HER2 Support Group Forums - View Single Post

KristinSchwick · 12-30-2011, 05:54 AM

Kim,
Thanks for your private message and I am so happy to hear your mom is doing so well! I knew that bone mets are hard to measure, but I guess I didn't realize that they prevent us from reaching NED. I guess it makes sense because the PET scans don't tell whether the "activity" is from a healing met or from an actively growing cancer. My doctor has said that bone mets can become "cold" on PET scan, meaning there is no activity in a previously active lesion. He didn't mention if this would then be considered NED, but by the definition of NED- I would think it would. I believe other members on the boards here have reached NED after bone mets- but please correct me if I'm wrong.
Your mom is lucky to have you- to screen all the stuff on here and present only the positives and not scare her too much. Seeking out information on a scary disease can be just that- scary.
Kristin

12-30-2011, 05:54 AM	#3
KristinSchwick Senior Member Join Date: Jun 2011 Location: Iowa Posts: 231	Re: stage 4 update dx aug 2011 Kim, Thanks for your private message and I am so happy to hear your mom is doing so well! I knew that bone mets are hard to measure, but I guess I didn't realize that they prevent us from reaching NED. I guess it makes sense because the PET scans don't tell whether the "activity" is from a healing met or from an actively growing cancer. My doctor has said that bone mets can become "cold" on PET scan, meaning there is no activity in a previously active lesion. He didn't mention if this would then be considered NED, but by the definition of NED- I would think it would. I believe other members on the boards here have reached NED after bone mets- but please correct me if I'm wrong. Your mom is lucky to have you- to screen all the stuff on here and present only the positives and not scare her too much. Seeking out information on a scary disease can be just that- scary. Kristin __________________ [B]Kristin Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes. March 2011: 6 wks rads. Mother passed, lower back pain. Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant. October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin. Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working! May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara. Dec 2012: aromasin Jan 2013: faslodex, herceptin, tykerb Jun: Kadcyla Aug: Rads to hip, then Perjeta, Herceptin & Taxotere Nov 2013: Perjeta, Herceptin, Halaven Early 2014: Affinitor, Aromasin, Perjeta, Herceptin. June 2014: Estradiol, Perjeta, Herceptin Aug 14: Tamoxofin, H & P http://kristin-notdying-blog.blogspot.com/