Wanted to share my miracle Herceptin Story..

[sabpri]

I used to post all the time and then when my recurrance happened in April I went dark. My Path showed my cancer to be Triple Negative, so I didn't really bother to come here anymore, but now I need to share my story with all of you in celebration as well as possibly helping someone else!

When I was first diagnosed in August 2005, I apparently had a very unique pathology (I always have the weird things!). I had 2 HUGE tumors (6cm & 7cm), both pathologically totally different. One was Strongly ER/PR positive, Her2-, and the other was classified as Triple Negative, but with this asterick * showing that my tumor had a small sub population, less than 10%, that was strongly Her2 Positive. They decided to throw the kitchen sink at me and give me hormonals and herpcetin. I was unfortunately already Stage 4 Bone Mets at diagnosis (misdiagnosed by OB, but that is a whole other story). We never did a biopsy on the mets, so we didn't know if they were Her+ or Triple Negative or Hormone+. I was NED when I finished my treatments and I stayed on herceptin for one year. My heart function had dropped some on the Herceptin, and between that, not knowing if the mets were Her2+, and not even knowing after that weird Path if I really was her2+, my Onc decided to take me off. I had one of those gut feels that it was a bad idea, but I wanted to just be done with that place for awhile.

Fast forward January 2007 and my markers, which had remained between 12-17 while in remission jumped to 21. I know that is not a lot, but it was a red flag for me since mine had been so low. No one was really concerned and told me it was normal fluctuation. I decided that there was nothing I could do at that time anyway, as things might be too small to be picked up on a PET, so I just went about my life and enjoyed for the next 3 months. In April 2007, my markers were at 32 and even though less than 38 is normal, I knew my cancer was back. The following weeks they jumped to 44. We did a scan, and the Bone Mets were "innumerable (love that!) through my entire skeleton and a spot on the lining of my lung and thymus. I had a biopsy and the Path showed the cancer was Triple Negative. I still felt like I needed the Herceptin, even though my Path didn't show it was warranted. I pleaded my case to my Onc, who luckily listened to me and said she would agree to give me the Herceptin if I did not get stable/NED after 3 rounds of Carbo/Abraxane. My numbers did drop, but then they stalled at 40 and would not drop further. Scans om 7/30 showed the random spots on lung lining, thymus were gone, but the bones were significantly worse, lots more lesions spread from my skull, to my arms, pelvis, ribs, sternum and thighs (lovely!). I thought I was going to die.

My Onc agreed at that time that we could add the Herceptin and try one cycle of the Abraxane/Herceptin (we dropped the Carbo) so we would know if the herceptin did anything before adding a new chemo (Navelbine was the next one). On August 3rd I did my first Abraxane/herceptin and my markers dropped from 37 to 21 in 2 weeks! They did creep up a little to 26, so we decided to do another scan after another round of the combo. My results came back Tuesday showing all the cancer activity in my bones had returned to normal, and there was no new or recurrent sites of cancer. I can't beleive what happened from August 3rd to Septemeber 21st after 2 rounds of Abraxane/Herceptin!!

Our plan is to drop the chemo for now and just do the Herceptin for 6 weeks, than another scan to see if I am still showing no activity (no one said anything about NED, so I am not sure about that yet - I think on of the areas showed "returning to near normal levels" so I guess that does not qualify me for NED). I'm hoping that the Herceptin does it and I can stay in remission for a long time.

I just wanted to share my story because I think we all know so much more about our bodies than we think. I feel blessed that I have an Oncologist who was willing to listen to me, and to be open to following my gut even though it flew in the face of science. I don't know what the story is, maybe I am Her2- and Herceptin still works for me for some reason, or I am Her2+ but it did not show up on the pathology from the Bone Biopsy, I don't know, but I do know that for whatever reason, it worked. Maybe there are more women out there who could benefit from herceptin, and could add it to see if it makes a difference if the chemo is not working.

I feel so blessed, even if my remission is short and I wanted to share and to hopefully help someone else.

Love,
Natalie <!--IBF.ATTACHMENT_205526-->