Triple Negative Stage IV

18889919394103

Comments

  • Joslyntriplenegative
    Joslyntriplenegative Member Posts: 4
    edited March 2019

    put her on the RSO oil.

  • hartrish
    hartrish Member Posts: 290
    edited March 2019

    joslyn: I have not taken RSO oil.

  • chronquist22
    chronquist22 Member Posts: 7
    edited March 2019

    Anyone participating in the Pilot Study of Paclitaxel Plus Pembrolizumab (Keytruda) in Metastatic HER2-Negative Breast Cancer (PePPy) clinical trial?
    (ClinicalTrials.gov Identifier: NCT03018080) https://clinicaltrials.gov/ct2/show/NCT03018080

  • hartrish
    hartrish Member Posts: 290
    edited March 2019

    chronquist:not me. Why do they only have one trial site for some of these trials? Wish they would be available over several areas in the country(ies).

  • Buddhahead
    Buddhahead Member Posts: 19
    edited March 2019

    I am not in a clinical trial, but my recurrence was diagnosed as TNBC and I've been stage IV for 7 years. I'm on Keytruda and taxol, but not in a trial. My onc. was able to get it for me. So far, so good. Are you in it?

  • chronquist22
    chronquist22 Member Posts: 7
    edited March 2019

    Has anyone ever had pain in their abdomen that doesn't allow you to get out of bed for 4+ days, a couple days after chemo?

  • hartrish
    hartrish Member Posts: 290
    edited March 2019

    chronquist: I have not had pain like that. Is it in your liver area of abdomen or somewhere else?

    Buddahead: I am not in a trail

  • hartrish
    hartrish Member Posts: 290
    edited April 2019

    FDA Pipeline: Designations for Myelodysplastic Syndromes, Triple-Negative Breast Cancer, AML, and EBV-Associated Cancers

    Fast Track Designation for INT230-6 in Relapsed or Metastatic Triple-Negative Breast Cancer

    The FDA granted Fast Track designation to a development program evaluating INT230-6 for the treatment of patients with relapsed or metastatic triple-negative breast cancer who have failed at least two prior lines of therapy. INT230-6, designed for direct intratumoral injection, comprises two proven, potent anticancer agents and a penetration enhancer molecule that helps disperse the drugs throughout tumors and diffuse into cancer cells.

    INT230-6 is being evaluated in a phase I/II clinical study in patients with various advanced solid tumors. In preclinical studies, INT230-6 eradicated tumors by a combination of direct tumor kill and recruitment of dendritic cells to the tumor microenvironment that induced anticancer T-cell activation.

    https://www.ascopost.com/News/59960?email=b8c2443bbcef3d7e56140fb66a2f867cc7a33e0faa2c40a5140dca03fe4fb3ac&utm_medium=Email&utm_campaign=TAP%20EN

  • hartrish
    hartrish Member Posts: 290
    edited April 2019

    Lead Product: INT230-6

    Intensity's lead product, INT230-6, is a formulation consisting of an amphiphilic cell penetration enhancer molecule combined with cisplatin and vinblastine. INT230-6's three agents are in a fixed ratio. The penetration enhancer facilitates dispersion of the two drugs throughout injected tumors and enables increased diffusion into cancer cells. Nonclinical safety studies showed no findings following drug injection into healthy tissues. Historically physicians administer the two active drugs comprising INT230-6 by intravenous (IV) infusion to achieve a systemic blood level at the limit of tolerability. Unfortunately, dosing drugs IV delivers only a small amount with a low concentration at the tumor site. This approach especially for late stage cancers is not highly effective and often quite toxic to the patient. Past attempts at direct intratumoral injection with chemotherapeutic agents have not shown the ability to treat the injected tumor, non-injected tumors or micro-metastases. This lack of efficacy for local administration is possibly due to poor dispersion and a lack of cell uptake of the agents.

