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Hey calling all Node positve survivors

sftfemme65
sftfemme65 Member Posts: 74

Hi Everyone,

Well I finished the last of my clinical trial on Nov 10 and today is exactly one year ago that I recieved that "call"...."I'm sorry but its cancer". 

I'm feeling very emotional about the last year and what is to come.  I'm scared.  I am hoping to get some positive feedback from some of you long term survivors....so how about it?????

Thanks for always being there,you guys....it has definitely made a difference this last year.

Teresa

Comments

  • Boo46
    Boo46 Member Posts: 261
    edited November 2008

    Hi Teresa,

    I had 5 positive nodes. 1 with extracapsular extension. I am 2 1/2 years out and NED. I remember the end of treatment being a very frightening time. I felt so lost and like my saftey net was removed. It does get better, I promise!

    Many hugs to you,

    Sue

  • Msklapkin
    Msklapkin Member Posts: 1
    edited November 2008

    Hi Teresa,

    I had 1 positive SN and am 3 years post Diagnosis and NED.

    Every day gets better and moves me forward.

    What an amazing experience- at times it sucked and at times I wanted to stand up and cheer for ME!

    I have met many wonderful women on this site.  Good friends I never would have made if not for BC

    Congratulations on the one year mark!  That is wonderful- enjoy your life-do not waste any energy on what might be. Live, Laugh and love-you have so much to be proud of and thankful for!

    Susan

  • jdash
    jdash Member Posts: 54
    edited November 2008

    it is 2 1/2 yrs for me and i have met wonderful women as well  it was difficult right after i finished up everything  - it was just like my safety net was pulled from under me   i discussed it with my therapist and she said it is so common for bc survivors to feel like that   time has helped it has gotten easier but of course right before a checkup or tests that panic feeling returns   life is good though and i am happy again

  • sftfemme65
    sftfemme65 Member Posts: 74
    edited December 2008

    Thanks alot everyone.  I am grateful for all of you on this site. 

    Thanks again,

    Teresa

  • joannnc
    joannnc Member Posts: 60
    edited December 2008

    Hi Teresa -

    I had one positive node and am over 5 1/2 years past diagnosis. 

    I may have had more positive nodes but will never know as dose dense chemo was administered prior to surgery.  

    I also had a larger tumor and I was Grade III. 

     Good Luck, Hugs, JoAnn

  • sftfemme65
    sftfemme65 Member Posts: 74
    edited December 2008

    Oh thank you JoAnn....I know it seems strange to ask these things.  But I just get scared.  I had scans done last week and found out today that CT and bone scan was clear.  What a relief.

    Thank you again for giving me great hope. 

    One question, did you have radiation?  I didn't.  No one thought I should.  Just curious.

    Teresa

  • texgirl
    texgirl Member Posts: 17
    edited December 2008

    I am almost 4 yrs. out 22/22+ nodes one w/ ex. cap. extension .. almost 2cm itself. I am doing well and NED.....There is no way to understand this cancer stuff.. no rhyme nor reason  and I don't try but just live everyday !

    I wish you well...

  • FloridaLady
    FloridaLady Member Posts: 158
    edited December 2008

    Texgirl Amen!

    There is no rhyme or reason what happens to some of us.  But I love your story. 

    Flalady

  • StefS
    StefS Member Posts: 17
    edited December 2008

    Trip-neg here with all 21 nodes positive. Aug 13, 2003 was when I heard those infamous words "You have cancer."

    Finishing chemo, your anniversary, all bring up emotional crap.

    And I also agree, no rhyme no reason. 

  • carmelle
    carmelle Member Posts: 133
    edited December 2008

    I was 5 nodes positive...they were large, almost 4 cm. That was almost 6 years ago...NED so far and loving life.

    Michelle

  • sftfemme65
    sftfemme65 Member Posts: 74
    edited December 2008

    Thanks again everyone....StefS what can I say but wow!!! Being triple neg is kind of scarey because unlike those that finish treatment but still get a little pill to take, we are just kind of dropped off the edge.  Very Scarey.  Today is my 1 year anniversary.  It feels great, I can wait to have my 10th and 20th.

