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Triple Negative Stage IV

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Comments

  • hartrish
    hartrish Member Posts: 290
    edited September 2017

    Thank you for replying. Did you have the Caris, Foundation One testing or Ratioale Therapeutics done? I am going to look into that if I progress on carbo and Gemara.

    I truly appreciate your support.

  • kaayborg
    kaayborg Member Posts: 576
    edited September 2017

    Kay I read that bookbright after my initial dx and liked it very much...made a few lifestyle changes as a result including daily yoga practice instead of sporadic. I didn't know there was a documentary. Thanks for the mention.

    hartrish, I did Foundation One.

  • hartrish
    hartrish Member Posts: 290
    edited September 2017

    K, did you find the Foundation one information helpful or not? Just trying to layout a plan. I hope your new treatment works and for a long time.

    Any thoughts from anyone on the Rationale Therapeutics testing for tumor sensitivity for different chemos?

  • kaayborg
    kaayborg Member Posts: 576
    edited September 2017

    I think you should definitely do Foundation One, especially if covered by insurance. It didn't actually turn up any good treatment directions for me. Just confirmed why my first line worked so well. Glad we made that lucky guess. No way to say what it may turn up for you but indications on what might work best are really nice to have. Sure wish I had something to go on.

  • hartrish
    hartrish Member Posts: 290
    edited September 2017

    Hi Everyone

    I was wondering if there is a database with all the clinical trial RESULTS for studies related to TNBC. I know we can look up clinical trials but I want a database that you can search for any clinical trial related to TNBC, the drugs, and the RESULTS of the trial. I am hoping we could filter by drug or mutation/expression, etc. It just seems the information is scattered everywhere and not one place that summaries results. Such as, the Keytruda trials and TNBC, what were the results from the studies that have been finished and a list of the ones that are continuing. So a synthesis of trial results.

    Thank you.

  • kaayborg
    kaayborg Member Posts: 576
    edited September 2017

    That would certainly be lovely but I don't think it exists. I have read articles here and there summarizing results but no one place to go and certainly finding info about results is hard for active studies. I think the best thing to do is to call or email the study cooridinators and ask specifically what results they have thus far. For example, I read the phase 1 abstract of the results for a trial I wanted to enter at phase 2. They looked very promising. However, when I talked to the doctor I learned those results included mostly ovarian cancer patients, only 3 of the 26 were tbnc and their results were mixed. It is incredibly hard to know next best steps.

  • Texasrose53
    Texasrose53 Member Posts: 290
    edited September 2017

    Hey ladies....welcome to the newbies. This is a very good group!

    Well I finally started my trial this past Tuesday. My last chemo treatment was June 12th. Was suppose to start trial 4 weeks later (they wanted me to have a cleanse period before the trial). Week before I was to start the trial I had developed brain mets. So not eligible for the trial at that time...I did WBR for 14 sessions. Research people told me I could start trial after a four week cleanse from radiation. I elected to do that. They had labs drawn, did MRI and CT scans. MRI showed decrease in size and some of the brain mets gone. CT scan showed that I had mets in right side of liver. Well..I am very excited about this trial even though waiting caused me to have new mets, The nurse that administered my vaccine and infusion told me they have had great results with this trial. One woman is cancer free following 10 treatments.Another is 8 months stable....this is an immunotherapy trial with a vaccine that was created in a lab to fight my cancer. I will keep you all posted on how it is going. I did experience some major fatigue from the WBR but am feeling great!!

    Huggs to each one of you!!

    Julie

  • kaayborg
    kaayborg Member Posts: 576
    edited September 2017

    Julie! So great to hear from you and to hear that your brain mets are moving in the right direction...gone. And also so glad you now get to begin your trial. Do you happen to have a link the study? I would love to check it out.

  • Texasrose53
    Texasrose53 Member Posts: 290
    edited September 2017

    Hey Kay...not sure about the link. But if you go to the clinicaltrials.gov website and search for this identifier you should find it,

    NCT02725489

    Or you can search for Mary-Crowley in United States....the first trial that comes up is the one I am participating in.

    Julie


  • kaayborg
    kaayborg Member Posts: 576
    edited September 2017

    Julie, that study sounds very promising. It would be far for me but I'm still putting it on my long list. What is unique about this immuno trial from those I have looked at is is that you can have prior immunotherapy, just not Vigil. That is nice.

  • hartrish
    hartrish Member Posts: 290
    edited September 2017

    pearl85: just checking on you to see how everything is going. Did you decide on a particular Chemotherapy yet? Thinking about you and sending positive thoughts and prayers your way.

