Calling all TNs

natL12

5thsib - good luck with the special walk.  I thought it was awe-inspiring to see all those other survivors.  Gave me great hope. Nat

OBXK

Phyllis - great news on the MRI!



Last night I had a "spell" I was weak as a kitten, couldn't get my words out, my tongue was numb and I was alternating crying and laughing hysterically.

DH and 13 year old son were scared to death.

MO said didn't think it was brain mets (because I recovered, although I read symptoms can come and go) didn't think it was Exloda or a

stroke, but to start taking a baby

asprin.

I have a few things to look forward to in the next week. So I'm not in a

hurry to know just what happened.

If it happens again, I told my

husband to take me to the ER.



Tomorrow, my best friend from HS is coming to visit !

JAN69

OBXKaren - What a scare!  Glad it passed.   I'll be holding your hand during those "things you look look forward to next week."

I'm still sitting by the phone waiting for results of my thyroid/parathyroid biopsy.  It's been a week and I'm about to implode, or maybe explode.  Still rocking my lazy boy as fast as I can.(chair, that is)

Wishing each of you some joy this weekend.     Jan

QueenKong

Hi Everyone. I've been a bit MIA dealing with the rads and I am finished. I've been bitching about it on the Spring 2013 rads threads. It has been a tough time for me with an esphogus burn, the rads burn and shingles on top of it. I am here to tell you all to GET the SHINGLES VACCINE!!! None of you should suffer this when it's preventable and when we are going through treatments it's a not so uncommon side effect. Make them give you the shot!!! We all should be advised to get a flu shot, a pneumonia vaccine and a shingle shot before we start these treatments. I wish someone had advised me to do those things.

Anyway

Jamie, Hi. You are going to get through those treatments. You can do it. Advocate for yourself and keep on top of the SE's. You will get through it.  Come here, go there do what you have to get what you need. The treatments are scary and hard. THe best thing I did for myself was to walk almost everyday. It really helped. I did as much as I could in between all the tough times and it's been rough for me. I got back out into the park today with the weather so wonderful and a break because of the freakn shingles, I couldn't exercise. Keep going!! Treat yourself well girl, be good to yourself. It's going to be rough but you can and will do this. We're here for you!!

Anna, I had similar stats but different treatment course and they did the rads on me. THere are some threads out there about to do or not do the rads. You might want to give them a read. 

OBXK - that episode sounds crazy. I am glad you moved beyond it. I wonder if it could be some sort of allergic reaction? I like this new avi of yours.

phgraham - good news on the brain mri

LuvRVing - I am happy to hear about that little break you got. I want to have one too. I'll be there soon. 

Anonymous

Karen - Sorry you had such a scare! It sounds a little similar to one that chickadee described but yours had more physical symptoms. Thanks for letting us know. Hope there is no repeat!



Phyllis

OBXK

Jan - I hate a weekend wait! Good thoughts headed your way - try not to wear out any of the lazy boys around your house



QueenKong - so sorry you have shingles, talk about insult to injury! I hope it quickly runs it's course and that you don't go mad in the mean time.



Phyllis - I'll have to go back and look for chickadee's post. I didn't want to post my "spell" there, as I didn't want to scare anyone.



Luv - so glad you had a break, and were able to enjoy yourself.



For all the ladies in treatment - wishing you few side effects and lots of rest.

jenjenl

random question - i always see people say that TN is grade 3 and maybe I am reading my path report wrong but which one is the final grade: 

tubule formation grade 3, nuclear grade 2, mitotic rate grade 2, combined histologic grade 2.

Today I woke up and the 1st thing I thought about was cancer....damn it. 

teresa008

Hi all,

Did anyone else's nueropathy come with blisters and itchy rashes? My hands looks terrible and now my feet are starting up.

Take care.

PeggySull

Teresa, mine came with a mustard colored seepage under the nails and my the tips of my fingers look like fingers when you have stayed in the pool too long. I'm 6 weeks out from the taxol that caused this and there is no improvement so far.



