New here~ Does anyone have triple negative breast cancer?

2

Comments

  • MAJW
    MAJW Member Posts: 2,510 Member
    #22
    Tulsa03 said:

    I'm TNBC too
    I had er/pr+ bc in 2003. Had mastectomy then chemo. In 2011, I found enlarged lymph nodes. That was triple negative bc on opposite side from 1st cancer. I have mets to my bones and am stage IV. I had radiation for the mets and chemo for the rest. I was in remission for 2 months then it came back. Thank goodness I was put in the hospital with pneumonia or it may have been a long time before we discovered the cancer had returned. I'm starting treatment of chemo again this week. Hope to kick it's **** this time.

    Karen

    Kick it hard!!!!!!
    Kick it hard Karen!!! I like your attitude...I, too, am triple neg..posted above..

    Will keep you in my thoughts and prayers....

    Kick it hard...
    Hugs, Nancy
  • Kylez
    Kylez Member Posts: 3,761 Member
    #23
    Frankie Shannon said:

    Welcome to this site i
    Welcome to this site i didn't have localized recurrence but i just wanted to say hi.Frankie

    Welcome to this supportive
    Welcome to this supportive site Karen!
  • Amy-LLL
    Amy-LLL Member Posts: 16
    #24
    TNBC here. It is scary.
    TNBC here. It is scary. Did you have bilateral mastectomy originally? I was dx Oct 2011 have had bilateral mastectomy and am on 2nd round of 6 rounds of T-C chemo. Stage 1 invasive Secretory 1.3cm grade 3, and I am BRCA2+. Recurrence lives int he back of my head every day right now, but I am a fighter.... How did they/you discover the recurrence? Did you have implants? Praying things work out!
  • jnl
    jnl Member Posts: 3,869 Member
    #25
    GrammyKaren said:

    thank you all very much
    I have been down, as I have RA too and finshed 33 rads and exhaustion set in catching buses, subways and jitneys (whew) running back and forth to NYC and I'm a little out it. Lots of information on the internet ~ maybe too much.
    One thing that is causing me worry is that I have stopped taking vitamins and boy I miss them. The Stress B's with b6 b12 and all and zinc and copper and c. It affected me and I'm going into chemo and wanting to have the full effect of the treaments but its hard! Sounds silly, I know. BTW I am BRCA neg and Im being tested for the androgen receptor. It may decide how I am treated.
    Anyone have any knowledge of this? Its getting more scarier as days go by. Im 61 and have little ones that I am very attached too. Aw getting sad.

    Thank you all and God Bless You
    Karen

    I was told by my rads
    I was told by my rads oncologist to not take vitamins during rads. And yes, rads will exhaust you. So, still get lots of sleep, take naps if you can and still be gentle with your skin as you are still "cooking".

    Good luck to you,


    Leeza
  • GrammyKaren
    GrammyKaren Member Posts: 96
    #26
    Amy-LLL said:

    TNBC here. It is scary.
    TNBC here. It is scary. Did you have bilateral mastectomy originally? I was dx Oct 2011 have had bilateral mastectomy and am on 2nd round of 6 rounds of T-C chemo. Stage 1 invasive Secretory 1.3cm grade 3, and I am BRCA2+. Recurrence lives int he back of my head every day right now, but I am a fighter.... How did they/you discover the recurrence? Did you have implants? Praying things work out!

    I got results of pet ct scans
    Some good and some bad. The tumors on the left that were radiated have shrunk. A node on right side of the hylum or notch of my lung light up and a spot on the right breast side very tiny showed.
    Dr Traina is very positive and I will have to biopsy the node on lung. I have battled bronchial infection over 4 weeks now. 2 different antibiotics . So that may be what this is. Thank goodness they are very proactive and will jump on this and treat with common chemo cmf if not new mets or xeloda or clinical trials for tessetaxel for mets.??(sp)

    Hope everyone had a super holiday....

    Newbie,
    karen
  • MAJW
    MAJW Member Posts: 2,510 Member
    #27
    GrammyKaren said:

    I got results of pet ct scans
    Some good and some bad. The tumors on the left that were radiated have shrunk. A node on right side of the hylum or notch of my lung light up and a spot on the right breast side very tiny showed.
    Dr Traina is very positive and I will have to biopsy the node on lung. I have battled bronchial infection over 4 weeks now. 2 different antibiotics . So that may be what this is. Thank goodness they are very proactive and will jump on this and treat with common chemo cmf if not new mets or xeloda or clinical trials for tessetaxel for mets.??(sp)

    Hope everyone had a super holiday....

