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Sep 18, 2019 06:09PM
rajae - I also didn't have PCR which is why my MO offered Nerlynx. I saw no reason to not try it, worst case scenario if I had bad SEs and couldn't tolerate it I would just stop. I have been taking it with little issue. The data from the Nerlynx trial wasn't the best -- not only was the benefit small, but there were all kinds of statistical issues with the way the trial was stopped and then picked back up years later. Further data analysis showed that HR+ women got significant benefit, and bear in mind that most of the women on the study did not have neoadjuvant chemo so there was no telling if they would have had a PCR from chemo alone; with PCR the odds of recurrence are so low that any extra therapy is unlikely to get it any lower. As I did not have a PCR, there is obviously room to reduce my odds of recurrence lower, and even though I'm not thrilled with the quality of the Nerlynx data, we can only make decisions on the data we have and the data we have says it will probably help. In my mind, if it might help and it seems like it's not hurting, and my insurance is covering it, so I see no compelling reason to not finish it. Your KI67 dropping is a pretty good sign. I didn't get a KI 67 test, but my tumor did drop from grade 3 to grade 1 after chemo, and my tumor was no longer testing Her2+. I do wonder sometimes why I'm bothering with any further Her2 treatment, but according to my MO the Her2 is the aggressive stuff.
I don't understand where your MO got the idea you wouldn't respond to Kadcyla. I know of no data linking response to KI67.
Also, the Genentech website would have been talking about all women who got Herceptin, every case is different. If you had a bigger tumor, or were lymph node positive, or were HR-, or your tumor grew on chemo, etc., your odds would be worse. If you had PCR your odds would be better. I think their 25% number is out of date.
You can check out the Starting Nerlynx in May, 2019 thread for more discussion of Nerlynx.
12/14/2017, IDC, Right, 3cm, Stage IIIA, Grade 3, ER+/PR+, HER2- (FISH)
1/1/2018 Arimidex (anastrozole)
1/2/2018 Zoladex (goserelin)
2/14/2018 Ibrance (palbociclib)
3/20/2018, IDC, Right, 3cm, Stage IIIA, 3/18 nodes, ER+/PR+, HER2+ (FISH)
3/28/2018 Perjeta (pertuzumab)
3/28/2018 Herceptin (trastuzumab)
3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)
8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
10/22/2018 Whole-breast: Lymph nodes, Chest wall
12/21/2018 Arimidex (anastrozole), Zoladex (goserelin)