Calling all TNs

sylviaexmouthuk

Hello everyone,

I just wanted to say congratulations on reaching 1,000 pages.

I do remember when Titan started the thread and how I posted on page 2. It was my first experience doing anything like that and I had finished my own breast cancer treatment for triple negative breast cancer in 2006, but wanted to find out what was going on with all this. I do remember NavyMum posting on page 1. A lot of the names from those early days no longer appear, but they are still quite vivid to me. I remember Karen3, Gillyone and Sugar77. I hope they are all doing well. I remember Sugar reappeared some months ago to say she was fine.

I was motivated by Titan to start the thread for Brits, because I thought we were in the dark ages with breast cancer. It has turned out to be a thread not only for Brits but for others.

Wishing all of you all the very best and telling those going through treatment they can do this. I am now a ten and a half years survivor of TNBC. Ignore all the doom and gloom.

This is my 4,000th post on the forum!

Thinking of you all.

Sylvia

LoveMyVizsla

Congrats Syl! Thanks for the update

LoveMyVizsla

Greenae/Arlene, i meant to say thank you for the tip on Latisse! I'm going to talk to my friend about it who would prescribe it.

Peabrain

Hello!

The ooph surgery went fine. I was surprised that the scars are inch long and not just little dots and that they are above my belly button. I thought they'd be low slung, like at my undie line. Who knew? There are always questions I just don't think to ask.

I did watch the first half of the online seminar. Was I the only disappointed in the nonspecific info they focused on?

Anyway, I am super excited to be on the recovery side of things. Hoping for some solid healing and an interesting Airstream outing.

Allydp

LMV - nope. I have blue/gray eyes and they are the same I used the brushes that came with them and although this is a big no-no...I would use the same brush for both eyes. I put a drop in the cap, swirled the brush around in the drop, and would swipe it across one upper lash line a good two to three times - always ensuring never to get any in my eye. Then I would swirl the brush around in the same drop and do the other lash line the exact same way. Because I knew one eye was probably getting more or less with that method, I would alternate which eye I started with each time.

Peabrain - great to hear all went well! My scars are about an inch long as well. I have 4. One in my belly button, one on my pubic bone and two on either side of my belly button...but those two are down below my underwear line. They're already fading so I wouldn't worry about them. In a year or two no one will know where they ever were to begin with. Take it easy and rest up!

LoveMyVizsla

Peabrain, I had a partial hysterectomy 4 years ago, done laprascopically (sp) and you can barely see any of my scars. You really have to look.

One of the participants in the online seminar has a blog. She is in the fashion industry and a TN survivor and created cancerfashionista.com she has some tips, links, etc.

Geeper

Sylvia, congratulations to be a 10 1/2 year tnbc survivor. Love to hear survivor stories. May you continue to show no evidence of disease. God Bless you!

DebCoz

I have a question on triple negative. My Progesterone and HER-2 were negative and my Estrogen only tested positive for 1-5%. I thought that because it was low I was triple negative. My doctor said technically I am not. Does anyone have any thoughts on this? Thanks!!

Ag23

Thank you to all the long term survivors that keep posting! It's so uplifting to hear those stories!

I'm still searching for long term survivors that had a lot of residual disease after chemo. If you know of any, I'm anxious to know:o) im planning to collect examples and put them in my journal to reference on tough days.

Enjoy the weekend everyone!

Shopgal2

Wow 1000 pages. Awesome.

I found out about the study listed below on Facebook. I emailed my radiation oncologist and she told me that my treatment hospital, Thomas Jefferson university in Philadelphia will be starting a clinical trial on this study later in the year. It's a blood test to help monitor cells in triple negatives that have completed treatment. Definitely has my interest peaked.

https://clinicaltrials.gov/show/NCT02639832

Cathytoo

ShopGal2...Hey, we're neighbors‼️ I saw Dr Fox at Penn but chose Dr Gilman at Lankenau. He wasn't all doom and gloom. Are you considering the trial? Would you want to know when you were going to have a recurrence

Titan

Hey Ladies! (and guys)...just stopping in to let you know that on 3/20/16 I will be 7 years out...not an old timer quite yet..but getting there....I'm 56 already! had lumpectomy, 4 ac and 4 taxol and rads. I jog..alot..work more than ever...try to eat right...but am no saint..love my wine...still taking alot of vitamins,...especially d3...still married...we are empy nesters now...my daughter is married and my son lives and works in Columbus, Ohio. He is dating a Michigan girl and for the ones that know me I'm a born and bred Buckeye...but she is a beautiful girl and we love her...change is good..right? I have a mammo once a year..see the onc. once a year and my bs once a year so still on a every 6 month rotation which is perfect for me....energy level is over the top....

Just want you all that are going through treatment (and it does suck)..that most of the time..you will get through this....just hang in there.....before you will know it you will be posting that you 3-4-5-6 plus years out and getting on with your life....no one said that life was going to be easy...we know that ..right...It still hurts when I think about my friends that lost their lives to this freaking disease...that doesn't get better...but learning to deal with it.

