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Old 07-02-2011, 09:24 AM   #1
Mary L
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Re: Her2 Serum ?
Hi Kim, I too am a her2+++ and was on Herceptin for over 4 years. My onc decided almost 4 years ago to stop the Herceptin. He and Dr Slamon felt that it was a good time to stop. I was very afraid and begged to stay on it but it was stopped. I have been so fortunate & blessed to be coming up on 8 years this Oct 2011. I love Herceptin, it saved my life. I sometimes wish I could just have a round of it as a precaution, however my onc says that is not done. I wish you the very best and I agree with you on starting Herceptin asap. It works! Mary L
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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Old 07-02-2011, 11:15 AM   #2
Jackie07
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Re: Her2 Serum ?
Kim,

I'm sorry about your sister's diagnosis of GBM. Please contact ABTA (American Brain Tumor Association http://www.abta.org/) and NBTS (National Brain Tumor Society http://www.braintumor.org/patients-f...-brain-tumors/) for current research info and support.

GBM is extremely difficult to treat. But there are quite a few long-term survivors out there. NBTS is currently providing funding on 'translational' research.

Your family might fit the profile of HNPCC or other familial cancer cluster. Please request for genetic testing for both you and your sister, and possibly other family members.

Sending both of you good vibes.
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NICU 4.4 LB
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3 Infertility tmts 99 > 3 u. fibroids > Pills
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10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
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Last edited by Jackie07; 07-02-2011 at 11:21 AM..
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Old 07-02-2011, 04:04 PM   #3
Chelee
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Re: Her2 Serum ?
Hi Kim,
I think that is a very wise decision to go back on Herceptin. Like you, here is no way I could risk it. If you were to wait again to retest it might be hard to close that barn door and be NED again. I'm glad you have decided to stay on the NED horse again...you will rest easy now.

What was your normal range for the Her2 serum test before stopping Herceptin? As to your sister I am so sorry to hear the news. My heart just goes out to you both. She does have a fight ahead of her...but as you know from 1st hand experience...there are those that make it through these things. Jackie is very knowledable in this area and she knows of surviviors. I'll keep her in my thoughts and prayers.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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