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Calling all TNs

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Comments

  • vl22
    vl22 Member Posts: 471
    edited March 2018

    Batesburg - I just started running again after a long hiatus due to this cancer crap! It just really takes me to a better place - running has always done that for me. I think all this endorphins really do lift the spirits

    Great for you to be doing such a race! Having a goal really helps to keep on track with exercise. I’m glad it’s making you feel good 🤗..

  • AgathaNYC
    AgathaNYC Member Posts: 317
    edited March 2018

    Hello, TN friends. I hope all are well.

    I wanted to share my good news with you all. I've had my lumpectomy after neo-adjuvant chemo and got a pCR. Even thought I'd been given the news from my surgeon, the hospital just posted my post-surgical report this morning. It felt so great to see it in black and white. I feel like I can finally allow myself to believe it.

    I see my RO in a few days to set out my radiation plan. MO had been thinking I'd go on Xeloda after radiation but not sure if she'll still want to now.

    Good luck to anyone having tests, scans or procedures this week. Hoping for best results possible.


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

    Squeaaaal! Wow, Agatha, love such good news. It really helps to know that the chemo works!

  • vl22
    vl22 Member Posts: 471
    edited March 2018

    Agatha - so happy for you! You must be so relieved - finally you can cry tears of joy

  • rdeesides
    rdeesides Member Posts: 233
    edited March 2018

    Agatha, this is great news! I am so happy for you!

    I am supposed to be getting my Foundation One test back today. I am very eager to see if it gives me any clues about my cancer. I have set up a 2nd opinion with a Dr. that is supposedly very knowledgeable about TNBC. I am hoping to get more chemo (my current MO won't give me Xeloda), or at least SOMETHING to keep this cancer at bay. I'm halfway through radiation and everything is going fine with that. My RO is awesome. Very knowledgeable and kind.

    Will keep you posted if I hear anything interesting about Foundation One. I am hoping it gives me some insight to if a Keytruda trial will work for me.

    R

  • helenlouise
    helenlouise Member Posts: 363
    edited March 2018

    Congratulations Agatha, it's is good to hear great news!

    Good luck for your foundation one results R!

    Best wishes to all.

  • vlh
    vlh Member Posts: 773
    edited March 2018

    Wahooooo, Agathe!!!

    R., let us know if the Foundation test shows anything promising.

    Lyn

  • Batesburg
    Batesburg Member Posts: 114
    edited March 2018

    R, what is Foundation One?? yay, Agatha!!!!

  • Batesburg
    Batesburg Member Posts: 114
    edited March 2018

    way to go, VL, on the running. Good stuff!!!

  • rdeesides
    rdeesides Member Posts: 233
    edited March 2018

    Batesburg,

    It is genomic testing that they do off the pathology sample of your tumor. I am hoping to get some clues as to what clinical trials may be a good match for me since I had no response to chemo.

    BTW, has anyone else on this thread not had any response to chemo? I think I saw one person when I was reading back from the beginning, but this thread is soooo long that I stopped trying to read through it all.

    Rebekah

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited March 2018

    Hi All!

    Wonderful to read your happy posts! Thanks for sharing!

    (I want to be more diligent about exercising now!! ;)

    Hugs from stormy NYC!

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943
    edited March 2018

    Hello Rebekah,

    I am just popping in to say how impressed I was to read that you had started reading the posts from Calling all TNs from the beginning. That is quite an undertaking, but well worth it if you can persevere and do so many pages as you have the time.

    There will be a lot of information on this thread going back to 2010 when Titan started it.

    I posted on the thread and I was inspired by Titan to start the thread Calling all triple negative breast cancer patients in the UK, because I thought we were in the dark ages here. it has turned out to be a thread for everyone from many countries, including the US.

    I have a man posting on my thread who read from the beginning of that one before posting and I thought that was an achievement.