    Newbie,
    karen

    TESETAXEL...clinical trial...
    See my posts from above first....so this will make sense...I was in the clinical trial for TESETAXEL in late June and July...it's an oral chemo...the first cycle I did okay on it...took the second cycle 3 weeks later with an upped dosage, by one capsule....it put me down for 10 days....and did nothing according to the scans that were taken 6 weeks later...it's a VERY rigid clinical trial....17 pages of info to read and sign....my cancer center had three of us on this....none remained on it after the second dose...and there is test after test to go through to even qualify..it is in conjunction with Sloan Kettering in New York....I am now on the oral chemo drug Xeloda and have been since stopping the TESETAXEL...

    If you would like any other info on Tesetaxel I'll be happy to answer your questions according to my experience ....we're all different...what didn't work
    For me may for someone else and vice versa...

    I wish you the best...
    Hugs, Nancy
  • GrammyKaren
    GrammyKaren Member Posts: 96
    #28
    MAJW said:

    TESETAXEL...clinical trial...
    See my posts from above first....so this will make sense...I was in the clinical trial for TESETAXEL in late June and July...it's an oral chemo...the first cycle I did okay on it...took the second cycle 3 weeks later with an upped dosage, by one capsule....it put me down for 10 days....and did nothing according to the scans that were taken 6 weeks later...it's a VERY rigid clinical trial....17 pages of info to read and sign....my cancer center had three of us on this....none remained on it after the second dose...and there is test after test to go through to even qualify..it is in conjunction with Sloan Kettering in New York....I am now on the oral chemo drug Xeloda and have been since stopping the TESETAXEL...

    If you would like any other info on Tesetaxel I'll be happy to answer your questions according to my experience ....we're all different...what didn't work
    For me may for someone else and vice versa...

    I wish you the best...
    Hugs, Nancy

    Thanks Nancy
    The onc proposed this to me only if cancer has mets to right side....she explained that they were having excellent results with this. Its still in phase 2 tho.. Swallowing hard and praying . Hope the freakin nodule is infection but who knows. I will read over the packet that I received, detailed like the Avastin trial I entered into in 2009. By the last component of that treatment/chemo it was Taxol for 12 weeks and every third infusion I was to get avastin too./ got thru it with the DD A/C ok. Taxol was tough on my lungs...10 infusions was all then icu 10 days, couldn't breathe well. then no more taxol or chemo . so i hope i healed enuff.
    thanks Nancy
    Hugs to you,
    Karen
  • GrammyKaren
    GrammyKaren Member Posts: 96
    #29
    GrammyKaren said:

    Thanks Nancy
    The onc proposed this to me only if cancer has mets to right side....she explained that they were having excellent results with this. Its still in phase 2 tho.. Swallowing hard and praying . Hope the freakin nodule is infection but who knows. I will read over the packet that I received, detailed like the Avastin trial I entered into in 2009. By the last component of that treatment/chemo it was Taxol for 12 weeks and every third infusion I was to get avastin too./ got thru it with the DD A/C ok. Taxol was tough on my lungs...10 infusions was all then icu 10 days, couldn't breathe well. then no more taxol or chemo . so i hope i healed enuff.
    thanks Nancy
    Hugs to you,
    Karen

    Nancy a question
    I have been looking up this drug, and saw it was fast tracked by the FDA. I get worried when I see that. Also its in the cytotoxicity family of taxanes. I am really worried.

    I have the biopsy coming up next week on a lung node....please pray its not cancer.
    I need prayers now.

    Thanks,
    Newbie Karen
  • MAJW
    MAJW Member Posts: 2,510 Member
    #30
    GrammyKaren said:

    Nancy a question
    I have been looking up this drug, and saw it was fast tracked by the FDA. I get worried when I see that. Also its in the cytotoxicity family of taxanes. I am really worried.

    I have the biopsy coming up next week on a lung node....please pray its not cancer.
    I need prayers now.

    Thanks,
    Newbie Karen

    Karen....
    My prayers are with you.....I, too, was told it was producing " good results. " ....but it isn't only being used for breast cancer...so I wonder if the results showing good results are for other types of cancer....probably a good question to ask your oncologist! And, yes, it is a member of the taxane family....