Love you all...will be back in touch..just because I'm not posting doesn't mean that I don't care. but this is your time now....

Geeper

Hi Titan, I am so glad to hear you are doing well.. Can you believe your thread has 1000+ pages, unbelievable, huh? Hope to one day be like you. Take care and may you continue to be NED. Sending you a virtual hug.

Angtee15

Thanks for your inspiration Titan! It's priceless. So glad you are doing well.

bluedog

SO wonderful to hear from all the folks who are many years out from diagnosis and treatment. Thank you, Titan, for starting this thread.

Peabrain, I was disappointed in the seminar, as well. The doctor was great, but the other panelists were meh. And, yes, little new information.

Nalagirl

Hi Titan -

Thank you for your post and wonderful news. I was just diagnosed with Stage 3 triple negative BC with lymph node involvement. I am 48, overwhelmed, and scared. I am on AC + T dose dense. I have my fourth dose March 9. The side effects are awful. Any advise is greatly appreciated...

Shopgal2

so awesome to hear from you Titan. It's comforting to read your words and know that you started this thread that led me to bco and the wonderful support when I was first dx and scared shitless. I remember googling triple neg and the first thing that came up in my search was this thread on bco. What a lifesaver to know it was not doom and gloom also. I am grateful for the support here and am inspired by the stories of those that are thriving after treatment.

I am 1 week past finishing all my treatments and after 10 months since dx to surgery to chemo and then radiation I am just trying to live life again. It's a day by day thing and I am still adjusting to life after treatment. I feel like I'm flying thru without a net but after hearing about those that have made it thru to the other side I feel better step by step and day by day. I just have to remember to breathe. And laugh a lot and smile. And especially not to take things so seriously to appreciate the little things in life.

ScotBird

I am right with you Shopgal about appreciating little things and laughing every day. For me one of the few positive things about getting a Cancer diagnosis, is that it makes me realise how great and funny life is! Cosmic hugs both for you and for Titan for starting this thread and to all myother triple neg sisters: no one wants to join this club, but it seems like everyone in it is happy to have found the rest of the gang..... X

Meadow

Titan, so glad you popped in to say hi and to give us the good update, So happy for you and your family,nThank you so much for starting this thread. It is a soft spot to land for sure.

Peabrain, so glad your surgery went well. Hugs to you

Nala, so sorry side effects are a problem. What has been bothering you...nausea, fatique? So SORRY Hang in there.

Sylvia, So excited to see your 4000th post was was on this 1000th page! You are such a dear lady and I am so happy you have brought such comfort and info to so many people.

HausFrauMi

2nd AC yesterday. Not much diff so far from 1st one. Got my hair cut shorter. Still no clumps but a lot more loose strands when washing.

Our new rescue dog had 2 seizures yesterday. Rushed him to the vet and he has elevated blood counts for infection. Antibiotics and we gave him 2 diazepam for the seizures and if he has another one to give again. Plus a deworming pill just in case the negative fecal result from a month ago didn't miss a parasite. So far so good today! Cross your fingers

Sydney wanted color in her hair like mommy

Titan

Nalagirl.....I don't like that you are having horrible side affects..you shouldn't have to have them..but since you are (and you are the same age as I was when I was going through this crap) I remember the diarrhea/or constipation..both stunk...the feeling that you were hit by a truck was nasty as well...the chemo brain...i could go on and on..the neulasta shot really did me in too...I did work through it all..tried to walk a little every day...made sure the bedroom was dark and cool so i could get some sleep...ate whatever sounded good...tried to keep things easy on myself...it was my son's senior year in high school..so busy with all that involved...did well until the day before his graduation party...and well...I just couldn't do anything for it...was exhausted (just had my 3rd ac)...I just had to rely on friends and family to take over...i just couldn't do it...the next day..I was fine...the hardest thing for me was to give up control...lol...and let people help out...

shopgirl..I was just thinking about the laughing thing today....I don't remember the exact moment but the time I actually had that full belly type laugh was when I knew that I was ok...I could deal with it...

Hausfrau..you and your daughter are absolutely gorgeous....keep up that smile...!

TulipsAndDaffodils

Hi everyone,

As far as the Latisse goes, I have blue eyes and there's been no change. My understanding is that Latisse was initially developed as an eyedrop for glaucoma (and they noticed the patients grew gorgeous lashes). So they were purposely directly putting it in their eyes constantly. A tiny percentage of them had the eye change. My understanding is that no one using it as Latisse for eyelashes has had that happen, but they need to say it's a potential side effect.

