Calling all TNs

LRM216

Becca:

Wishing and hoping that this is all done quickly for you - the waiting is the absolute worse.  Recently went through it myself and thought I'd have to be peeled off the walls.  Hoping all will be absolutely fine.  We're all holding your hand through this ride.

Linda

mccrimmon324

Becca, I'm so sorry your going thru this now.  I'm praying it's only arthritis. 

Inmate - You had mentioned working on some t-shirts, I honestly think you should use the pics of yourself.  You could always choose to grey out your face if your wanted.  Maybe put "One in Eight" or whatever slogan with it, I don't know but I really do think your could/should use them.  I think they are the perfect tool to get the point across.  You are beautiful, those pics are beautiful and your hubby did a fantastic job capturing the reality of our situation.  And quite frankly I don't give a F&%K if someone finds it offensive.  People walk around with obscene gestures and language on their clothes everyday.

I'm just so angry and upset I want to scream!

Anonymous

Inmate, I agree with Heather about the shirts. They woud be incredible!

Teka

HI Everyone,

I am a Licensed Practical Nurse in New York State and have seen  many BC women in the buff.  Whatever!   I don't feel the pictures are offensive but was taken aback while reading the posts.

I've posted a revision to this post! 

mccrimmon324

Teka, I'm sorry if my language offended you.  I will try to refrain myself in the future but I find it is a way for me to release some of my stress and anxiety I feel towards this horrible desease. 

mitymuffin

Laura Jane, How are you doing?

inmate4232010

mccrimmon....i would be more than happy to put my mug (and the girls) on a shirt.  funny, i was more worried about offending you girls than i ever would be offending the general public.  a little shock therapy might do some good for those who aren't in the thick of it.  i am still working on the shirts, just not as "on-it" as i used to be.  i will keep you all updated.

my friend is doing a fundraiser - "curaoke" at our local eagles club.  we will have a silent auction followed by karaoke.  it should be a blast.  for the event she had some buttons made that say "cancer makes my crabby" with a picture of a crab (like the zodiac sign). i think they are fantastic!  if anyone is interested i can send a few your way.  just pm my your info. 

i just had a bit of a scare.  my husband is out of town and the morning he left i noticed a rash on former lefty by my smaller tumor scar from my re-diagnosis in november.  he was also out of town when i was re-diagnosed.  hmmmmm, maybe that's my cancer trigger, my hubby being out of town.  poor thing, i don't have the heart to tell him yet.  i fear he may never want to go out of town again.  of course i imagined the worst and just spun around my house until i couldn't stand it anymore and called my MO.  this was on sunday.  as luck would have it my Dr was on call.  I went to see him on Monday and he took one look and said i have shingles.  now ain't that just a bugger?!  of course my mind immediately went to skin mets so was relieved to hear shingles.  who in their right mind would be happy about that?  i suppose that says it all!

i feel silly even complaining about it given the turn of events for Susan.  this cancer crap is the gift that keeps on giving.  ugh!  it occurs to me that it is a bit like being afraid of the dark.  i know i shouldn't be afraid, but am convinced their is a monster hiding under my bed just waiting to pounce.  i've been sleeping with the light on since my DH left.  so far it isn't helping with my anxiety or sleep.  

i hope that everyone has a good day!

Teka

mccrimmon324,

I believe this is the 1st time lumpectomy and mastectomy pictures of a member have been shown on this thread.   I should have said the following   ------   I don't feel the pictures are offensive but was taken aback while seeing the posts.

Anonymous

inmate, Shingles?!  Oh good heavens!  You're right, the gift that keeps on giving.  Sorry about the monster scare but glad the rash will be gone sooner than FC.  Interestingly, I worry about shingles being triggered with all the crazy meds we get.  Never had shingles myself, but have several friends who have.  I hope you didn't get my round!   (I have no idea why I worry about shingles when there are so MANY things to worry about.)

I will pm you for crabby shirts!

Anonymous

Hey guys.... offensive? WTF... don't forget, I wore the shirt that said:

"F*ck Awareness   Find a Cure" all last October. And there wasn't any asterisk where the letter "u" was either.

My son's rugby team loved it!

Lovelyface

HeidiToo - I love it too. I join you in saying "F*ck Awareness Find a Cure".........  And yes, I wouldn't put the letter "u" in it either.

mccrimmon324

Lovelyface, how did your appt go yesterday?

laurajane

Lovelyface- how did it go yesterday?



Inmate- has your rash spread? I dont want to freak you out but I had an onc that I hadn't seen before actually a fellow try and diagnose my skin mets as shingles. I really hope your rash has spread to other areas and it is shingles. I would much rather have shingles than skin mets. again I really don't want to put fear back into you and I pray your onc is correct.