    Due to the use of a novel cell penetration enhancing agent INT230-6 treatment has demonstrated strong efficacy in animals having large tumors. Our in vivo, pre-clinical data shows that INT230-6 thoroughly saturates and kills injected tumors. In addition, the drug induces an adaptive (T-cell mediated) immune response that attacks not only the injected tumor, but non-injected tumors and unseen micro-metastases. Cured animals become permanently immunized against the type of cancer that INT230-6 eliminates. INT230-6 has shown good long-term stability when stored properly. The drug is now in clinical testing in the U.S and Canada in a Phase 1/2 trial.


  • Parrynd1
    Parrynd1 Member Posts: 343
    edited April 2019

    Thanks for posting this info

  • hartrish
    hartrish Member Posts: 290
    edited May 2019

    Triple Negative Breast Cancers Can Adopt Reversible State That is Resistant to Chemotherapy

    http://www.hopkinsbreastcenter.org/artemis/201905/15.html

  • hartrish
    hartrish Member Posts: 290
    edited May 2019

    Preventing Triple Negative Breast Cancer From Spreading

    http://www.hopkinsbreastcenter.org/artemis/201905/11.html


  • thrivingmama
    thrivingmama Member Posts: 133
    edited May 2019

    thanks Hartrish! interesting and promising! how are you doing?

  • hartrish
    hartrish Member Posts: 290
    edited May 2019

    thrivingmama: I am doing well. Started my 30th cycle of carbo/gemzar this week. So far keeping my tumors stable. CA 27.29 staying between 55-65. Last week’s MRI showed stable tumors but three were more noticeable, not bigger. Maybe be just a technique issue because it was done on a different MRI machine and of course always a different radiologist who reads the scans. So just going to do TMs every cycle and repeat MRI in 12 weeks.

    I feel good overall. Just some fatigue but fight through that. Just praise God this therapy has worked for 22 months.

    I do research for clinical trials every week. once this treatment stops I am planning on doing a Caris test to look for mutations and amplifications. Haven’t had one in past.

    I am looking at personalized vaccine trials as well as in situ tumor trials with immunotherapy. Something different then chemo since I can do chemo if cancer gets out of hand. Will have to see what my onc says as well.

    How are you doing

  • thrivingmama
    thrivingmama Member Posts: 133
    edited May 2019

    Hartrish - sounds like things are going well for you! Glad to hear it. I am good as well. Since I restarted GemCarbo, my LFTs and tumor marker (I use 15-3) have come down and continue to do so. I am so thankful that it's working so effectively again. I will likely rescan in about a month or so.

    I've had Caris when I was early stage. Foundation One when I was diagnosed mets. The other test I have been hearing about lately is Tempus. They can be very helpful in determining which treatments may or may not be the best option for you.

    I am very interested in immunotherapy and trying to keep my eyes on the options for that as well. CAR-T, vaccines, etc. Hoping I can continue with GemCarbo working well with little SEs as the immunotherapy options continue to evolve

  • UserN
    UserN Member Posts: 11
    edited June 2019

    colloidal silver might be a potential alternative agent for human breast cancer therapy.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2996348/

  • Rociteamo
    Rociteamo Member Posts: 2
    edited June 2019

    Hello there. How are you?

  • thrivingmama
    thrivingmama Member Posts: 133
    edited June 2019

    (Cross posted in are you currently (or have you been) in a clinical trial and people with liver mets threads)

    Hi everyone. Posting here because this group's collective knowledge and wisdom is incredible. Hoping some of you may have some nuggets of info or suggestions that will guide my next step. I've included a brief history at the bottom of my post, in case that's helpful.

    I just found out that Gem/Carbo is no longer working. My PET/CT shows two new liver tumors and previously inactive or less active bone mets are very active again. My cancer seems to behave unexpectedly and aggressively, so I want to move onto a next line quickly. I didn't start chemo last week, as I don't want to jeopardize my eligibility for a trial, should I find one that is promising in the next few days. My questions:

    - For those of you with TNBC liver mets, what chemo did you use as a next line after Gem/Carbo? Was it successful? It seems consensus is that I should do Eribulin (Halaven) next. Experience with that? (And did you lose your hair?)

