK with me. Wednesday I went to a BC convention and discovered they were actually looking to test more TNs for BRCA gene(s).

 

So, things appear to have changed due to all the focus on TNBC and, since researchers want more info on it, I figure... why not? I don't expect it to change anything and if it helps create better understanding of the disease then it is a worthwhile endeavor IMO.

Anonymous

WTF is all that <address> crap in my previous post?

Sugar77

Heidi - maybe the aliens are putting in secret <address> codes...we haven't heard from them in awhile!

Titan

Sheesh  Heidi...wth..I really am starting to believe you do have aliens in your pc.

Suze..yeah..you are going through crap now...I hope you get a break soon..don't you get at least 6 weeks  b-4 the next phase of your treatment?  ..to let your body rest a little?  

Maybe I will have the brac test done...I'll talk to my onc about it at my appt in May..you know what bugs the crap out of me?  I dont know how many of you have dense breasts but mine have always been dense...the drs always told me that...so why in the heck didn't I ever get an ultrasound or mammo of my breast instead of or with a mammogram?  That bothers me...Women with dense breast should get more of a screening than the ladies who do not...who knows..maybe in August of 09 when I had my mammo..if I would have had a US or mri maybe the cancer would have been DCIS...I know that TN's are fast growing.but really..it had to start somewhere right?..Whether or not I do the test..I definitely going to be on my DD to have an ultrasound or mri..early..if the insurance won't approve it..tough..I will pay for it myself.

lrr4993

Titan - I completely agree re the MRI for dense breasts. After reading a number of posts here about it, I asked my onco about using them as part of my screening in the future. I had an MRI right after diagnosis that showed an area of dcis that was missed by the mammo. Onco agreed without hesitation, but I don't think she would have ordered it without my asking.



The more I learn, the less I trust mammos.

riley702

Hi, Titan! I've been easing back into work. They've opened up a new tower and there's a lot more walking. My feet hurt by the end of the day!

Anonymous

Just checking quickly before heading out to take wedding photos...

Yes, the gals told me on Wednesday that being TN with dense breasts would *definitely* put me into the MRI screening group not just mammos.

Gotta run!

MBJ

Titan & Heidi:  Thanks for that info re dense  breasts and getting an MRI vs just a mamo.  I have a re-check in July and I will push for it.

Suze35

lrr4993 - it isn't the Avastin my doctor is worried about, it's all the chemo as you said. I've done 4 kinds so far, and will likely do another two. If it works, she's a bit concerned about down the road. But I'm willing to take that risk.



Titan - I'm getting a "break" while doing radiation I guess you could say. I'm really looking forward to the end of summer, when all of this treatment ends hopefully.



Heidi - enjoy the wedding and picture taking!



MBJ - I have - well, had - extremely dense breasts, to the point that my mammogram report last April commented that self exams needed to be emphasized. I never saw THAT report, just a "you're fine" letter, and no one mentioned my dense breasts. 5 months later, two large tumors. Push for it definitely.



I plan on setting aside money for my daughter that she can specifically use for MRIs down the road should insurance still be denying them. It sounds a little silly, but I will do whatever I can to give her the resources to prevent being where I am right now.



I appreciate the good thoughts. I didn't want to do it, but I upped my Ativan a little and that has helped. I'm reminding myself that no one knows what this crazy crap will do, and my doctor thinks it is a positive sign that my PET showed no mets even though the nodes lit up. I told her I want five years, and she said she's still shooting for 30, lol. I don't think she's used to having a patient be this aggressive, I tend to be pushy. But being the squeaky wheel has gotten me lots of oil!



We are hanging out at home today - I still have a drain in, yuck - but my boys went to the library with grandma to see a snake show. They were in heaven! Now I'm going to have to keep them out of our pond and away from the snakes, lol. We always have a few because we have a ton of frogs and snappers. In fact, last year a snapping turtle laid eggs in my flower bed, and when they hatched, I had 30 babies all over our driveway! We live right next to a preserve area, and it s pretty cool - we have two beaver families right behind our house, and I'm always avoiding the "herds" of turkeys. And last summer we had a black bear family spotted 1/4 mile from us. I'm a Miami girl - all of this wildlife is crazy!!



Ok, I'm just babbling now. Have a good day everyone!

Teka

Suze35,

Your babbling is interesting.   I love to read posts about the out-of-doors.   Babble on!

Anonymous

Suze--- I'm one of those people that *do* the snake shows in local libraries. Love the kids' reactions!

Titan

Suze and Heidi..you guys have alot in common..love the critters...me..maybe not so much..there was a freaking worm in our garage this am and I screamed until my DH removed it (he said he put it in one of my shoes)...at our old house..and I mean old..we actually had a ground hog come into the house..I'm very serious....we thought it was our cat eating her food..nope..