  • kaayborg
    kaayborg Member Posts: 576
    edited September 2017

    I'll just post this friend/family update to you here as well, my online friends and family:

    I didn't expect that the scans would be good but turns out they were worse than I thought. No measurements to give you about the growth. Basically new tumors are growing so close to old ones and to each other, they cannot accurately measure them. Tumor load is estimated to be worse than it was at diagnosis two years ago. Liver function is okay, abnormal and higher still but no immediate threat of failure. However, Dr. Lustberg stated it is very important that this treatment work. Progression is rapid.

    We have been considering for some time at what point it would be appropriate to tell the girls that these treatments won't keep me alive forever. Today's news helped us to decide along with the counsel of staff at the Spielman. While we still remain hopeful that I may get a durable response out of eribulin, if I do not, and things progress faster than the next treatment can keep up with, the end will be soon. I feel they deserve the opportunity to process this over time and with us, not alone. The conversation went as well as I think it could have. A horrible thing to have to do but I know God will take care of us all, and we believe it was the right thing to do and the right time to do it.

    Things to hope and pray for:

    a change in the tumor make up...achieving HER2+ status occurs 30% of the time and gives many more potentially effective treatment options, or anything else that opens doors

    insurance approval of immunotherapy off label to add to eribulin, increasing chances of its effectiveness and durability

    a liver that tolerates decline slowly so treatments have a chance to be effective

    the resiliency of our children...us too

  • hartrish
    hartrish Member Posts: 290
    edited September 2017

    kaayborg: I am so sorry about all of this. I know your conversation with your family/children was a difficult one. I am lifting you up and your whole family in thoughts and prayers.

    Have you thought about doing the Rational Therapeutics testing to see about chemo sensitivity to your tumors

    Also, what liver tests are you monitoring?

    Hoping your insurance approves your immunotherapy drug.

    Prayers coming your way.

  • kaylynne
    kaylynne Member Posts: 143
    edited October 2017

    I had the best weekend with my daughters (33 & 27). We spent Saturday at a local art's festival and ate at one of our favorite restaurant that serves shabu shabu. We stayed up until 1am playing Sequence, talking and laughing. These will be my best times. Every. Single. Day. Will. Be. My. Best. Day.

  • 4everStrong
    4everStrong Member Posts: 88
    edited October 2017

    Kaay .. I am so so sorry to hear about your progression, you hanged in there for so long and so well.. hearing this is devastating, but keep staying strong and positive hopefully the chemo will work again and the immunotherapy will get approved too..

    I am truly praying for you, you have been such an inspiration! your mood, your way of writing your attitude has been brilliant! I have no words, I just want to say that I am here if you want to chat away..

    I want to believe that you are one of those who can keep the cancer at bay for many many years..

    many hugs for you.. you are such a beautiful person and a fighter.. I believe in you!

  • kaayborg
    kaayborg Member Posts: 576
    edited October 2017

    My MO recently mentioned to me a new drug that has done really well in trials for tnbc. It is called sacituzumab govitecan. Here is a link to the info from phase 1 and 2 trials. She says that the phase 3 trials will be opening soon. It is not an immunotherapy so having done prior immunotherapy trials will not exclude you from eligibility.

    http://ascopubs.org/doi/abs/10.1200/jco.2015.33.15_suppl.1016

    Getting some early indication that eribulin is doing something for me...liver enzymes dropping and tumor fever. Hope to have treatment again Friday. Delayed from yesterday, low neutrophils.

  • kaylynne
    kaylynne Member Posts: 143
    edited October 2017

    Thanks kaayborg for the trial info. I reached out to the coordinator in Dallas and am waiting for a reply. Keeping you in my prayers that blood work comes back A-OK for treatment on Friday. I'll let you know when I hear back from Dallas.

    Texasrose53 how is the trial going?

    pearl85 have you started chemo?

  • LisaMarie67
    LisaMarie67 Member Posts: 10
    edited October 2017

    Hi ladies. The last time I posted, I was still stage I, but now I am joining your exclusive club. I am happy to meet you, and hope to positively contribute to this small TNBC world we are in.

    I am now stage 4 with mets to spine and lung. I had radiosurgery on both lesions and hopefully they are both gone. I will be having a scan in a couple of weeks to see if the radiosurgery worked. My oncologist is recommending lifetime low dose chemo, but is also sending me to Duke for a second opinion. I am scared, but positive. Any and all advice about treatments, etc are welcome.

  • hartrish
    hartrish Member Posts: 290
    edited October 2017

    kaay: glad it sounds like the drug is working and your liver enzymes and tumor fever are decreasing. Thinking and praying about you.