    Teresa

  • CedarBarb
    CedarBarb Member Posts: 1
    edited December 2008

    Hi Teresa,

    I just had my one year anniversary too.  It is scary being left "hung out to dry" as I told my doctor here at home. I was surprised to see how many of you on this forum were dx as Grade 2.  I always thought Tn's were usually Grade 3?  It is encouraging to see TN's here that are NED still after several years. 

    Two questions:  How old are you all?

                            What recommendations for follow-up?

    Things seem to be different here in Canada.  Just curious to know.

  • sftfemme65
    sftfemme65 Member Posts: 74
    edited December 2008

    Hi Barb,

    I just turned 43 last month.  I know what you mean about stage 3, it seems alot more common in TN than stage 2.  I will continue to see my doctor every 3 months for 3 years then every 6 months for 2 years, then yearly.  He doesn't do any scans unless I have a concern or if my labs are off.  I did just have a ct of neck and chest, and a full body bone scan.  Both were clear.  I also did a clinical trial during treatment with Avastin, which is why my treatments just ended Nov 10.  Its been a long year.

    Teresa

  • FloridaLady
    FloridaLady Member Posts: 158
    edited December 2008

    The whole Grade things is about all of us triple negatives ladies do not have the same disease.  Triple negs only mean we are negative of known receptors.  I really feel in the future we will be broken into other receptors.  This genetic group we are all put into really gives more worry to some.... I don't think should have this extra weight on them.  If they could just get us broken down a little more...

    Flalady

  • She
    She Member Posts: 131
    edited December 2008

    Hi Teresa,

     12 1/2 years ago (at 42) I had multiple micromets to nodes; was told I'd be very lucky to survive for 10 years.  I'm also almost 8 years past a second (at 46) primary (ER/PR+).  I no longer go to a cancer clinic, no onc, only a PCP.  I have annual bloodwork and mammo's.  I follow the "2 week rule" for any cancer related concerns.  It is very frightening the first few months after treatment is finished, it does feel like the first line of defense is gone.  It takes time to adjust, but the fear does subside, except for around annual testing time.  After going through the trauma of BC I think it is perfectly normal to have a little anxiety around test time. 

    CedarBarb, if you have any questions on making the Canadian system work for you, send me a PM, I'm more of a lurker than a poster.  But even after all this time, I think it is important to make sure those in active treatment know there are some long term tri-neg survivors out here.

    All the best to you, BluIze

  • brst26
    brst26 Member Posts: 2
    edited December 2008

    Teresa,

    What clinical trial where you a part of?  I ask because I too was on a clinical trial with Avastin (B-40 Trial).  I too struggle with the fear of "what if" at times.  I was triple negative and had one positive lymph node (1/8) that they knew of (I had chemo prior to surgery)...which still showed traces of micromets upon removal after chemo.  I'll have my 1st MRI in January...I can definitely say that I'm a little nervous to go.  Hope you have a wonderful holiday season this year.  I know that I will treasure not being sicker than a dog for Christmas this year!  I had my last chemo on December 20th last year.

    -Abbey

  • floodclan
    floodclan Member Posts: 1
    edited January 2009

    I just celebrated my 3-year anniversary two months ago, and I feel great!  Trust me - even though you may not see them, there are a lot of TN survivors out there!!!

  • sftfemme65
    sftfemme65 Member Posts: 74
    edited January 2009

    Yea!!!!!!!!! I just love seeing success stories! 

    Abbey,

    I was on clinical trial 5103.  It was a blind trial with 3 arms.  1st arm recieved a placebo, 2nd and 3rd arm recieved Avastin.  At the end of treatment 3rd arm went on to recieve 10 more treatments of Avastin alone.  I was in the 3rd arm.  I recieved DD A/C x4 biweekly and 12 weekly taxols.  Avastin kicked my sinus's butt and I still am having alot...and I mean alot of issues even though I have been finished for 2 months.  But I still think it was worth it.

    Teresa

  • tibet
    tibet Member Posts: 29
    edited January 2009

    teresa

    In your trial, did you have 12 weeky taxol and avastin together?