I volunteer for a local school for troubled/abused boys and at their graduation this May we are going to hire a Jungle type of guy..He is going to bring snakes and skunks..I think the boys will like them...me maybe not so much...I think I will stay at the dessert table..

Heidi..hope you are feeling better...was the weather better for you 2-day than in Ohio..I hope so..for the wedding...

Suze..I hope that rads are a little bit of a break for you and you handle them well..I think you probably will....end of summer you will be done!  it will be here before you know it...

Teka..I have yet to see a post of  yours that you babble..bring it on!

cc4npg

I like critters too!  Count me in!!  Five years ago, I operated a rescue.  I had to close the doors only because my mother was killed and I ended up having to "rescue" my grandma and care for her.  But we took everything (except spiders).  We literally had an average of 20 cats/kittens and 15 dogs and pups every day, in addition to everything else.  And by everything else I literally mean... squirrels, baby coons (only until a rehabber was located), potbellied pigs, snakes, mice, gerbils, hamsters, guinea pigs, rabbits (someone once even brought us meat rabbits from the fair), chinchillas, ferrets, and even rats (which, btw, make wonderful pets).  We didn't take birds or other reptiles, mainly because I knew another rescuer friend who was more capable of providing their specific needs.

Anonymous

Titan-- another thing we have in common! I, too, had a groundhog get into my house. Came back from shopping one day and the house looked like a tornado had gone through it.

Appears an air duct was loose in our crawl space and he came up through the heating vents. My terrier had a *field day* with that. By the time I got home it had managed to escape back down the vent, but the dog was locked and tracking on the (slightly askew) heater vent.

So... not wanting to hurt whatever it was that was apparently down there, I took some hairspray (used it on horses, not me) and sprayed the opening. BIG sneezes and lots of grumbles, so I knew *something* was down there.

Several hours later, after placing a humane trap baited with apples and sardines over the vent, this big ol' groundhog waddled out.

Called Animal Control and supposedly he was shipped overseas for animal research. Not sure I believed that, and never called control again.... took care of my own interlopers after that.

Anonymous

This is Deputy DAwg. He lived with us...

MBJ

Heidi & Titan:  I have never seen a groundhog before, however, I had an entire possum family come into our house one night (I left the door open for the cats back then).  Here I was at 2 am trying to usher them out of the house with a broom my cats hissing at them, they were hissing at my cats.  Crazy night.

Suze35

Heidi - that is awesome that you do that! I had a snake as a pet in my 20s, but then it bit me and I got too agitated to care for it properly. But I still love them! And that groundhog picture is fantastic! I'll have to post my turtle pics.



Angelisa - what an amazing thing you did. And you're right about rats, I had a few growing up. I also had this great mouse in college, it would sit in my robe pocket and come out to get a little scratching. I loved that little critter!



Titan - that is too funny about the worm lol. We get a lot of baby snakes is our garage, the boys love to relocate them.



Nothing in our house - yet! We had a couple of moles under the snow this winter and regularly house a few chipmunks under our steps. I can never grow sunflowers, those stinkers find the seeds in 10 minutes flat. I love to talk about our neighborhood - we live in a "green" community. We can't use chemicals on the lawn, no pools allowed, we have solar panels that provide about 75% of our energy needs, and gardening (organic of course) is strongly encouraged. The builder still lives here, and 2/3s of his yard is garden. I get my organic, free range eggs from his wife, they are so yummy. And I have been expanding my garden every year. Just put in a semi dwarf apple and two semi dwarf pear trees last year. I may have grown up rolling around on toxic chemicals and eating them, but at least my kids won't nearly as much!

MBJ

Suze:  Your home sounds lovely and I envy you your garden and wildlife.  I live in a very congested area of Los Angeles and the only wild life are the street people and late night party goers.

Suze35

MBJ - thank you!  You know, I still envy those living in a big city - I grew up in Ft. Lauderdale and Miami, and while I don't miss the traffic and "wildlife" (lol), it was great always having something to do.  DH and I used to talk about moving to Boston when we retire (which I still hope we can do), and the kids adore NYC.  I guess the grass IS always greener .

Anonymous

Deputy Dawg was a prairie dog. At one time I had an entire baseball team of them. They can make an adorable pet, but some are real meanies....especially during breeding season.

Currently I have a Common Loon swimming in my bathtub. Loons often get disoriented at night during bad rain storms and mistake macadam for water. Once down, they can not take off again due to their body weight and the fact that their legs are set *very* far back on their bodies. (This is why they nest on islands or peninsulas at the edge of water where walking is not a requirement).

