Calling all TNs

lrr4993

Christina - interesting.  I did not know that.  Sneaking disease, isn't it.

Although, I don't think that is what my onco was talking about.  She seemed to indicate that my TN tumor was probably receptor positive at one point and then mutated to TN.  Again, I am going to ask about this.  One thing I have always viewed as a positive (no pun intended) about TN is that it seems like our body chemistry is not a contributor.  In other words, getting it is a freak, chance occurance rather than and expected outcome of some sort of chemistry issue in our bodies.  I would hate to find out that the reality is that I have some extreme imbalance that causes it to not only develop but mutate into TNs.  Does that even make sense??  LOL.  I hate trying to understand this disease, but so badly want to.

ksmatthews

Just wanted to let all you ladies know you are in my thoughts and prayers.

Paintingmywaythru

I too want to send my thoughts, prayers, and love to all.

I hate this disease and haven't been on this site much recently due to moving but you are all in my heart.

Gabbi42

Thanks for the welcome messages. I still very new to BC and I find reading  messages about TN very depressing. I havn't had a chance to met with my oncologist yet so I am not even sure what sort of chemo I will be getting. But it will be starting the day after I get back to New Zealand so I will proberly have Jet lag and chemo at the same time.

LRM216

Gabbi:

This is the worst part, it honestly is.  Once you get into treatment, although I'm not going to say it's a walk in the park, but it is very doable, you will at least feel as though you are fighting this.  Until then, you just sit and think - and the thoughts are never really good ones.  It will get easier and we will be here to help you in any way possible.  Reading and googling was terribly frightening to all of us in the beginning.  It is a beast of a disease, but if you hit it as hard as you possibly can in the beginning, and make sure you have an onc that is proficient in treating triple negative cancers, you can succeed in this war.  Try to keep your chin up, and remember there are many of us doing just fine, and think of all the women that none of us even know about that either do not find solace in public bc boards, or have gone on with their lives and have left the forums behind.  There are many.  Keep us posted as you begin your journey.

Hugs,

Linda

bak94

MBJ-So happy to see you back online! It is mind numbing how quickly things can change with this stupid disease. Very hard to understand how it all happens.

LauraJane-I am very happy that you didn't listen to your docs and accept the 2-3 months! You are like an amazing energizing bunny! The best thing is that you can still shop for 4 hours Enjoy your day at the farm with your grandson. Last spring we did not do a veggie garden, hoping I get enough energy to do one this year! Our yard, we live on just a bit over an acre, looks like a tornadoe has hit! We still have downed limbs since the last storm.

My mo also said no to metformin for me, which I think is strange. I am overweight, a high bmi, but my blood sugar is fine. I will ask him again. He is actually doing a metformin trial, but I don't want in the trial because I want a guarantee that I am getting the drug!

Hi Susan, if you are lurking! Thinking of you and your family!

I could be wrong, but I seem to remember that they used to put everyone on tamoxifen and found that it did not benefit the er/pr neg. I will have to research this a bit.

I am so frustrated with my dogs! Every night after my husband goes to work they start barking! They know he is gone so they start to misbehave!

Cocker_Spaniel

Inmate - I too put all the lights on if my husband is away from home and I sleep with them on every night, all night,  until he comes home.  When I was 16 and my mother was dying of ovarian cancer every light in our home was subdued and I have never been able to stand it.  whenever my husband and I have brought a new home it always has to  have lots of light and lights. Putting the light on makes me feel better. Who ever thought a person would be pleased to get shingles.  So glad its nothing else.   

Lovelyface - I have been to Manakau many times as my daughter used to live there. I love Auckland but I'm not too keen on the busy busy motorway.

Gabbie42 - Welcome home.  Nice to have another Kiwi on here. Hope everything goes ok with your chemo.  I have only just started mine and have had one round which was pretty good thanks to the guys on here. So good luck.

Christina and Linda - thank you for your post on the flushing for the CT scan.  Tuesday is coming around so quick and my tummy is doing flip flops already.  Hope to hell I can manage to get that ghastly stuff down me.

Laurajane - well thats one movie I won't go to see.  Personally I find that George Clooney, although good looking,  plays the field too much. I prefer Harrison Ford, yummy.

MBJ - thinking of you and hopeing the Tamox will kick that cancer right out. 

    

  

   

Babs37

 On Metformin subject-  When my onc offered me to be in the Metformin trial, I asked if he could give me a prescription for Metformin (so we knew I would be getting the real stuff), he said "no". He explained to me that since it was still in trial phase, they didn't know for sure if it was a good thing or not. So he wouldn't prescribe it for me on his own. I think that maybe doctor stick together on that one, that is why maybe so many of you have gotten a "no" to get Metformin "off" trial. Not because it no good, just because they want people on the trial for data. And like I told LJ, my onc had all the trouble in the world recruting 25 women for the trial because you have to agree not to drink more then 3 glasses of wine PER DAY for 5 years on the trial!!! Women say NO because of that!!! I couldn't believe it.

