Calling all TNs

Allydp

I can't thank you all enough. Despite my sometimes frantic posts here, I really do stay positive and keep a smile on my face in my daily life. Putting on a brave face helps me get through, but being able to come here and voice my worries and have you all listen and be supportive means so very much to me. I have a MyLifeLine update page and haven't yet told my friends and family these latest developments. I just posted an entry titled "Time To Heal" a couple weeks ago. My husband recently got a promotion and our friends have offered to be our gestational surrogate. This is supposed to be our time. I just can't bring myself to deliver all this crappy news right now. I'm going to wait and hope there's no news to deliver. Deep down, I actually feel like this will come back benign. It's just waiting it out and feeling drawn back into the fight that's hard. I have the same gut feeling about the bone lesions being benign, but again, it's hard to get closure when the issue isn't going away. So again, thank you for being my support system through this.

I spoke with a nurse at my BS's office and she said she'll decide once she gets in there if she's going to take a larger biopsy or remove the whole thing. I'm going to tell her in pre-op to remove it and get clear margins. I've been having some pressure where this mass is, which is exactly where my original tumor was, so no messing around with this. I also asked about consulting my PS. She said if my BS thought he needed to be consulted, she would have contacted him. I wasn't thrilled with that answer (seemed like a blow off to me), but I trust my BS, so I don't plan on contacting my PS right now.

SA8PG - I'm so sorry you're dealing with an infection, but glad the antibiotics are working!

njpm - I thought about contacting my nurse navigator, but since I'm getting another opinion at a new hospital, she won't be able to coordinate much. Once I figure out exactly what's going on, and if I need further treatment, I'll definitely rely more on those services.

Curly - your BS sounds top notch! So they were able to tell during your procedure if there were cancer cells present, before you woke up?

KSteve - that is such a nice thing to say about remembering me, thank you. That initial thread really saved me those first few days while I found out the TN status and dealt with the lesions on my bones. Thank you for being so supportive.

Meadow - you are one of the sweetest women I know. Thank you so much for the prayer and kind words.

Toby - I've had a PET, but was never told the sugar thing. I would probably avoid carbs just to be on the safe side, since they break down into sugar. I'll be thinking of you Thursday. Keep us posted.

Luv - I'm so glad to hear your mom's results were good and also glad to hear your GI doc is trying to get to the bottom of things. I've drank the contrast a few times before. If you can, ask for the flavored. It's much more tolerable in my opinion. I never got sick or had tummy issues, so hopefully that will be the case for you too.

AnotherNYCGirl - I agree. I wish they could go in together, but right now I just want the mass out. My recon isn't perfect anyway, which I've come to accept. This sounds strange, but if this procedure does any more damage, it won't be the end of the world to me.

Shari - I am so happy to hear you had such a good and productive day! Having a plan in place makes a world of difference and it sounds like your team is really on top of things. Hope you're getting some good rest!

simplelife4real

Alicia, I'm glad you seem to be getting things sorted out on the biopsy.

Lisaj514

http://www.cancercare.org/connect_workshops/443-update_triple_negative_breast_cancer_2015-03-03

I listened. I think you can listen to a copy. It was good, dr Melinda telli from Stanford univ school of med, dr Steven Isakoff from MGH/Harvard and MSW from cancer are.org. Info on platinum drugs for chemo for advanced AND early stage, pdl1 antibody drugs (didn't understand it all, bc husband?), meds for nausea during chemo, neuropathy, clinical trials, pain, importance of support and support groups, exercise, diet

And my Insur won't auth PET scan as on,y stage 1 and not symptoms to support (or enough symptoms). Lumpy scar is considered only scar tissue (I certainly hope), cough from pneumonitis as shown on chest ct scan (I certainly hope) and generally feeling goid except for the frequent worry about "is this normal?" , what if...

Good luck to all others with tests, scans, surgeries, procedures coming up. Thinking of all of you frequently and read posts daily. And if you listen to webinar, tell me what you think or what you learned. Inspiredbydolce? You too

megomendy

Ladies, I post rarely and lurk often. I find this message board so hard to keep track of everyone and it' hard to comment on someone's post because it could be pages before I get to the end to add a comment. Has anyone ever considered starting a private facebook group? I know in my march 2014 Chemo group we ended up switching to facebook because if makes it so much easier to comment directly on the person's post. And it seemed that we got to know each other so much better that way. Any interest?

Teka

Meg,

I follow a thread member on Facebook that hasn't been lurking and posting on the threads since 2014. I only lurk on Facebook.

I've been on the threads for over 5 years and now only post sporadically.

Meadow

Meg, I personally like the thread here on BCO, my Chemo 2013 left here and is on fb, it works but it feels completely different. If voting, my vote would be to stay here, but thats just me! I will go wherever my sisters go. Anyone else?......

Luvmydobies

I prefer to stay here too. I'm not on Facebook.

sylviaexmouthuk

Hello everyone,

I just wanted to say that I think breastcancer.org and the threads here are excellent. We have the advantage of being with a cancer charity and having moderators to keep an eye on the threads to make sure all is above board and to come on the threads with help, support and information. The moderators can get rid of trolls and those trying to use the threads for commercial gain.

