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Topic: Her2 positive brain metsatisis

Forum: Caring for Someone with Stage IV or Mets —

A place where family members, caregivers, and loved ones of people having a Stage IV (metastatic) diagnosis can share, discuss, and support one another through the tough times unique to this diagnosis.

Posted on: Sep 8, 2019 11:24PM

Jb513 wrote:

Hello my wife was diagnosed with brain mets 1 1/2 years ago. She had whole brain radiation at first diagnosis she had 20 small lesions of cancer and 1 larger area. It worked but only for about 6 months in about 1 year time she's had gamma knife treatment three times as new spots have popped up...The doctors told us that the brain mets are not being controlled by the herceptin and perjeta so they switched her to kadcyla... I was wondering about this drug if / what side effects and if it crosses the blood brain barrier. So hopefully she doesn't have to go through gamma knife treatment as much... What sucks is there is no cancer anywhere else in her body just her brain. She's young as well only 30 years old 28 at diagnosis. She's got alot of fight but its definitely on her mind We have 3 kids too so she's got so much to fight for but as things keep progressing and nothing seems to be working. I can definitely see it draining her emotionally and physically...

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Sep 9, 2019 12:28AM illimae wrote:

Sorry, I don’t know about kadcyla (I’m still on H&P myself) but I wish you and your wife the best. Did your neuro rads onc mention the possibility of kadcyla through an ommaya port as an option from control of the brain mets?

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine)
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Sep 9, 2019 10:00AM - edited Sep 9, 2019 10:00AM by LoriCA

I'm so sorry about your wife jb513, it's a tough diagnosis at any age but she is so young.

It's my understanding that Kadcyla does not cross the BBB, but this article says there is new evidence that it actually may cross

There are a few trials right now trying to find a drug that does cross the BBB for HER2+ since we have a very high risk of brain mets. Neratinib plus capecitibine has shown good success in the Phase II TBCRC 022 trial. Tucatinib plus Herceptin and capecitibine has shown promise in heavily pretreated people (must have already had Herceptin, Perjeta, and Kadcyla) in the HER2Climb trial. HER2Climb isn't specifically for people with brain mets, but they discovered during the trial that the triplet combo appeared to cross the BBB. You might want to look into those drugs and trials.

IBC Stage IV de novo - mets throughout skeleton (bones & now bone marrow), liver, dozens of distant nodes, chest wall/pec muscle, skin, tumor in brachial nerves, thyroid, polycythemia from bone marrow involvement Dx 9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC) Chemotherapy 9/25/2017 Taxol (paclitaxel) Targeted Therapy 2/5/2018 Perjeta (pertuzumab) Targeted Therapy 2/5/2018 Herceptin (trastuzumab) Chemotherapy 11/25/2018 Taxol (paclitaxel) Radiation Therapy 1/29/2019 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Kadcyla (T-DM1, ado-trastuzumab) Targeted Therapy Enhertu (fam-trastuzumab deruxtecan-nxki)

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