Where are the tri-negs!

Thank you : )  After the UTI all I can say is drink Plenty!  I didn't have a lot of trouble the first time around, but I have been told it gets worse with each TX.  Are you also on an every 2 week schedule or are yours spaced further apart?  I was amazed to see how similar our diagnosis was.  The only difference is the node - but, all they took from me were my sentinel & axilla.

I am feeling 100% back to normal today and I am 10 days into it now - I have felt normal for 2 days now.  Even got out to see the Dark Knight yesterday : )

Good luck with your 1st treatment, let me know how you do - I think days 3-5 were my worst and I had felt really tired and shooting pains in my body.

Th Dark Knight was pretty good - I'm not really a huge fan of those types of movies, but this one was one of the betters.  I always liked Heath Ledger, so that is the only reason I agreed to go with my hubby, lol.

I still have my hair (what I didn't get cut off already).  I kind of enjoy the ease of caring for short hair - I blow dry it up-side down and leave it : )  When it was long it took forever to dry...

I am noticing a few pieces coming out if I run my fingers through it though,  I am kind of prepared to lose it - I bought some hats and 2 cheap wigs.  I only actually like 1 of the wigs I got - and it just doesn't look natural. 

Sherry

Ellie,

Thanks for the tip! I am a little concerned about my port arm, its still purple and a little sore. I'll call my onc tomorrow and request the meds.

Jeris

Hi All,

I had a left lumpectomy 6/20/08 and was 5 nodes neg, clean margins, grade 3 stage 2 triple neg. My port will be placed 8/5 & I will begin A/C 8/8.

Thanks to this site, I am learning what to expect.  My onc also explained things well but I was too overwhelmed to hear much of what she said. Last night I shared as much as I could with my kids, ages 4, 14, & 17 regarding hair loss, weight,  and other things to expect.

I am going shopping this weekend......going to buy some fun wigs in different colors.  I sure dread losing my hair......

Hello Sisters!

I'm fairly new to the site and wanted to share.  I was diagnosed with Stage IV, triple negtive in Sept. 07. Was approved for a study, took Taxol, Gemzar & Avastin for 7 months.  Side effects were difficult at times, ended up hospitalized with acute kidney failure and hypertension.  I have since begun taking Xeloda which seems a little more friendly. I asked the doctor last week if I would be on chemo the rest of my life.  He said yes.  Alrighty then.  There are no plans for surgery or radiation.  Right now, I FEEL GREAT.  My hair is growing back (was I THAT gray?) and I'm perfectly happy with it.  I feel like a new person and I really BELIEVE that it was all of the support I received from everyone.  I have wonderful friends and people I just happen to talk to through work will ask if they can pray with me.  YES YES YES.  I don't attend church, but I listen to Joel Osteen every Sunday and have grown much closer to God through his testimonies. One night I wondered how I was going to die and I had a vision.  I knew then that I would not be going alone.  HE was going to be at my side the entire journey.  I am happy for each day, for the beautiful clouds in the sky and for everyone I meet.   We are responsible for our own happiness.  We don't know when we will "go" or how we will go.  I'm not sweating it. I'm ready when He is and am thankful for everything in my life.  I have had some very difficult side effects that really got me down.  I would complain and then be thankful that I could overcome it. We all have bumpy roads to different extremes.  To those of you who are troubled and scared, please know that your "sisters" are supporting you 110%.  You are not alone and we will hold you up!  Blessings to all of you.

Hi Everyone,

I'm new here and think my case is a bit unusual.........at least I haven't found any others on this site with a diagnosis like mine and have googled endlessly, but still can't find much information. 

In 2000 I was diagnosed with IDC (found with routine mammo), 8mm, 0/14 nodes, ER/PR+, HER2- and was treated with lumpectomy, radiation and 5 years on Tamoxifen.   

In April, again by routine mammo, a suspicious something was found and was followed by lumpectomy.  This was a  9mm recurrent BC tumor, (same location as original) but had managed to somehow escape the previous treatment and mutate (or adapt to previous treatment) and is now ER/PR- which makes me a TN. 

I've since had bilateral masts with NED in any of the removed tissus.  Also had CT and PET scans which are NED as well.  (Well, CT showed 2 nodes near my esophagus that were a little enlarged, but Pulmonary doctor said this was likely due to very bad upper respiratory infection that I'd had previously and that he didn't feel biopsy was needed - just to watch them).

