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TNBC Recurrence Survivors?

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Jojobird
Jojobird Member Posts: 95
edited February 2020 in Triple-Negative Breast Cancer

I've been recently diagnosed with a recurrence of TNBC. It's local, and according to my onc, "treatable," but the prognosis is uncertain as are the outcomes.

Are there any TNBC survivors of local recurrence out there? And for how long? I'm trying to rally some hope here.

Thank you,

Jojo

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Comments

  • TulipsAndDaffodils
    TulipsAndDaffodils Member Posts: 48
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    Oh, I'm so sorry you are going through this! But it definitely makes sense to stay optimistic. While I've only dealt with TNBC once, my next door neighbor had it twice. Originally, she was 35, and had chemo, mastectomy, and radiation. Then 4 years later, it came back along her mastectomy scar line, and she had to do chemo and radiation again. Of course this was deeply worrisome to her, but it has been 7 years since that 2nd time, and all is good!!

  • Jojobird
    Jojobird Member Posts: 95
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    Dear TulipsandDaffodils,

    Surely this post is a bit of spring, some hope to start this morning. Thank you so much!

    Jojobird

  • vl22
    vl22 Member Posts: 471
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    Hi Jojo - I pop into another forum sometimes. There is a woman there who was diagnosed stage 1 TNBC at age 49. Did all treatments, then was diagnosed stage 3 a year later - it was a recurrence in her internal mammary nodes. She has been cancer free for 7 years!

    Hugs.


  • Passant1
    Passant1 Member Posts: 1
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    Hi jojobird

    Im currently going through a local TNBC recurrence while on taxol.

    You’re not alone 💚💚


  • Jojobird
    Jojobird Member Posts: 95
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    Passant, thank you, and thank you for all of the replies. This second time around has been especially difficult.

    I appreciate the responses.

    Best,

    Jojo

  • ddobre
    ddobre Member Posts: 1
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    Hi al,

    I am waiting to see my breast surgeon; apt is on 11/28/18 it seems so long and I am worried I might have a reccurance . The breast ultrasound well let me back up first I saw a little nodule that looks like a P size right near the middle scar on my reconstructive breast I had invasive ductal carcinoma in 2009 stage 2b.they say they Are micro calcifications or they could be scar tissue? Anybody else go through this

  • KY73
    KY73 Member Posts: 1
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    I was recently diagnosed with a local recurrence of TNBC after 14 years of no evidence of disease. Regular screening mammogram detected the tumor. I had a bilateral mastectomy last week and my oncologist is recommending chemotherapy. What treatment is your oncologist recommending?

  • Cbh702000
    Cbh702000 Member Posts: 1
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    Hi I was diagnosed with TNBC for a second time. I should be starting chemo next week.

    Recommendation for me is carboplatin

  • Deedi
    Deedi Member Posts: 27
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    I have just received diagnoses of reoccurrence in mediastinal nodes. Waiting to start abraxane and tercentique.n suppose to start today but insurance has not approved yet. I have so many questions. I am not sure if this is stage 4? Getting a second opinion at Vanderbilt on Tuesday and hoping to get into trials.
  • sher0959
    sher0959 Member Posts: 9
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    Hi Deedi, I just received diagnoses of recurrence in sub-pectoral nodes. i will be going to Vanderbilt soon. How are you and what treatment are you doing?

  • RMG23
    RMG23 Member Posts: 1
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    Anyone know of Doctors who specialize in triple negative Breast cancer

  • Deedi
    Deedi Member Posts: 27
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    Sher, Sorry I didn't see your post. I was lucky enough to recieve the tecentric/Abraxane here. I did visit Vanderbilt which we discuss tecentric/but with carbo. The dr I spoke with acted as if they have had success with that combination and the mediastinal nodes. They have 5 different options for tnbc if I recall correctly. I am doing fairly well with the Tecentric. I just received my six months scan and it hasn't spread. I plan to go back to Vanderbilt once this no longer works for me. Please let me know how you are doing. Did you get into a trial at Vanderbilt?

  • santabarbarian
    santabarbarian Member Posts: 2,310
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    Docs: Tiffiny Traina at MSK and Melinda Telli at Stanford are two TNBC specialists...

  • trackercs
    trackercs Member Posts: 3
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    June 2019, TNBC recurrence in other breast. Bi-lateral mastectomy this time. Waiting to start chemo. Oncologist recommendation is for AC/T. Lumpectomy, chemo, and radiation in 2015 went amazingly well. I'm so scared this time will be horrible because last time went so well. Keep telling myself not to think that way but this is 16 weeks, 12 courses. First time it was 12 weeks, 4 courses.