    I noticed what you said about no response to chemotherapy. This does happen but you are not expected to get a complete response. I had a large tumour that did shrink a bit, but certainly not completely. I had this before surgery and then a mastectomy followed by radiotherapy and I had no evidence of disease (NED). That was back in 2005/6 when I was going through treatment. I have been fine since.

    Wishing you all the very best.

    Sylvia

  • kayak2
    kayak2 Member Posts: 9,028
    edited March 2018

    Hi All,

    For anyone who may be interested, Living Beyond Breast Cancer (LBBC) is doing a Twitter chat TONIGHT from 8 to 9 PM eastern time called: TNBC - Managing the Impact. The chat will focus on three main impacts: chemobrain, neuropathy and fear of recurrence. If interested in participating, you can google LBBC to see the announcement for this discussion, and follow the instructions and/OR you can google Twitter and set up a login name and password, then at the top of the page enter LBBCChat in the Search box.

    Carol

  • PaulaAtlantaGA
    PaulaAtlantaGA Member Posts: 65
    edited March 2018

    Congratulations, AgathaNYC! What a relief!

    I finished my pre-surgery chemo today with Taxol #10. (Had 4 added Carboplatins, lost 2 planned Taxols to blood transfusions.)

    I get re-imaged on March 28 and meet with my surgeon on April 4 to learn my options. I'm hoping for a lumpectomy with breast reduction on the other side, but if she says mastectomy, that's, of course, what I'll do.

    rdeesides - Here in Atlanta, ANY remaining cancer would mean you'd be asked to take Xeloda for at least 8 cycles (2 weeks on, 1 week off) "if you can tolerate it." Or that's what my MO told me this morning. She's also doing a TNBC clinical trial on Keytruda for Stage III folks like me, if I have any cancer remaining. That would begin after radiation and Xeloda. My second opinion MO is doing a different TNBC trial out of Emory.

    I am keeping my port in case I need it for the Keytruda trial. Ugh, but without a clean pathology report, I want all my options open.

    My MO at Northside Hospital = Dr. Amelia Zelnak

    My 2nd opinion MO at Emory = Dr. Jane Lowe Meisel

  • rdeesides
    rdeesides Member Posts: 233
    edited March 2018

    Paula, I think everywhere is giving Xeloda if no PCR so I am baffled as to why my Onc doesn’t want to give it to me. I have a 2nd opinion on Monday and feel certain he will prescribe it. Donyou know the NCT #s of the trials you may do? I have only seen one for early stage TNBC so i just want to know if there are any others.

    Sylvia, thank you so much for thinking of me. Ihave been reading your thread too a little bit, but haven’t commented there yet. I do hope I can make it many years out like you. I have a small child and it worries me so much. I am trying to get the right doctors and the right treatments and also be healthy. That is all I can do.

    I got my foundation one report back today. I was disappointed that I have no PD1 and low PDL1 because I think this means no immunotherapy. I’m not sure though. I will ask my doctor. Also few mutations and some other stuff I can’t quite remember now. PIK3CA mutation, but I don’t know what that means either. Well, I will report back after I talk to my doctor.


    Rebekah

  • vl22
    vl22 Member Posts: 471
    edited March 2018

    R - glad you are getting a second opinion about Xeloda - I agree that it seems like the standardtreatment.

  • maggie2
    maggie2 Member Posts: 240
    edited March 2018

    Rebekah, you mentioned a clinical trial for early stage TNBC.  Could you direct me to finding that information? 

    I met with the MO yesterday.  I need a few more weeks to recover from the partial kidney removal then chemo will start for BC.  He told me that ACT, TC, or CMF are options for me, given the early stage and small tumor size.  I'm waiting to hear back from another MO to get a second opinion appt  to get some clarity on which chemo regimen is best for me. I'd appreciate any input that all of you may have as I try to make this decision. 

  • rdeesides
    rdeesides Member Posts: 233
    edited March 2018

    Hi Maggie,

    The trial that I know about is for the immunotherapy drug Keytruda. It is NCT02954874. I know Keytruda has worked well for some TNBC patients. The thing I like about this trial is that it has locations all around the country.

