Thread: Newbie here
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Old 12-21-2014, 09:06 PM   #5
Senior Member
Join Date: Jan 2010
Location: Edmonds, WA
Posts: 202
Re: Newbie here

Have you talked with your onc about going off it for awhile and monitoring your MUGA? I know for some people the MUGA will go back up pretty rapidly and they can try more Herceptin. Worth a try maybe. I also take CoQ10 twice a day; 100 mg each. My endocrinologist recommended this. My onc also advised me to take folic acid every day. Vitamin D and fish oil are also supplements to consider.

I have been on Herceptin for 5 years almost and so far my MUGA results have been fine.
Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.

Debbie K
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