Where do you get treatment ideas?

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nnguyen
nnguyen Member Posts: 57
edited May 2019 in Stage IV/Metastatic Breast Cancer ONLY

Hello,

After this current combination and we are out of new drug to try for my wife (Stage IV, lung, hip, and spine). We are trying to get into a clinical trial but not sure if we could get-in due to perpetually low blood count.

I regularly read from the below sources. Where do you get conventional treatment ideas?

SABCS, ASCO, ESSO, Clinicaltrials.gov, AACR, MedlinePlus, PubMed, BiomedCentral, PracticeUpdate, Researchtopractice, Elsevierjounalalerts, Jama, Her2support.org, Breastcancer.org

Many thanks for your input.

Nguyen

Linda's Treatment History:

02/2019 - current: bone met discovered, radiation to hip and neck, denosumab, no other treatment, waiting for clinical trial.
08/2018 – 02-2018: Xeloda and Herceptin, have to reduce Xeloda dose several times
04/2018 – 08-2018: restart T-Dm1

02/2018: biopsy of lung: Her2+++, ER+, PR--; genetic profiling numerous changes, amplification, particularly PI3K
12/2017 – 04/2018: Pertuzumab + Herceptin
03/2017 – 12/2017: Herceptin + Fulvestrant (take a break from T-Dm1)
07/2014 – 03/2017: T-Dm1
02/2014 – 06/2014: Everolimus (5mg), Exemestane, Herceptin
08/2013 – 01/2014: Femara, Herceptin
12/2012 – 07/2013: 4mg estradiol, Herceptin
08/2012 - 12/2012: Fulvestrant 500mg, exemestane, Herceptin
05/2012 - 08/2012: Everolimus (10mg), Exemestane, Herceptin, Zometa
08/2011 - 05/2012: Herceptin, Tykerb, Femara, Zometa
08/2010 - 08/2011: Herceptin, Femara, Zometa
09-2009 - 08/2010: Herceptin and estradiol (6mg)
09/2008 - 09/2009: Herceptin, Fulvestrant, Femara
03/2008 - 09/2008: Herceptin, Exemestane, Oophorectomy
01/2005 - 03/2008: Herceptin (readded) and Femara
07/2004: It returned again via several small nodules in the lung
10/2002: NED (via CT and CA27.29)!
10/2001 - 01/2005: Femara, Fosamax
12/2000 - 10/2001: Herceptin and Navelbine
12/2000: lung metastatic was diagnosed (a few small nodules)
02/1998 - 12/2000: Daily Tamoxifen
05/1997 - 04/1998: Modified Radical Mastectomy, many cycles of chemo regiments (CAF, Taxol,
Carpoplatin, Thiotepa, Navelbine, Taxotere), high dose chemotherapy with autologous stem-cells
rescue, and radiation
05/1997: Diagnosed with BC stage 3A, ER+, PR+, HER2+, poorly differentiated, nuclear grade 3.

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited May 2019

    Nguyen,

    Linda is lucky to have you! I don't have any insights into HER2 disease, however the PI3K mutation could perhaps be sensitive to Alpelisib, which should be FDA approved shortly. And she has not had any CDK4,6 inhibitor, Abemaciclib is the strongest of those and they are super-powerful drugs. I presume she has had multiple opinions? What is the clinical trial you are waiting on? She has had a remarkable run of almost 19 years, and hopefully still has many more to come!! The ASCO 2019 meeting abstracts will be online May 15!!

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  • nnguyen
    nnguyen Member Posts: 57
    edited May 2019

    Thank you Cure-ious, we were waiting for SYD-985 trial, but just found out she couldn't qualify due to low white count, in fact they couldn't treat her with Trastuzumab+Eribulin (Halaven) right now due to that. I am not aware of any CDK 4/6 drug that is approved or fast track for Her2 Positive patient. There are three (palbociclib, ribociclib, and abemaciclib) CDK 4/6 drugs that are approved for Her2Negative. There are two positive abstracts about using themfor Her2-Positive, so I am planning to talk to her Onc about off label use. PI3K mutation implies sensitive to Affinitor (Everolimus), but that didn't seem to work for her. I am hoping SYD-985, Margetuximab, and particularly DS-8201 will be approved soon. But right now, the worry is why her count continues to go down a month after radiation.

    Thank you all for reading.

    Nguyen

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