  • hartrish
    hartrish Member Posts: 290
    edited October 2017

    lisamarie: sorry to hear your news but it sounds like your treatment worked. Did they say what low dose chemo you would be on? Sending positive thoughts for a great scan report

  • LisaMarie67
    LisaMarie67 Member Posts: 10
    edited October 2017

    Thank you hartrish. My onc said he wasn't sure which chemo he was going to use. That is one reason he is sending me to Duke for a second opinion.

  • Rondee
    Rondee Member Posts: 5
    edited October 2017

    Hi,

    Think I posted before, but can't remember, I have TNBC stage 4 diagnosed back in April 2016' original TNBC stage 1 diagnosis back in 2011, double mastectomies, FEC chemo, was ok for 41/2 years, then BAM! I was on Gemzar and Cisplatin! Then had 27 rounds of rads, did well for 8 months, wasn't even on chemo, then is recent pet scan show significant progression! ORiginally my cancer was always left side, it now has spread to my right, multiple nodes in lungs! So I am now on my 3 day of Xeloda! sure hoping it will do something! Has anyone had great success with this drug

  • kaylynne
    kaylynne Member Posts: 143
    edited October 2017

    Hi Diana,

    I only have experience with AC and Taxol as I was diagnosed TNBC mets to liver in July 2017, but I wanted to say hello to a fellow TNBC and I'm sorry you are here. Was the mets originally to your lung? My onc hasn't mentioned radiation. I wonder when and why that is used as treatment?

  • mike3121
    mike3121 Member Posts: 280
    edited October 2017

    Rondee, my wife is triple negative when her estrogen positive turned with numerous mets to her spine. However, after a number of months on Xeloda her last PET/CT scan showed the smallest mets were gone and the rest with reduced SUV. Xeloda has some very painful side effects though, the most common are Hands and Feet and tiredness.

    Xeloda is slow acting and I would have thought Taxol would be the next treatment to really hit the cancer hard. Oh well, what do I know.

    MikeW.

  • rlk58
    rlk58 Member Posts: 150
    edited October 2017

    Hi all,

    Thank you for posting information on new drugs.I had a liver biopsy on Tuesday and my doctor just called me.I am sitting by myself and I don’t know what to do besides cry.My mastectomy was March 22 and I had a chest wall recurrence before radiation.Now I have some enlarged lymph nodes and maybe 5 liver tumors.I had a lymph node grow and turn out to be her 2 positive am

    Currently getting Herceptin and Perjeta every three weeks.My Doc is starting me on Xeloda.I have no symptoms and my liver enzymes are good.I am so happy to read everyone’s positive stories.

    Rhonda

  • kaayborg
    kaayborg Member Posts: 576
    edited October 2017

    Rhonda, that is fantastic that a tumor expressed her2. I am hoping mine will do the same. My MO said that would be the best news I might receive from my recent liver biopsy. Let that be hope for you.

  • rlk58
    rlk58 Member Posts: 150
    edited October 2017

    Sorry Kaay,

    I have triple negative then I had a lymph node grow during treatment which turned out to be her 2 positive.

    I just had the liver biopsy and am unsure of receptor status.Praying for good results for you.

    Rhonda

  • rlk58
    rlk58 Member Posts: 150
    edited October 2017

    Hi Kaay,

    I went to Dana Farber in Boston Friday and they have so Manyclinical trials for triple negative.The oncologist is going to test my liver tumor for genetic mutations.Its a long shot-five percent chance a treatment could match but who knows what the future will hold. I will be starting Xeloda soon.

    Rhonda

  • Swabisht
    Swabisht Member Posts: 1
    edited October 2017

    Hello everyone,

    My mother is a 54 yrs old with Triple negative breast cancer stage IV with liver brain bone mets.

    She was first diagnosed in 2013 with EṚ +ve, DCIS , Stage 1 with right mastectomy done. And 4 cycles of CT regime. and Femara for 2 years

    But again got relapsed with triple negative and stage 4.

    She has undergone cisplatin,paclitaxel, capecitabine, gemcitabine, eribulin, cyclophosphamide mostly all the available regimes.

    Latest she is on Avastin of which 1 cycle is done.

    But today she suddenly noticed her chin and lips going numb.

    She is almost bed ridden as the C in her hip bones are Troubling her and not able to walk sit on her own.

    Pls let us know if there are any other regimes as we have used most of them.

  • rlk58
    rlk58 Member Posts: 150
    edited October 2017

    Hello,

    Starting Xeloda real soon for liver Mets-just diagnosed.

    Hoping for good results!

    Rhonda

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