ALL MY TRIPLE NEG SISTERS!

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  • tammyintexas
    tammyintexas Member Posts: 13
    edited October 2008

    i just wanted to say hello ladies and ask if anyone is having agressive treatment like me,  i have dose dense chemo every other week, act for for treatments followed by takatore????sp  i have had 2 treatments so far, and its been rough, but my cancer markers are going down.  when I am finished with chemo I will have 33 rad tx.  just curious about my course of treatment.

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

    tammyintexas,

    Your treatment is a little heavy but this could be because of your Stage and Grade.  I am a little surprised they will do a follow up with Taxotere after ACT.  I take it you have not had surgery yet.  Will you to Taxotere after having surgery?  or all one big continual line?  I think I would ask this question if you don't know.  Because with surgery they can see if you responded well to ACT before the next group of chemo.  Some of us do ACT surgery and than Rads.  They than re-scan us and and we take a little break before jumping into the next chemo.  We do very a little in treatment.  And now days they are being more aggressive with triple neg treatment.  Other will follow with there input.  I just met a girl today in chemo who is TN and node positive she will be doing four Adraim. and than Taxotere And Cytoxan for so many weeks Than surgery and rads.

    Best Wishes for little side effects and this kicks cancers butt.

    Flalady

  • KPolasek
    KPolasek Member Posts: 184
    edited October 2008

    Hi Majjors/Traci!

    I missed your posting.  I believe that each day is a gift and tomorrow will be what it will be.  And, I do my best to smile and spread joy and not doom and gloom.

    I was officially diagnosed on 10/07

    I am finished with treatment -- lumpectomy, 11/01/07, chemo - Taxotere/Cytoxan 4 rounds every 21 days beginning 12/26/07 (Merry Christmas :o), then 33 radiation treatments - finished those 5/9/08. 

    I cannot say that I am not concerned about my chances of re-occurence but I don't allow myself to worry.  This is October """""BREAST CANCER"""""" month so it is difficult to not let my thoughts drift to negativity.

    In addition, my breast hurts everyday - some days worse than others.  And,  I have a mass growing around the incision area that they cannot say with certainty if it is a malignancy or just scar tissue.  I have had an ultrasound, mammorgram and am scheduled for an MRI next Wednesday.  My doctor also says there is a seroma present that she will try to treat after we find out if I have a malignancy or not.  I really think that this is where most of my pain is coming from.

    In spite of these things, I love life, I love my family, I love my work and I am happy to be alive.  I am a Hospice Chaplain.  Everyday I visit people who have 6 months or less to live.  Most of them teach me how to live today better.  I am blessed. 

    Kay

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    Newalex,

    Sorry, I had never asked what kind of chemo I had, but I always asked for copies of all my test results and treatment records.  I had 8 times chemo and 6 weeks of radiation treatments. If you like to find out what kind of chemo I had, I will be glad to show you the doctor's "hand writing" record.   

    Optimistic -- This is the most I remind myself, especially during the difficult time.  I knew the basic treatment purposes, steps and the side effects.  But I didn't ask more detail.  I was in the 75% survival rate category, in the first 5-years.  What would I do if I was serious on that figure?  I tried to tell myself I was "normal".  As long as I could get up and drive,  I still went to work, took a short-trip or had fun activities between treatments, of course, with my wig on and hidding the 2-feet injection tube well. I need encourage, not pity. 

    I was tired, weak and lose appetite then.  I found several Chinese herbs helped me a lot.  I purposely skipped the herb once between two treatments, and the test result shown the big difference.  Over these years, I keep taking it as tea.  Beside that, I didn't stop eat any kind of food I took before, just less meat and more vegetable.  I didn't take any supplements such as vitamin or calcium.   If my body needs, I prefer take these ingredients from nature grow stuff such as fresh fruit and vegetable, instead of processing foods.  About every six months, I do a master clean,  to "washing out" my body toxin.  All the breast cancer issues, very very little memtion about Triple Negative because there is no effective medicine. It seems, we are being ignored.  That tells me, the best for TN to fight the cancer, is ourselves, is to improve our immune system.  

