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krisvell · 03-25-2011, 04:12 PM

Rick,
I am very sorry to hear about your wife. Im going to share with you what I've learned in the last two months in the same journey that I am on. I found out I had a brain met on my brain stem 2.0cm; fairly large. My symptons were numb leg and then started seeing double vision. Since then, I've had two Gamma Knife treatments and have seen a 30% shrinkage in volume. So I am hopeful. I am feeling a little bit better everyday with some improvement in my vision.
With regard to systematic treatment, my oncolgist had 3 options;
1. wait and watch as they have not found cancer anywhere besides the one brain met.
2. Tykerb + Femara (already on)
3. Tykerb + Xeloda

She’s thinking #2 but wants to wait until I get a 2nd opinion.

Chrisy’s right Tykerb crosses the brain blood barrier. I’m not 100% sure but I think Xeloda does too.

I am going for a 2nd opinion on April 4th at Memorial Sloan Kettering (NY) and meeting with an Oncologist who deals a lot with brain mets. I sent an email to Musa at the brainmetssbc website and she gave me a few names. My oncologist helped me decide who to see.

2011 seems to be an epidemic of brain mets on this site... There's a lot of new posts. There's also a lot of ladies who are successfully dealing with this. (founder-Christine Druher,StephN Courtney L, Kavvy, Hutchibk (Brenda), Kiwigirl, Joan M, Virginia, Barbara H., Pam and others that I probably forgot about). They are all giving me hope and I hope they do for you and your wife.

A few things that were really a big help to me were:
- reading the Brain Mets threads on this site. I just did a search and learned a ton.
- http://www.brainmetsbc.org/ - Just dedicated to bc brain mets. Karla told me about this. That’s where I found Drs for a 2nd opinion. I send an email to Musa and she gave me two top docs in NY and Boston that were close to where I live. Although Chrisy mentioned Dr. Keith Black whos the rock star for Brain stuff.
- http://mbcnetwork.org/ - Metastatic Breast Cancer Network. Great resource.
Sending your wife and family hugs, prayers and love,
Kris......

03-25-2011, 04:12 PM	#4
krisvell Senior Member Join Date: Sep 2009 Location: Kensington, CT Posts: 394	Re: Brain Mets Rick, I am very sorry to hear about your wife. Im going to share with you what I've learned in the last two months in the same journey that I am on. I found out I had a brain met on my brain stem 2.0cm; fairly large. My symptons were numb leg and then started seeing double vision. Since then, I've had two Gamma Knife treatments and have seen a 30% shrinkage in volume. So I am hopeful. I am feeling a little bit better everyday with some improvement in my vision. With regard to systematic treatment, my oncolgist had 3 options; 1. wait and watch as they have not found cancer anywhere besides the one brain met. 2. Tykerb + Femara (already on) 3. Tykerb + Xeloda She’s thinking #2 but wants to wait until I get a 2nd opinion. Chrisy’s right Tykerb crosses the brain blood barrier. I’m not 100% sure but I think Xeloda does too. I am going for a 2nd opinion on April 4th at Memorial Sloan Kettering (NY) and meeting with an Oncologist who deals a lot with brain mets. I sent an email to Musa at the brainmetssbc website and she gave me a few names. My oncologist helped me decide who to see. 2011 seems to be an epidemic of brain mets on this site... There's a lot of new posts. There's also a lot of ladies who are successfully dealing with this. (founder-Christine Druher,StephN Courtney L, Kavvy, Hutchibk (Brenda), Kiwigirl, Joan M, Virginia, Barbara H., Pam and others that I probably forgot about). They are all giving me hope and I hope they do for you and your wife. A few things that were really a big help to me were: - reading the Brain Mets threads on this site. I just did a search and learned a ton. - http://www.brainmetsbc.org/ - Just dedicated to bc brain mets. Karla told me about this. That’s where I found Drs for a 2nd opinion. I send an email to Musa and she gave me two top docs in NY and Boston that were close to where I live. Although Chrisy mentioned Dr. Keith Black whos the rock star for Brain stuff. - http://mbcnetwork.org/ - Metastatic Breast Cancer Network. Great resource. Sending your wife and family hugs, prayers and love, Kris...... __________________ 06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++ Nottingham 6/9 - Grade 2 5.2cm, several nodes 06/23/09 - Neoadjuvant - TCH Herceptin til June 10/07/09 - Finished Chemo 10/27/09 - Mastectomy RB Path Report: RB No residual tumor pCR, 2 of 15 pos - .5mm largest micromets 12/18/09 - Radiation started (28) 02/05/10 - Finished Radiation 01/11/10 - Started Femara 06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best. 11/15/10 - Started Walter Reed BC Vaccine trial at 1/04/11 - Sibley Mem. Had to withdraw due to met 01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm 02/03/11 - Gamma Knife (2 fracts to minmize necrosis) 03/01/11 - Gamma Knife 6/11 - Necrosis 7/11 - Necrosis stopped & Tumor progression 8/11 = Now think it's really necrosis 9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking. 12/11 - Necrosis gone AVASTIN worked. 12/11 - Bone &CT found Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!