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Old 12-06-2009, 02:35 AM   #15
Sandra in GA
Senior Member
Join Date: Aug 2009
Location: Moultrie, GA
Posts: 431
Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

Yeah, that diarrhea is something else. Before I got to that phase in my treatment, they had already reduced the dosage from 1000 mg/day to 750. They had to reduce my dosage further to 500 mg/day during the Taxol phase. Durng the rest of the year, I had 750 but was never able to get to 1000 which was what they really wanted. I think being at the end of a study sometimes has its advantages! Even though I didn't take the max dose, I still feel very lucky to have gotten it. They have already started a phase III study with one arm being like the treatment I got, another just Herceptin, another just Tykerb, and one with Herceptin and Tykerb and no standard chemo. I am actually glad that I got the "all the big guns." But, it is wonderful to not have a tummy ache after having one for a full year! I like to think that those three months are what has helped you reach this awsome NED status for over six years!

I too am having some swelling in my left arm. I had an episode last week that was strange. I felt some pain and soreness during the night, then when I was getting dressed the next morning, I noticed a red area larger than a half dollar on my upper arm with a large streak going about half way around it. It was very warm and very sore. Since it was Sat., I called the on-call dr and she prescribed antibiotics. It responded very nicely and the residual lump under the skin went away after a week of treatment. I had no cuts, bruises, or any injury to that arm that I was aware of. I do still have extra swelling which I seem to retain under my arm in my surgical area. Has anything like this happened to you? My left arm is my predominate one since I had Polio at a very young age that left me with very limited use of my right. I knew that I would have to be careful not to injure my left arm and hand, but I do have to use it a lot. If you have any advice for me, I would appreciate it.

Thank you for responding and sharing your history with me! STAY NED!!!
Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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