Calling all TNs
Comments
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Thank you Alicia!
And I agree about this darn snow!
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Teka:
Hi to you too! So glad to be able to touch base with you and knowing you are well and happy makes it even better. Things are good here - was 7 years last month. Go for my yearly with onc on March 14th and then my yearly mammo in April. It's the mammo that makes me nervous every year, as that's how they found my cancer originally. Don't think I will ever learn how to relax and breathe easy for these tests - guess none of us ever do - no matter how long we are out. But on a cheerier note - hope you survived the cold winter and that spring and sunshine are right around the corner for you.
Hugs,
Linda
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Teka:
Hi to you too! So glad to be able to touch base with you and knowing you are well and happy makes it even better. Things are good here - was 7 years last month. Go for my yearly with onc on March 14th and then my yearly mammo in April. It's the mammo that makes me nervous every year, as that's how they found my cancer originally. Don't think I will ever learn how to relax and breathe easy for these tests - guess none of us ever do - no matter how long we are out. But on a cheerier note - hope you survived the cold winter and that spring and sunshine are right around the corner for you.
Hugs,
Linda
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Sorry to all - I posted twice to Teka. Guess I'm a little rusty, lol!
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Stef: on the eyelashes--I finished chemo in mid-October and they grew back beautifully (with some extra help from Latisse!). Now they're falling out again. Luckily, I was prepared for this, as I read about this phenomenon in advance. Apparently, it is common for them to fall out every 4 months for a while. My understanding is that all of our eyelashes have about a 4 month life span. So we regularly lose eyelashes, but usually just 1 or 2 every day or 2. They are normally on staggered schedules, so we don't notice. But after chemo, they are all reset onto the same schedule, so they all fall out at the same time. It takes a few cycles for them to get staggered again. SO frustrating!!!! But at least it's good to know it's normal and that they come back!
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To those who have used Latisse, have your irises darkened like the warnings say? I was tempted to try it, but I don't want brown eyes.
I signed up for that triple negative online seminar tomorrow, but I will be on the way home from getting my third AC, hopefully. Somebody give us a synopsis, please!
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Lovemyvizsla _ I signed up for that online seminar too but I lost the info. Where is it...URL ???? Not sure if I can be home either Maybe a rerun? or save it somewhere?
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Here's the info from my email reminder:
Thank you for registering to view LBBC's program, in partnership with the Triple Negative Breast Cancer Foundation, Triple-Negative Breast Cancer 360: Waiting for the Future, via free live web streaming!
On Thursday, you can tune in, hear from our experts and join the conversation with your questions and comments. You can watch the live Web stream on your computer, tablet or smartphone. All you need is an internet connection and a comfortable, quiet space to participate in this program.
Click here to Watch the Program via Live Web Streaming
We encourage you to tune into the live stream 10-15 minutes before the session is scheduled to begin so you don't miss anything and can troubleshoot any technical pieces. Instructions will be provided during the live stream on how to submit your questions during the Q&A session at the end of the program.
The program start time for each of the time zones are as follows: 6:00 p.m. ET, 5:00 p.m. CT, 4:00 p.m. MT and 3:00 p.m. PT.
Thanks for your interest to view this Web stream! We look forward to having you with us!
P.S. If you know other women who could benefit from this program, please forward this message and let them know it's not too late to register. Visit lbbc.org for more information.
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Today is our day: Triple Negative Breast Cancer Awareness Day. I guess they did a piece on Good Morning America this morning about it.
On my way to my cancer center, hoping my white counts rebounded.
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LoveMyVizsla...I watched the GMA segment. Angelina Jolie's surgeon was on and gave the usual doom and gloom TN speech about very high incidents of recurrence and very poor prognosis. Not one word that 80% of women NEVER have a recurrence. She did talk about a new study and blood test that can predict WHEN a recurrence will occur. Supposedly, this will enable doctors to "cute" you before the recurrence. Personally, I don't think I would want to know. I was surprised that she was so negative about survival, especially with a "cured" Robin Roberts sitting there.
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Sounds like a disappointing segment.
My labs came back good (for me), so going ahead with my third AC as soon as a room opens up.
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I used Latisse with no issues, but I only used it 3 x week. My lashes came in quickly and stayed put. I know some people lose them multiple times post chemo. Since I was only using it so often, the one bottle lasted forever. I didn't continue when it ran out. I saw it as a one time thing to help them come in faster and healthier
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Ally, did it change the color of your eyes
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LMV
Hi! I also used Latisse, and I have blue eyes. Do not use the brushes that come with it. Get a good thin eyeliner brush and just carefullly brush across upper lash line, only. Don't let it drip in your eyes. I have been using Latisse on and off since August, as my lashes have thinned a few times, on and off, since growing back. I even used on my brows. And my eyes are still blue!
There was one small study of 40 people, and none of them had a problem,either. Go for it! Just be careful and clean the brush after each use. Happy New Lashes!Hugs
Arlene
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Hi Stef
My eyelashes fell out 3 times and are now finally gaining length and seem to be staying put. I switched to organic mascara so that when I go to remove the eye makeup my eye lashes aren't falling out with just cleaning them. I honestly attributed my eye lashes continuing to fall out because of all the surgeries but now I am seeing that it's probably just a chemo thing. A friend of mine ordered Bella Lashes off of Amazon prime to help with her regrowth and loved it. Let us know if you end up trying Latisse.
Cocker, I was so sad to read your post. The unconditional love of our pets is so priceless. I pray you will receive the comfort you need as you grieve. We are here for you as you have seen from all the posts. Again I am so sorry.
Hugs
G
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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
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Congrats Syl! Thanks for the update
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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.
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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.
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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!
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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.
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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!
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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!!
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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!
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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.
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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 recurrence0 -
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....
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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.
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Thanks for your inspiration Titan! It's priceless. So glad you are doing well.
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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.0