One thing that has happened to me lately, and I'm SO glad I read about his on one of these threads or I would have been shocked and horrified, is that my eyelashes fell out again, 4 months after chemo. Apparently this is common, and they are already halfway back. The theory is that all of our eyelashes have about a 4 month lifespan. So we lose an eyelash every day or two, but we don't really notice, and the eyelashes are on staggered schedules. But after chemo, they all start growing in on the same schedule, so they mature to 4 months at the same time. So you notice a lot of them falling out at once. Supposedly this might happen to me at 8 months and 12 months, too, but eventually they get on a staggered schedule and you stop have a mass simultaneous exit of lashes! So I'm keeping up the Latisse, and it is really impressive how quickly my lashes are re-growing. (Still mad about this though--just when I was loving my super-long lashes, they fell out!).

Yes, thanks to the long-term survivors, we really appreciate your stories!

Love the photo, too, Hausfrau. You'll do great and get through this chemo!

As for the seminar, the doctor answered an important question I had, so I was very happy with it. But it's true for me too that the most valuable part was the medical part/doctor, and less so the social worker & survivors more general info.

Deb, I'm 1% ER+, and completely negative for PR and HER2. My doctor calls it TN, as did my 2nd opinion doctors at Dana Farber. Also I qualified for a TNBC clinical trial with my situation, so in my understanding that is triple negative. My understanding is that I would not benefit from tamoxifen or anything else that targets the estrogen receptor. If you are closer to 5%, that may (?) be a different story.

Tulips

sylviaexmouthuk

Hello Titan,

I am just popping in to say that I was thrilled to see you back on the thread that you created nearly six years ago.What a thread you created and what a lot of lovely women have kept it going.

I also wanted to say congratulations on being seven years out.

I was glad to know you are well and getting on with your live.

Fond thoughts from the UK.

Sylvia.xxxx

sylviaexmouthuk

Hello Meadow,

Thank you for your kind words. I always look out for your posts as you give such support on this thread.

I could hardly believe that TNs had reached 1,OOO pages. It seems only yesterday that Sugar 77 was excited that the thread had reached 100 pages!

I do hope all is going well with you.

Fond thoughts, Sylvia.xxxxx

Nalagirl

Titan -

Thank you so much for the note Andy encouraging words. I have my fourth dose of AC on Wednesday. Then I will start the Taxol. My hands are already affected from the AC. So I am worried it will happen with the Taxol. Did your hands peel?Yes- I will try to walk everyday. Thank you.

Meadow

Thank you Sylvia, you are such a sweet lady.

Haus, you and that darling ginger baby girl! So precious. If you have had your second AC, I would expect you to be shiny baldy next time we see you. This is OK! It is temporary...hair grows back and you will think...DId I take pictures of me bald? I can't remember what it was like! I know it is hard to believe but true. Hang in there.

Nala, unfortunately I did not find anything to help with the neuropathy. Any suggestions from the rest of the group?

LoveMyVizsla

My MO recommended glutamine for neuropathy. I asked my infusion nurse about icing hands and feet and she said there are no definitive studies, but you are welcome to try it anyway.

SA8PG

I iced my hands and feet and also took the glutamine. My neuropathy is gone in my feet and only a few fingers burn on my right hand but only occasionally. If that helps.

Titan & Sylvia: how blessed we all are to have your support and the trustworthy wisdom that you both have poured into this thread & the UK thread. We are all so grateful. Thank you.

Gentle hugs to all the new ladies. We are here for you. Keep on fighting.

Prayers, love & hugs

G

Trisha-Anne

I'm doing 12 weekly Taxols and I suck on iceblocks during the Taxol infusion and have minimal taste change after treatment. It's worth a try.

dmp1960

Hi all - I'm new to this forum. It's very reassuring to see all of the success stories on here. Everyone here seems so brave. It gives me hope for what I'm told is a very scary diagnosis of TNBC.

I'm 55 yrs old and was Dx with what I thought was DCIS on my right side - left side negative. I choose to do a double mastectomy since I've had years of bad mammograms and felt like I was a ticking time bomb. Had the double mastectomy on 2/16/16 - pathology came back with DCIS on the left side too. Right side was not just DCIS but IDC too - 6 mm - node negative. Found out a week after that the IDC was triple negative. I'm devastated of course and having a hard time wrapping my head around this. Saw an oncologist on 3/04/16 - and although the cancer is gone for now, she recommended chemo to lessen the chance of recurrence. I'm scared to death of the chemo but will do whatever is necessary to save/prolong my life. The oncologist I saw is recommending TC chemo - 4 rounds - every 3 weeks. Should I seek a second opinion - I know there's not much of a choice for TNBC with regard to treatment. Is a few rounds of TC chemo the standard protocol? I'm so worried about the side effects - pain, nausea, neuropathy, hair loss, etc.

Can anyone here let me know their experience with TC chemo? Was it painful? How long until my hair falls out? When will I start to see my hair grow back? I have so much anxiety and so much fear of the unknown.

Also very worried about follow-up care. How do they monitor you for recurrence? The oncologist I saw said that she will see me every six months and ask me a lot of questions. Is that enough?? Are there tests they can perform to reassure me that the cancer has not returned??

Thanks everyone!