Calling all TNs

TNBC is a hot area of research so you could be right about wanting to keep close tabs on you

I must be a leper because I've posted on several of these boards and have gotten no responses. I sure am glad to have support elsewhere because this is ridiculous!

Thanks simplelife... I was just getting frustrated! Didn't mean to lash out. Thank you for responding. :-)

Lori, Thank you so much for the information. I hate to add to your emotional anxiety but I'm really worried about your rash. With IBC it's extremely important to get diagnosed right away. Is there anyone who could see you soon? Plus it might help to find out that hopefully it's nothing and you can truly relax and enjoy your vacation.

And bak, you too! Call for a sooner appt. and  hands off, (I'm guilty of the same thing! I once had an onc. tell me "stop mashing on that thing!) LOL  and try to see someone sooner. I hate when appointments are delayed. Just adds extra worry.

flimsical, I often wished I could try Herceptin too. I'm convinced my cancer was triggered by the Estring. Had normal mammogram, normal breast exam and got scrip for Estring.  Two days after insertion started with rash and swollen breast. I am TNbc but I also have 1+ her2 . My onc. says insurance wouldn't cover Herceptin. 

Welcome Purple! Sorry you are here though.

{{{Meadow!}}}

Flimsical, welcome to our group and sorry your not getting replies elsewhere. I think if we don't have an answer we tend to leave it to someone who may know or be in a similar situation. 

My path stated less than 1% ER and I asked my MO about taking anything for that but she said that SE wouldn't warrant it and I am considered trip neg. I know this isn't the same but it's close! ;-)

I finished my treatments 14 months ago and I do not get any tumor markers done or scans of any kind. I see my MO every 3 months - have never questioned the frequency of my followup visits. I would see it as a positive not having to go every 3 months. The range of followup  is so different from place to place and doctor to doctor. It puts the onus on ourselves to be diligent in observing for lumps and rashes and when we don't feel right - to go and get things checked out by a doctor.

Sadie thinking of you, praying for you.

Thank you Meadow and what a cute picture..................:)

I will take one of those puppies any day!!! 

Flimsical-my doc wanted to use Herceptin on me. I think I was plus 1 but my insurance would not cover it and I could not afford it. He firmly believed it could, based on research,  help even with slight her2. Sounds like you are getting cutting edge treatment!

mom and daughter at second cycle of chemo. She has a natural hair fall with a pre-tied bandana that she got at sherels hats in New York. There are stores in queens, Long Island, and brooklyn. She bought a custom made natural full hair wig and a fall that look great with these soft comfortable bandanas and with hats from sherels.

http://www.sherels.com/mobile/default.aspx

This hat store also has really soft silky head coverings that are great to sleep in. The wigs are great and from Quarum on central avenue in cedarhurst, NY on Long Island (Anthony is the wig specialist there) . My mom looked into having the ice caps for during chemo, but the nurses did not recommend it as it is a lot of work and is not always effective. This has been working for her and she looks quite stylish! I hope this helps others and if you have any other questions we are here to help!

Dx 3/17/2014, IDC, 2cm, Stage I, Grade 2, 0/1 nodes, ER-/PR-, HER2-

bak94 - I'm sorry they couldn't get it approved. To be honest, I have no idea how they got it approved for me. I am appreciative of my "team" because they must have had to pull some kind of strings! Sometimes if you are relentless they will approve it. There's still a possibility you could get it if you want to fight it!

Lori - how wonderful you've been able to get into so many trials, although I'm sure all the appointments and research has been exhausting. It sounds like your doctors are really behind you and doing all they can. I'll be thinking of you and sending many prayers your way as you embark on these new possible treatments. Stay strong!

Bak and LP - I am so sorry you're dealing with new lumps. I found a new lump right next to where my tumor was a couple months ago just after finishing AC and shortly after starting Carbo/Taxol. I had to wait a week for a scan and it was excruciating (lump was normal breast tissue thankfully).  As busy as we try to stay and as positive as we try to be, it's hard to not panic and go to the what ifs. My heart goes out to you and I hope the time passes quickly until you can get in and get some answers. I will be praying for you both that the lumps are nothing. Hugs.

Meadow - I'm not much of a dog person, but I do think I could take those puppies and love them all.

Bak - Hope your waiting is going by quickly.

In your pocket to those with new lumps.

And thanks to our sisters here who are doing trials.  Our daughters and granddaughters will thank you, too.

I got a strange letter from Medicare yesterday about my prophylactic mastectomy in October 2011.  Medicare has determined that it wasn't necessary for me to stay over night after surgery.  So they won't pay the hospital for those 24 hours!  And I won't be billed for it either!  Yikes!  I think this is way too strange.  Have any of you heard of this before?  Go figure......Jan

Purple I can understand your worries about chemo but I must be honest and say I'm glad I did it.  I froze when it was first mentioned to me but it is doable and the time goes really quick.  I hope you give it some more thought and decide to do it if it's necessary but only you can decide on that.   

Slowloris like Bluebird I am worried about your spots.  I do hope you get an answer about them soon and they turn out to be nothing.

Nettie I prefer not to have my CA153 markers done and told my doc's this.  The anxiety of waiting so long for results gets to me every time and I want to move on without the constant worry of them.  I've been told so many times that they are unreliable anyway that I think what is the point of that anxiety every time.  If we are healthy and feeling fine we would know if something was amiss, wouldn't we? 

Simple my doctor likes to do three monthly checks and that's ok with me.  He is easy to talk to and if I have any concerns he puts them all into perspective for me.

Flimsical I am so sorry you didn't feel the support that you needed.  Like the ladies said if we are totally TN, as I am,  it's hard to answer questions some times. Not only that sometimes my grandchildren are here when I get home from work and they hogg my computer. But a very warm welcome to you.  We are really supportive on here and I'm sure we can answer most of your concerns so please don't give up on us.

Stupidboob good to hear from you.  In your pocket for good scan results. 

Meadow yep like Jan I'm in for one of those gorgeous pups.  They look just delightful.

BAK and LP praying that your lumps are nothing to worry about.  Sending big hugs and in your pocket with you.

Allydp yep thos frecken what ifs.  No matter how hard you try to move on those 'what if's of recurrence' come so frequently.  Hopefully they will get further and further apart as we go on to live normal lives.

Well it's back to work for me after lunch.  Prayers and hugs for all those going through treatment  and those just struggling to get from one day to another. 

Annie