    Please Karen, keep us posted....if you need an "ear" I'll private message my phone number to you...
    Prayers and best wishes...
    Hugs, Nancy
  • GrammyKaren
    GrammyKaren Member Posts: 96
    #31
    MAJW said:

    Karen....
    My prayers are with you.....I, too, was told it was producing " good results. " ....but it isn't only being used for breast cancer...so I wonder if the results showing good results are for other types of cancer....probably a good question to ask your oncologist! And, yes, it is a member of the taxane family....

    Please Karen, keep us posted....if you need an "ear" I'll private message my phone number to you...
    Prayers and best wishes...
    Hugs, Nancy

    thanks Nancy
    How do you pm me? I can't figure out the boards yet......i know im loop
  • WJGardner_Dec2009
    WJGardner_Dec2009 Member Posts: 50
    #32
    Waiting on results
    I am not triple negative either but I am waiting on results to see if there is a reoccurrence. Had biopsy two weeks ago and still waiting on results. my thoughts and prayer share with you.

    Keep the faith,
    Wanda
  • GrammyKaren
    GrammyKaren Member Posts: 96
    #33
    WJGardner_Dec2009 said:

    Waiting on results
    I am not triple negative either but I am waiting on results to see if there is a reoccurrence. Had biopsy two weeks ago and still waiting on results. my thoughts and prayer share with you.

    Keep the faith,
    Wanda

    Wanda
    My prayers for you to have a good outcome.

    Sending you healing vibes.
    LOve,
    Karen
  • MAJW
    MAJW Member Posts: 2,510 Member
    #34
    GrammyKaren said:

    Wanda
    My prayers for you to have a good outcome.

    Sending you healing vibes.
    LOve,
    Karen

    Two weeks?
    You're still siting after two weeks?????? You need to call your oncologist TODAY! No excuse to be waiting this long...things can fall in between the cracks...call today!

    Keep us posted...webcast
    Hugs,Nancy
  • MAJW
    MAJW Member Posts: 2,510 Member
    #35
    GrammyKaren said:

    Wanda
    My prayers for you to have a good outcome.

    Sending you healing vibes.
    LOve,
    Karen

    Two weeks?
    You're still siting after two weeks?????? You need to call your oncologist TODAY! No excuse to be waiting this long...things can fall in between the cracks...call today!

    Keep us posted...we care
    Hugs,Nancy
  • GrammyKaren
    GrammyKaren Member Posts: 96
    #36
    MAJW said:

    Two weeks?
    You're still siting after two weeks?????? You need to call your oncologist TODAY! No excuse to be waiting this long...things can fall in between the cracks...call today!

    Keep us posted...we care
    Hugs,Nancy

    two weeks is a lifetime
    Thats unacceptable.

    I am having a biopsy in a few days and the onc will have the results within 2 days of the procedure.


    PLease pm me Nancy.....thanks

    Karen
  • Megan M
    Megan M Member Posts: 3,000
    #37
    WJGardner_Dec2009 said:

    Waiting on results
    I am not triple negative either but I am waiting on results to see if there is a reoccurrence. Had biopsy two weeks ago and still waiting on results. my thoughts and prayer share with you.

    Keep the faith,
    Wanda

    You shouldn't be waiting for
    You shouldn't be waiting for 2 weeks Wanda for your results. I've never heard of that before. Please call your oncologist and demand to know your results. He has to have them. And, let us know.


    Hugs, Megan
  • DebbyB
    DebbyB Member Posts: 86
    #38
    another triple negative
    9 months ago, I was diagnosed with stage 2B, grade 3, triple negative and no lymph node involvement. The tumor was 8cm, so I feel very blessed I had no lymph node involvement and the surgeon was able to get clear margins. I had chemo, 4 A/C, than 4 taxol and 33 radiation treatments.
    Now, I had a colonoscopy and endoscopy last Wednesday and waiting for biopsy results from my esophagus. Guess heartburn isn't always from bad eating habits. :( I am fairly new to this whole process, too. One thing I now understand that I didn't last week is that triple negative and recurrence doesn't mean recurrence of breast cancer. Its like finding Waldo.
  • GrammyKaren
    GrammyKaren Member Posts: 96
    #39
    DebbyB said:

    another triple negative
    9 months ago, I was diagnosed with stage 2B, grade 3, triple negative and no lymph node involvement. The tumor was 8cm, so I feel very blessed I had no lymph node involvement and the surgeon was able to get clear margins. I had chemo, 4 A/C, than 4 taxol and 33 radiation treatments.
    Now, I had a colonoscopy and endoscopy last Wednesday and waiting for biopsy results from my esophagus. Guess heartburn isn't always from bad eating habits. :( I am fairly new to this whole process, too. One thing I now understand that I didn't last week is that triple negative and recurrence doesn't mean recurrence of breast cancer. Its like finding Waldo.