  • Debflo
    Debflo Member Posts: 1
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    was diagnosed in 2012, had 3 different reoccurrences,last reoccurrence was in 2013,14 and have been cancer free since then.

  • sher0959
    sher0959 Member Posts: 9
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    Hi Deedi, Thanks for responding. I saw Dr. Ingrid Mayur at Vanderbilt. I had the option of the trial of Carboplatin with Tecentriq at Vanderbilt or like you, I could do the Abraxane and Tecentriq with my oncologist. I am doing the Abraxane and Tecentriq. I have had to miss the third treatment on the two cycles I have had because my neutrophils get too low. My oncologist is doing a scan this week to see if the treatment is having any impact on the cancer in the lymph nodes. Hope you are well. I'll try and do better about checking in on this post.


  • Deedi
    Deedi Member Posts: 27
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    Hi Sherry. I have been on the tecentriq and Abraxane since January. So far the treatments have worked well for me. I feel fairly well and active. My oncologist did lower my abraxane to help with neuropathy. I get a chest scan and heart tomorrow. These scans make me a little nervous. I am looking for trials or next steps after this treatment quits working. Did Vanderbelt give you options or next steps after this treatment? Good luck to you on your scans. I will be thinking of you and will pray good results.
  • sher0959
    sher0959 Member Posts: 9
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    Hi Deedi, I had CT scan today and with only the two cycles I've had (and missing the 3rd treatment of each cycle) my affected lymph nodes were smaller. I'm still waiting on the full radiologist report. As of now, my goal is to have pathological complete response when I have surgery. So, if there had been no response on the CT scan today, I'm sure we would have a discussion today. Since the doctor at Vanderbilt said that the Carbo plus Tecentriq was an option for me, I think that would have my been my next plan. I've had neuropathy in hands and feet since my first treatment of the ACT in 2014-2015. I already take 1800 mg Gabapentin each day to help. I have not noticed any additional neuropathy with the Abraxane but since i already have damage, I may not notice it or not notice it until later. My doctor and I did discuss the dosage last week since my WBC has been too low for 3rd treatment of each cycle. He said he wanted to stay with the high dose so my dosage hasn't been lowered but then you have been on this treatment longer than me so my dosage could be lowered at a later time.

    Prayers that your scans had good results.

  • Deedi
    Deedi Member Posts: 27
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    hi Sherri, I am glad to hear your treatments are going so well. Exciting that with so few treatments, they have shrunk. Yahhh! I am almost 8 months in and chest scans have shown that mine grew slightly but hasn't spread. Last scans only one grew from 0.4mm to .9 mm. Since they have increase slightly over the past two scans, even slightly, My onc suggest I change treatments. We talked about carbo/ gem or even Xeloda to stay ahead of it. I can't do the immunotherapy trial at Vanderbilt since I am on the tecentric but they do offer an inhibitor trial with taxol. This trial won't open for at least 6 weeks. I need to follow up for better details. Surgery is not a n option for me since there are about six small mediastinal nodes affected. Decisions decisions. These metastatic decisions are a little more difficult. I Need to start researching more. I am hoping and praying that this treatment continues to work for you.
  • Deedi
    Deedi Member Posts: 27
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    hi Sherri, I am glad to hear your treatments are going so well. Exciting that with so few treatments, they have shrunk. Yahhh! I am almost 8 months in and chest scans have shown that mine grew slightly but hasn't spread. Last scans only one grew from 0.4mm to .9 mm. Since they have increase slightly over the past two scans, even slightly, My onc suggest I change treatments. We talked about carbo/ gem or even Xeloda to stay ahead of it. I can't do the immunotherapy trial at Vanderbilt since I am on the tecentric but they do offer an inhibitor trial with taxol. This trial won't open for at least 6 weeks. I need to follow up for better details. Surgery is not a n option for me since there are about six small mediastinal nodes affected. Decisions decisions. These metastatic decisions are a little more difficult. I Need to start researching more. I am hoping and praying that this treatment continues to work for you.

  • santabarbarian
    santabarbarian Member Posts: 2,310
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    Deedi can you do proton rads on nodes?

  • Deedi
    Deedi Member Posts: 27
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    Thank you Santabarbrian. I will look into the proton radiation more. My oncologist says there are. 6+nodes affected. They are 1.4cm and smaller. They usually radiate with only one or few lymph nodes. Right now I don't have any symptoms. I also have some fluid around the heart (yikes, I know, pericardial effusion in the works). This has been there on and off for a while but increased slightly. I'm a little nervous and she thinks radiation may cause me more problems. I should research for a trial with radiation. I'm not sure what to do for next moves but I know it is probably criticL with the tnbc. Right now I am listening to her suggestion. I have taken the XelodA after stage 3 treatment and did fairly well so I will try this. I know she is focused on quality of life and I can't get past wanting more time. Vanderbilt does have a trial opening soon I know I qualify for and will take this time to search for others. Right now nothing stands out for the TNBC. Holding on for dear life ... Literally!!!

