HER2 Support Group Forums - View Single Post - Brain Mets

StephN · 01-07-2005, 04:06 PM

Hi dear ones -
I will try to answer all the questions, but first want to thank you all from the bottom of my heart for all the love and support.

First, Janet, briefly on my history. (My story of survival is on this site under Community/Member Stories if you want more detail.)
Dx Oct of 2000. Lumpectomy - lower axilla excised - 8 of 18 nodes positive.
Her2+++, tumor high grade.
12 weekly Adriamycin, 4 week break, 4 taxotere, rads x36
Put on 3-month followup with labs and markers, as identified as a high risk patient.
Liver & bone mets within 6 months of first chemos. Trial with Taxol, Navelbine and herceptin. Was clear of mets after 27 weekly treatments. Been clear since July of 2002. Annual brain MRI as a precaution - I made up some symptoms so the doc could put it in his report so the insurance would pay. But med onc and I both knew the brain was perhaps the next likely place since I had responded completely to the trial for liver mets.
There are some links to Gamma Knife in this site that will explain it more detail. It is noninvasive (no actual "knife"), but a blast of gamma rays that kills the tumors.

Jackie - Your detailed post after your GK treatment really made an impression on me those many months back, and the fact that you posted immediately after the procedure took most of the scare away. The fact that we have to "wait and see" does not bother me as I have now heard from so many on this board who took the GK route successfully. Sorry you have a new problem, but seems there is a good treatment. Again on the forefront, so we will be wanting to hear about it. ;)
I am not needlephobic, but have a concern about staying so still (under pressure) for so long, as the Dexamethsone is making me a little restless. They will give some mild sedative, but not sure what. The neurosurgeon already told me about the little ball point pen points that will be used to hold the headpiece in place. I said after all I have been through I an not worried.

JoJo -
Fortunately my neck is not short - not a lithe swan neck either, but adequate and not deemed to be any problem. The team only mentioned that if they find more spots on the fine cut MRI on treament day, they may have to reposition things to get those, as they will be positoning to get what they currently know about.

Lisa -
I posted about the tumor markers in answer to Rozebud's poll above.

I will print out all the well wishes and put them in my "basket of love" that I have kept all the cards and emails in since I began this whole fight over 4 years ago. That basket sits on a shelf in my office right behind the wall where I lay my head every night. I am now needing a bigger basket!!

01-07-2005, 04:06 PM	#11
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Hi dear ones - I will try to answer all the questions, but first want to thank you all from the bottom of my heart for all the love and support. First, Janet, briefly on my history. (My story of survival is on this site under Community/Member Stories if you want more detail.) Dx Oct of 2000. Lumpectomy - lower axilla excised - 8 of 18 nodes positive. Her2+++, tumor high grade. 12 weekly Adriamycin, 4 week break, 4 taxotere, rads x36 Put on 3-month followup with labs and markers, as identified as a high risk patient. Liver & bone mets within 6 months of first chemos. Trial with Taxol, Navelbine and herceptin. Was clear of mets after 27 weekly treatments. Been clear since July of 2002. Annual brain MRI as a precaution - I made up some symptoms so the doc could put it in his report so the insurance would pay. But med onc and I both knew the brain was perhaps the next likely place since I had responded completely to the trial for liver mets. There are some links to Gamma Knife in this site that will explain it more detail. It is noninvasive (no actual "knife"), but a blast of gamma rays that kills the tumors. Jackie - Your detailed post after your GK treatment really made an impression on me those many months back, and the fact that you posted immediately after the procedure took most of the scare away. The fact that we have to "wait and see" does not bother me as I have now heard from so many on this board who took the GK route successfully. Sorry you have a new problem, but seems there is a good treatment. Again on the forefront, so we will be wanting to hear about it. ;) I am not needlephobic, but have a concern about staying so still (under pressure) for so long, as the Dexamethsone is making me a little restless. They will give some mild sedative, but not sure what. The neurosurgeon already told me about the little ball point pen points that will be used to hold the headpiece in place. I said after all I have been through I an not worried. JoJo - Fortunately my neck is not short - not a lithe swan neck either, but adequate and not deemed to be any problem. The team only mentioned that if they find more spots on the fine cut MRI on treament day, they may have to reposition things to get those, as they will be positoning to get what they currently know about. Lisa - I posted about the tumor markers in answer to Rozebud's poll above. I will print out all the well wishes and put them in my "basket of love" that I have kept all the cards and emails in since I began this whole fight over 4 years ago. That basket sits on a shelf in my office right behind the wall where I lay my head every night. I am now needing a bigger basket!!