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May 7, 2019 05:57PM
Michelemk, please don't ever worry about being direct with me, I'm usually quite direct myself haha! I have no problems talking about my diagnosis and treatments.
Yes, I was Stage IV de novo. I seem to have a particularly extra-aggressive and extremely stubborn version of IBC, lucky me. It was spreading so fast and had already done so much damage when I was DXed that they didn't think I would pull through and told my husband to call my family in. I made my peace with it then, although I was so sick and in a fog from morphine and fentanyl that it was all a blur. I made a spectacular recovery only to have it start running wild a couple months later, and now I'm dealing with resistance after resistance after resistance. Despite the setbacks I'm still doing so much better than I was 18 months ago, and better than I was just four months ago, so I'm very grateful for every day I get. The truth is, my emotions are all over the place. It's hard not to get frustrated some days when they haven't even been able to get me stable yet. Being HER2+ I was hoping to have a nice long run on Herceptin. But I'm otherwise healthy - I have several friends in my metastatic support group who have much less cancer than I do (fewer mets in fewer locations) who are in much worse physical shape than I am, so I know I'm very lucky with how well my body has been handling everything and I still have a lot of fight left in me. :)
We have quite a few here who are NED, so don't let us Stage IV people scare you. It's just that we have more to talk about so we can get chatty. ;)
ADDK - the return of pain (just minor right now) and now the look of my skin has me concerned that the benefit of rads only lasted 3 weeks. It was great while it lasted, but it took so long to see any kind of response that by the time we were seeing good progress, it was time to stop and I wish we could've done more. If nothing else, it bought me time to try a different chemo drug, although I hate this waiting for scans before we can decide on my next treatment. I have the MRI tomorrow, then the PET/CT in two weeks. Once I get those new baseline scans we'll start the fun all over again.
Amarantha how are you doing? I know you're back in the hospital, any luck on finding the source of your recent problems? It makes me sad to think of you lying there in so much pain. Sending you hugs.
IBC Stage IV de novo - mets throughout skeleton, liver, distant nodes, chest wall, skin, tumor in brachial nerves.Still trying to get it to slow down.
9/8/2017, IBC, Right, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC)
9/25/2017 Taxol (paclitaxel)
2/5/2018 Perjeta (pertuzumab)
2/5/2018 Herceptin (trastuzumab)
11/25/2018 Taxol (paclitaxel)
1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall
Kadcyla (T-DM1, ado-trastuzumab)