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Calling all TNs

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Comments

  • moth
    moth Member Posts: 3,293
    edited December 2018

    cccmc2 - thinking of you and your scan today. hugs.

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited December 2018

    good luck cccmc2!!

    A lumpectomy FYI for people deciding... I was very fortunate re my lumpectomy. Had surgery Friday, and only needed one pain pill Fri afternoon. Granted my tumor and lymph node were pretty close to one another and near to the surface of my skin, so they might have been not too complicated to remove. But I am surprised at how minor the pain has been.

  • cccmc2
    cccmc2 Member Posts: 102
    edited December 2018

    Winkingthe lump was fat necrosis! Yay!

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited December 2018

    whooooo! awesome

  • Vslush
    Vslush Member Posts: 117
    edited December 2018

    Great news, cccmc2!!! Everyone have a very Happy New Year, and may 2019 bring much happiness and good health to all!

    Vickki

  • vlh
    vlh Member Posts: 773
    edited December 2018

    Santabarbarian, Although much of the Nature.com article you shared is far above my understanding, I found one thing puzzling. Since you're more knowledgeable, I thought you might provide some input. The article speaks to a nine year median time to relapse in the group with high activity in six kinases. With TNBC, I thought relapse / metastasis typically occurred in the first five years and very rarely beyond 8 years?

    "whose tumors showed high activity of any of the 6 kinases versus patients whose tumors showed no such activity. The resulting variable (K-high) allowed stratification of the 113 patients into two groups; one containing 81 cases (71%, high activity of any of the 6 kinases) and one containing 32 cases (29%, low activity of any of the 6 kinases). The respective relapse rates were 47% and 6.5% after 12 + years follow-up, and the respective median times to relapse were 9 years and not reached (Log Rank P < 0.001; Fig. 4)."

    Lyn

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited December 2018

    I am a liberal arts major, as a disclaimer, but I think I might know why... Median time to relapse means the time at which HALF of the people have relapsed. So, hypothetically, if the study had 20 people with high kinase activity, and 9 people relapsed in 2 or 3 years, but the tenth person was an outlier, and relapsed after 9 years?-- the time by which half would have relapsed would be 9 years. (That's why the low relapse group is "not yet reached" since way fewer than half relapsed.) But it seems odd they did not discuss that if it were so.



  • urdrago71
    urdrago71 Member Posts: 500
    edited January 2019

    That amazingly good news, cccmc2! Happy New Year ...cyber hugs

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited January 2019

    cccm2 - TERRIFIC way to start the new year!!

    Lets keep the good news coming!!

    Hugs and BEST wishes for 2019 to all of my sweet friends here!!

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited January 2019

    Here's another article I found about sub-typing for those with an interest. Anyone who has had genetic testing of their cancer might find some matches in this article.

    https://www.sciencedirect.com/science/article/pii/S1526820918300934


  • vlh
    vlh Member Posts: 773
    edited January 2019

    Thanks for the response, Santabarbarian. I took Statistics way back in the early 1980's, but that relapse figure still seems off to me.

    Congratulations, ccccmc2! My reduction surgery resulted in quite a bit of scar tissue & necrosis. Although it can present challenges for our doctors in terms of physical examinations, the radiologist did a great job of mapping everything during an ultrasound so we have a baseline in case I notice any changes. I know you must be very relieved!

    Lyn


  • cccmc2
    cccmc2 Member Posts: 102
    edited January 2019

    thanks Ladies!! XO

  • JJ62
    JJ62 Member Posts: 36
    edited January 2019

    Hey Everyone, Just wanted to say hi and that I am 9 years out from my diagnostic mammogram and doing great! Best wishes.

    Jody

  • urdrago71
    urdrago71 Member Posts: 500
    edited January 2019

    JJ62, woohoo Congrats!!Thanks for good news, enjoy seeing inspiring facts for being NED..

  • aterry
    aterry Member Posts: 142
    edited January 2019

    Happy New Year. I haven't posted for quite awhile but I just received an update from a company doing clinical trial research for Triple Negative. I'm in the trial. There is a thread just for this trial but hardly any one posts there so I'm hoping this will get wider readership here. This is an update--not amazing results of anything wonderful like that--but interesting, none-the-less.

    Below are excerpts from a news release made by the company sponsoring the Tapimmune trial:

    "Marker Therapeutics also reported initial findings from its interim analysis of its dose-finding study (Study FRV-002) in patients with triple negative breast cancer, using TPIV200 as a maintenance therapy for patients in remission following first-line therapy. The four-arm study included low and high dose TPIV200 with or without cyclophosphamide.

