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Triple Negative Stage IV

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Comments

  • moderators
    moderators Posts: 8,637
    edited May 2018

    riley - So sorry to hear about your progression. Wish you well with the treatment, we're thinking of you!

    The Mods

  • moderators
    moderators Posts: 8,637
    edited May 2018

    riley - So sorry to hear about your progression. Wish you well with the treatment - we're thinking of you!

    The Mods

  • thrivingmama
    thrivingmama Member Posts: 133
    edited May 2018

    Hi. I'm new here and learning how to navigate the site. Someone on another tread pointed me to this one, so I thought I would introduce myself and pick your brains :) I was diagnosed with 2 TN liver mets in January of this year. I have two little ones and I am highly motivated to live as long as I can!

    Anyone here who went NED? What was your treatment plan after you went NED? How long did it work for? What would you do differently in hindsight?

    As background... I had extremely ER+ stage 3 cancer (diagnosed Dec 2016) and went through ACT, mastectomy, radiation, and then was on faslodex/lupron/Ibrance. The 2 liver mets that showed up in January were triple negative. I started GemCarbo and after 6 rounds the mets can no longer be seen on PET. So, I am continuing on GemCarbo until my next PET. My doctor is considering taking me off GemCarbo if my scan is clear.

    Curious what others have done for "maintenance" of triple negative NED.

    Also, has anyone done radiation ablation or other local liver treatment for mets that went undetectable by PET?

    Has anyone tried immunotherapy while NED?

    I'm all ears to what other's have done or heard about.

    Thanks in advance!

  • hartrish
    hartrish Member Posts: 290
    edited May 2018

    hi thrivingmama

    Welcome to the thread. Wonderful to hear that you are NED!!

    Been on carbo/gemzar for 9 months. Had diffuse liver cancer but now MRI shows little cancer. Doc did not think at beginning she could get me to NED. Hoping maybe there is a chance now. Have not talked about maintenance dose. Had to decrease carbo dose last week because of ringing in the ears possible ototoxicity.

    Have not had ablation done so not sure about that.


  • thrivingmama
    thrivingmama Member Posts: 133
    edited May 2018

    hartrish - thank you for the quick response! Great to hear that you have been on gem/carbo for 9 months and that it's working so well to knock back the cancer. I hope it gets you all the way to NED!

  • mike3121
    mike3121 Member Posts: 280
    edited May 2018


    Wife's ER/PR+ turned TN about a year ago with numerous mets to spine. She was immediately put on Xeloda soon after diagnosis. Xeloda eradicated some mets but a few remain. Xeloda has, so far, kept her TN cancer in check.


    Her's is an extremely complex case. In late 2012 she had ER/PR+ in breast with one lymph node and one met to her spine. Dr recommended no mastectomy, but AC. AC was reducing main tumor, however, it went wild. Her main tumor, which was ER/PR+ grade 1, 100% estrogen had developed an ER/PR+ grade 3, 30% estrogen in its core. Also 9 of 19 lymph nodes removed, had triple negative Metaplastic cancer with residual metaplastic in lymph nodes. She then had her lifetime amount of AC then radiation. Cleared up everything and was NED for a short time until TN spinal mets.

  • sfgirl
    sfgirl Member Posts: 16
    edited May 2018

    a huge loss for all of us

    passed away at 11:10pm on Friday, May 11, 2018.

  • Sharjin
    Sharjin Member Posts: 37
    edited May 2018

    By the grace of Almighty, my mom is responding well to the chemo. Her last scan showed significant regression of the of the mediastinal and hilar nodes after 2cycles of Gem Carbo. So she will be on this chemo for for another 4cycles and will have scan again. She is just weak from the chemo.

    Kaylynne and Riley, how are you two? Post if you get time.


  • riley702
    riley702 Member Posts: 575
    edited May 2018

    Sharjin, yesterday was Day 6 of 16 rads (minimum - he'll decide later whether I need more). I have a wean schedule for the decadron. Bought a pushcart/scooter for $25 today. Doc was fine with me taking the pills stretched out and drinking thicker liquids to keep them down, so more milk and Boost, along with cheese sticks to also hold stuff down and add nutrition. Pretty good day.

    Several days ago, the tech was lining up markers on the headgear and I asked him how many mets he saw. He yells to the back, "92!" When I flinched, he asked what I'd said, then told me he was calling out markers and couldn't see inside. I laughed and said he was awfully casual about 92. I asked Dr. Dugan today and got the impression it was hard to tell with swelling around them. Basically, don't worry about it.

