Hi All. Anyone else out there with a triple negative BC diagnosis? I have started a group for anyone interested in joining and sharing their stories? Hope to hear from you soon, xo Christie.

I am here, will post this link in a blog post to get more members xo

Thanks Liz. Im traveling well. Round 2 next week :( Yesterday was a big day for me. My hair had started to come out in BIG clumps! So out came the clippers. Very confronting and emotional! But it is done now, im shaved no.4 and my 3 boys laugh at me every time they look at me! The innocence of youth hey! My husband keeps telling me it looks good but Im not convinced! xo Christie

Christie, I understand how you feel about the hair falling out. I thought I was all prepared by shaving it down to a number 1 a week before it was due to fall out. I felt I was in control by doing that. Then when it completely fell out, it was a different story. I didn't think that it would bother me so much, but it did. Especially since my second chemo session and hair falling out happened during a miserable week of constant rain and terrrible weather. I felt even more miserable. I think I'm now a bit more used to it, but I can't wait for the chemo to finish so that it can grow back. I've been told my wig looks pretty good too, but I can't say I'm a big fan of it. It's probably because I know that it's a wig and just think that others will notice, even if they don't. It's true that there are more important things than our hair, of course, our health. However, I can understand the need to just feel and look like everyone else is also important. It's good that your boys are laughing about it at least. It might help if it rubs off on you too. I guess it's good to be able to laugh at something. :) Liz xox

Hi ladies, I hope your all feeling as positive as possible even though it's an up hill battle to do so at times.....I am day 6 after chemo & I must say I am thankful that i've basically sailed though number 1...i've had a few joint pains in mainly my feet and ankles and ulcerated mouth which panadol rapid soluble is marvelous for it :-) I've just had to take all my jewelery off as my ear rings and neckless even though gold is causing a very itchy welt of a rash :-s Oh & the scap....hahaha...I have to laugh to myself about it otherwise I may crash & burn at the thought that my hair folicules dying...the itching is unbelievable I now know how a flee ridden dog feels :-D I'm not actually sure when the hair starts to fall out but I too will be doing the number 1 or 4 with the clippers when it's time, I think the chemo nurse said at around day 10 it all starts to happen & then I'll cross that bridge when I come to it though! The test results are back from the familial genetic group it only took 2 weeks but I don't find out the results until September 1st a great way to start spring off isn't it. I could have found out last thursday but I had my 1st round of chemo so that was that. I'm not too sure how I feel about finding out the results but I think it's best considering I have 4 daughters and 2 sons for their sakes to find out for sure, but once again I'll cross that bridge when it arrives! I'm insistant that I stay as positive as can be as I don't intend to let this major hiccup bring me down it's just another learning curve in the road of life and I do intend to learn from the experience as much as I can! I hope you girls are the same! Brightest Blessings, Susan xx

Good to hear you are feeling good after round one. I too felt pretty good by day 6! No major issues other than the tiredness. My hair by day 2 felt dead. It was dry and yuck. By day 12 it started coming out and yesterday was day 14 and Im bald. It just all came out in the shower! Very confronting and I did have a cry in the shower. I knew it was gonna happen but I was not prepared for how quickly it occured! Hope the genetic testing goes well. I will be doing this after treatment. I have no family history so my oncologist wants to make sure Im not the first in the chain. I have a sister, niece and 2 boys of my own. I would rather they know the possibilities. Im heading into round 2 on Tuesday, and hoping it goes as smoothly as the first. What chemo are you on Susan? Im scheduled for 6 rounds FEC x3 Tx3. With neulatsa injections. Enjoy your week xo Christie.

Triple Negative BC | BCNA Online Network

83 Replies

jules
Member
14 years ago
Hi,

I have facebook.

Julie Dorman

A TNBC facebook would be good.
jules
Member
14 years ago
Hi,

I was told Triple negative BC are eligible for BRACA testing free of charge and should consider it. As I had no family history but my daughter was 5 months pregnant I decided that it was her decision as it made little difference to me or my treatment.We both went to a genetic councellor and then I had the test which came back negative but with a note saying any of my relatives should start having screening from 40.

Jules
shereejoy
Member
14 years ago
Jules are you on facebook? If so what is your name and I will find you and add you!
shereejoy
Member
14 years ago
Jules are you on facebook? If so what is your name and I will find you and add you!
jules
Member
14 years ago
Hi Deeay,

My first BC was Triple negative and my recurrance was positive.My oncologist didn't think things added up so asked for the pathology to be redone and it came back triple negative.
jules
Member
14 years ago
Hello,

I would love to join the triple negative group.How do I go about it?
I don't find this site easy to navigate but that's probably just me.

I feel TNBC has a lot of issues that don't pertain to other cancers and often feel a bit alone in all this.

One of the obvious ones is of course the rate of recurrence-I've had 2 in 2 1/2 years.

Love and blessings to all.

Jules
Deeay
Member
14 years ago
First BC was oestrogen positive! So followup treatment tricky. Tablets or not?!
shereejoy
Member
14 years ago
anyone have facebook?
shereejoy
Member
14 years ago
oh so sorry to hear that... and you were triple negative?

Yes it took me a while... but finally did it and it feels GREAT!
Deeay
Member
14 years ago
This was a recurrence so they can't do radiation twice! I'm in the hands of God now! (scary...)

Yes, I'll get the hair dye ready but won't need it for a while yet unfortunately.

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Triple Negative BC

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