Where are the tri-negs!

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  • VickiG
    VickiG Member Posts: 536
    edited November 2008

    I had rads & chemo at the same time, but had to do wkly chemo since the full 3-wk dose would have been too hard to handle.  Fatigue is more severe than rads or chemo alone, but it's doable.  Definitely use the creme ~ I had horrible burning the 2nd time w/ rads, but it was worst the wk after I finished tx, so make sure to keep treating even after you've finished rads.

  • bourscheid
    bourscheid Member Posts: 718
    edited November 2008

    Thanks for the info.  It will be good to have friends going through the same thing.  Ebann...nice to see you here, too.  We can hold each other's hands!  My onc did not suggest rads yet as it is in the liver and so many nodes.  Maybe at a later date when I can get the lesions on the liver under control? 

    What about diet for us triple negs?  Nutritionist said stick to low fat for bests results.  That will be hard for me but I will do what it takes to fight this! 

    Lori

  • RNKaren
    RNKaren Member Posts: 58
    edited November 2008

    Hi everyone,

    I don't think I have posted here, just on the chemo and radiation threads.  I finished my last chemo 7/18, and radiation 9/29.  I had 6 treatments of Taxotere- the 6th one did me in.  I got very fatigued and ended up hospitalized with a DVT.  I'm feeling better physically except for  neuropathy, I'm taking Lyrica and just started B6 500 mg daily which seems like is helping more than the Lyrica.  I had very bad muscular upper back pain which is now getting tamed down.  I went to a chiropractor and it magically disappeared after 5 treatments!  My hair is growing back, but not enough to not wear my wig.

    I'm sad now because I just lost my brother, he was 57.  He died of a heart attack on Friday.  I'm going to the viewing tonight and the funeral tomorrow.  Please pray for me.

  • bourscheid
    bourscheid Member Posts: 718
    edited November 2008

    RNKaren:

     Oh, I am so sorry to hear about your brother.  He was so young...I lost my dad like that 20 years ago when he was 53.  It is so hard.  Prayers are with you!

    My onc also has me taking B6 to prevent the neuropathy and so far I haven't had any problems (I've had 4 tx of abraxane and 3 of avastin).  Glad to hear the hair is coming back!

  • Roya
    Roya Member Posts: 346
    edited November 2008

    RNkaren, I am so sorry to hear about your brother.  My thoughts and prayers are with you and your family. 

    Lori, My Dr also has me taking B6.  I asked him about it after reading aobut it on another thread.  It has definitly helped the neuropathy.  I also take an anti inflammatory.

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited November 2008

    RNKaren..so sorry you had to loss your brother.  Welcome to our group.  If you can try having massage done on your hands and feet.  This really helped my a lot. I'm on Lyrca too..doesn't help me much either.

    Girl's B6 in a shot or pill form?

    Flalady

  • bourscheid
    bourscheid Member Posts: 718
    edited November 2008

    Pill form (100mg per day)

  • maxgirl
    maxgirl Member Posts: 407
    edited November 2008

    Hi, ladies --

     I wish I'd known about the B6 when I was going through the worst of the neuropathy.  I did take L-glutamine and that helped a lot.  It's been over a year since I ended treatment, and I still have it in my toes and my fingertips -- heavy  paperwork days make my fingers zing.

    RNKaren -- I'm so sorry about the loss of your brother.  My sister died two years ago at 56, and she took a chunk of my life and history with her.  

    By the way, I was in Boonsboro this summer for a Nora Roberts signing -- she's your town royalty, isn't she?   I'm down the road a "bit", in Montgomery County.

  • VickiG
    VickiG Member Posts: 536
    edited November 2008

    I think I need to look into B6 for the neuropathy... I was hoping it would go away once I got off Ixempra/Xeloda, but evidently Navelbine causes it, too, sigh.  I wish I'd thought to talk to my onc about it yesteday when I met w/ her before chemo, drat!

  • bourscheid
    bourscheid Member Posts: 718
    edited November 2008

    Vicki - give her a call and ask about it!  That's what she gets the big bucks for!  Smile

    I go for #6 tomorrow and meet with the onc for the first time since I started treatments.  I'm a little nervous.  We're supposed to schedule scans to see if the Abraxane/Avastin combo is working.

