HER2 Support Group Forums - View Single Post - "Living while waiting"

StephN · 05-05-2009, 04:05 PM

I am taking a "page" from Andi BB's "book."

Refer to this thread if you have not read it:
http://her2support.org/vbulletin/showthread.php?t=38972

One of the later posts in that thread has Andi discussing watching her tumor markers spike and wondering if she has lost her bet that she could remain NED going off years of Herceptin therapy.

I am one of those who also has had a long enough run staying NED on Herceptin alone and have decided to plunge into the future without my trusty Vitamin H.

The reason I stopped Herceptin in the first place was because my MUGA had a drop of 9 points, so at my December 2008 consult, decided for a Herceptin Holiday. All was well in March, so am going for another 3 months' "holiday." My last MUGA had an increase by 5 points, but I would like a higher number. Normal range, but on the low side.

My brain MRI last week showed no disease there, so I go another 6 months on that one. (Like Flori - still NED in my head!) I have body and DEXA scans in June, and will assess again.

It is very hard to believe that I could actually be "cured," as this is not supposed to happen to the likes of us stage IV types. However, as Andi says, "adapt or perish," or words of that effect, according to Darwin. So, it is that I have yet another adaptation in trying to live with my main security blanket removed - yet at arm's reach should I want or need it. This feels sort of like jumping into the ocean without a life preserver ...

In the meantime, I am trying to put some order in all the files and things that just got "stashed" all during my life in cancerland. It is taking me a long time, because there is so much to go through and I can only concentrate on this for an hour or so at a time. It is like revisiting a life that was someone else's!

Sorry this is a bit long, but I wanted to explain myself a little.

05-05-2009, 04:05 PM	#1
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	"Living while waiting" - me too I am taking a "page" from Andi BB's "book." Refer to this thread if you have not read it: http://her2support.org/vbulletin/showthread.php?t=38972 One of the later posts in that thread has Andi discussing watching her tumor markers spike and wondering if she has lost her bet that she could remain NED going off years of Herceptin therapy. I am one of those who also has had a long enough run staying NED on Herceptin alone and have decided to plunge into the future without my trusty Vitamin H. The reason I stopped Herceptin in the first place was because my MUGA had a drop of 9 points, so at my December 2008 consult, decided for a Herceptin Holiday. All was well in March, so am going for another 3 months' "holiday." My last MUGA had an increase by 5 points, but I would like a higher number. Normal range, but on the low side. My brain MRI last week showed no disease there, so I go another 6 months on that one. (Like Flori - still NED in my head!) I have body and DEXA scans in June, and will assess again. It is very hard to believe that I could actually be "cured," as this is not supposed to happen to the likes of us stage IV types. However, as Andi says, "adapt or perish," or words of that effect, according to Darwin. So, it is that I have yet another adaptation in trying to live with my main security blanket removed - yet at arm's reach should I want or need it. This feels sort of like jumping into the ocean without a life preserver ... In the meantime, I am trying to put some order in all the files and things that just got "stashed" all during my life in cancerland. It is taking me a long time, because there is so much to go through and I can only concentrate on this for an hour or so at a time. It is like revisiting a life that was someone else's! Sorry this is a bit long, but I wanted to explain myself a little. __________________ "When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau Live in the moment. MY STORY SO FAR ~~~~ Found suspicious lump 9/2000 Lumpectomy, then node dissection and port placement Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR - Adriamycin 12 weekly, taxotere 4 rounds 36 rads - very little burning 3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED! 2003 & 2004 no active disease - 3 weekly Herceptin + Zometa Jan 2005 two mets to brain - Gamma Knife on Jan 18 All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying Continue as NED while on Herceptin & quarterly Zometa Fall-2006 - off Zometa - watching one small brain spot (scar?) 2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava 2008 - Brain and body still NED! Port removed and scans in Dec. Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011 STILL NED everywhere in Feb 2014 - on wing & prayer 7/14 - Started twice yearly Zometa for my bones Jan. 2015 checkup still shows NED 2015 Neuropathy in feet - otherwise all OK - still NED. Same news for 2016 and all of 2017. Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018. Last edited by StephN; 05-06-2009 at 09:22 AM..