Calling all TNs

journey4life

Cat - I was given Valium before an injection in my neck...I have no idea if they gave me anything else but I didn't feel a thing! Otherwise, I would insist on twilight...it's your right as a patient.

tekwriter

cat can they give you that twighlight sleep they talk about? they put me semi under for my port placement, I don't know what it was called but i was out for most of it but didn't have the breathing tube like when I had my ankle surgery.  Take some slow deep breaths and hang on.  We are here.

TifJ

Cat- hoping those spots are of no importance.

Hi Bak!!

Jianchi- haven't heard from you in a while- how are you?

simplelife4real

Cat, I'm so sorry you are having to face more tests and dealing with so much right now.  I'm jumping in your pocket and STAYING there through it all.  You are not alone and have all of us out here in internet-world to support you.

I had my first meeting with my MO on Wednesday since my surgery.  My neoadjuvant therapy helped a lot.  There was nothing left of the original tumor, but two nodes had residual cancer.  One node had 2.5 mm and the other was a micro amount.  My MO doesn't like to give adjuvant chemo unless the residual cancer load is higher (around 1 cm).  In that case, she does give carboplatin post surgery.  Instead she has put me on metformin for 5 years and will also check my vitamin D levels.  She said my chances of survival are now at around 85-90%.  There is a clinical trial that I qualify for with eribulin for people that don't initially achieve a pCR.  I'm looking into it, but thinking it's unlikely I'll do it.  I feel so tired at this point that the thought of more chemo feels really daunting, plus they took my port out during my surgery three weeks ago.  I'm kind of thinking that I just want to get on with my life.  We'll see.

BanR

I logged in after a good number days and just finished reading all the posts. Waving a big Hi to everybody.

Simple: good to hear that Ac and Taxol killed the entire tumor. So what has your onco planned for those few mm of cells left behind,...radiations? And 90 percent sounds like a good number..I read somewhere that even if a patient achieves complete Pcr ( tumor plus lymph nodes )she is given something around 92 percent and not 100. 

Cat: I am praying hard for you. I hope that all that is just false alarm and nothing comes out post the biopsy. Please keep us updated. 

Inspired: thanks for the assurance . Somewhat relieved to hear that even you had similar variations like me but your dosage was not changed

Jianchi: your taxol must have been over by now. How  are you feeling.

As for me, radiations are round the corner and I have not yet recovered from taxol's side effects. Consulted a neurologist yesterday and she asked me to get a Nerve Damage Test done. She doubts taxol has damaged more than it should have. I have this feeling as if somebody is continuously pricking me with small pins under my feet, on my palms and on my back, Cocker would understand it the best.

March 3rd was world TNBC day. Is this the first year that TNBC got a separate day? I think so.

Sending big hugs to u all...

InspiredbyDolce

I have not read this entire article, looks like a very interesting read though. I was researching exactly how does exercise help reduce cancer risk.  Here's an excerpt:

"In 1931 Dr. Warburg won his first Nobel Prize for proving cancer is caused by a lack of oxygen respiration in cells. He stated in an article titled The Prime Cause and Prevention of Cancer that "the cause of cancer is no longer a mystery, we know it occurs whenever any cell is denied 60% of its oxygen requirements."

"Cancer, above all other diseases, has countless secondary causes. But, even for cancer, there is only one prime cause. Summarized in a few words, the prime cause of cancer is the replacement of the respiration of oxygen in normal body cells by a fermentation of sugar. All normal body cells meet their energy needs by respiration of oxygen, whereas cancer cells meet their energy needs in great part by fermentation. All normal body cells are thus obligate aerobes, whereas all cancer cells are partial anaerobes."

http://www.cancerfightingstrategies.com/oxygen-and...

Other interesting random article on exercise and cancer cells http://www.menshealth.com/health/how-exercise-can...

simplelife4real

BanR, we will probably be starting our rads about the same time.  I have my consultation with my local RO on Thursday (March 13).  I'm guessing I'll be starting the following week....not looking forward to it, but know that I need to do it.  I had my surgery 3 weeks ago and still feeling very tired, but everyone says rads are much easier than chemo and surgery.  Sorry you are having nerve issues from the taxol.  How long has it been since your last infusion?

InspiredbyDolce

Jennifer Griffin is on TV right now - she looks amazing. She is a journalist and is covering the Ukraine/Russia conflict and is a stage lll TNBC survivor from 2009.  Here is a short Q&A with her from Women's Health Magazine:

http://www.womenshealthmag.com/health/jennifer-gri...

CatWhispurrer

Thanks everyone for being here and "with" me!

PET scan is not looking good either. 