Oncologist had recommeded 4 cycles TC even before my masts and I will see her for another visit next week.  Not sure if her recommendation will change any.  I still haven't decided on chemo - whether to or not to and am still gathering information.  I'm soon to be 60 years and according to Adjuvant Online there was only a 6% increase in being cancer free in 10 years after chemo, which doesn't seem like much to me, especially with all the SE's that come with chemo.   I understand that if there are mets, chemo would be necessary, but now?

Just got the word no receptors or her2 from the path.  When on this site  I figure out I am triple negative called my surgeon and he said yes you are.( already sch for part mastectomy and node bx) Having surgery on the 12th dianogsed on the 1st.

What can you all tell me about this beast! 

I've asked this on a different place on the board, but I am going to do so here too since all of you ladies are tri neg - like me. 

I get the idea that they do chemo on all tri-negs.  I am also doing chemo I'm almost 5 days out of my 2nd tx. 

What I am wondering is why do I we have to do radiation after we do chemo.  Is there any reason to believe that the chemo couldn't take care of the job?  Also, if I did forgo radiation am I right in believeing the only place I would get the recurrence would be the same breast as before?  Because really, if that's the case I would just rather keep a close eye on that breast and have a mastectomy (as I wanted to in the first place - shame on me for letting the doc talk me out of it) if it comes back.  I had clear - but close margins and 0 nodes.

Too much time to 2nd guess everything....but I am soo fearful of the implications of having chemo and radiation.  What are these things going to cause me in the future?

Flalady, I have a question about your last post.   In 2000, I had lumpectomy, radiation and 5 years tamoxifen for 8mm ER/PR+, HER2- tumor.  Recently I had a local recurrence (same spot), 9mm ER/PR-, HER2-, bilateral masts, currently NED.  Are you saying that because I had radiation in 2000, the recurrence I just had wouldn't have been able to spread from the breast due to damaged tissue? 

Thanks Flalady for your explanation and answer to my question.  I did have bilateral masts 7/21 for this local recurrence and am now trying to decide on chemo - whether to or not to.  Right now, just 3 weeks out from the surgery, I know I am not strong enough physically or emotionally to go through chemo.  Oncologist has recommended 4 cycles of TC, but having chemo only improves my being free of cancer in 10 years by 6%.  And so I make myself crazy trying to decide!  I have a real problem having chemo for micromets or small cells of cancer that MIGHT be there and am trying to learn what would be the differece in waiting.  I mean, if I waited and if mets showed up 3 months or 3 years down the road, I know I'd have to go through chemo then.  If I had chemo now being NED and mets showed up in the future, would the chemo have to be something different and/or stronger?  Decisions................decisions.................

Yes, Flalady, I totally agree and feel so thankful to have found this early again.  Thanks so much for your help trying to sort this all out!

I saw my oncologist again today, and still haven't made up my mind.  She says the chemo, if given, would have to start withing 3 months of my masts.  Also I have a CT of the thorax that will need to be repeated in September because the CT in June showed 2 slightly enlarded nodes.  Pulmonary doctor said biopsy wasn't necessary at the time, not thinking this too abnormal and to just watch them, hence the repeat CT in Sept.  So, between now and then I think I'll check into a 2nd opinion on the pathology of the tumor and possibly 2nd optinion oncologist also. 

If I was younger or if there was a larger decrease in the recurrence risk after having chemo, I'd definitely go for it.   And I couldn't agree with you more, Roya that chances and risk are not really statistically guaranteed.  8 years ago, I believe I was given a 93% chance/risk of cancer not returning/recurring and here I am in the 7% that did.  The recurrence, I found out today was the same exact spot, not just the same area.  So it survived after lumpectomy with very good clear margins, radiation and 5 years Tamoxifen.  Not only did it survive, but it learned to adapt (change hormone status) and find a way to continue.  

Hi Fellow Triple Negs!

I am scheduled for bilateral mastectomies on August 28th.  Not sure what after that as I have not met with an oncologist but Chemo is a safe bet.  Because I am getting bilat mastec does that mean radiation is not necessary?  Radiation would only be warranted if I were doing a lumpectomy - right?  Had the genetic test done last week but will be shocked if I am not BRCA1 positive.  Also - how soon after bilat mastec does the chemo usually start?  Thanks for your wisdom!

~BcbGone {{Linda}}