    Debby
    Did I read that your tumor was 8 cm? I am here as a 7 cm triple neg. Had surgery first a lumpectomy, clear margins and axillary disection . Sentinel node was positive out of 6 that were removed. I was on ac/t and I entered and phase III avastin study.
    Toxicity in my lungs made me drop out at the very end almost. Had 2 more taxols w/ avastin to go.
    I had a recurrence in clavicular node and internal mammary. Fin 33 rads now. pt scans show node in lung 1 cm.

    Triple neg is crazy, if you need more info there is a tnbcfoundation.org site that has tons of info.

    I want to ask you , have you always had the burning sensation in the esophagus? Good luck with your testing.

    Newbie to this site,
    Hugs,karen
  • DebbyB
    DebbyB Member Posts: 86
    #40
    GrammyKaren said:

    Debby
    Did I read that your tumor was 8 cm? I am here as a 7 cm triple neg. Had surgery first a lumpectomy, clear margins and axillary disection . Sentinel node was positive out of 6 that were removed. I was on ac/t and I entered and phase III avastin study.
    Toxicity in my lungs made me drop out at the very end almost. Had 2 more taxols w/ avastin to go.
    I had a recurrence in clavicular node and internal mammary. Fin 33 rads now. pt scans show node in lung 1 cm.

    Triple neg is crazy, if you need more info there is a tnbcfoundation.org site that has tons of info.

    I want to ask you , have you always had the burning sensation in the esophagus? Good luck with your testing.

    Newbie to this site,
    Hugs,karen

    Karen...
    Yes, it was 8cm. I know really, how could have I missed it for so long. Baffles me. Surgery was a lumpectomy for me, too. The taxol is the only part of chemo and radiation that put me down for a few days at a time. I lost nails and the neuropathy is still bothering me and the Dr said that can take up to a year to heal or might not ever. Water aerobics seem to be the most help for it.

    I saw the link for the site yesterday and checked it out. :) Thank you, it's very helpful.

    I started getting heartburn in my 20s. I always got the same answer from Drs, (elevate the head of the bed, no dairy or fatty foods, etc) Today is 7th of 7 to 10 days for the results and left a message with the Dr's office. I do know I don't have ulcers and I have Barrett's esophagus, so far.

    Hugs back to you Karen. :)
  • AngieD
    AngieD Member Posts: 493
    #41
    DebbyB said:

    Karen...
    Yes, it was 8cm. I know really, how could have I missed it for so long. Baffles me. Surgery was a lumpectomy for me, too. The taxol is the only part of chemo and radiation that put me down for a few days at a time. I lost nails and the neuropathy is still bothering me and the Dr said that can take up to a year to heal or might not ever. Water aerobics seem to be the most help for it.

    I saw the link for the site yesterday and checked it out. :) Thank you, it's very helpful.

    I started getting heartburn in my 20s. I always got the same answer from Drs, (elevate the head of the bed, no dairy or fatty foods, etc) Today is 7th of 7 to 10 days for the results and left a message with the Dr's office. I do know I don't have ulcers and I have Barrett's esophagus, so far.

    Hugs back to you Karen. :)

    On Dec 27 I had a biopsy
    On Dec 27 I had a biopsy after a routine mammogram. I am triple negative with a KI67 Proliferation Index of 75% (high) T:2 N:0 M:0 CT scans, Bone Scan, and Breast MRI OK.
    Started yesterday 1/10 on chemo. The plan is A/C every other week over 8 weeks. Then Taxol every week for 12 weeks, 3 weeks rest, surgery, radiation for 6 weeks. Sounds like a long road, but hopefully a successful one. Did any of you have the genetic BRACA test done?
    Angie

Discussion Boards