Paintingmywaythru

Wow I would be in the trial....at least there would be an opportunity..

Lovely New Zealand ladies I made a  painting for a wonderful copuple of a kiwi bird as a present form the wife for her husband for their first anniversary. I am going to see if I can add it here.....

MonikaV

Hi ladies,

   Sorry have not had much time to post. I am doing well. My Best friend was diagnosed with BC- They believe she is triple negative. She is been crying non stop for two weeks now. I do not know what else to do to keep her spirits up. I gave her this link- Her name is Rejane so please give her your love if she join us. Thanks Monika

mccrimmon324

BAK - My one dog barks CONSTANTLY when hubby is not home, doesn't make a peep if he is.  He's definitely protecting our home and me in hubby's absence.  I try so hard to get mad at him but sometimes I just want him to shut up!!! 

Metformin - Had my yearly physical today, went armed with all sorts of studies about Metformin and BC. Dr would not prescribe for me for "Cancer", my sugars were fine so he wouldn't prescribe for me on that front either, however, I need to lose weight so he was able to prescribe for me for that reason.  HOORAY FOR MY FAT A**! 

Thinking of everyone and hoping we all have a good weekend. 

Lovelyface

mccrimmon - I didn't know that Metformin can make you lose weight?  Really?  I am seeing my Onc. on March 2nd, can't wait to ask for it. I am wondering what dosage he prescribed for you?

Anonymous

Sounds like some bark collars are in order...

mccrimmon324

Lovelyface, My onc would not prescribe for me, my family dr did.  He explained that as drug companies tighten their belts and are not spending on creating new drugs they are looking for ways that current drugs can be used for different purposes.  I guess one way they have decided metformin works is to help aid with weight loss.  He said honestly he doesn't know if it help because it helps to stabilize glucose levels or because it upsets your tummy and not to expect much of a weight loss from it.  He prescribed it for me in that manner because he "could", although he's well aware that I wanted it due to the studies I've read about BC.  It's not "standard" treatment for cancer so that's why the onc's don't prescribe or why he couldn't.  It's all politics I suppose.  I explained to him that since I don't get tomaxifin or heceptin, I really wanted to try this. 

inmate4232010

Paintinmywaythru......I absolutely LOVE the painting.  You are so very talented.  My Mom and sister both paint.  Me, I make jewelry and work with recycled fiber and anything else I can get my hands on.  The building part of things seems to be more my style.

Cocker Spaniel......my husband is now home and we are now saving on electricity.  Yeah!

 

inmate4232010

Susan......thinking about you. 

Lovelyface

mccrimmon - thanks for the info.  Yes, I totally agree that we TN's have nothing at all after treatment is finished.  I have a low hormone positive so they tried to give me aridimex, but that drug almost disabled me.  My body could not take it at all.  I have a feeling that Metformin might help me, as I have always felt that glucose metabolism in my body is not entirely normal, although I don't have diabetes.  When I do a non-fast glucose test, it is on the border, such as 98 or so.  I don't do well on most drugs as my body tends to reject them, but I feel that I could at least give this a try.  Not only will it help with recurrence but help lose weight (I hope).  I will ask him, see what he says.  But yes, the way you presented your case, that TN's don't have any additional help, that was great!  Let us know how it goes.  What is the dosage?  My Onc. is more liberal with scans and drugs, than my primary care.

Babs37

Metformin- The clinical trial dosage is 850mg X2 a day. One in the morning with breakfast and one with supper. ALWAYS eat before taking your Metformin for it can be hard on the stomach if you don't. I always take mine  half way through my meal.

mccrimmon324

Babs - Are you in the trial?  The dr is giving me a lower dose of 500mg x 2 day.  Thanks for the tip about eating. 

KSteve

I realize I'm behind the curve on Metformin.  What is the trial and is it supposed to help Triple Negative BC?  Is it for lowering chance of reoccurence?  Is there a downside to taking it?  I could definitely stand to lose at least 25 pounds and have started making big changes to diet and have upped my exercise to start. But if this could also give me a boost on weight loss as well as help lower risk of reoccurence, it sounds like a win-win.  I have a physical with my primary care in a couple weeks, so I could talk to her about it.  Thanks for any explanations.  Sorry if I missed it earlier.

