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StephN · 02-18-2008, 01:31 PM

Hi there -
Hope the signs of spring will lighten your load just a LITTLE bit.
By the way, that combo you are on was a TRIAL just 4-5 years ago. This is what Esther took for her VERY extensive liver mets - and it WORKED for her.

To me it is your fear that you need to grip on and dampen down. Believe me, I know what it is like to face an onslought of mets. But, I managed to calm down and find ways to try to help myself.

Music became my constant companion. I shopped for new CD's that would infuse me with calm and help me center myself. (Nothing like mets to send us reeling.) Go and use the listening booths to find something that you can feel a physical change from. Then buy it and listen to it.

I knew I could not count on the chemo to do it ALL. My state of mind was important to me. My emotional well-being was important to me. My ability to sleep was important to me.

You have something that I did not have. A support group that could give you some success stories. You have some real reason to HOPE that a treatment can work. I had to carve my own way with almost no data for the trial I was in to give me much more than a SHRED of hope.

You and your care team have plenty of new drugs to try. I was nearly at the end of my possibilities. You have vast new knowledge as an ally. If your care team does not seem to take advantage of this then find a care team who will.

The answer to your question is to "get your affairs in order." But so far I have NEVER DONE THAT! I have a file that is started, seen a lawyer, but never finalized it. Wrote a codicil to my OLD will, but that is it.

02-18-2008, 01:31 PM	#6
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Look at your "gifts" Hi there - Hope the signs of spring will lighten your load just a LITTLE bit. By the way, that combo you are on was a TRIAL just 4-5 years ago. This is what Esther took for her VERY extensive liver mets - and it WORKED for her. To me it is your fear that you need to grip on and dampen down. Believe me, I know what it is like to face an onslought of mets. But, I managed to calm down and find ways to try to help myself. Music became my constant companion. I shopped for new CD's that would infuse me with calm and help me center myself. (Nothing like mets to send us reeling.) Go and use the listening booths to find something that you can feel a physical change from. Then buy it and listen to it. I knew I could not count on the chemo to do it ALL. My state of mind was important to me. My emotional well-being was important to me. My ability to sleep was important to me. You have something that I did not have. A support group that could give you some success stories. You have some real reason to HOPE that a treatment can work. I had to carve my own way with almost no data for the trial I was in to give me much more than a SHRED of hope. You and your care team have plenty of new drugs to try. I was nearly at the end of my possibilities. You have vast new knowledge as an ally. If your care team does not seem to take advantage of this then find a care team who will. The answer to your question is to "get your affairs in order." But so far I have NEVER DONE THAT! I have a file that is started, seen a lawyer, but never finalized it. Wrote a codicil to my OLD will, but that is it. __________________ "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.