  • jdash
    jdash Member Posts: 754
    edited October 2008

    tammy  i had exactly the same treatment and its been 2 1/2 yrs NED for me  those drugs really do work  i had my chemo first and then my dbl mast and lymph nodes removed  and total response to chemo  there was no cancer to be found in all  the tissue removed

    hang in there and stay positive  you will be fine   xoxox

    julia

  • tibet
    tibet Member Posts: 545
    edited October 2008

    Dandilionou

    what kind of chinese herb did you take? You take them as tea? Is that just tea?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    newalex

       Hope I can translate these Chinese herbs well: ( 北芪,党参,红枣,枸杞子,桂圆) Radix Codonopsitis, Astragali, Red Date, Medlar, Dried Longan.  You can make it as easy as making tea.  Little from each item, put in a small thermos (about 20 oz), fill up with boiling water, let it stay at lease an hour. One bottle a day or every other day.  It tastes a little sweet.  Chinese supermarket or herbal store should have them.  In Los Angeles area, $20 of above items, can last a month.  They are all nature grow stuff and no harm. 

    Within couple days after the chemo, drink lots of fruit juice and vegetable soup, to clean out the body toxin.  After couple days, drink the herbal tea, to help circular and restore energy. 

  • tibet
    tibet Member Posts: 545
    edited October 2008

    dandelionou

    Did you drink them during chemo or after chemo? Do they interfer with chemo affects?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    Newalex,

    I began to drink the tea 2 days after each chemo treatment.  Don't drink during menstruation, the amount might increase.  According to Chinese herb doctor, these herbs do not interfere with chemo affects.  We all know, chemo kill both "good cells" and "bad cells".  It can cause the white blood cells drop so low, that's why we feel weak and get sick easily.  During the chemo periods, with the herb tea, my WBC maintained at 4.5 to 6.  Without the herb tea, the WBC was 2.2. If the WBC was below 2, the chemo might be delay and another medicine might need before next chemo. 

    I was overweight, had had fatty liver years before diagnosed the breast cancer.  Also, gallstone was found but I refused to remove the gallbladder.  After completed all the chemo and radiation treatments, I tried Lemonade Diet.  Surprised me, not only lose weight, but also, I couldn't believe the ultrasound technician asked, "Are you sure you have fatty liver and gallstone before?  for how long?  What have you done?  Your liver and gallbladder are very clear now."  I wanted to kiss the technician then. 

  • kelty
    kelty Member Posts: 80
    edited January 2009

    Thank God for your posting.  After hearing the words "triple negative" from my oncologist, I researched online and what I saw was just so depressing.  So I came back to the forum once again for strength and this post is just what I need before the surgery tomorrow.

    Dandelion,

    Can you give me some my details on the Lemonade  Diet? My dad has fatty liver and gallstone. I worried about his health all the time especially since my mom passed away 2.5 years ago due to breast cancer. Now I'm going through the same Journey and he must be under a lot of stresses too.

  • Youwearpink
    Youwearpink Member Posts: 87
    edited January 2009

    Hello TRI NEG SISTERS,

     I just spent the past hour and a half reading all the stories and comments. I was diagnosed June 23rd 2002, 10 days after the birth of my daughter. I am a 6 1/2 year survivor. My tumor was 1.7  and I had one positive node. To this day I don't know what stage I was/am/was? I was toooo scared. I didn't even know what a Tri Neg was till years later(Thank goodness I did not get the horror stroy some of you guys explained when you were told) . My Dr. knew I was so scared and that I didn' want to know any more than I needed to know. I use to sit in the office when waiting for test results with my head between my legs in crash position Laughing!  lol

     Ladies, in time your fear will fade! Just reading through the stories about survival rates etc on TRI Negs made me so happy! All the newbee's I remember the fear I felt my first year. Stay strong and keep your head up! I promise it gets better! Thank you Gina!   I am almost to 7 years. Your story is a great reinforcement! I am doing well and so are so many other TRI Negs! . We are tough "bi..otches" and we will kick this diseases ass!!!!! 

