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Dec 11, 2020 10:25AM
Dec 11, 2020 11:25AM
A hearty hello to each of you and the Moderators. I joined after my 2017 diagnosis and initially participated however I've quiet after waffling between so many setbacks and trying to regroup during remissions.
In a nutshell, I was diagnosed in 2017 with TNBC and had my double mastectomy that year after 5 months of chemo. 2018 was full of radiation and complications (radiation pneumonitis) and multiple additional surgeries due to cellulitis. In January of 2019 a routine MRI of the brain revealed 7 lesions which had probably seeded earlier. They were all obliterated with gamma knife surgery. I was well until Oct of 2019 when I experienced significant saddle anesthesia and numbness and tingling down the back of my legs into my feet. I was diagnosed with leptomeningeal disease and the docs said I'd have three months to live without any treatment at all. So of course we started radiation which I had to my lumbar and thoracic spine. In Jan 2020 I had an Ommaya port placed in my brain and started with intrathecal Topotecan and systemic Tecentriq. I did well until August of 2020 when I had four new lesions in my brain.
I continue with the IT Topotecan every four weeks however my MO changed my systemic treatment to Trodelvy. It's been tough. I was started on the recommended dosing of day one and day eight of a 21 day cycle but after the first cycle I was hospitalized for severe neutropenia ( WBC was .4 and ANC was .2), as well as low grade fever (100.2) and a nasty hive like rash that went from the back of my knees all the way up my trunk to the back of my arms. It was itchy and painful. The upside is that it never came back with future doses. I have severe constipation the first week after treatment (fiber foods and miralax helps) followed by diarrhea the second week.
Because Trodelvy shows apparent promise for TNBC patients, my doc had my continue it but changed my dosing to every 14 days. That has worked out better though I still have side effects. I am tired, have a headache and weakness. My hands shake to the point where I could not feed myself soup without spilling. I have lost my hair and have dark blue nails. My skin is dry and seems darker in my knuckles and around my face and neck. It's all okay if this helps me to get back into remission. The first week after a dose is tough and I seem to bounce back with more energy the second week.
My next set of scans are on Dec 29 so we'll see if the drug has done its job. I'm optimistic that it will.
Wishing each of you success!
5/11/2017, IDC, Left, 3cm, Stage IIIA, Grade 3, 0/7 nodes, ER-/PR-, HER2-
6/1/2017 AC + T (Taxol)
11/27/2017 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
3/5/2018 Whole breast: Breast, Lymph nodes
8/31/2018 Reconstruction (right)
9/26/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
1/31/2019, IDC, 3cm, Stage IV, metastasized to brain, Grade 3, 0/7 nodes, ER-/PR-, HER2-
2/7/2019 External: Brain
3/21/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
10/16/2019, IDC, 3cm, Stage IV, metastasized to other, Grade 3, 0/7 nodes, ER-/PR-, HER2-
8/28/2020, IDC, 3cm, Stage IV, metastasized to brain, Grade 3, 0/7 nodes, ER-/PR-, HER2-