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Old 05-04-2011, 04:41 PM   #5
Lori R
Senior Member
 
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
Re: Update on chrisy - where's NED????

Chrisy,
Well.....poop. We were all rooting for you to beat the odds with TDM-1 and to post 5 years from now asking whether you should go off of it or not. OK...a slight detour.

There are so many of us on the site that have used localized treatments that we gotcha covered. Questions??? We got answers.

As you know by my signature, we started with standard chemo and kept our fingers crossed. When it returned, like yours...only in the liver. My onc tried for a minimally invasive local procedure (cryoablation) followed by insurance chemo. I wrote a small novel on the cryoablation which was a 1 day outpatient procedure. Very manageable.

After a 2nd cryoablation and the subsequent return ...again (Da Bears)...only in the liver (3 1/2 years later) My onc finally relented and we lined up consults for radiation and GASP possibly a liver resection.

Since the location of my tumor was close to my heart, (I only have had one, but he was a fatty He quickly grew to 4 CM) the radiologist was going to have to reduce the amount of radiation so she thought a liver resection was the best bet. (she said she almost never would suggest that) After more scans to prove to the surgeon that I was NED, he agreed to remove the left lobe of my liver. Around here...ya really have to prove yourself worthy.

So.....March 31st I had a liver resection. I am so glad I did because hiding out behind the left lobe of the liver were 2 infected lymph nodes that they were able to remove. Little devils, no one knew there were there.

We decided no insurance chemo this time. We are going to see if Herceptin minus a tumor can beat this back.

Weird as it sounds, I don't have a strong opinion as to whether the cryoablation was a waste of time. Hey...it knocked the tumor back for about a year at a whack. (but, it did require insurance chemo, so did the tumor stay away because of cryo or just the impact of chemo???) No one can say.

I am soooo hoping to report back in a couple of years that the resection worked for a long, long time. I will have a scan in July.

MissyW skipped all the cryoablation steps and went straight for the liver resection gusto. She has been ned for a couple of years.

Hmmmm....maybe going for the gusto is a good idea. Missy was so supportive and answered all of my questions. I did have a moment of panic a couple of days before the procedure.

PM me or call me for ANYTHING!!!! No question too small. I just wish I had ALL the answers.

As we have all said before...this is the most stressful time. Processing the disappointing news and figuring out the next step. Hang in there, you will be beating back the cancer here very soon.

Lori
__________________
2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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