  • sher0959
    sher0959 Member Posts: 9
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    Hi Deedi, I hope and pray you are doing okay and still doing well on the Xeloda. Is your oncologist consulting with Vanderbilt at all? They might still have a place in Carbo trial. If you do not have the cell phone of the trial nurse there, I have it. I had all three treatments on my third cycle and the neutrophils rebelled. So, i had to go in take Neupogen shots to build them up. I had the first treatment of the 4th cycle today. Still taking full dosage but I most likely will only make it through two treatments. My oncologist (Dr. Baskin) has retired so I start with a new onc next week. He (Dr. Lammers) came to Baptist in Memphis from Vanderbilt and he has a special focus in treating breast cancer. I went into this knowing the age of Dr. Baskin but I dearly love and trust him so stayed with him. I completely understand his retiring but it still broke my heart. Here is my understanding at this point. Most likely, I will have surgery in a few weeks. I guess I misunderstood the part about PCR as the surgery will occur sooner rather than later. I'll know more this coming week. Again, I hope you are doing okay and something is in the works that will get you moving in the right direction. Prayers for you. Sherry

  • Deedi
    Deedi Member Posts: 27
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    thank you Sherry. I have only been on the Exolda for 2 weeks and on my off week. So far so good. My dr is working with Vanderbelt. They have a trial that is not yet open that they have chosen. Instead of me waiting with no treatment she started me on the Xeloda. I am glad you have a good plan in place. Surgery is never fun but if it gets rid of the cancer it will be so worth it. It sounds like you are already connected to Vanderbelt which is fantastic. Are you already in the trial with the carbo/tecintriq? I had plan to start the trial with Vanderbelt in January but got approved to take the tecintriq with the abraxane with my dr. I’m ready to make the move since I am slowly progressing. I have a lot of good things about Vanderbelt. Hopefully they have the answers we both need. Take care. I will be thinking of you and adding you to my prayers. Diane
  • beckne1
    beckne1 Member Posts: 1
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    Hi everybody! I am currently undergoing treatment for mTNBC. My oncologist has informed me that the cancer is in several places most notably my liver. I am 50 years old and have a 6 year old son. My mind is racing in a million directions. I was initially diagnosed with TNBC in October of 2017. I did 20 weeks of chemo (AC, Taxol, Carbo), had a bilateral mastectomy (as I am also BRCA2 +), 6 weeks of daily radiation and had my ovaries and tubes removed in May of this year. I thought I had all my bases covered but low and behold..cancer found a different landing ground. Almost 2 yrs to the day of my first diagnosis, I am back at square -1. My chemo regimen is Gemzar and Carboplatin. The cancer responded extremely well to the carbo the first time so she is optimistic that it will help again this time. Anyone else have metastases like mine? And if so, what treatment recommendations have you received?

  • hikerchic
    hikerchic Member Posts: 25
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    Hi! I'm a new mTNBC chic here, with mets to spine, liver, and right lung. I wS initially diagnosed with highly ER/PR positive BC in 2016 while prego with my baby girl. Just a couple days after her 3rd birthday I was informed what I thought was a herniated cervical disc was actually a metastatic lesion...ugh. Then the snowball effect of lung and liver.

    Currently, I am receiving carboplatin and paclitaxel every three weeks, having finished my first round and going for #2 next Tuesday. Also had 10 rounds of XRT to my cervical spine and, unfortunately, fried my esophagus so been a long month here.

    When they did my liver biopsy, they didn't do androgen receptors, which I was a little unsettled about so requested. They did end up being positive, so I believe that to be good news. Did you have androgen receptor testing as well?

  • santabarbarian
    santabarbarian Member Posts: 2,310
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    I was tested for AR. I was 90% AR+. Should I need more treatment it opens up androgen blocking chemos (that are used for prostate cancer).

  • hikerchic
    hikerchic Member Posts: 25
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    That is exactly why I was upset that my MO didnt order AR testing on the liver biopsy. When I asked about AR testing, his reply was based on what he saw he did not believe it would be AR+. Since when medicine went by a "belief" system, I have no idea. I requested AR testing and about a week later received the call that, yes, AR+ and this is a "pearl" as it gives another line of treatment. This is a huge blow to any already weak provider/patient relationship as I feel he has already given up the cause. Couple that with a palliative care referral when I dont even have major pain or QOL issues...well.....


  • pesky904
    pesky904 Member Posts: 263
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    What is AR?

  • santabarbarian
    santabarbarian Member Posts: 2,310
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    Androgen Receptor