    Lori

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited February 2009

    bump

    Some good notes from other TN Ladies

  • smithlme
    smithlme Member Posts: 1,322
    edited February 2009

    I'm coming up to my two year anniversary for cancer #1 and my one year anniversary for cancer #2. (March 28 & March 31) I see my Onc on March 9 for my check up and I am terrified. Nothing seems out of the ordinary, but what's ordinary any more???

    Linda

  • sftfemme65
    sftfemme65 Member Posts: 790
    edited February 2009

    Hi Linda,

    I see my doctor on the 9th also.  It will be my first 3 month check up since finishing treatment.  I also am very stressed about this.  Every ache and pain scares the heck out of me

    Good luck

    Teresa

  • lemonpie
    lemonpie Member Posts: 183
    edited February 2009

    I'm coming up on the 2nd annniversary of my 1st cancer (trip neg) and my 1st anniversary for my 2nd cancer (Not trip neg)......  I see my onc March 3 for my first 3 mo check up following treatment for the 2nd cancer......I'm petrified....

  • Raye99
    Raye99 Member Posts: 1,350
    edited February 2009

    Happy Anniversarys, Lemonpie and Linda!

    I know how you feel about your onc. appts. My 6-month check up is March 9 (A LOT of March 9 appts). My first check up with the onc. after I had finished treatment terrified me. So scary. I was crying in the parking deck, crying in the lobby - all this crying before I'd even seen the doctor. Now, it's not as bad. My two-year anniversary was in December.

    Ladies, best of luck with your appts.  

    Sending positive thoughts your way.

    Raye

  • Vickan
    Vickan Member Posts: 54
    edited February 2009

    Hi Ladies,

    I am also coming up for my second 3 month check-up in March 3rd (seems like a busy month) . Keeping my fingers crossed for me and everyone else.

    X

    Vickan 

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited February 2009

    So glad you are doing so well Vickan!

    I guess I should update here also.  Last year I had a recurrence of TN IBC that cover both chestwall with open wounds, bc under the muscle of my shoulder blade,nodes near live & lung. My PET scan two weeks ago shows only a small place of disease under my scar on the right side. I also have three tiny tumors in my skin.  I have one more month of chemo (Ixempra/Xeloda) and hope to take a couple of months off.  I may do Avastin/Xeloda on my break. That is ok with me cause I don't have a lot of SE with either of these tx.

    So glad other are updating this post.

    HELLO LADIES....we need so good triple negs new.

    Flalady

  • RNKaren
    RNKaren Member Posts: 58
    edited February 2009

    Update-

    Just had my yearly mammogram on Friday the 13th- but it was a GOOD LUCK day.  The results were only post- surgical changes.  What a relief!

    Still have aches and pains now and then.  The neuropathy is gone:)  I guess it will be a while before everything returns to normal- if it ever does.

  • Vickan
    Vickan Member Posts: 54
    edited February 2009

    Flalady you really are a fighter. Sorry to hear about your recurrence but glad to hear that you are managing it so well. Really great that the PET only showed small tiny places with the disease.

    As I have my Onc time in one month maybe I should mention about why I did not get Avastin/Xeloda....?

    I will update here more frequently now. Take care. 

  • jecooper
    jecooper Member Posts: 2
    edited February 2009

    I am a newbie to this site.  I was diagnosed on January 15th as having Tripe Negative Breast Cancer, Grade 3, Invasive.  My surgeon and oncologist suggested having a lumpectomy, (1.4 cm, left breast) followed by AC 4 treatments every other week and Taxol every week for 12 weeks, followed by 6 weeks of radiation. I had 14 lymph nodes removed, 13 showed negative and the centennial node showed 2mm positive. I will be added to a clinical trial of adding Avastin with the usual treatment above, every 21 days (Avastin), however I won't know until after the 7th treatment if the avastin was a placebo or not.

    I have been reading the comments on this site since I was diagnosed but this is the first time I actually posted mine.  My emotions have been up and down,crying, fear of the unknown, scared and wondering if my life will get back to normal. 

    My first chemo is this Thursday.  I am scared however I have read several of the comments above encouraging me....yet, I know when the day comes, I will be very nervous.