    - Anyone know of any interesting immunotherapy trials? I am not currently a candidate for the NCI CAR T trial, as my liver met is not easily resectable. I am looking into both the MSK CAR T targeting mesothelin and the Fred Hutch CAR T ROR1 studies. What am I missing? I don't want to do any PD1/PDL1 drugs due to a MDM2 mutation I have that is associated with hyper progression on Keytruda.

    - Other ideas? My current plan is to biopsy before starting a new treatment, but I will find out this week what the wait time for a biopsy is.

    Brief history:

    - Dec 2016 diagnosed (just postpartum) Stage 3 ER/PR+, HER2-

    - AC - Taxol. Mastectomy. Radiation + Xeloda (as radiation enhancer). Ibrance/faslodex/lupron (due to remaining live cancer at time of mastectomy)

    - Jan 2018 2 liver mets. TNBC

    - Gem/Carbo got me to NED by April. Scans clear July and Oct, so I stopped chemo.

    - Jan 2019 cancer back in my liver and spread to bones.

    - Restarted Gem/Carbo. April scan showed metabolic resolution in liver. All bone spots less active or inactive

    - This week shows 2 new liver spots and bone spots active again

    Thanks so much to anyone with an idea to offer. This group is incredible

  • mike3121
    mike3121 Member Posts: 280
    edited June 2019

    My wife has had excellent luck with eribulin but bad luck in general. Her ER/PR+ turned TNBC while taking xeloda. Next on to eribulin for her extensive bone only mets. It worked wonders with 2 NED PET scans and got 3 months off, no chemo. During the 3 months off it went to her brain, the dura. She had several severe seizures, ambulance, brain operation, WBR, etc.

    She's back on eribulin. Normally eribulin doesn't pass through the Blood Brain Barrier (BBB) however, it does if you'd have had Whole Brain Radiation (WBR). Well it says so on several scientific reports.

    Eribulin SE's are fatigue, lot's of fatigue. Some hair loss, but not all, more like thinning. Red and white blood count dives (though my wife hasn't had that problem).


  • hartrish
    hartrish Member Posts: 290
    edited June 2019

    thrivingmama: so sorry to hear of your progression. Did you have any other mutations/amplifications that you might search for a targeted drug? I haven’t been on halaven so I can’t help with that.

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited July 2019

    At UMD and Cleveland Clinic they are using hyperthermia (heat) on tumors... I do not know if it would help in your situation but it seems nontoxic/ pretty well tolerated.

  • Momchichi
    Momchichi Member Posts: 98
    edited August 2019

    Hi everyone,

    This thread has been quiet lately but I wanted to introduce myself. I just had a second bone biopsy to double check my receptors and my lumbar met is triple negative. My oncologist is aware of some observational studies that found HER2 can be amplified by neoadjuvant chemo so now I wonder if I just had triple negative only all along. I’m participating in an oligometastatic clinical trial for radiation and am waiting to be sorted into either the stereotactic/ablative arm or the standard of care/palliative radiation arm. After that, I’ll be on Xeloda until it stops working so I’ll hop on over to that thread and check it out. Bone met was PDL1 negative so I’m bummed about that but my dr said we’ll recheck future Mets since bone is notoriously hard to get accurate results. Hope everyone still posting here is doing well and thanks for taking the time to read/respond!



  • ucfknights
    ucfknights Member Posts: 91
    edited August 2019

    i would love to hear some stories of you ladies 5+ years with stage iv tn. Thanks!

  • Buddhahead
    Buddhahead Member Posts: 19
    edited August 2019

    Thrivingmama--I was NED for 5+ years then in 2017 bone mets reappeared. I started Ibrance and FAslodex, but then had progression. It spread to liver and switched kinds from ER/PR+ TNBC. That was last October. I started Gemzar/Taxol, but couldn't really tolerate Gemzar -- just very poor quality of life, so I've been on Taxol since last October (2018). Then in January (2019), my Onc. got approval to use Keytruda from Merck, the manufacturer, for compassionate use. No cost to me. Insurance had denied it. I now get Taxol and Keytruda. On two weeks, off one week. I'm not in a clinical trial, but am being treated as I am, ie: scans every 3 months. As of the last two scans, I got some decrease in size and then stability. I just had a scan today and another tomorrow, so we'll see what's what later in the week. I found this article about Keytruda and hyperprogression: https://www.cancertherapyadvisor.com/home/cancer-topics/general-oncology/treatment-related-hyperprogression-concerns-continue-to-mount/