    There is another one which I am not sure if it is open or not but it is NCT02750358. I believe it is being run by Memorial Sloan Kettering and it is a trial for blocking Androgen receptors.

    If you go to ClinicalTrials.gov you can see the trials that may be open to you. Note that most trials are for advanced or recurrent disease, but every so often there are ones for early stage.

    Hope that helps.

    Rebekah

  • AgathaNYC
    AgathaNYC Member Posts: 317
    edited March 2018

    Hi, Maggie2 and rdeesides -

    The Sloan Kettering trial rdeesides mentioned for early-stage, Androgen-Receptor-Postive TNBC is on-going and open at least for a bit longer. I'm being treated there and my oncologist may want me to enter the trial if it is still open when I'm done with other standard treatments. It is for a pill-form of the drug Enzalutamide that has been used for prostate cancer.

    Hope everyone is having a good week.

  • maggie2
    maggie2 Member Posts: 240
    edited March 2018

    R- Thanks for the information on the trials.  I wish you success with your second opinion appt next week and that you can feel a level of comfort with your treatment plan.    

  • maggie2
    maggie2 Member Posts: 240
    edited March 2018

    Agatha, thanks also. I live in "flyover" country now so I'll will have to see if any trials are in my area. 

  • rdeesides
    rdeesides Member Posts: 233
    edited March 2018

    Agatha, How did you know if you were eligible for the Androgen trial? My foundation one report doesn't mention anything about androgen. I guess I can call them and ask.

    Maggie, thank you. I will keep everyone posted.

    R

  • AgathaNYC
    AgathaNYC Member Posts: 317
    edited March 2018

    R: I'm unfamiliar with Foundation One so I'm not sure if it tests for androgen receptor status. At Sloan Kettering they test for it when they do the pathology on a tumor biopsy sample. There's a separate thread about this trial in the Triple Negative section and I believe other women had their samples sent to MSK to be tested. You could ask them what their process was.

    https://community.breastcancer.org/forum/72/topics...


  • rdeesides
    rdeesides Member Posts: 233
    edited March 2018

    AgathaNYC,

    I just called Foundation One directly and they advise I have no Androgen Receptor mutation. I am sure MSK definitely wants to do their own testing anyway. I was just trying to get ahead of the game so that I could know what trial would be the best for me. Thanks for giving me the info on the thread!

    Rebekah

  • Batesburg
    Batesburg Member Posts: 114
    edited March 2018

    Rebekah and everyone,

    Check this out that I just read! This is exciting....

    https://www.eurekalert.org/pub_releases/2018-03/uo...

    Janet

  • rdeesides
    rdeesides Member Posts: 233
    edited March 2018

    Batesburg, the more studies the better! I know nothing about what they are researching here, but I'm glad to see new things being tested!

    Rebekah

  • mike3121
    mike3121 Member Posts: 280
    edited March 2018

    Thanks Batesburg, great news. On edge as my wife has her PET/CT scan tomorrow. Her ER/PR+ turned triple negative about a year ago with lot's of mets to spine. So far Xeloda has reduced most of them, but, you know, we live from PET scan to PET scan and always in fear of real bad news.

  • Beckham2
    Beckham2 Member Posts: 6
    edited March 2018

    Hello, everyone. I'm looking for survivors of multifocal TNBC. I'm grateful to anyone willing to share. I'm 37 with a husband and two young children. Finished dose dense AC and now doing 12 weekly Taxol with Carboplatin every third week. Will have a BMX after Thank you!

  • rdeesides
    rdeesides Member Posts: 233
    edited March 2018

    Beckham2, I am still in TX but my understanding is that having multifocal disease does not change the prognosis. I'm sure some people will chime in!

    R

  • Beckham2
    Beckham2 Member Posts: 6
    edited March 2018

    Thank you for replying

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