    Of 27 patients evaluated to date for immunogenicity, 26 showed significant immune response to the vaccine treatment. Of 80 patients treated at 11 clinical sites, 11 have shown disease progression to date following treatment with TPIV200."

    Finally, our clinical sites have been very supportive of our Phase II vaccine studies in ovarian and breast cancer, and their rapid enrollment is a credit to our Principal Investigators and clinical investigative sites, as well as our clinical operations team. We are pleased with the progress in building our clinical development infrastructure and believe we can leverage that experience to drive our upcoming MultiTAA T cell studies efficiently."

    I wish all of you good results and happy times with friends and family during the new year.


  • Flynn
    Flynn Member Posts: 208
    edited January 2019

    Hello, TN friends! I’m running a little behind but I wanted to wish you all the best for the year ahead!

    Thanks to those who posted links and info. We took some time to visit family over the holidays but I’m back and planning to catch up on my reading soon. :)

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited January 2019

    I have very good news to report. My pathology was perfect on the lumpectomy i had last week. No live cells. pCR. I am ecstatic!

  • Parrynd1
    Parrynd1 Member Posts: 343
    edited January 2019

    Wooooooo! That’s awesome

  • HopeBry
    HopeBry Member Posts: 64
    edited January 2019

    I have a question ladies, have any of you quit midway of the heavy dose AC chemo and just started on the Taxol or Taxotere? I ask because I am little behind all of you and I want to know if any of you made this decision and are fine. I was fine after my 1st and 2nd dose but this 3rd dose of AC had me vomiting 3 to 4 times a day, cant keep food or liquid down, fatigue, light headed ness, anemia, feeling faint, shortness of breath while speaking. If I speak to someone too long I vomit. They have switched my nausea meds multiple times and still same issue. I had to return to hospital for an IV. I told them I refuse the 4th dose AC because I am miserable and feel like Im on my last leg. Its taken everything out of me. They are trying to talk me out of it saying but your a TN and you dont want it to return. I look at them and think no you dont want to lose the treatment funds. I have to make a final decision next week if I skip it and go straight to Taxol. Will it really make a difference? I am early stage 2A, no lymph, and was 2.1 cm but it has shrunk a little. I am eligible for nipple sparing Mastectomy. I dont plan to do a lumpectomy eventhough Im doing chemo 1st. I want to just get rid of the breast tissue and be done with it. The tumor is towards the back of my breast on side not near nipple. Just want to know your thoughts. I have read of one or two women that have skipped the 4th and they are fine so I dont know.

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited January 2019

    Thank you, Parrynd1 !!!

    HopeBry my MO explained it to me as the # of times they need to whack the cancer in a row. Every further treatment makes a small difference. if 2 was as good as 4 they'd give everyone 2.

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited January 2019

    Thank you, Parrynd1 !!!

    HopeBry my MO explained it to me as the # of times they need to whack the cancer in a row. Every further treatment makes a small difference. if 2 was as good as 4 they'd give everyone 2.

  • Vslush
    Vslush Member Posts: 117
    edited January 2019

    That's fantastic, Santabarbarian! Have a Happy, Happy New Year!!!

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited January 2019

    Thank you!!!

  • HopeBry
    HopeBry Member Posts: 64
    edited January 2019

    I hear ya

  • Flynn
    Flynn Member Posts: 208
    edited January 2019

    Congrats Santabarbarian! So happy for you!


    HopeBry, I’m sorry that you’re having such a rough go with AC! I’m not far enough out to tell you how ending chemo early can work out. I did have to end Taxol & carboplatin ahead of schedule b/c my MO pulled the plug due to side effects. I’m glad that my side effects have improved light years but I didn’t get pcr. I think I might have achieved pcr if I finished treatment as planned. It’s added a bit of stress, honestly. That’s just my experience tho and I wish you nothing but the best, however you proceed.

  • lookingforward66
    lookingforward66 Member Posts: 148
    edited January 2019

    HopeBry,

    I had 2 A/C & stopped all! I almost died. Allergy to chemo. I would have been a Chemo death. Yes there is such a thing. I had 1 node involved. I changed eating, exercising, my whole lifestyle basically. That was over 6 years ago. You have to do what is most comfortable for you to live with. Stay positive! That is a biggie I think.

    Much luck,

    Marsha

  • urdrago71
    urdrago71 Member Posts: 500
    edited January 2019

    CONGRATS, Santabarbarian

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited January 2019

    Thank you so much Flynn & Urdrago!

  • cccmc2
    cccmc2 Member Posts: 102
    edited January 2019

    congrats Santabarbarian!!!!!!!!