They don't have an official radiologist's report yet on my PET scan, but
"unofficially" it shows above normal activity in those spots. That is
what a PET does is show unusual activity that other scans don't show.
In my case, they were going to do a biopsy on the CT scan alone
regardless of a PET so not sure if it adds any real value. They are now saying that there are two small lesions in my left lung and one large one in my right lung, besides the enlarged nodes behind my breast bone.   My biopsy should be next Tuesday or
Wednesday.  Thankfully, they have agreed to do conscious sedation so I shouldn't remember anything!  That has REALLY given me some peace of mind, if there can be such a thing at this point.

Banr - I had bad neuropathy in my feet/hands from Taxol too.   Felt like walking on rocks/glass.  Took about a year to resolve to a manageable annoyance.  Mostly noticeable when I first get up in the morning when hard to move my fingers but after that, I don't seem to notice so much.

ALHusband

Thank you all for chiming in on the frequency of your Onc appointments. Kathy had her regular Onc appt today. Just blood work but everything was "normal". Praise God! We march forward. First scan since diagnosis is scheduled for April 21st. Hoping and praying it will be uneventful. As for today...woohoo! Love those boring Onc visits!

CatWhispurrer

Bak - thanks for the suggestions and being in my pocket.  When my lung was collapsed, they used locals AND morphine to put a tube in and it felt like I had nothing!  It was pure torture.  

Did your nodes behind your sternum amount to anything?  I have some enlarged ones in that area too.

Having all of you in my pocket must have helped!  They have agreed to sedate me this time. 

CatWhispurrer

On another note.  Does anyone have the CA27-29 blood test?   I happened to notice that it has been slowly going up even tho within normal and asked my Onc about it on Wednesday (before tests showed suspicious spots).  He said it means nothing as long as it is in the normal range.     Normal is under 38 for my lab.   I started at 27 in 2012 and as of Aug 2013, it was up to 31.  I don't have results yet from Wednesday.   Hmmmmm?

prnciss74

Checking in here. I am a long time lurker! Just diagnosed at age 39 with metastatic breast cancer to axillary lymph node. I had cellulitis and infection in my under arm and left breast area late January into February. Went to see my primary and he ordered an MRI and they requested core needle biopsy of the area. Same side as the original breast cancer. Met with my new onc. Thursday 3/6/14 and she wants to start me on chemo next Thursday 3/13/14 the day before my 40th birthday. She immediately ordered CT, bones scan, port insertion and I will have an EKG. I'm going to be part of a clinical trial here in San Antonio at the Cancer Care Center for Triple Negatives. Everything is going so fast. Below is the info:

ABI-007-MBC- 001 is a Phase 2/3, multicenter, open-label, randomized, study that will compare thesafety and efficacy of weekly nab-paclitaxel in combination with either gemcitabine or carboplatin to the combination of gemcitabine and carboplatin as first line therapy in female subjects with Estrogen Receptor (ER), Progesterone Receptor (PgR), and human epidermal growth factor receptor 2 (HER2) negative (triple negative) metastatic breast cancer (TNMBC). In the phase 2 portion of the study, the combinations of nab-paclitaxel plus gemcitabine and nab-paclitaxel plus carboplatin will be evaluated, and a comparator arm of gemcitabine combined with carboplatin will be used. In the phase 3 portion of the study, the selected nab-paclitaxel combination treatment will be compared to gemcitabine combined with carboplatin to evaluate progression free survival, safety and tolerability, overall survival, disease control rate and duration of response in triple negative metastatic breast cancer (TNMBC) subjects.

I would love to hear from anyone taking part in the study. I will know next week what I will be taking. 

journey4life

Hi prnciss - glad you stopped lurking and decided to join in the conversation. First off, let me say I'm sorry you had a recurrence. Those of us who haven't had one dread the possibility of hearing those words. 

I haven't heard of the study so I can't help you with that but I can stand with the women (and man) here to help & encourage you along the way. I hope you'll post when you can and let us know how you are!

Kick ass! Lisa

Cocker_Spaniel

Simple so glad that there is nothing left of the original tumour after AC and 85%-90% is a very good chance of survival. Mine is only 50%.  It will take time to  get your strength back but it will happen little by little.  As for Rads I had no probems whatsoever.  No tiredness, no blisters and only a little bit of redness. Just remember to put the cream on and rest.  I never used to put the cream on before the rads, just only smothered it on after and before I went to bed because I didn't want to fry. Hoping all will be well with you and will be in your pocket.

BabR yep still got the pins and needles in the fingers and toes and funnily enough I get awful cramp sometimes in bed at night which I never got before.  It makes it hard to type with it in my fingers but somehow I manage to keep doing it.  Some days are worse than others and I don't seem to have the strength in that hand anymore. I am just over two years out so I am not sure if it will ever go away.    Also left with a weepy eye.  Chemo inverted my left tear duct and it's pressed up against the eyeball. So the natural tears that lubricate your eyes go into my nose and cause it to be blocked all the time which then goes down my throat and  makes me cough.  Suppose it's a small price to pay but it is irritating at times.  I so hope you are one of the lucky ones with the pins and needles and it eventually goes as most do. The only treatment is to have a probe pocked in it but the thought gives me the willys plus it could easily come back so no point really because I want a permanent cure. 

