Posted on: Feb 1, 2013 12:56AM
Posted on: Feb 1, 2013 12:56AM
This is a way for us to find each other, please add your post so everyone can be found. We can discuss on this thread (hope this works out!)
Jan 6, 2015 11:32AM smiley47 wrote:
Will definately keep you in my thoughts and prayers, I totally understand the anxiety you are going theough.
Jan 6, 2015 01:14PM ReadingMama wrote:
B - ((((hugs)))) for an anxiety free scan and good results.
Jan 6, 2015 02:24PM keldel wrote:
Best wishes for a good scan. Sending love and positive thoughts your way.
I get the anxiety with them too. (((((HUGS)))))
Jan 7, 2015 05:42PM Adnerb wrote:
BarbDenise, hope your scan went well!!!
Kelly: Lotusblossom posts here, I'm sure. I did just see an update on tnbcfoundation.org. She has been living with TNBC mets for more than 5 years and has had NED for almost a year now.
Jan 7, 2015 08:31PM keldel wrote:
Hello BarbDenis, just checking in - I know sometimes one has to wait a few days to get the report. Hoping it went well,
Thanks Adnerb about Lotusblossom! I do follow her as I find her story inspirational. Sounds like she has a good oncologist and was a good patient to be persistent. (Sometimes my husband says, "why do you always have to challenge the doc?", S/he went to school for this. I say because it gets them to look at me as a person, not just a "case". It also helps me to buy into the recommended treatment more.) I believe LotusBlossom was stage iv from the first dx too.
Jan 10, 2015 11:47AM lotusblossom wrote:
I was diagnosed with mets from the get-go in June 2009. At the time of diagnosis, my mets were so extensive that the PET scan report was 3 pages long. My onc told me I looked like I had been in a radioactive accident. Mets included axilla nodes, neck nodes, hilar and mediastinal nodes, lungs, biliary tract, spleen, pericardial sac, pancreas,spine, muscles and soft tissue.
I started treatment with Xeloda/Gemzar for 8 months. Initially there was some response but then eventually progression. I was switched to Caelyx(Doxil?) which failed. I then was switched to Taxol for 16 months. Again, initial response to progression. Then I was switched to Navelbine as a last resort. Navelbine kept me stable for 20 months. Then, quite suddenly, I began to show rapid response which brought me to NED. That was in February 2013. I have been without treatment since.
Throughout my treatment, I never took more than a couple of weeks of chemo holiday and was diligent in all health matters. I exercised regularly and continued to work until the day my employer forced me onto disability (that's a whole other story).
It has been almost 6 years since my stage 4 diagnosis. I am doing well.
Here is a video that I did with the Canadian Breast Cancer Network called "Living Legacy". We are 3 participants in the video, 2 of us are stage 4 TN. I am the red head with the Chinese name, which in English means lotus blossom. I hope the link works.....
Jan 10, 2015 12:17PM keldel wrote:
Thank you so much for sharing. I really appreciate knowing the details.
Jan 10, 2015 12:22PM smiley47 wrote:
Great you made it over to the group, thank you.
Jan 10, 2015 08:31PM ReadingMama wrote:
lotus, thank you so much for sharing your story! Very inspirational and hopeful for me. I have not heard of a TN over 5 years, so that is very exciting.