  • hartrish
    hartrish Member Posts: 290
    edited May 2018

    sharjin: so glad your mom isresponding to carbo and Gemzar. Hoping she gets to stay on the drugs for as long as they are needed.

    Riley: glad you are able to keep liguids down.


    Praying for everyone. Hugs to all.

  • hartrish
    hartrish Member Posts: 290
    edited May 2018

    sharjin: I just read on the liver mets thread that kaylynne passed away last week. The poster said she saw it on FB. I assume it is true.

    I will miss kaylynne and missy so much. They were both such fighters. Hugs and prayers to their families.

  • Sharjin
    Sharjin Member Posts: 37
    edited May 2018

    Thank you Hartrish. Hope you are doing well and all good with treatments. Keep posted. Hugs and prayers for you.

    I am so sad and so going to miss Kaylynne and Kaayborg in here. Prayer for their families and hope they can get through this loss and pain.

    Riley, I am so glad to know you are coping up good with all the treatments. Hope these radiations kill those nasty cancer cells. Keep us all posted if possible. My heart flinches if I don’t see anyone in here for long.

    Love and prayers in everyone’s way.

  • KPW3
    KPW3 Member Posts: 127
    edited May 2018

    I am so sad about Missy and Kay Lynne. Here is the URL of Kaylynne's obit, it says she died May 20th, Sunday.

    http://www.smithandkernke.com/obituary/Kay-Lynne-Edgar/Oklahoma-City-Oklahoma/1797765

  • riley702
    riley702 Member Posts: 575
    edited May 2018

    I'm going to miss our ladies!

  • sfgirl
    sfgirl Member Posts: 16
    edited May 2018

    does anyone know obit link to Missy (kaayborg)?

    This is a link to my dear friend, my best friend ever, also a victim of triple with mets
    https://www.currentobituary.com/obit/218362

    and more about her if anyone's interested:

    http://now.tufts.edu/articles/elena-rybak-akimova-...

    https://tuftsdaily.com/news/2018/03/16/elena-rybak...


  • KPW3
    KPW3 Member Posts: 127
    edited June 2018

    sfgirl,

    I'm sorry to read of he loss of your friend. She sounds like she was pretty amazing! It's our loss too.


  • minxie
    minxie Member Posts: 239
    edited June 2018

    So sad to hear about Kaayborg and Kaylynne. This disease is awful.

    I'm continuing with my Genzar/cisplatin. My main issue is extreme fatigue. I had a house full of people last weekend for my son's high school graduation and I was practically drifting off in front of them. Tomorrow morning I'm getting a blood transfusion, which I hope helps. The blood levels keep declining, so my doctor feel it's necessary at this point.

    Scan next Tuesday, let's see if this stuff is working!

  • hartrish
    hartrish Member Posts: 290
    edited June 2018

    minxie; hoping for great results on your scan. My mri is the following week.

  • riley702
    riley702 Member Posts: 575
    edited June 2018

    My symptoms have been steadily improving with the M-F head rads. So my Dr. says 3 more treatments, and after next Wed., I get around a month off before rescan and re-eval. Still can't drive until 6-8 wks after all the rads are done, but no big deal. Hair and eyelashes are gone. I joked on Facebook today that I was having a good (no) hair day. LOL

  • hartrish
    hartrish Member Posts: 290
    edited June 2018

    Riley: so glad your symptoms are improving. Way to go.

  • riley702
    riley702 Member Posts: 575
    edited June 2018

    Thanks!

  • Sharjin
    Sharjin Member Posts: 37
    edited June 2018

    Riley: Glad to know your symptoms are improving. Hope radiations keep those buggers at bay.

    Minxie and Hartrish: Good luck for your upcoming scans. Looking forward to hear good news next week.

    My mom is doing better, still doing the Carbo/Gemzer. Her last scan after getting 2cycles showed improvements. But these chemos are getting hard on her blood count. She already had blood transfusion after 3rd cycle for low Hb and got Neulasta shot too. And she is so tired all the time, has lost her appetite, feeling nauseated, forcing herself to eat. She is complaining about pain right below her rib cages, but she just did the scan of the whole thorax and abdomen 3weeks back, every other organ came normal and no other Mets other than pleura. I don't know what's causing that. May be normal acidity pain but hearing anything about pain has kept me on my toes.