    I am having th 12 weekly taxol and carboplantin together. They are well tolerated so far.

  • sftfemme65
    sftfemme65 Member Posts: 74
    edited January 2009

    Hi.  the way the trial went was I had  DD A/C with Avastin every 2 weeks x4, then 12 weekly taxols with avastin added in every 3 weeks, then I went on and did another 10 avastins alone, every three weeks.  It took 11 months to complete treatment.

    Teresa

  • Rainenz
    Rainenz Member Posts: 21
    edited January 2009

    I'm Triple Neg and had 6/14 nodes positive and have just got to celebrated 12 yrs since it was removed from my left breast.  I am also 2 1/2 years out from a 2nd primary dx in the right breast and had 29 positve nodes this time, so far NED.

  • sftfemme65
    sftfemme65 Member Posts: 74
    edited January 2009

    Wow that is so great Rainenz!!!!  You keep kicking that cancers butt!

    Teresa

  • brst26
    brst26 Member Posts: 2
    edited January 2009

    Teresa,

    Sounds like our trials were a lot alike in the Avastin part.  My trial was not blind, but rather randomized patients into one of six arms.  I got the arm that had me do the traditional TAC-Taxotere for 4 cycles, then AC for 4 cycles, with Gemzar added in along with Taxotere...and Avastin for my first 6 cycles of chemo (then they took me off for the last 2 cycles so I wouldn't have any healing issues when I had surgery at the completion of chemo).  I then did 10 additional doses of Avastin once I recovered from surgery.  What kinds of issues have you had from Avastin?  I ask because I too have had major issues with blood pressure.  I was good up until my 7th dose post-surgery.  I ended up having symptomatic high blood pressure (terrible headaches which sent me to the ER)...which took forever for all my drs to get under control with meds.  I was on really high doses for medication to normalize my blood pressure.  My bp issues persisted long after the Avastin "should have been out of my system"...which sent me to a cardiologist.  Long story short...my heart is great (good news)...but they still can't explain my high bp and symtoms for as long as I've had them.  My bp is finally normalizing...and I am now only on a low dose of a beta blocker to try to lower my heart rate (around Thanksgiving time I started having all these weird symptoms like chest pain, palpatations, extremely elevated heart rate).  By the way, I finished my last dose of Avastin on Sept. 18th, 2008.  Curious to hear what you have experienced.  Take care!

  • sftfemme65
    sftfemme65 Member Posts: 74
    edited January 2009

    Hi there!  Well I didn't have any issues with my BP at all.  But what this stuff did to my sinus's should be illegal! lol.  I have horrible sinus pain, infections, pressure in my ears, Im dizzy alot.  I had enough so I went to an ENT to see what can be done.  He decided it was time to go in and have a look around.  Im a bit nervous about that but I cant keep doing this.  I am having my other breast removed March 30 and reconstruction started, I really want to get this sinus thing under control.  My last Avastin was Nov 10, 2008

    Teresa

  • FloridaLady
    FloridaLady Member Posts: 158
    edited January 2009

    I had all the symptoms without Avastin this round. I was using Ixempra. I think any of the chemo can cause high BP in some patients.  I have taken Avastin two different times.  The first time I did have higher blood pressure.  But they were not sure if it was the Gemzar or Carbo I was taking with it.  Second time I took Avastin, I had no symptoms.  I getting ready to start back on it for the third time.  I found it is one of the few chemo's they will give you more than once.  My doctor is using as a maintance drug while I take a break from chemo.  Research shows if you take Avastin by it's self and than later add the chemo back in...you get a better response with your chemo???

    Flalady

  • ARJal
    ARJal Member Posts: 18
    edited February 2022

    This is an old thread that I’m bumping to find more node positive survivors.

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited February 2022

    I had 3-4 nodes positive at diagnosis. One was 3 cm (!!) and full of cancer, so it was hard to tell... Got PCR. 3.5 years out with no problems! Silver lining of TNBC for those lucky to get a good response to chemo is it actually is LESS likely to recur over time.