One of the local scout leaders found the bird stranded in the road and remembered that I do wildlife rescue. They are *really* cool birds and luckily, this one does not seem too worse for wear. Some rubbed areas on his sensitive little webbed feet that will require a bit of TLC for a few days.

Then off to a local pond/lake.  Lucky for me I have several bathtubs!

Kymn

Hi all, sorry havent been posting much, having a hard time keeping up with working full time, taking care of family, have had DD birthday party this weekend it went really well, had her spring concert last week sheeesh it never ends lol. Had a real hard go chemo number 2 , one more round of FEC then on to D. I really need to mentally prepare for this round, not until the 28th unless blood counts are too low, doc warned me they might be as they were touch and go for round number 2. Seems soooo long till the finish but I know I will look back soon and think wow I did all that.

Hope your all having a great sunday

Hugs Kymn

Titan

OMG..MGB!  Now that I'm off the floor from laughing about your opposum story!   We also had opossums at our old house along with the g-hogs..My DH would live trap them and take them to the garbage bins at his place of work..They in turn would take them to a landfill...I'm sure they are happy there..He would never kill them...

Kymn..are you having the neulasta shot to keep your white blood cell count up?

I'm watching the Wizard of Oz right now..hope I don't have nightmares...Yikes..that Witch is a **itch!

karebear113

Hi everyone,

 I'm new to this forum. My mom was recently diagnosed at TN. 

Tumour is <2cm; Stage 1; Grade 3 0/3 nodes, ER-/PR-, HER2-.

 She got a mastectomy done and starting chemo this Thursday.

Just scanning through posts.  It looks like different chemo meds are provided each time. - is this the case?

Oncologist recommended only 4 chemo treatments; every 3 weeks.  Is this normal? Should I press for more?

Also - my mom is really concerned about her diet.  What do you recommend for meals?

 Thanks in advance for all the advice.

cc4npg

karebear:  I had 4 treatments of TC, every 3 weeks.  It seems pretty standard, but my advice would be to get a second opinion if you have any doubt as to treatment.  Many of us here get second opinions.. and some get a third.  I got 2 opinions and even had the tissue retested, so encourage your mom to do that if she feels the need.  As for diet, several of us here are very careful what we eat.  A diet low in fat seems to be recommended.  If you do the research, you'll likely find many people going toward a more organic diet, high in raw fruit/vegies.  You may also find recommendations against foods white in nature, such as rice, sugar, bread, flour.  Many also stay away from chocolate, especially milk chocolate.  However, going into chemo, your mom won't be able to eat some of these things, especially raw fruit/vegies.  Diet can make a difference, but it can be expensive and it's hard to pinpoint what works and what doesn't.  I would advise her to eat the things she feels like eating during chemo, because it does affect what you are able to eat.  Exercise is also important.  So is staying hydrated and sleep.  It's not just one facet, but many.  For now, just encourage her to take one step at a time.  She's on a roller coaster of emotions.  Get another opinion on chemo.  So sorry to see you here, but these women are awesome and you've stumbled onto a wealth of information here!

Fighter_34

Suze: Hugs and more hugs. Relax and release before the next round starts. Do your reasearch and never be afraid of getting a second opinion. And when you feel stress walk, or snack on some fruits and watch a good lifetime movie.

Ground Hogs, Snakes and Possums I would be on top of the table screaming. I am scared of EVERYTHING. I make sure the basement door is locked at all times. You guys are truly nature women.

Anonymous

Fighter--- not to worry... 20 minutes in my house would have you totally de-sensitized

Kymn

Morning ladies,

Titan, no I havent gotten a neulasta shot, it hasnt even been brought up to me at this point. I wonder if this is not something they give to us here in Canada?

MBJ

Kymn:  I seem to recal that you have to pay extra for the shot in Canada--they don't automatically provide it like here in the states.  This would really make a difference for you.

Suze35

Kymn - I'm sorry this has been so rough on you, I agree with MBJ, maybe ask about Neulasta or Neupogen. Neupogen is cheaper, but you need multiple shots. I hope you are good to go for the next round.



Fighter - thank you for the encouragement. I'm doing my best to take things one step at a time. I won't have any more scans (except planning CT Friday) for 5 months, so I'm going to enjoy the time as best I can.



We are going to NYC tonight for a few days. DH got a nice 1 bedroom at the Ritz on Central Park, snazzy. Im going to eat, walk, enjoy the kids, and try and forget for a little while anyway.



Got my drain out today, and new path report. The extra nodes she took out weren't huge - about 1 cm each, but there was still a little extranodal extension, sigh. I'll ask my RO on Friday to pay attention to the collarbone on the CT Friday. It hasn't grown and is still soft, but I'm still thinking cancer given everything. Well, that's what rads is for.



Have a great day everyone! Heidi, enjoy your housemate .