  • Bhavana_7
    Bhavana_7 Member Posts: 6
    edited June 2018

    Hi all,

    Here i would like discuss my mom case, she is detected with breast cancer (3cm) mets to lungs(1cm) & lymph nodes[there were small nodules initially]. Our Onco started with 3 cycles of Chemo [ Alrubicin 160mg, Endoxan 900mg, 5Fu 900mg], after this they did PET scan to check the tumor size, unfortunately it has grown in breast as well as in lungs. Then they decided to give paclitaxel-160mg for 12 weeks (weekly instead of 21 days gap), my mom's platelets count came down after taking taxel chemo for 2 consecutive weeks. Than our Med Onco suggested to go for 21 days gap with Invotaxel-160mg chemo 2 cycles. Again we did CT scan to check the tumor size, we were devastated by seeing the report, tumor is still in progress. Some necrosis were noted in breast & lymph, but more has grown in lungs.

    Now we have done with lung biopsy to check ER/PR of lung tumor, waiting for this report.

    Request you all to check for chemo medicine my mom has taken so far. Are we in right direction or not? Any suggestions on this would be very helpful for us.

    Hoping for good every day!

    Bhavana

  • Sharjin
    Sharjin Member Posts: 37
    edited June 2018

    Hello Bhavana, can you please share the hormone status that means Estrogen Progesterone Herceptin status for your mom?

  • hartrish
    hartrish Member Posts: 290
    edited June 2018

    sharjin: I had no pain until I started chemo. Always worried that it was the liver cancer growing. So far, that has not been the case. I am thinking now it is the tumor dying and maybe the chemo is agitating the liver at times. Maybe your mom’s pain is related to the necrosis or chemo irritation to liver.

    Is she staying on nausea meds around the clock after infusion? I usually stay on my zofran for three days after chemo whether I need it or not. If I have break through nausea then I alternate Ativan and zofran every 4 hours. I also have compazine if needed.

    Is you mom on an anti acid like prilosec? Chemo can cause indigestion so she might consider that if not on any.

    I take neulasta at the end of each cycle to keep white count up. So far my hgb has been no lower than 10.3.


  • KPW3
    KPW3 Member Posts: 127
    edited June 2018

    I'm looking for opinions....Abraxane has stopped working. My next treatment will probably mean a decision between:

    1. NCT02983045-

    A Dose Escalation and Cohort Expansion Study of CD122-Biased Cytokine (NKTR-214) in Combination With Anti-PD-1 Antibody (Nivolumab) or in Combination With Nivolumab and Anti-CTLA4 Antibody (Ipilimumab) in Patients With Select Advanced or Metastatic Solid Tumors (PIVOT-02)

    2. NCT02513472-

    Study to Evaluate the Efficacy and Safety of Eribulin Mesylate in Combination With Pembrolizumab in Subjects With Metastatic Triple-Negative Breast Cancer (mTNBC)

    One is close to my hometown and the other is at Dana Farber.

    Thoughts?


    Also posted on liver mets...

  • Bontbestie
    Bontbestie Member Posts: 1
    edited June 2018

    hi, how are you now? I’m in exactly this situation now, feel desperate!

  • KPW3
    KPW3 Member Posts: 127
    edited June 2018

    Bontbestie,

    I'll send you a private msg.

  • hartrish
    hartrish Member Posts: 290
    edited June 2018

    KPW3: I saw your post in the liver mets thread. Both studies look exciting to me. Although the NKTR214 does not report but on 3 BC patients, that makes me a little nervous with 1 response and 2 non responders.

    Here are some links with Eribulin and Keytruda results.

    https://www.onclive.com/conference-coverage/mbcc-2...

    http://eisai.mediaroom.com/2017-12-08-Encouraging-...

    Do you know if you have the BRAC mutation? I have the PALB2 mutation which is linked to BRAC. Platinums seem to work well in TNBC with BRAC/PALB2 mutations. Also, PARP inhibitors might be something to look at if BRAC/PALB2 mutation present.

    Carbo and gemzar has worked well with my TN liver mets.

    Keep us updated on which trial you decide to enroll. Wishing you all the best. Prayers coming your way.

  • KPW3
    KPW3 Member Posts: 127
    edited June 2018

    Thanks Hartrish,

    I do not have the BRAC or PALB2 mutations. I was looking at these trials before starting other chemo since they have to be 1st or 2nd line therapies and I've had Abaxane as my #1 line.

    I appreciate the prayers!

    I'll let you all know.

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