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Triple Negative Stage IV

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Comments

  • kaayborg
    kaayborg Member Posts: 576
    edited January 2018

    Hartrish, it is so good to hear from you. Sounds like you are on a good run. Fond memories of gem/carbo. It gave me 2 great years. I do hope you get that long and longer. Tomorrow I go flip the coin in hopes of getting the drug most promising for me at this point. Depression will sit in fast if I don't get it. O'Neill leave in tears guaranteed. I need to find the strength for one day at a time. I am so worried though that this is almost over. I am so not ready.

    Keep us posted about your tumor markers. Down, down they go!


  • hartrish
    hartrish Member Posts: 290
    edited January 2018

    Kaayborg: I know immu132 had a breakthrough designation for tnbc after 2 failed chemos. Do you know if breakthrough designation allows oncs to give the drug without being on a trial? I know you are going to check out the trial but might be worth asking if you can get it without trial

  • kaayborg
    kaayborg Member Posts: 576
    edited January 2018

    Hartrish, that is definitely something I'll try for if I don't get he drug, though it is a long shot. When at phase 2, the onc at Vanderbilt had tried for a few patients with no success but she wondered if the new larger company now running the trial might have different response but doubtful. I did learn from Sarah Cannon onc that they may get FDA approval as soon as mid 2018. So there is that. Maybe I can make it til then. Should find out by Monday the randomization.

  • Karina
    Karina Member Posts: 76
    edited January 2018

    Hi

    I was recently diagnosed with mets on my spine, liver an pleural effusion. The fluid was drained and after a while I has some improvement with shortness of breath. I am on Xeloda at the moment doing the 4 round. Unfortunately the sob is back and I have a feeling that he fluid is back either to my lungs or abdomen. Had a CT scan last week and will see the onc next week about it.

    My worry is that my receptors were changed in the mets from er pr positive to er pr negative, so I am triple negative now. My biggest fear is that if xeloda is not working, I will have no other treatment option.

    Can you please share your knowledge about treatments for triple negative bc? Also can you have sob from abdomen fluid? My mind is in a very dark place at the moment...

  • kaylynne
    kaylynne Member Posts: 143
    edited January 2018

    kaayborg-my other tumor marker was also slightly elevated. I go for chemo in a few hours. It will be interesting to see what my liver enzymes and tumor markers are now. Each time I have had the gem/carbo treatment, a few days later I feel bloated and have minor stabbing pains. Did you experience that? What have you found out about the trial? I read that you will find out about randomization on Monday meaning whether or not you get the drug? A weird thing happened this week. My left hand, which is the side the cancer is in my lymph nodes and breast, swelled up. I have not had any surgery so it can't be lymphodema. I had an ultrasound and it's not a blood clot. It has gone down some but it's still puffy. Anyone had these side effects?


  • mike3121
    mike3121 Member Posts: 280
    edited January 2018

    Karina, my wife was Stage 4 from diagnose back in 2012. She had 100% ER+, grade 1 in her right breast. Inside that was a 30% ER+, grade 3. Then, in 9 lymph nodes she had triple negative metaplastic BC. Also, a few small ER+ mets to her spine (regular TNBC not metaplastic). An operation, A/C then radiation got rid of the whole mess and she was clear for about for about a year. About 8 months ago, it came back as regular triple negative with numerous mets to her spine. A biopsy shows the ER+ had turned TNBC.

    My wife has been on Xeloda with periodic Zometa infusions. Last PET/CT scan showed most mets gone and a couple stubborn ones hanging on.

    With triple negative there are no treatment options other than chemo. However, I've found a huge list of trials going on. Here's a link to some of them. These are US trials and I have no idea about how NHS works

    .https://www.breastcancertrials.org/bct_nation/browse_trials.seam?categoryString=TREATMENT_VACCINE



  • Karina
    Karina Member Posts: 76
    edited January 2018

    Mike thank you so much for the information. As long as there is chemo available for tnbc mets i am happy to have them, if tey keep me alive. I have an appointment with onco on Tuesday, so will bring the trial subject on.

    I hope your wife keeps improving with her current treatment. Thanks again.

    love karina

  • kaayborg
    kaayborg Member Posts: 576
    edited January 2018

    Kaylynne, I always had bloating post chemo, stabbing pains not so much. I have had them but they seem more random than chemo based. Sorry to hear about your arm. I do hope your liver enzymes are still looking good. And yes, by Monday I should find out if I get the study drug. Fingers crossed. I would start Wed if so. Hate being off treatment in the meantime. I know you well understand that.

    Karina, do look into trials. Immunotherapy holds a lot of promise. There is also an antibody conjugate, Immune132 that is getting good results for heavily pretreated Tnbc. That is what I am hoping for next. It may be a good time for repeated Foundation one testing to point to best treatment options. Carboplatin worked for me for 2 years and was indicated on the test.

  • kaayborg
    kaayborg Member Posts: 576
    edited January 2018

    Still no word on the trial. Traveling south again to repeat blood test...hemoglobin too low. Hoping for good results and the study arm so I can still start on Wed.

    Miss hearing from everyone. Hope you are well. Update as you can.

  • hartrish
    hartrish Member Posts: 290
    edited January 2018

    hope your hemoglobin rises to get on trial. You are in my thoughts and prayers

  • kaayborg
    kaayborg Member Posts: 576
    edited January 2018

    Thrice I flunked. Still going to meet with oncologist tomorrow but I think this trial is bust. Doesn't seem fair. Coming to terms with it but really not happy. If I was already in the trial and my numbers were the same, I'd just treatment. If they were lower still, I'd just get an infusion and still have treatment. But be a few tenths shy in the beginning and it's tough cookies.