    I did have the foundation one blood test and biopsy and while I have low PD-L1 expression I believe I have moderate microsatellite instability, which are both indicators for Keytruda. For me, so far, it's working. I wouldn't automatically rule out Keytruda or Tecentriq (the other immunotherapy, which is approved by the FDA, BTW). The hyperprogression, while evident sometimes, doesn't seem to be highly likely. I believe the current protocol for TNBC is Abraxane (taxol with albumin) and Tecentriq.

    When I discussed other chemotherapy options with my dr. in June, the other drugs she mentioned were Doxirubin, Havolen, and Abraxane to replace Taxol, if the SE got to be too much. I have had to dose reduce taxol by as much as 50% mostly due to neuropathy.

    My Onc. did say even I showed NED, that she would keep me on something. I think the history of TNBC is that it's agressive and can come back quickly, so she wants to stay on top of it.

    That and stomach issues, nausea, acidic stomach, neuropathy and fatigue (due to low WBC and RBC) have been my biggest SE. Also, I've been using cold caps since October to keep my hair. Otherwise, I'd have none on my head for sure! They work, but it takes work to do it.

    I hope this helps you some. Let us know what you end up doing.

    :-)

    Lynn

  • thrivingmama
    thrivingmama Member Posts: 133
    edited August 2019

    Hi Buddahead - Thanks so much for taking the time to respond and share your story and insights.

    Since I made that post, I started Eribulin. I have had 6 cycles and we are hoping that I am getting a good response (based on labs, we are hopeful). I have scans this week, so that will provide more info.

    Sorry to hear about the side effects, but I am glad to hear you have been able to keep some hair!

    Thanks for sharing the article about hyper progression. The research/study behind that article is the reason I am not so keen on keytruda, as I have both of the mutations associated with hyper progression.

    Thinking of you and your scans this week. Hoping you continue to get a good response with your combo. Keep us posted.

  • hartrish
    hartrish Member Posts: 290
    edited September 2019

    Well, carbo/gemzar have quit working after 23 months. I have been so blessed to have been on carbo/gemzar for so long with minimal side effects. Aug 6th MRI showed progression of liver tumors.

    Had liver biopsy Sept 4th and sent tumor tissue to Caris for testing. Hopefully wil have results first part of Oct. I also had a Quardant test performed which only showed a PIK3CA E81K and PTEN alterations. Hoping the Caris test shows more.

    Started Xeloda (3,000 mg daily) Sept 11th on a 2 week on, 1 week off schedule. Did well on first cycle with few side effects. Nausea (taking zofran and Ativan), fatigue, mouth sores (salt water rinse, magic mouthwash). Feet are a little red but not tender or sore, hands are good. Hoping 2nd cycle goes well.

    Next scan is Nov 20th. Praying the xeloda works well with little SEs

  • ucfknights
    ucfknights Member Posts: 91
    edited September 2019

    how did you ladies found your mets? Thanks!

  • JoynerL
    JoynerL Member Posts: 1,392
    edited September 2019

    I found my bone (only) mets quite by accident, when I had a CT scan of my chest in Feb 2017. They found no problems with the original concern in my chest but breast cancer which had metastasized after 26 years in apparent remission.

  • hartrish
    hartrish Member Posts: 290
    edited September 2019

    My TM went up and I had scans and found mets in liver at that time. Had no symptoms at all and my liver was diffuse with cancer.


  • thrivingmama
    thrivingmama Member Posts: 133
    edited September 2019

    hi hartrish - just wanted to say that I'm sorry to read about your progression. I hope that Xeloda does wonders at slowing the cancer down and that the SEs are minimal. I hope you get some helpful/actionable data out of the Caris findings. Thinking about you