    During my surgery,(lumpectomy, partial mastecomy)) they did find 1 cm DCIS Ductal besides the 1.4 cm invasive tumor, however, we do have clear margins of 1cm.  I am hearing so many are electing mastectomies, therefore, I am wondering if I am doing the right thing.  My surgeon and oncologist states it is not medically necessary for a mastectomy since clear edges of 1cm were found and by following the treatment above researchers have found the lumpectomy(partial mastectomy) is the same as having a complete mastectomy of that breast.  Has anyone heard this?  Are there any individuals who chosen a lumpectomy over a mastectomy?

     I am glad to be added to this discussion and very grateful to those who take the time out to respond.   I am still feeling a sense of being isolated, wondering if it will return...How do you get passed this feeling?

     Your help will be greatly appreciated.  Thank You

  • RN2teach
    RN2teach Member Posts: 312
    edited March 2009

    jecooper: Just sent you a PM in case you aren't checking this thread that often. Hope your first chemo went okay. thinking of you... 

    lemonpie and Vickan: hope your check-ups tomorrow bring good news!

    Linda, Raye, and Teresa: ditto for your check-ups on the 9th. 

    RNKaren: good news on the mammo!

    Flalady: You're always an inspiration... you've battled this disease with such courage. Sounds like the chemo is kicking some TN butt and I'm thankful to read that.  

    I have been taking a break from the site, but just thinking tonight of how much BC.org means to me. I don't know how I would have survived the past year w/o the support I've received from my sisters on this site.

    My update: I finished chemo last spring and my rads the end of June last year. Have had a clear mammo in Nov. and last tumor markers (Jan 09) were good. 

    Take care, Paula 

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited March 2009

    RN2teach,

    So glad you stop my and let us know how you are doing. We really needed some good news for a change. So happy that everything is going so well for you.

    Flalady 

  • MicheleS
    MicheleS Member Posts: 937
    edited March 2009

    thanks for all of the positive stories! this TN diagnosis has me really freaked out... It is nice to see *good* outcomes.

  • Tonya36
    Tonya36 Member Posts: 66
    edited March 2009

    Hello everyone.  I am so glad to read such good posts.  Flalady you are an inspiration to me.  Your strength is amazing.  Thank you for being so active here.

    As you can see by my signature I was dx in June.  I had 4 EC tx's then 12 Taxol.  My last Taxol was Dec 16th.  I am still having alot of joint pain.  If I am up and moving I am fine but if I sit down for a length of time then my knees and back hurt.  My hands are the worst though.  If I am using them they are fine but when I turn over in bed I can't hardly bend them the pain is so bad.  I don't know what the problem is and the docs just keep saying its the chemo.  They did an arthritis panel on me to make sure chemo hadn't pushed me into early arthritic symptoms but it came back normal.  I hope it goes away within time.

    My main problem is the anxiety and emotions that I am feeling now that chemo is done.  Being TN is terrifying.  My onc said "go live your life".  I know that is what I should do and I am trying but I find myself scared and emotional alot of the time.  Its like I am waiting for the ball to drop.  I feel like I am living on borrowed time and I am scared.  God has blessed me so much through all of this.  My best friend has become my boyfriend and he is wonderful to me.  Chemo wasn't a walk in the park but it was doable and definitely could have been worse.  I was very blessed to not have all the side effects that others had.  I feel like God has blessed me so much that he is going to get tired of it soon and it will stop.  I know that Satan is really working on me.  You all seem so strong and it amazes me.  I know that I have to accept what God has in store for me but I am so scared.  Nights are the worst.  That is when the fear creeps in.  I have started taking ativan to sleep but it only allows me about 4 hours sometimes.  I know people say that it gets better and I hope it does. 

    I am sorry to lay all this on you all but I am hoping that someone might can give me some advice.  I am hoping I am not the only person that has ever felt this way.  Is it normal?  Cancer is horrifying and add triple negative to it and it just seems worse. 

    Thank you all for being so strong.  Thank you for posting.  I have learned so much from you.  I appreciate your time and efforts.

    God Bless you all,

    Tonya

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited March 2009

    Tonya,

    Thank you for your kind words.  I'm so glad you joined.  So glad God has blessed you with gentle treatment.  You may have to wait a few more months if things don't get better and approach your doctor again.  Than hopefully he will not use the chemo excuse again.  You need to watch for autoimmune diseases.  Your symptoms kind of sounds that way.  I have meet a couple of ladies who did have autoimmune issues after treatment. 