Kathy

laurajane

My onc wants me to start at 850mg of Metformin in the morning for the first 4 weeks and then double it to 850mg. added in the evening. I had a great time at my daughters and actually stayed the night. Tonight I am going to Indy with a group of friends and we are going to a fancy dancy restaurant called "Oceanaire: its a wonderful seafood restaurant, which is saying a lot for Indiana. LOL. i'm sure it doesn't touch the seafood you coasters get. Then we are going to Cirque du Soliel. I'm really looking forward to it  although I wish I was feeling better. My pain pills don't seem to be working that good today. There is a big part of me that wants to put on my pajamas and just cuddle up under blankets and stay at home. I hope you all have a wonderful evening. I'm thinking of you and it sure would be fun if we could all get together and go out laughing and having a good time wouldn't that be fun.

mccrimmon324

Laurajane, I hope you have a fabulous time tonight and your pain pills kick in for you.  I would love to get together, this is so sad, its been YEARS since I've had a girls night out! 

Babs37

Mccrimmon- Yes. I've been on the Metformin trial since last April. From the SE I had (have) from the start (GI problems), I know I'm getting the real stuff. So far so good...........

KSteve- They do this trial because it seems that diabetics on Metformin had less reoccurence and more complete response to chemo. From what I 've read on it, it seems that maybe cancer cell feed and thrive on sugar so "if" Metformin works on that, maybe it could help lowering reoccurences. I chose to be on the trial because like others have said, I didn't have anything to loose since after chemo, I didn't have tamox like ER+ that I could count on.

LJ- Have a great time tonight. It amazes me how much energy you have to go out like this. Hugs. 

KSteve

Babs37 - Thanks for the information.  So if it's related to diabetics, it won't be something I will be able to do.  And I supposed that is something I should be thankful for!  It will be interesting to see the results from the trial though.  Anything that can give TN's something that can be done.

laurajane - Have a great time at the Cirque show.  I have seen several different Cirque de Soliel shows in Vegas and have loved them all.  They have a special way to draw you in. I hope you can feel good and escape the real world, even if only for a couple hours.  However, I do understand what you mean about wanting to put on your pj's and relax at home.  There's something to be said for that too!  I hope the pain pills kick in and start helping you to enjoy your weekend.

 I hope everyone has a nice weekend!  TGIF

Kathy

LRM216

Not fair on the Metformin.  I have a fat ass, Heather, and I didn't get it!!!!

Babs37

KSteve- They are trying Metformin on non-diabetics for the trial to see if we will get the same results.If the results from the 5 years trial are conclusive, Metformin could become our "Tamoxifen". Let's pray it works!

mccrimmon324

Linda, apparently mines fatter.  LOL 

OBXK

Saw BS yesterday, he thinks my shoulder pain is arthritis. He gave me an order for bone scan, to ease my mind. Now I'm sitting here trying to decide if I can afford the scan. If I ease my mind from knowing I have bone mets, then I will worry about the money. I HATE the American health care system!

The scan is Monday. My doctors are in VA, 2 hours from home. I am staying with different friend's over the weekend - which is wonderful. I had my hair styled and eyebrows waxed this afternoon. Even bought a new lipstick that better suits my new silver hair. It's nice to feel like a pretty girl, in the big city!

Cocker_Spaniel

Feeling pretty low today.  I got a copy of my histology report and it reads Metastatic ductal carcinoma left breast with focal extracapsular spread to surrounding peridonal soft tissue.  Grade 3 inductal carcinoma.   Does the metastatic mean it has spread already or will spread. I know this cancer is bad but I thought I had a chance. If it means it has spread already what is the point of going through chemo only to feel worse earlier than expected. Why not take the chance and spend as much healthy time as I can with my family, whilst I feel well without the chemo making this worse and all the worry over the scans etc. 

My daughter sent away for  my grandmothers (My mums mum) death certificate as she does geniology.  It reads Carcinoma Left Breast.  Same as mine.  She died aged 83 yrs. My mum died at age 48 yrs of ovarian cancer.

My biggest fear is that I am handing my beautiful, lovely daughter of 39 years a death sentence.  This I couldn't live with. 

The diagnosis has really thrown me and I have never felt so depressed.  Cazn any of you guys  get my logical thoughts going again cause I am all out of them.      

OBXK - thank god for arthritis.  You don't need the lipstick I can already see you are pretty with your lovely silver hair.    

mags20487

cocker spaniel  --they called mine metastatic too because it was in the lymph nodes.   Maybe this is what they meant in your path report too. Have you had a pet scan yet?  That is how they determine if it is distant metastasis if it went to your bones, liver, lungs or brain.  Try not to panic too much yet about this until you can talk to your doctor.  They like to say metastatic if it has left the breast and spread to the auxilla (arm pit) but it is the distant metastasis we do not want.

Maggie