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Re: For those with mets- what would you want the world to know
Hello Kristin,
One thing I think what people need to undersand is that stage IV-metastic disease means we are never done with treatment. I want to say never. I know that there have been a few people on this site who have not been receiving any treatment; Steph and AndiBB, I believe. How wonderful for them and rare.
Otherwise, treatment through either pills or IV infusions become part of our schedules. Blood work and scans become part of our schedules just as we would schedule in date nights, time with our families and friends, church, work, etc... So, when people inquire, "Are you done with treatment now?" The answer unfortunately is no.
I also concur with everyone else about the issue of donating your money to research centered organizations and being your own advocate.
I appreciate you doing this, Kristin. As you are such a young woman with a little one, your story will be most heart breaking for them to hear.
Take care,
Jackie
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10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
10/21 Remain on Subcutaneous Herceptin (Hylecta)
11/21 CT showed possible lung mets. Was told to wait and see until scan
1/22 CT shows continued growth
03/22 Lung Biopsy said sample was too small but nodules keep growing and IR is convinced that it is indeed cancer
04/22 Oncologist referred for consult for a transbronchial biopsy. This does not sound pleasant
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