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kk1 · 05-02-2012, 08:49 AM

Greg;

It's counter intuitive but please let MJ know that the scanxiety is actually much less when you are scanned more frequently. If you have or had mets and wait six month between scans it's REALLY scary, after a few months your mind starts to imagine tumors "going wild". When it's every 12 weeks the anxiety doesn't build up and your mind learns to think "well it hasn't been so long so how bad can it be---I can deal with what ever is coming". I have found 3 month scans build my confidence and let's me plan and live my life better, and as I said I think my key to longevity has been always catching a met when it is small.

Also Phil and Becky are on target, ask about always being on Herceptin as it works better synergistically. Just because she develops a met does not mean Herceptin is not working. My analogy is there are multiple doors and windows for the HER/NEU cancer to enter the cell. Just because it found a back door doesn't mean you should give up and throw open the front door by discontinuing Herceptin. If someone breaks a window and burglars your house don't you still keep the doors locked? You would not say the dead bolt failed lets remove all the locks.

And finally you might want to ask about routine CTC blood testing in between scans as part of the monitoring, and I don't see you mention the ER/PR receptor status of the mets or primary.

05-02-2012, 08:49 AM	#28
kk1 Senior Member Join Date: Sep 2005 Posts: 182	Re: Treatment Question Greg; It's counter intuitive but please let MJ know that the scanxiety is actually much less when you are scanned more frequently. If you have or had mets and wait six month between scans it's REALLY scary, after a few months your mind starts to imagine tumors "going wild". When it's every 12 weeks the anxiety doesn't build up and your mind learns to think "well it hasn't been so long so how bad can it be---I can deal with what ever is coming". I have found 3 month scans build my confidence and let's me plan and live my life better, and as I said I think my key to longevity has been always catching a met when it is small. Also Phil and Becky are on target, ask about always being on Herceptin as it works better synergistically. Just because she develops a met does not mean Herceptin is not working. My analogy is there are multiple doors and windows for the HER/NEU cancer to enter the cell. Just because it found a back door doesn't mean you should give up and throw open the front door by discontinuing Herceptin. If someone breaks a window and burglars your house don't you still keep the doors locked? You would not say the dead bolt failed lets remove all the locks. And finally you might want to ask about routine CTC blood testing in between scans as part of the monitoring, and I don't see you mention the ER/PR receptor status of the mets or primary. __________________ KK1 April 2004 de novo metastatic left breast 1.5cm her2++,er+/pr+ with 2 small liver mets weekly taxotere,herceptin, xeloda Sept 2004 NED-3 herceptin, zoladex,aromasin Dec 2006 recurrence in liver Feb. 2007 liver resection left lobe removed-herceptin, zoladex, switch to Arimidex NED 16 months added zometa May 2008 new lesion in liver 15mm Tykerb/Xeloda/Herceptin July 2008 stable...yeah! Sept 2008 NED again !!! Jan 2009 fell off the wagon again spot back in the liver and fell out of menopause. Feb 2009 RFA and 2nd liver resection to remove spot ---back on the NED wagon again continue Tykerb, Herceptin. March 2009- oophrectomy added Femara and bi-annual Zometa May 2009- scans clear but suspect lung nodule June 2009- Lung VAT wedge resection to remove nodule---fungus ball not cancer!! phew Aug 2009- NED Nov 2009-scans again clear YAHOO! March 2010- scans clear continue Tykerb, Herceptin, Femara, Zometa Q6mo Nov 2009-Nov 2019 scans clear done every 6 months Feb 2020 - Fell out of the NED wagon hard! single liver lesions and large infect cyst. 3 weeks in ICU. March 2021- 5 cycles perjeta, herceptin, navelbine. lesion stable. June 2021 - 3rd liver resection to remove single liver lesion. Continued perjeta, herceptin. Nov. 2021- PET scan show 5 hot nodes near liver. 9 cycles Kadcyla June 2021- PET scan shows progression. nodes size unchanged but even more SUV uptake. July 2021- start ENHERTU Last edited by kk1; 05-02-2012 at 09:05 AM..