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Nancy L · 05-20-2010, 12:23 PM

Think positive---it may just be in your neck nodes. That is how it ended up for me (determined by a Pet/CAT scan). But remember what Dr. Slamon told me---you MUST get a biopsy of the recurrence to redetermine the characteristics of the tumor to include the ER receptor status and a FISH. If they didn't get enough tissue via the needle biopsy to perform these tests, you will need to have an open biopsy of the nodes.

After my results were back showing the recurrence was even more strongly HER2 positive and still ER negative, Dr. Slamon put me on Herceptin plus 750MG daily of Tykerb. Because tumor markers have never shown anything about my tumor, I have had a Pet Scan every three months to see how this protocol is working. Each time the size of the nodes was smaller and the SUV went down. The last one was read NED. I have been on this protocol for 14 months. I am telling you this because my general oncologist where I receive my Herceptin infusions wanted to immediately put me on chemo and said "I have never heard of this protocol" when I told him what Dr. Slamon prescribed.

Again, contact me via e-mail with any of your questions. I know how scary this is and my heart goes out to you. Stay Strong!!!!!

05-20-2010, 12:23 PM	#8
Nancy L Senior Member Join Date: Apr 2009 Location: La Quinta, Ca Posts: 253	Re: Bad news, no longuer NED Think positive---it may just be in your neck nodes. That is how it ended up for me (determined by a Pet/CAT scan). But remember what Dr. Slamon told me---you MUST get a biopsy of the recurrence to redetermine the characteristics of the tumor to include the ER receptor status and a FISH. If they didn't get enough tissue via the needle biopsy to perform these tests, you will need to have an open biopsy of the nodes. After my results were back showing the recurrence was even more strongly HER2 positive and still ER negative, Dr. Slamon put me on Herceptin plus 750MG daily of Tykerb. Because tumor markers have never shown anything about my tumor, I have had a Pet Scan every three months to see how this protocol is working. Each time the size of the nodes was smaller and the SUV went down. The last one was read NED. I have been on this protocol for 14 months. I am telling you this because my general oncologist where I receive my Herceptin infusions wanted to immediately put me on chemo and said "I have never heard of this protocol" when I told him what Dr. Slamon prescribed. Again, contact me via e-mail with any of your questions. I know how scary this is and my heart goes out to you. Stay Strong!!!!!