    (((((((((xoxoxoxoxoxoxoxoxoxoxooxTRI NEGSxoxoxoxoxoxoxoxoxoxo)))))))))

  • kelty
    kelty Member Posts: 80
    edited January 2009

    Youwearpink,

    My son was 100 days when I was DXed (01/06/09) and my daughter is almost 3 yrs old. Thank you for your inspiring story! I have to be strong and fight my life for them!

  • starzhere
    starzhere Member Posts: 162
    edited January 2009

    I have been NED for 19 years.  I was diagnosed at age 38 and had a mastectomy on Halloween.  I was stage I (1 cm IDC).  At the time I was told that I had an 80% chance of making it to the 5 year mark.  At this time standard procedure would have been the mastectomy and nothing else.  However, I was treated at UCLA and they were participating in the landmark study that was in it's 7th year that was showing that early stage ER/PR- cancers benefit from preventative chemo to close the 20% gap. 

    I had chemo for 6 months with Cytoxin and two other drugs (CMF).  There was no standard schedule of chemo treatment between doctors, at that time. My particular doctor was the only one I knew that administered the chemo every week for the first month and then every other week for the next five months.  Other women, I knew, got their chemo every three weeks for the whole time, so I actually had more.  I hope that I have been able to help some of you feel more hopeful.

    Wishing All of You the Best,

    ~elaine~

  • jdash
    jdash Member Posts: 754
    edited January 2009

    elaine  that was the most uplifting email we could have read

    i was dx with trip neg bc stage 1- 12 yrs ago at 39

     then 10 yrs later..... redx with stage 3  trip neg  same breast  you have no idea how happy i am to read your post being NED for 19 yrs  that is awesome   xoxoxoxox

    j

  • jesrv
    jesrv Member Posts: 52
    edited January 2009

    I'm just made my 6 year mark this passed November!!!

     So happy to hear the successful stories!!

  • tibet
    tibet Member Posts: 545
    edited January 2009

    hi Jdash

    You were first time 12 years ago TN and was the second time a recurrence or new primary in the same breast? I read once after 8 yrs there is no more TN recurrences. Maybe I am wrong. Had you had mastectomy the first time, would that have eliminated the possibility of have second time in the same breast?

    Thanks and hugs.

  • Vondie
    Vondie Member Posts: 33
    edited February 2009

    It is an inspiration reading these posts and seeing triple negative sisters who are 10yrs, 12 yrs. 19 yrs NED. I have just completed my treatments of DD AC x4 and rads x 15. Now it is just healthy eating and exercising and praying to God to keep me so that in 20 years I will be able to post NED.

    Keep the faith sisters will be beat the odds.

    Love and Hugs to all you sisters

  • angelsabove
    angelsabove Member Posts: 363
    edited February 2010

    This is some positive stuff......NEED TO GET THIS BUMPED.....HERE GOES SISTERS.....

  • Titan
    Titan Member Posts: 2,956
    edited February 2010

    Let's keep this positive thread going..I'm one year out..well almost....I feel awesome..but sometimes I[m afraid to say that I feel awesome..but I do...sometimes I'm afraid the other shoe will fall..but if it does..well whatever.....I think this is for TN's and everyone..we still all have/had cancer....whatever the label.

    someone posted on another thread about how fast triple neg. grows..well yes..but however, chemo works the best on fast growing...I don't know...I guess I refuse to freak out about the TN diagnosis....there really are worse things that things...I think that most of us have a chance to be really old bitchy ladies...at least I hope so..

    Hugs to you all

  • carolinachick
    carolinachick Member Posts: 387
    edited February 2010

    Thanks for bumping this up.  I needed this today - I'm one year out, but haven't been feeling well (probably the flu or some such thing) and my mind automatically goes to thoughts of recurrence or spread.  My plan is to be around annoying my family for a very long time!