I saw my onc yesterday. I'll continue with the Halavan. It's not working as well as it did but it has so far kind of slowed it down. I've had the max rads so as they were hoping to radiate the tumors that have rendered my left arm immobile, that is not an option. No mets to tailbone or hips seen from

X-rays and no significant change to my tumors not worse than before Halavan but not better that's kind of good, better than worse. I'll take that with a smile. I discussed the metformin and although my onc wrote the 'script for it I haven't started it without some more investigating, she claims it's beneficial to woman that are overweight, I've always been an ideal weight, I've lost about 15- 20lbs but most of that is muscle mass since my diagnosis, she feels it would be dangerous for me to take. I'm not sure she really knows that much about it. I'm due for another complete scan but she feels like what's the point, my only option is to continue with the Halavan , my thoughts today are to have a scan, start metformin and continue Halavan and then get rescanned in say 3 more weeks if all goes well. Any thoughts? I will do some more investigating on this metformin. This is the first I've heard of it only benifitting over weight or heavy women. By the way my bone pain is caused from me being literally skin and bones I have sadly lost my butt. Where's Fredericks of Hollywood when i need them, they used to sell butt pads. I'm lucky as far as my onc really doing anything I ask, she is very open.

mccrimmon324

Laura, glad to hear that its not worse.  and no mets to tailbone or hips. 

Metformin - My onc refused me but told me to ask my family dr.  I have my yearly physical / pap on Friday, I plan on begging him for it.  I can't believe I'm going to say this.  Thankfully, I'm overweight, so hopefully that will be in my favor.  There that will be the first and last time I will ever say that.  Are you still doing your macrobiotic diet, meditating, etc?? 

SoCalLisa

Hi all, I am a long term BCO lady, not TN, but have a friend that had ER pos cancer twenty years ago then a TN tumor under her arm, and now mets...she doesn't know til Friday what kind it is..any suggestions...?? The onc basically told her if it is TN to get her affairs in order...hmmm and this is at a National Cancer NIH approved Center..

Lovelyface

Hi all, I had the MRI guided biopsy and then 2 images of mammo.  The procedure is very uncomfortable as we all have experienced.  They took 12 samples from the right side.  The Rad said that the enhancement was very small, however, they still have to follow through once they see anything like that.  I asked her what are the chances of it being cancer, she said even if it was cancer, it would be a very early stage, or could be a DCIS.  The tech. told me that they do lots of biopsies and a "very large" number of them are benign.  They just have to follow protocol once they see an enhancement on an MRI.  I was a bit relieved to hear this, however, am sitting on pins and needles at my desk at work.  Just waiting for my cell phone to ring........ which could make me celebrate or it could change the course of my life forever.  Thanks everyone for your love and support.

Babs37

Laurajane- I don't understand why your onc thinks it would be dangerous for you to take Metformin now? Is your liver ok? Because Metformin is metabolized by the liver.

I know that some doctors do prescribe Metformin for overweight people that have trouble loosing weight and dieting, but that is not why they are trying it on cancer patients. I am not overweight and Metformin did not make me loose weight that much, maybe 2-5 pounds at most (if it's the Metformin that did that for me). I believe that researchers found that Metformin is a powerful antioxydant too.

The only suggestion I have if anybody wants to start taking Metformin is go slow. Start taking half the dosage for the first 4 weeks to see how your GI system will handle it and then go for the full dose.

Anyways here is a research I have found that explains what they see in Metformin working for cancer patients: 

 http://www.diabetesselfmanagement.com/blog/david-spero/metformin-wonder-drug/print/

Fighter_34

You can always try the metaformin for a month and if it gives you too much stomach issues then you would have your answer. I can say my tumor markers have dropped even lower since starting the trial but as you know that could be from other factors as well.

But really it is a choice you would have to make.

Sending happy vibes to us all.

Spica16

Hi beckyv,

Just wanted to let you know that I am 3 weeks out from my last chemo (DD Taxolx4) and I am feeling great!  I am now dealing with the 'cosmetic' SEs...bald head, no eyebrows, sparse eyelashes, and funky nails (brown-stained,ridged, but growing out). These are doable! I still have some neuropathy in my fingers and toes, but it lessens each day. (I have MS, so my tingles/numbness may last longer than a 'normal' person's.)

AND...I have hair "nubbins" sprouting!!!

Get ready for that cruise...you're going to be fine! 

P.S. Prayers and comforting thoughts for all on this board. Thank you for guiding me through this long journey.  ~ Shar

Lovelyface

SoCalLisa - I am so shocked when I hear Onc. say things like that.  TN does not mean a death sentence, even if it is mets. 

KarenBeaty

I'm 44, originally diagnosed in 2006 with stage III TNBC, 3cm tumor in breast, sentinel node biopsy came back negative, bi-lateral mastectomy, chemo and then reconstruction.  Metastatic recurrence after 5 years NED, DX stage IV TNBC, same cancer had apparently been in my blood stream all along and did not respond to original 6 rounds of  ACT chemo.  Since my latest diagnosis in August, I have been through both arms of the oral Xeloda trials.  Neither ARM worked for more than two months.  Began Ixempra by infusion last week and already the axillary tumor appears to be shrinking. Mets are currently 1 supraclavicular (4 cm) and two axillary lymph nodes completely replaced by tumor (largest axillary tumor is 7 cm), 1 hylar node, multiple mets to both lungs (small at 13 ml right now). 

