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Old 03-25-2011, 04:12 PM   #1
krisvell
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Location: Kensington, CT
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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!
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Old 03-25-2011, 07:03 PM   #2
Elizabethtx
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Re: Brain Mets

My heart goes out to you and your family. I can not offer any brain met advice except research and don't give up. I am 47 and have a 13 year old, so am very close to your wife's situation. I know it must be a shock and can empathize with the fear and worry you must have. Certainly by three years out you must have been feeling very comfortable and then this happens. As you can see on this site many others are dealing with all kinds of metastasis and doing very well. You have come to the right place, you will receive lots of advice, care and support here! My prayers for peace for you.
Elizabeth
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Diagnosed: Feb 2010 @ 46 yrs old
Invasive Ductual Carcinoma, left
2/28/10 Bilateral Mastectomy (tissue saving for future reconstruction)
3.2 cm 2/18 +lymph nodes
Stage 2b; E+/P+/Her2 +++
Nottingham score grade 2
Ki67 30%
3/2010 A/C 4 DD/2wks
5/2010 Herceptin/Taxotere 4D/3wks
8/2010 Herceptin until May 2011
Tamoxifin 20mg
9/2010 RAD 34 treatments
Pet scan Aug 2010 clear
Port removed July 2011
Bone scan, chest MRI 12/11 clear
Vaccine trial began Oct 2011








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Old 03-30-2011, 07:34 PM   #3
joyce lutz
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Re: Brain Mets

My daughter is to receive LINAC (SRS) next month. She has several brain mets and they are zapping them in 2 separate sessions. She had WBR in June of 2010 but they didn't shrink all that much and there has been a bit of progression lately thus the SRS surgery. I'd advise getting 2nd opinions for future treatment and what to treat with as well. Best of luck to your wife.
Joyce
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Old 03-31-2011, 02:19 PM   #4
Becky
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Re: Brain Mets

As far as true chemotherapies are concerned, Xeloda and Temodar cross the blood brain barrier.

Tykerb (a targeted Her2 therapy) does too but it is an immunotherapy.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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