  • Luv2sing
    Luv2sing Member Posts: 145
    edited October 2010

    carolinachick, I know how you feel.  November will be my one year since receiving my NED and I'm not feeling too well right now.  So of course I'm dreading going to the doctor, but I'll see her on Monday and no matter what ... everything's going to be alright. Kiss

    Take care!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2010

    I received my NED status at the end of this past September - so I've only 59 months to go to the magic 5-year mark! Wink  I'm looking forward to it.

     Take care, all.

  • laurajane
    laurajane Member Posts: 321
    edited November 2010

    Just saw your post hope to get caught up on the posts tomorrow. Man, I sure needed this right now. Thank-you.

  • laurajane
    laurajane Member Posts: 321
    edited November 2010

    Has anyone on here ever had little response to chemos ac and taxol? I had little to no response from either. I am hoping to get on a clinical trial with carboplatin and the new parp inhibitor.

  • gracie1955
    gracie1955 Member Posts: 31
    edited November 2010

    LaughingWhat a great thread! So glad I found this!! I was so encouraged by the truly positive comments here. I was diagnosed with triple neg metaplastic (double whammy) in the spring and for the longest while opted for au natural until I was given all the facts about this type of cancer. I've now had 5 chemo treatments every 2 weeks with 3 more to go and then radiation. I've had few side effects, hike up the mountain for 1 1/2 hours every day and after treatment no 4 did a bikeathon fundraiser and rode 50 km. I'm slowing down a bit with Taxol but have kept walking and after day 5 bounced back. I'm hoping and praying the last 3 treatments are as smooth. I'm grateful for the minimal SE and hope to keep hiking as I really find it not only gives me energy but keeps the nausea away not to mention weight gain. Thrilled to read of the 5, 7, 10, 19 year winners in this thread. Thank you for keeping us newbies posted and giving us such tremendous hope! So encouraging!! 

  • Luv2sing
    Luv2sing Member Posts: 145
    edited November 2010

    I came back to remind myself of how blessed I am and get a little boost of encouragement. Cool

    Have a good one!!

  • HollyHopes
    HollyHopes Member Posts: 497
    edited November 2010

    hi Dandelion...what is the lemonade diet?  i, too, have fatty liver....

  • Tabatha00
    Tabatha00 Member Posts: 133
    edited December 2010

    I LOVE LOVE LOVE reading threads like these!!!!!   AWESOME LADIES!!!!!   I was dx May 2009 and had 4 AC (dose dense) and 12 Abraxane.  I then had bilateral mastectomies (no cancer found in the breast or lymph nodes) BUT I had the lump removed at a local hospital and then decided to go to a cancer center for treatment.  They did a biopsy of 1 lymph node and it had microscopic cells in it and I had positive margins because the first doc thought HE was going to be doing the mastectomies.  Ummmmmmm no.  Like I said, after surgery I had no cancer in the breast or the 4 lymph nodes they removed.  I have no idea what stage I was.   All I know is I have mostly "good" "great" days but there are days that are crappy. 

    I was diagnosed, I did everything the Dr's told me to do and I pray I never have to do this again.  End of story!  lol

    Tabatha

  • mish1015
    mish1015 Member Posts: 5
    edited December 2010

    Hi Everyone,

    I am new on here and was hoping for some help.

    I am 38 diagosed on 11/3/10 with TN IDC. I had a partial mast on the right side...the tumor was 2.5 cm, all nodes and margins clean. the DR. told me it is stage II grade 0 . I just had a pet scan which came back clean. I am now recovering from the surgery, which they also did a bilaterial breast reduction , since so much margin tissue was removed. I need to make a descision on treatments now. The side affects of Chemo scare me more then the Cancer. Has anyone done just RAD treatrment after surgery and NOT chemo? Please give me some advise ...as I am scared.    

  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited December 2010
    I am a three year survivor of IBC ~ TripleNeg!  Not every day is a good day but I thank God that I am still here!!! Thanks for the reminder Cool NJ

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