Oh the price we pay for treatment physically is outrageous!

teresa008

Thank you for responding. I haven't taken taxol yet and I have decided not to, so all of these blisters and rashes are from AC. I have one more treatment to go next Tuesday, then I'm done. My surgery for my permanent implants is scheduled for June 11th. Yay!

jo92879

Thank you all for the encouragement and support. This has been such a tough round for me to get through, I am just starting to feel better but I already have to go back on Wed. I am really hoping that the next round goes better. I did go to the Breast Cancer Coalition on Friday to get some added local support. I really felt good about going, seeing and meeting women just like me. I am half way over the AC hump and know the next two rounds will be tough but I just have to find a way to get through it. It is encouraging to know that the Taxol may not be as hard on me. It is something to look forward to. I hope you all are doing well in your journey and thank you again for reaching out and making me feel better.

teresa008

QueenKong, what are the symptoms of shingles? If you don't mind my asking? Please feel free to private message me, if needed.

Titan

jen...the grade 3 thing ...I think that all your "scores" are added up....I believe..but don't quote me that 8-10 is grade 3....my score was also a nine

Luah

jen, Titan's right. They add up 3 scores. Yours comes to 7, overall a grade 2.  I know mine was 9/9, grade 3. However, my surgeon explained that this is an imprecise "science..." one pathologist may score what they see a little differently from another. I tried not to get too hung up on that nasty number...TN is known to be aggressive.... which is why it responds well to chemo. 

SherylB

Stupidboob,

I have done 14/33 rads and so far no problems except a bit more fatigue. My skin might be a bit darker but not anything anyone else would notice. The worst part is the hour drive each way for about 3 minutes on the table. I use a cream called My Girls and pure aloe.

Hugs, Sheryl

Cocker_Spaniel

So hard keeping up with everyone on here, so much chatting.

Theresa my hands were terrible on Taxol.  Red, blotchy, blistering, irritating rash that nearly drove me mad.  I could hardly type because my fingers kept splaying out and sometimes the left little one still does and when I type instead of A I get Z, really annoying but the rest of my hands are much better now. My nails were also a yellowy colour but they are slowly coming right.  Just hang in there girl. 

To all you ladies who feel like giving up on AC,  try to hang on, it will be worth it.  I wanted to give up from treatment 1 but the ladies on here carried me through as they will you.  I had AC every three weeks for 12 weeks and thought each time that I couldn't carry on but I did because after the first four bad days I then got two good weeks. Just remember to drink plenty of fluids, eat what you fancy and rest as much as you can with a little bit of exercise thrown in because it really helps.  Thinking of you all.

Jan yep my little Chloe is still around but only just lol.  Just before I leave for work each day I close all doors so she only has the lounge to go to and its been working UNTIL, I went to the garden the other day and because we  have had hardly any rain for so many weeks the grass hasn't  been growing  so much so I looked under the  caravan to see if the grass was long and what did I see, a stash of tins, bottles, plastic you name it.  She is so little but somehow she had got into the recycling bin and taken out what she wanted then gone under the van with them.  Again teeth marks in every tin and packet.  She must be the only dog with the sweetest face but teeth  like piranha's.  I threaten her everyday but my daughter said "but mum you threatened us every day and we turned out ok" lol.  The thing is she is so gorgeous and I love her to bits but she is a trial. 

LUV so glad you enjoyed your trip.  Now back to the job of kicking that cancer's arse.

Titan yep those thighs are clapping for you.  Keep up with the good work girl and I will sit and think of you (with me flag).  lol. 

Just had a bacon sammie for breakfast, weren't arf nice.  Bugger the cholesterol.

Bak hope your hip is better now and you are back on your  bike with hubby. xx

Have a good day ladies.  Sunny here today lulling us into a false sense of summer when winter is around the corner. Oh well I think I will mow the lawns. Warm hugs to everyone with love.

LRM216

Hey Annie and all others on this board:

Thank you so much for thinking of me, and just wanted to let you know that I am fine.  Just so busy getting Bryanna through her senior project, all her AP exams.  Graduation is coming up May 25th, and then after that it will be getting her ready to go off to college in August.  While the slow down in my everyday schedule will be blissful once she is off to college, I also shudder at the thought of her not being here everyday.  This will be the first time I will be totally alone since her mom, my daughter Tiffany, passed, so I am a bit apprehensive about that.  I figure with all I've been through, losing a husband, fighting off cancer, losing a daughter, I can certainly get through this, plus she's only an hour and a half away, so I'm sure she will be home more than just on the holidays (at least I can hope!).  But I'm so proud of all she has accomplished and so thrilled for her that she is approaching the dawn of really beginninng to live her life.  Just had my six month mammo and ultra sounds and all was well, as was my onc visit in March.  I am on 6 month visits with her since I hit the 4 year mark in February.  Insurance company ticked me off though as they refused the yearly breast MRI that my BS still wanted.  Reason for rejecting me is that I am now 4 years out and it would merely be "investigative" at this point.  Duh!  Isn't that what a mammo is?????  Also said that because I never had the BRCA testing they were also refusing it.  Guess the idiots forgot that they refused that too since I was over 60 and the third reason  is a real whopper - because my mother, my sister and my living daughter do not have breast cancer, that also is a reason to deny the mri.  Hello - I'm the one with the dang triple negative cancer!  Doctor fought it for me to no avail.  She too feels they are all idiots.