I have been invited several times to join Facebook but would not consider it. A young friend invited me to join once, which I did, and very soon I found that my email address book had been hijacked. I closed my Facebook account.

We need those who have been through treatment, with all their experiences behind them, to remain in order to help and support those now going through treatment.

It will soon be ten years since my diagnosis but I discovered breastcancer.org in 2009 and have remained with it ever since. The threads need us all. We are the collective memory.

Best wishes to all of you going through treatment.

Sylvia

MomMom

Chiming in with my opinion.  I prefer to communicate here as I am FB resistant:-). 

Shari - that photo of you is SO lovely!  You are a beautiful person inside and out.

Sending daily prayers to Shari, Ally, Arlene, Luv and others going through difficult times.  (((((Hugs to all of you))))

Paula

slv58

I'm not on Facebook either and like this forum. I participate on several topics here.

Good news, surgery is tues! Yahoooo!

Anyone hear from Arlene?

InspiredbyDolce

Oh that's wonderful news Shari. I e-mailed Arlene offline to her personal e-mail but haven't received a reply back yet. That was on Saturday I think.

Luvmydobies

Good news Shari!!!

Mommom, thanks for the prayers! I rescheduled my scan for tomorrow at 11:00 because the roads may be slick Friday. Please pray for me everyone! I'm really nervous! Thanks! XOXO!

Tobycc

Luv, mine is at 11 am EST tomorrow also. I am trying not to worry: i depend on God . ( just my personal opinion, not shoving in on anyone)

I too would welcome prayers. Luv, I will literally be right there with you: I don't feel so alone now going into tomorrow. Man, I want a piece of fruit! Doing no carb day. At least we can drink water tomorrow.

I would do a FB group, but I am not public at all and would do so if it was closed only.

Ladies, you are all so special. I am so sorry we are in this group, but I honestly don't know where I would be if I did not have you

Hugs and love my TN warrior sisterrs

Kath

anotherNYCGirl

Luv, Toby, and everyone else going for tests, scans, procedures, etc, - I, too, am sending BE WELL wishes and holding your hand!

TNBCinSTL

hi everyone, Hope this finds you all having a good day (now that I know what that really means with a little bit of perspective)! I'm new here, and wanted to introduce myself. I'm 42 yrs old going thru chemo now (my 2nd round next friday)...feeling pretty sluggish but much better than last week. Was wondering if anyone developed a seroma after mastectomy and if ever went away? Sorry we are all in this boat, but since we are, figured I'd introduce myself and not feel so alone in the journey.

slv58

TNBCinSTL, welcome but sorry you find yourself here. This is the most supportive, caring, knowledgeable, positive group of women you will ever find. Any question or emotion you want to express- this is the place!

Luv and Kathy, we are jumping in your pockets to be with you. We will try not to wriggle around too much, so wear big pockets! Will be saying prayers for both.

Thank you MomMom ;-)

TNBCinSTL

thx shari, I'm so sorry you have to do this again.

all of you, I will pray that you get all clears and the best news you can possibly get. sending lots of love and healing light!!

Meadow

Welcome TNBC in STL, from another Missouri gal!

Luvmydobies

Kath, I also depend on God but am still nervous, mostly about drinking the contrast as I'm scared it'll make me sick. I'm nervous about he results but I have to focus on getting thru the test first. Thanks for praying. I'll pray for you as well!! I'm not on a limited diet for the CT, just can't eat or drink anything, except for the contrast, four hours prior to the scan. I'm sorry you can't have anything with sugar! Ugh.

Thanks to everyone else for the prayers and for being with me tomorrow! God Bless everyone!

Becky, welcome! Sorry you have to be here but we are here for you! Keep in touch and hang in there!! Sounds like you're doing just fine.

slv58

luv, don't be nervous about the contrast. My DH wanted to know what it tasted like (assuming they are all the same) and I said imagine drinking water out of an old dusty tea cup! No real taste, just kind of stale. It didn't make me gag or give me the runs or anything. You will be fine! We are here with you -bottoms up ;-)

Thanks Becky- first time was practice.....now I'm ready to kick cancers #%£€!!!!

Meadow

yes slv!

Lisaj514

slv, you go! You are awesome. Go kick some booty! Cancer should be scared now!

Welcome TNBCinSTL, we are a great group of gals (and a few great husbands too). Your avatar looks awesome. Another kick a** chick. Tell us about the story of your hairdo. How many chemo treatments will you have? Join the chemo group for your month if you have not done so already. I assume there is a feb 2015 chemo group started. You'll get a ton of support there as well as here. You're getting taxotere, check out info on icing hands and feet to decrase chance of getting neuropathy. I did it. I think it helped

slv58

Thanks Meadow and Lisa!

Becky, Lisa has given you good advice. I found joining my 'chemo month' group was very supportive. My advice, drink lots of water and take anti nausea meds whether you think you need them or not as it's much better to take pre-emptively as opposed to trying to control once nausea starts. Rinse with baking soda as much as possible to keep mouth sores at bay and the most important.....be kind to yourself- you are going through a lot, so don't push yourself and rest! Hugs!