  • kaylynne
    kaylynne Member Posts: 143
    edited January 2018

    Damn it! This really sucks. Now what? I am getting weary and I am only on my third type of chemo.

  • kaayborg
    kaayborg Member Posts: 576
    edited January 2018

    Damn it all for sure, especially given my 2 experiences, can't say I like them. I'll keep you posted.




  • Karina
    Karina Member Posts: 76
    edited January 2018

    Heard the dreading words yesterday from my oncologist. Xeloda is not working !! After 4 cycles on 4000 dose daily, 600 tablets altogether haven't done anything to the stupid cancer cells. He wants me to start IV carboplatin on its own. Has anyone have it with positive result. I know some women do it with combination of another drug, i.e gemzar, but haven't read uch about taking it on it's own. But I trust my onco and I am sure he knows what he is doing. As a triple negative I am scared I will run out of options soon. Well hopefully not. So I wear my warrior head tomorrow and start a new battle :(

    Any advice from you ladies will be helpful. Thank you.

    Love Karina

  • kaayborg
    kaayborg Member Posts: 576
    edited January 2018

    karina, I was on gemzar and carboplatin for a year and it shrunk my 10 cm tumors down to 3 to 6 cm. I then dropped gemzar due to count issues and had stability with carboplatin for another year. Nothing has worked for me so well or really at all since, though I surely am hoping for a change regarding that soon. I have deep affection for carbo and hope it works magic for you too.

    I did develop an allergy and have to modify the schedule as time went on so please be in touch and make sure your onc makes the available modifications before just giving it up.

    Xeloda did nothing for me either so here's hoping maybe our cancers respond similarly. Hang in there and keep us updated.

  • Karina
    Karina Member Posts: 76
    edited January 2018

    Thank you Kaayborg, it's comforting to know carbo helped you. Did you lose your hair and what SE did you have?

    Thank you xx

  • hartrish
    hartrish Member Posts: 290
    edited January 2018

    karina, I am on carbo and Gemzar now. Both are doing a great job on my cancer. No hair loss on either drug. Might cause thinning but I have not noticed that. Been on it since september and I hope it works for a long period of time.

  • hartrish
    hartrish Member Posts: 290
    edited January 2018

    Kaayborg, which trial were you after, immu132? Have you checked into any PARP drugs yet

  • Karina
    Karina Member Posts: 76
    edited January 2018

    Thanks Hartrish. I see that you are triple negative too, so fingers crossed I will respond to the carbo. I am happy it has worked well for you. Keep going !

    Karina xx

  • kaayborg
    kaayborg Member Posts: 576
    edited January 2018

    Karina, I really loved carbo. No major side effects. Life went on pretty normally.

    Hartish, yes it was Immu132. Good news for all of us here that it will soon be approved for standard care. It's doing so well for heavily pretreated TNBC. I asked about Parps at Vanderbilt appointment. She was not enthusiastic. She said it's something to try if there's nothing else to try, but for now I have more promising options being without brca mutations. My onc said the same when I had asked a while back.

  • kaayborg
    kaayborg Member Posts: 576
    edited January 2018

    Julie, are you doing okay still. Check in when you can. I'm always thinking about you.

  • Karina
    Karina Member Posts: 76
    edited January 2018

    Thank you Kaayborg and Hartish.

    Had the first IV yesterday and feel ok so far. Even managed to go to movies afterwards LOL. All I can do now is cross fingers, hope and pray.

    Please check in and share the experience, results with carbo.

    Everyone have a nice, pain free weekend!

    Love Karina xx

  • hartrish
    hartrish Member Posts: 290
    edited January 2018

    Katrina, my side effects usually show up 3-4 days after chemo. Sore, sensitive muscles and skin to touch. Nausea but controlled will meds and of course some fatigue.

  • Sister-Sister
    Sister-Sister Member Posts: 22
    edited January 2018

    Hello it’s been awhile since I last posted. Hope a miracle happens for you and everyone else. Praying a definite promising TN medicine arrive soon

  • hartrish
    hartrish Member Posts: 290
    edited January 2018

    I have my MRI this week to check out how effective Carbo/ Gemzar have been. Tumor marker improved so hoping the tumors show shrinkage and not progression. Always a stressful week when it is time for MRI. Say a prayer for me that my chemo is still working.

    Prayers to everyone!


  • kaylynne
    kaylynne Member Posts: 143
    edited January 2018

    hartrish-prayers for good results coming your way. Is this your first MRI since starting gem/carb? I will have a PET in about a month to see if it's working for me.


  • hartrish
    hartrish Member Posts: 290
    edited January 2018

    kaylynne: this will be my second MRI. the first showed the tumors shrunk by 1cm each.

    It snowed here last night so will have to reschedule my MRI for another week. Emory closed the clinic today so all tests cancelled. :(

  • kaylynne
    kaylynne Member Posts: 143
    edited January 2018

    hartrish, Ugh the waiting....I am sorry. Y'all don't get much snow usually right? Are you two weeks on and one off? My onc wants me to do 3 more treatments before we do another PET. I wonder if I could get 3 in a row?


  • hartrish
    hartrish Member Posts: 290
    edited January 2018

    kaylynne: I am on a 21 day cycle. Day 1 I get both drugs. Day 8 I get only Gemzar. The third week is a rest week. We do MRI after every complete 3 cycles. Do tumor marker on day 1 before treatment cycle

  • hartrish
    hartrish Member Posts: 290
    edited January 2018

    the FDA approved PARP inhibitor. Here is the announcement.


    http://www.breastcancer.org/research-news/lynparza-approved-for-her2-neg-brca-mets

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