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Old 10-28-2010, 05:29 AM   #11
Sandra in GA
Senior Member
 
Join Date: Aug 2009
Location: Moultrie, GA
Posts: 431
Re: I could really use some input

Yes, The Tykerb does not affect the heart like Herceptin can. As you probably already know, the worst side effect of Tykerb is the diarrhea. It can be quite debiliating. I did have to take potassium supplements during the year I took it. I found (after much trial and error) that a LOW fiber diet (white bread, meats, canned fruits, and only fresh green beans and asparagus) along with Immodium and Lomotil at the first signs of problems allowed me to go the whole way. The only reason I got into the tiral I was in was because so many women had dropped out because of this. I did not notice any increase in these symptons during the radiation. As a matter of fact my radiation onc laughed at me because I kept telling them how much better I was feeling during treatment. The Taxol along with the Herceptin and Tykerb was MUCH worse for me. I did not experience the radiation fatigue until the very last week. It wasn't nearly as bad and what I experienced with the A/C and Taxol phase.

I hope you doctor can get you approved to take this. I feel so blessed to have been able to have it with my Herceptin. I had 21/21 lymph nodes and growth outside, so I was just before becoming a stage IV. As a matter of fact, my breast surgeon was shocked when my scans didn't show mets in any organs. Somehow, I ended up where I needed to be to get the treatment necessary.

You are going to the best experts. I am sure they will come up with a winning plan for you.

~ Sandra
__________________
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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