March 3rd. So glad TNBC is getting out to the world hopefully this may make the scientists take note and that a cure comes quicker or at least more effective treatment.

Cat still in your pocket and will stay right there with you.  Can they give you Hypovel (Midazalam).  They give this to patients undergoing gastroscopy or colonoscopy.  You are awake all the time but you don't remember anything.  Wonderful stuff.

         

Cocker_Spaniel

Prnciss74 welcome to the TNBC thread.  There is nothing but helpful information from these ladies on here and although I have never heard of the trial someone might have and will come on and help you.  My Doc's used to do the CA-153 but I asked not to have it anymore, anxiety got the better of me waiting for those darn results.

prnciss74

Thank you everyone for the warm welcome! 

CatWhispurrer

Cocker - thanks for staying with me.   I am going to have Propofol which is what they use for colonoscopies here.  It sounds the same as you described.   It keeps you concsious but you don't remember anything.  I am so relieved.

journey4life

Cat - I'll also be in your pocket and stay as long as you need me to!

CatWhispurrer

Nettie - Yes, I have a lot of cats because I have been doing cat rescue for about 16 years.   I have 12 cats right now, some are available for adoption, some are special needs, and I have one that is 19 years old.   They did help me get through treatment but in the last year, I have become overwhelmed with new special-needs kitties that take quite a bit of time to care for.  My worst fear is that I will not be able to care for them if I have to go through treatment again.  

Journey  and everyone else who is in my pockets - waving hi and saying thanks.   This next week is going to be tough.

LPBoston

CatWhispurrer  - I will be thinking of you this week.  Stay Strong!

InspiredbyDolce

CatWhispurrer - Thinking of you this week and sending comforting thoughts your way!

Leealice

prnciss-so sorry that you are dealing with a recurrence. Where is Devine, TX? I live in Dripping Springs and do treatment in Lakeway and Austin

prnciss74

Leealice- Hello fellow Texan! Devine is a tiny town about 30 minutes south of San Antonio, right down I-35.

Curlyq1974

I know this isn't the BRCA group, but I am so happy to report that my uncle is NOT a BRCA carrier!  It means my two cousins are not nearly at the same risk as I am!  WHOOO YHOOOO!!  I cannot tell you how grateful I am!  

tekwriter

stick one of those little kitties in the pocket for us to pet while we go with you!

Lookingforward66

Hello all,

Been absent for a bit. Thank you Inspired for getting my head in the right area! 

I have been getting out & doing. Anything & everything I can.  Of course my yoga. Even went to a singing bowl meditation & cried the whole time.  Major clean out of house, (Living too long at one address & all of a sudden it looks like hoarders living here.) gardening, trips with Grandson & Daughter.  Doing volunteer work (not an organized group) for friends in the area. Us older broads need to stick together to help  each other to get to doctors, therapy, etc.   Friend going for back surgery next Monday. Supposed to be outpatient. I just don't understand doctors & hospitals anymore. 

Anyone hear from Fighter?  

CatWhispurr make more room in pocket I am squeezing in also. 

Prnciss74 welcome. Lots of help here. Great ladies to cry with then get back up & move forward. Especially the motivation to move forward. We all need that. 

I am going to a Cancer Survivors luncheon on Saturday.  

Keep on keeping on!!!

Marsha

adagio

lookingforward - sounds like  you are doing much better. It is generally better to be busy with life - unfortunately for myself that has not been possible because I have had 2 bad falls within the last 5 weeks and I am in a lot of pain - basically just getting through each day. I love how you are doing a major clear out of your house - that is something on my to do list, but just don't  seem to get around to it - however, I did manage to shred 3 years of older tax files just last week - so much paper clutter. I am also helping 2 daughters with wedding plans (both getting married this year) and have offered to make the invitations for them, so hopefully I will begin to feel better soon. 

Hope everyone had a relaxing weekend and is making the most of each day. Off to physio today to see if I can get some relief .

Fighter_34

Just dropping in ladies.  All is well.  My lump has shrunk nothing to feel, I go for scans later this month, then a few more treatments, and then NED!!! Treatment was much easier to handle this time around no hair loss or side effects, but sleepiness a lot of sleepiness....

CatWhispurrer

Tek - I'll stick a couple of kitties in my pocket to keep you all company 

Looking -Welcome to my pocket!   

I wonder if hospital gowns have pockets?  I hope so, otherwise you will all have to wait with my hubby out in the other room.   I had my pre-surg workup today, so ready for the biopsy on Wednesday. 

Fighter - so happy to hear the chemo wasn't too bad and YEAH for NED!  Thanks for checking in with us, as I was just thinking of you today.