Lisaj514

yes good points shari. As much as we are all going through ourselves we are still present to help our fellow sisters through with love, kindness, support and even humor. You are a beautiful giving person slv. It just feels good to help. Helping others, helps ourselves, doesn't it?

Anxious/worried about not hearing from Arlene in a while. Hoping and praying all is ok.

Arlene, a quick check in if your reading but just not posting.

Luv, ally, good luck. Love and support for good outcomes

TNBCinSTL

awww you girls are great. once again, the universe putting me where I need to be....

Meadow, we moved from NJ 6 months ago, and I didnt know a soul here in MO. As I like to joke, cancer has opened so many doors for me, really got my social calendar buzzin' ;o)

Lisa- The hair happened sort of a progression from diagnosis to now (I'm still rocking the faux hawk although my head is tingling and I'm calculating I've got about a week of hair left?!) I called myself pink ninja walking, little did I know how great minds think alike, and we are a collective group of pink ninjas in this fight. I didnt want this to be a time when my 3 little ones looked back and thought of how sad we were when mommy got cancer, but remember that time mommy got a pink mohawk, and then we had a party and daddy shaved her head, and then we had a bald head painting festival on mommy and daddys (already bald) heads, etc. etc. Life goes on, it doesnt stop b/c I have cancer. The kids don't get put on a shelf and I get to take them down when I'm done. I want this time to be less about me being sick and more about the lessons we learned along the way....for the full hair story: http://bbkap.blogspot.com/2015/02/i-am-my-hair.html

Shari - HiiiiiYaaaahhhhh, ninja the @#%@#$ out of that B#$%!

Anyway, I'm happy to be in some good warrior company, and to get little shards of beauty and wisdom together in this gift we've been given (I tried to return in but life didn't offer a gift receipt!)

to all of you having a tough night/week/month/year, tonight I pray that anxieties are softened, minds are quieted and hearts are open, and that tomorrow brings an easier day.

xoxo

eileenpg

TNBC inSTl= I did 6 rounds of cytoxan and taxotere. My advise is take and aleve and claritan for 5 days. I assume you are getting a nuelasta shot. I drank gatoraid G2 constantly for hydration. Also, I walked everyday if possible. Go find a treadmill. I never had neuropathy Good luck. Welcome to the club. Best group of people you will ever meet in your life. i used biotene for my mouth. Toothpaste and rinse.

Lisaj514

TNBCinSTL (Becky is easier!), wow what an amazing post. Read your blog, your words are captivating, honest, funny, emotional, real. We've got a spitfire here girls. We can laugh and learn from our new bc sister here. Do you write or speak for a living? Your posts could be a book. You are destined to be a help to others here and on the feb chemo thread. Glad you are with us (well not really) but you know what I mean.

As you see I did 4rounds of A/C, 1x every 2 weeks, then 4 rounds of taxol (dose dense every 1x every 2weeks also. Had lumpectomy first and 4nodes removed which were negative. Then pathology from surgery found the TN. Did not know that from biopsy. Initialky thought dcis and only lx and rads. tN changed it. BRAC1and2negative. Kept my lumpectomy. did chemo then 33 rad treatments. Rads are easy. Chemo not so much but that's when your ninja warrior will show up on some days (and some days she'll be hiding but will show up when needed, I promise). Go get it done girl. We look forward to reading your progress and helping where we can

Cocker_Spaniel

Welcome Becky,  wow what a way to go,  with an attitude like that you will sail through.  I echo the girls,  drink at least 2 litres of liquid per day, and take nausea meds even if you don't feel sick.  I ate a lot of melon because it was cool and refreshing. The one horrible problem I had was constipation.  Never had it before and what a pain in the &^%%$## it was.   Was prescribed coloxyl and senna but the senna gave me tummy pains so they changed it just to coloxyl.  If you can a little bit of exercise it helps each day but also rest as much as you can, although hard to do with little ones.  Glad you found us and ask away if you have any questions or just want to rant.      

LUV hope all goes well.  The contrast didn't make me sick or feel sick at all.  Just keep thinking to yourself that hopefully this could be the end to your problems.  Sending prayers and hugs that everything is ok.

Toby sending heaps of prayers and hugs and hoping there are no problems and that all is good for you.

Slv  Ok girl practice over time to kick A****  In your pocket for Tuesday.  It's coming up fast. Hopefully this will kick cancer to the kerb once and for all.  Big hugs. 

TNBCinSTL

thx for all the helpful tips girls, will do! Water water water!

I'm thinking of all the ladies that need a hand to hold. Your friends here got you and you got this. Close ur eyes and draw from that. You'll get thru and hopefully with good news!! Xoxo

Allydp

Luv and Toby - thinking of you both today and in your pockets! Let us know how it goes.

Arlene - hope all is well and recovery is going smoothly.

Becky - welcome! I love your hair! I'm sorry you're here, but this is a wonderful group of women.

In regards to a Facebook group, I'll go wherever you all go.