Calling all TNs

Edi - I also had my surgery Septemer 25, 2012 and I had a lumpectomy! Looks like you and I had our treatments around the same time. I know what you mean about the depression that occurs when reading about triple negative. I try not to think about it for that very reason.

Naan - thoughts and prayers are with you - I totally get what you are saying ...hugs!!!

Titan, 

Great idea!  I feel the same way about not being on topic…. 

Myself:  age 49, diagnosed 7/23/13, bilateral mastectomy 8/7 w/sentinal node dissection both sides.  Had lumpectomy on left breast 20 years ago – ended up being benign (no surprise as there is no breast cancer in my family – recent diagnosis shocked me, to say the least!).  Pathology following BMX shows cancer has spread to lymph node on right side and verified original pathology of TNBC.  Treatment – still waiting.  Have Oncology appt on 9/16 but my surgeon told me he met with Oncology regarding my case and I can expect, at a minimum, 4 months chemo.  Already preparing for chemo by cutting my hair short (just 3 days ago) and my husband, bless him, shaved his head yesterday to show Bald is Beautiful!  I’ve no clue what type of chemo I will receive but worry about infection during as I work with the public and germs are all around!  I suffer from psoriasis and Purell type products are murder on my hands – they get so dry they start to crack and bleed and always get infected – so it’s going to be a challenge! 

Hope to see others join in.  Never knew there was anything called TNBC so all the info I can get thru these discussion boards are a great help. 

Lisa

Oh Naan, I read your post and can totally feel your emotion.  Brought tears to my eyes, what you are thinking and going through.  I know you'll be here always for your babies!

Gwenie, I understand your Onc's wording about statistically the same percentage as she is.  When I was genetically tested and went back in for the results, the Genetic Counselor told me I did not have the BRCA mutation, and the expanded test (the BART rearrangement test) came out normal, she said I was "back in the general population, with the same statistics as everyone else."  It reminded me of when I had the MRI report on non-affected breast and it said "unremarkable".  I've never been so happy to not be unique, i.e.:  general population / unremarkable.  I use those terms proudly now.  )

Ooo Gwenie its time for a check up if you are having dizziness and a black out.  Go ask for a scan and if they say not needed DEMAND it. 

I just read of Lori Redmer's passing. Link below. Former executive director of the Triple Nehative Breast Cancer Foundation.



Sorry, everyone. Thank you, Lori, for all you did for us.



I went to a 3/3/13 event in Fairfax, VA soon after surgery. It helped a lot.



http://forum.tnbcfoundation.org/lori-jasperse-redmer_topic11441.html?FID=1&PR=3

I bought my own PET scan. I knew something was wrong with my liver. Everyone who thought I DIDN't need a scan, was very surprised by the findings. I now tell them, you might be an expert in cancer, but I am the expert when it comes to me.

Thank u so much for always being there for me, u are truly my sisters! I only have 2 older brothers, so I feel very blessed to have all of you as my sisters!

Cocker, I have heard about liver spots - someone at the gym told me.  She mentioned we all get liver spots, but she mentioned it in relation to the liver not working well - saying that we should cleanse or something.  She was really into nutrition and holistic stuff.  But just now on Mayo it says "age spots are sometimes called liver spots" and are only harmful when accompanied with certain symptoms.  Here is the link.  http://www.mayoclinic.com/health/age-spots/DS00912

On Wikipedia it says the name liver spots got its name because they were once incorrectly believed to be caused by the liver, but they are physiologically unrelated to the liver.  http://en.wikipedia.org/wiki/Liver_spot

Hey Gang,
 I been trying to post for a few days now but with all the sadness I just can't seem to make myself read all the post so I won't leave anyone out.  I try to be here to offer support but find myself failing with that because of my own insecurities.  Every time I get my fears put aside for a bit, I will come read and someone has passed away or got mets and it sets me back.  I fell so sorry for the ones dealing with it and selfishly worry about myself when reading it.   Reading of the people who have fought it for several years but still lost the battle makes me think WHY THE HELL BOTHER, WE CAN NOT WIN!!!  Then there is part of me that says we are not statistics and doctors are not God and he will call us when our time is done regardless of what causes it but I think knowing what it might be is worse. I have until the 11th and then my radiation will be done.  I started boost Friday.  My underarm is burnt with blisters and nothing we have tried has worked on it.  It started out as a yeast infection the first week of treatment.  The doctor ask me if I was diabetic because that is usually who she sees in it, so I was told to ask my primary to run the AC1 or A1C some kind of test that test for the past three months.   The results are in but I have to wait until tomorrow to get them because we were just 5 minutes late getting the message.  Here is a big dilema that I have.   I know I have to eat better and get exercise and I CAN NOT make myself do either.   I am so upset with myself because good help is the only hope we have and I can not make myself give up the wrong foods, or get up off of my butt.   I just don't know what to do anymore.   Then I get on here and I read and I think does it really matter.   How do you all get throught the sadness?    I do think that the reason we lose our battle is the lack of scanning but we can't be scanned to much either.....and like they told me, we can scan today and nothing be there and then tomorrow it would have all showed up.   IT SUCKS!!!   There is no right or wrong answer.  I just know it is all scary and there is still nothing you read good about TNBC.  I have never had a brain scan and it worries me a bit too.   My bloodwork was great and if it was not for my BS still following me, we would not have caught it before it spread.  