I always read the posts, and my heart goes out to all the newbies and those hitting another mountain to have to scale.  My heart will always belong here with all of you.

Be well, sweet friend and will talk with you again soon.

Love, 

Linda

teresa008

Thank you for responding Cocker, but I haven't done taxol, just ac. Has anyone had a rash of little blisters all over as a result of ac?

OBXK

Teresa - it sounds like you have hand and foot syndrome. I'm glad you only have one more treatment!

teresa008

OBXK, I know. I keep looking at my poor hands and feet and think 'if this is what three treatments look like, what will four look like???'

teresa008

I do have a rash on my stomach, too, though. I don't know what this is but it's driving me insane!!   Extremely itchy!!

Cocker_Spaniel

Linda you take my breath away with all that you have gone through and all that you have achieved with your beloved granddaughter.  Thank God she had you to turn to for comfort and love when her mum passed.  A lot of people couldn't and wouldn't have done what you did and you have my complete admiration.  You put her first beyond anything else and that is so commendable. Something will turn up for you to take your mind of her leaving for college and though you are proud of her I am sure she is equally as proud of her Nana.  You both deserve only the good things in life now and it will come I'm sure.  You are a five star Nana in my book, one of the very best. May good luck, happiness and love go with you both always.

Cocker_Spaniel

Jan, it may not be white and it may not have the irresistable sweet expression but the jar reminds me of someone I know!!!

Cocker_Spaniel

Jan, it may not be white or have that irresistable sweet expression but the jar reminds me os someone I know!!!

Reality

Making treatment choices is tough. I have made several this year - none have worked. My last try was carbo-gem. That did a number on all my blood counts which lead to blood transfusions and self-injections of Neupogen (nasty stuff! I called it, "Neupogen Hell").  The last choice I had to make was between stopping treatment or trying Xeloda. How ironic to have a choice like this, as my onc team acted as though I was crazy for wanting to stop treatment four months ago when they talked me into carbo-gem. Now they are suggesting I stop! Stopping treatment did not seem as frightening when I initiated it - now that the profs are suggesting it, I am scared. My onc does not have much hope that Xeloda will work or that my body will tolerate the intense side effects many suffer. Oh well, at least I can say that I tried. 

Sherry

teresa008

Reality, I'm new here, can you tell me your story? Have you had surgery?

Reality

Hello, teresa, Sorry I have not been able to respond. Busy "gramma" weekend. I thought I would have a chance to respond this evening, but my sweet little 6 yr old granddaughter just called to ask me to pick her up for a "girls night" at my house. I will respond sometime tomorrow after the school bus arrives! 

(briefly, yes, I had a lumpectomy 1 1/2 years ago. My disease is very aggressive and chemo resistant - I have lung mets that continue to grow, in spite of chemo. I will be starting Xeloda this Tues. It is the last resort before stopping treatment and going to palliative care.)

'Talk to you tomorrow- 

Sherry

Titan

Sherry...hope xeloda works for you.......please please please

natl...good for you on the 5K...!  it so fun...never thought I would say running is fun but it truly is.

Good to hear from you Linda!  you are awesome lady...

Cocker_Spaniel

Titan of course running is fun.  When I sit and watch people doing it I thoroughly enjoy it lol.

InspiredbyDolce

Hi Everyone,

Here is a question and answer session I came across - it's with Dr. Lisa Carey, who has led much of the research regarding TNBC. 

This is titled:  Current Perspectives on Triple Negative Breast Cancer:

 http://www.ascopost.com/issues/december-15-2012/current-perspectives-on-triple-negative-breast-cancers.aspx

There is some very enlightening information on there, and she mentions 10-year survival rates may be a better predictor and the variables that sometimes affect the stats.

Talk to you all soon!