LRM216

Karen:

I am so sorry to hear of your recurrence.  It's a fear we all live with daily, no matter how well we appear to be doing.  I am 3 years out tomorrow the 23rd and I can honestly tell you that I do not feel any more reassured now than I did right after all my treatments ended.  You are a perfect example of what I am talking about.  With this dreaded disease, I don't believe any of us will ever be on the "safe" side of the timeline and I hate that all of us have to live this way.  I just wanted to suggest to you another site that I am on all the time, as well as this one, and that the TNBCfoundation.org site.  We have some gals over there that are also in the same situation as you are and they are wonderful, loving, very helpful ladies.  If you haven't posted over there yet, I strongly recommend that you have a look at it.  I am wishing for you complete success in kicking this beast to the curb. 

Linda

LRM216

Heidi:

I'm with you as well.  I find absolutely nothing offensive in anything that is posted on this forum, and never will.  We have all earned the right to come here and post whatever we want in any way we choose after having to deal with the loss of dear friends we have made through this disease, sitting by helplessly as we see other dear sisters being ravaged by this beast while fighting to stay alive, living daily with our scarred and beaten bodies and psyches, and let me not forget the fear that not one of us escapes that this rotten disease has brought into each of our lives.

I will get off my soapbox now......

Linda

TifJ

Linda- Couldn't have said it better myself!

Titan

What is OFFENSIVE.. our friends and relatives dying of this freaking disease..that is offensive..

Titan

That's ok Teka..people need to see pics like these....they may be shocking but they are so very true and real...Pics like the scar project and Inmate's show the physical..and also the mental part of breast cancer...

Ah..dang..but cancer sucks...

gillyone

Are we over-thinking Teka's comments? I just read it to mean she was "shocked" in that she was surprised to see the pictures, just not expecting them.

Teka

Titan,

I've no problem looking at pictures on-line, but comforting BC patients with a gentle smile while they looked into my face to see if I was repulsed was a little harder.   

OBXK

Inmate - I hate that you have shingles. I hope they run their course quickly and that your husband comes home soon.

Heidi - your shirt made me smile

LauraJane - sorry you lost your butt fat! Hope you have the perfect pillow. My mom and I laughed till we cried over finding her the right one. I must have bought 3 dozen to try.

KarenB - I am so sorry the beast returned. I hope you are able to find a way to keep it under control for a long time to come. It just sucks!

Linda - applause - applause! Well said.

Lovelyface - Got Ativan? I hope you get good news... Soon.



----

I see my BS tomorrow. Sometimes I think I should stop with the followups and just live without all the scans and stress. I know...

Lovelyface

Oh you beautiful ladies - I finally have the news and it is Good News, there was nothing, it was benign, they didn't even find any atypical cells, it was clean.   Oh my God, what I have gone through these past few weeks.  The Rad who did the biopsy had told me to wait 2 days for the biopsy results.  I just thought I would call my Surgeon and give her my correct phone number once she had the results.  The receptionist said they had just received the results and the surgeon would call me after she is done with a patient.  I started shivering, shaking, my heart racing, and not to mention the tears.  I don't think there are any words to describe this anxiety.  My co-worker says to me, try to keep calm, you can be calm in the midst of a nightmare... dah, dah and dah.  I asked her if she had ever been in a position, where the next moment, her life could change forever, maybe the next moment, she would get a death sentence.  She said she went to a class where the teacher was talking about how some people even remain calm when in a fire.  I asked her if the teacher was ever in a fire himself.  It is so easy to give adivce to other people. I wonder how this co-worker will do if she is in my position.

Anyway, I am in bed right now, trying to make myself comfortable. I don't know how I drove home, as this emotional nightmare made me feel so sick afterwards.  I think I even have a fever right now, which maybe from the biopsy.  My boss asked me when I will be facing this again, I said in 6 months.  I am not sure why they are giving me MRI's every 6 months.  Maybe because I have those atypical cells on the right side.  But if they didn't find any atypical cells - they took a set of 12 samples from various areas, I think which indicates to me that the atypical cells are gone.  I wonder if they can actually go away.  Does anyone have any info. on this?  I need to read my report.

But ladies, all your good wishes and blessings have brought on this good news for me today.  I feel really very bad and guilty having this good news when some of you, my friends, are not doing so well.  This seems like a game, isn't it, except that we are all playing with our lives.  So far the MRI of the cervical spine and the biopsy of the Right breast are all negative, thank you Dear God!  And thank you to each and every one of you who sent me good wishes!  Love you all!