I am sorry to all the new members for having to be here.......

I am sorry to all the ones with mets........

I am sorry I can not be here to support you all like I would like to be. 

Forgot to add that I am going to lose possibly 3 fingernails.......:( 

Stupidboob, I had he same issue duing radiation with sore cracks in the pits and blistering. My radiation onc prescribed me a special burn antibiotic called, "SSD, 1% Silver Sulfadiazine Cream,"  it worked wonders.  Ask your radiation onc, right away to prescribe it for you.  It should help.  I know exactly how u feel.  I had to walk around with my right arm in the air cause it was so sore!  Sorry that you have to suffer so badly, this is why you have to post questions.  There are a lot of experienced cancer fighters here who can help, like myself.  This is my second run, so any other questions or concerns, don't hesitate to ask here or u ca PM me too.  I'll do my best to answer the ASAP.   Just to warn you though, my memory is not as good as it used to be, so if there is something I can't answer right away, I'll ask around and find out for you, so don't worry, ask away.  Like people say, there is no studpid questions!

Stupidboob, don't be too sad, I know that just the fact that we have cancer is overwhelming, but there are people like me.  I had breast cancer dx 10/2011 Stage 2 triple negative, went through the whole chemo, surgery, radiation, then I got mets now am Stage 4.  I'm not worried, I have all of you to support and pray for me.  I have an awesome new medical team.  I have friends and family all over the world thinking and praying for me, how awesome is that!  I don't even know half these people, but they are willing to just take time out of their busy schedule and pray for little old me.  I believe in God having miraculous healing powers and I believe in my motiviation to live no matter what!  I have 2 little girls and a husband who doesn't cook, I'm not leaving my husband to make cereal for my girls for the rest of their childhood, please!  I will make it, you will make it, we will all make it, cause we are strong, we are women, God put us on this earth to procreate.  I always tell my friends, if my husband was to have a baby, after the first day of morning sickness, he would be in tears begging the Dr to just end it all!  Men are such big babies.  I had 2 c-sections, and had my tubes tied, my husband was such a woose, he woulldn't even get a simple vasectomy!  He was like, you are having surgery anyway, so you do it, what a woose!

Hang in there baby!  If I can think positively in my current situation, u can too.  I had 2 wks of brain radiation so far and have 2 wks left before a repeat brain MRI, have been praying and seems to be working that all my brain tumors disappear magically and the onc would say, you sure u had tumors, cause I can't see a single one left!  I had this huge lump on the back of my head, and I can literally feel it melting away, God is Good!  That would be awesome!  I also started chemo last Thurs, the first of 3, then I get one week of (for good behavior ;P), then another cycle of 3 wks and one week off.  My new onc considered that since I was having radiation on top of chemo to lower the dose making it so much more mangeable.  Plus, by now I'm a pro when it comes to preventing SE's, been there done that.  I know what to watch out for, what to do, not to do, so this time's chemo is a breeze for me, I think I might Ace this one! 

Made it 3 years and still fighting ladies!!! Everyday is a different struggle, but the fear doesn't consume me as much as it did at first. The family and me celebrated at the beach. I am so thankful for everything that I use to take for grant.

Naan, no worries. Sending well wishes your way. As maggie said, YOU WILL BEAT THIS!!

Julie thank you so much for the info.  I have written it down and will ask the doctor tomorrow.   You have a GREAT attitude and I will be looking back at it when needed.   I would not be as strong as you in that situation.    

Maggie that is what I keep telling myself that women who exercise daily and keep a healthy weight are fighting the same thing as I am.   I have some heart issues and this time chemo messed with it bad and I guess that is another thing that has me thinking overboard.  You are right though I just need to go easy on myself until treatment is over.     Thank you

I feel guilty all the time that I'm not eating right and exercising, I keep telling myself that once the chemo is done I'll jump on the healthly lifestyle wagon - but in fact I am a relaxer at heart and I like to eat and bake for my family, my head's so screwed up I think if I don't jump on the healthy wagon and the cancer comes back that it would be my fault for not trying.  I'm still pretty ignorant when it comes to understanding my diagnosis, I guess i've been trying to focus on getting the cancer out and chemo rather than what the hell caused it!

Ladies... just checking in.  I am also 3 years out as of yesterday!  Doing very well.. still nervous when I go in for check ups, but that'll probably never change. Celebrating in Mackinac Island (pretty cold here actually).