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

Deeay
Member
14 years ago
Hi again dmed,

Where abouts are you? I'm in Sydney. I found Support Groups with other women going through the same thing as me so helpful. I still go to one and have made some lovely new 'breast friends'.

There is a link on this site and also Cancer Council I think which lists support groups by area.

Be kind to yourself,

Diane
Deeay
Member
14 years ago
Hi again dmed,

Where abouts are you? I'm in Sydney. I found Support Groups with other women going through the same thing as me so helpful. I still go to one and have made some lovely new 'breast friends'.

There is a link on this site and also Cancer Council I think which lists support groups by area.

Be kind to yourself,

Diane
Deeay
Member
14 years ago
Lots of triple negative women here & lots of different stories. You can do a search 'triple negative' to find other threads. I was oestrogen positive first time with BC and had a lumpectomy. Second time was triple negative so went with the bi lateral mastectomy. About to have reconstruction. I hope your radiation goes well. You'll just feel very tired. Use the solu gel or whatever they give you to ease the burning. I didn't get really sore until the very end. paw paw ointment is also good. I couldn't have radiation second time around. Much easier to cope with than chemo! Let us know how you go. I agree with Catherine-it's hard to understand why our bodies let us down. We can only do our best now to stay healthy and cancer free but the worry never goes.... Cheers Diane
dmed
Member
14 years ago
Am new to this . I have had surgery and finished 4 cycles of Docetaxel and Cyclophosphamide. Waiting to start radiation. I am 53 and my surgery was wide excision with sentinel nodes. My type was TNBC grade 2 with no lymph nodes. I also would be interested in Facebook. Be good to read what other people been going through on this journey with breast cancer.
jules
Member
14 years ago
In answer to the qustion how did I pick up my recurrences.

The first I had a few lumps like grains of sand or rice pop up on my breast and a slight rash.My surgeon laughed and said once in 20 yrs he found it was a recurrance and just to be certaian he'd remove them. They came all came back grade three TNBC.So I had a mastectomy.

Then I think maybe 1 yr later I had a routine mamogram on my remaining breast which high lighted cancerous lympth nodes on that side with no cancer in that breast ?! Strange I know, I never do anything according to the book.

xxx
Tina_P
Member
14 years ago
My secondary breast cancer story was that I had a wheeze in my chest initially. It was subtle - only evident when I took a big inhalation. My GP thought it was pneumonia which puzzled me as I had no other symptoms. A chest Xray can back clear. I also had 2 small lumps on my neck (lymph glands). When I next saw my Oncologist, she ordered a CT of the chest and biopsy of the lumps. Both came back positive with the same triple negative pathology as for the primary breast cancer 3 years earlier. I also had a subtle pressure under my ribs which - there were also some spots on my liver.

Have a great time at the conference!

Tina

xx
Deeay
Member
14 years ago
Im going! Just haven't booked yet. Look out for a Diane.
Liz24
Member
14 years ago
Hi,

Thank you girls for your optimism. I wish you all the very best with everything whether you are still doing treatment (Tina) or waiting for an operation (Deeay) or doing routine checkups (Christie).

Sheree, thanks for the fb offer. It's just that I've deactivated my fb account some time ago. That's ok I'll just have to post here from time to time. You have been a lovely person to chat to right from the beginning when I first signed up to BCNA last year.

Big hugs to you all.

Elizabeth x
Liz24
Member
14 years ago
Hi,

Thank you girls for your optimism. I wish you all the very best with everything whether you are still doing treatment (Tina) or waiting for an operation (Deeay) or doing routine checkups (Christie).

Sheree, thanks for the fb offer. It's just that I've deactivated my fb account some time ago. That's ok I'll just have to post here from time to time. You have been a lovely person to chat to right from the beginning when I first signed up to BCNA last year.

Big hugs to you all.

Elizabeth x
Tina_P
Member
14 years ago
Hi!

Thanks for touching base. I have had a go at clicking on the link to facebook Sheree, but it said, "not available"...I will have another go. INteresting that you too had trouble finding me on facebook. I don't access my page often, but it is Tina Piggott.

Anyway, last time I posted here I was due for a break from chemo. The routine scans before the proposed break picked up some metastases at the base of my brain. A brain MRI found a few spots at the top too. Fortunately, i am asymptomatic, but have already had 2 weeks radiotherapy. We are told 70% chance of the radio 'keeping it at bay". I am due back to see my ONcologist on MOnday to start a new regime of chemo - the old which was great for 4 cycles, everything decreasing rapidly, basically stopped working for the next 4 cycles, so i have a few spots coming back in the neck, liver and lungs.

So, as a family a new page has been turned in this story. We are, however, strong in faith and surrounding by much prayer, love and support - which is so beautiful.

Love to all you girls out there.. and i will keep trying to get onto this facebook page.

Tina

xx

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