    The emotional side is normal after stopping treatment. We all start worrying and second guessing our treatment. Please find some really good reading material to help you focus on rebuilding your body from treatment. This makes you feel you are taking a active part in your cancer not returning. Also there are some really good spiritual books you can read about cancer and fear. I found anything on fear was good reading. If you like I do have a list of books you might like. You many want to ask your doctor for something to help you sleep.  I know that the nights are the worst. If things don't get better do ask for counseling or even a prescription for you depression. Please don't be embarrassed about this.  We all have been there at some point.

    Please find something you can do that give you great pleasure or even better some way to help other that will take your mind of your worries....at least for a little while.  Hang in there! With each day things will get better. Remember all the things that went through your mind when your heard your dx and over the first few months you thought oh! I don't want to miss out on this or that.  Girl this is your 2nd chance. Get out there and do these things.

    May God continue blessing you,

    Flalady

  • rumoret
    rumoret Member Posts: 685
    edited March 2009

    Tonya36,

    Just wanted to tell you that my mother is a 10 year triple negative survivor. She was dx at 69 years old.....first in her immediate family. I just wanted to let you know......hope it calms you just a little sweetie.

    Hugs,

    Terry 

  • carolynf
    carolynf Member Posts: 262
    edited March 2009

    I haven't posted here in a while but was reading something today that was interesting on tnbc.  I've copied it but have not heard anything else in regards to this.  this was in "Lifescript" for women reported by Rueters.  Has anyone else heard of this????

     Researchers have found a protein that helps breast cancer cells spread and found it in the urine of women with aggressive breast cancer -- offering a potentially painless way to warn a patient.

    The protein and the gene that controls it are called lipocalin 2, or Lcn2. The team at Children's Hospital Boston showed not only that it helps the tumors spread through the body, but can be detected in a simple urine test.

    "Lcn2 is among the genes most highly associated with estrogen receptor (ER)-negative breast tumors," Marsha Moses, Jiang Yang and colleagues at Children's wrote in Monday's issue of the Proceedings of the National Academy of Sciences.

    Estrogen-negative tumors are more difficult to treat because the widely used drug tamoxifen, and newer drugs called aromatase inhibitors, have little effect on them.

    Lcn2 was known to leak from breast tumors into the breast ducts. "We considered the possibility that Lcn2 might be detected in body fluids and might be associated with disease status," Moses and colleagues wrote.

    "We analyzed Lcn2 levels in urine samples from healthy women and women with metastatic breast cancer," they added.

    Women, whose cancer had been known to spread, or metastasize, had higher levels of the compound in their urine.

    "Our study identifies a novel, additional player in the complex development of invasive breast cancer," Moses said in a statement. Drugs that attack the protein may also help treat breast cancer, she said.

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited March 2009

    Thanks for the article. I had not seen this yet.

    Flalady

  • Tonya36
    Tonya36 Member Posts: 66
    edited March 2009

    Thank you Flalady and Terry.  I am thankful for your posts.  I should have also put in there that I was checked for auto immune diseases also but all my bloodwork came back negative.  I am just trying to give the pain some time and hoping it will go away.  Trying to focus on my mental status and lose the 15 pounds I put on during chemo. 

    I hope everyone is doing well.  God Bless!!!

    Tonya

  • rumoret
    rumoret Member Posts: 685
    edited March 2009

    I think I read somewhere that triple negatives are not all the same..other than the fact that they are triple negative to the er, pr, her2. So there are many unknowns.....that is why my mother is a 10 year survivor......the longer you are ned.....the better chances that you can survive this triple negative breast cancer.....at least that is our hope.

    My mom does not like to talk about her breast cancer........anything that has ever scared her during her life.......she avoided. It works for her......but she knows I am the researcher and will take care of her medical should she have a question that needs answering.

    When my mother was all done with chemo ( I attended each of her chemo sessions) I told her she needed to get back to really LIVING HER LIFE..........and do her best to not dwell on Cancer. Wow..........when I got breast cancer I realized how difficult that task could be.....but I am trying to follow my own instructions that I gave to her that day.

    Hugs to you sweetie,

    Terry 

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