HER2 Support Group Forums - View Single Post - Important re Tykerb alone in Adjuvant setting

Sandra in GA · 10-02-2011, 10:36 AM

cecw,
Your post is very upsetting to me. Are you not being followed by the doctor that placed you in the trial? Are you in the Allto trial?

I was in a phase II trial down at Mayo in Jacksonville and Dr. Edith Peerez was head of my trial and she and a Dr. from Denmark are head of the Allto trial which in the phase III trial. As you can see below, I have had a number of scans and follow-ups. I was seen about every three months to begin with and have now moved to every six months. I was told I would be followed for 15 years (I told them I liked the sound of that!) since I had been in the trial.

I sincerely encourage you to request scans and blood work including tumor markers ASAP. After all, this is your life they are dealing with. I cannot believe this trial would not also require the physician to follow basicially the same monitoring schedule.

Good luck. We care
Sandra

10-02-2011, 10:36 AM	#10
Sandra in GA Senior Member Join Date: Aug 2009 Location: Moultrie, GA Posts: 431	Re: Important re Tykerb alone in Adjuvant setting cecw, Your post is very upsetting to me. Are you not being followed by the doctor that placed you in the trial? Are you in the Allto trial? I was in a phase II trial down at Mayo in Jacksonville and Dr. Edith Peerez was head of my trial and she and a Dr. from Denmark are head of the Allto trial which in the phase III trial. As you can see below, I have had a number of scans and follow-ups. I was seen about every three months to begin with and have now moved to every six months. I was told I would be followed for 15 years (I told them I liked the sound of that!) since I had been in the trial. I sincerely encourage you to request scans and blood work including tumor markers ASAP. After all, this is your life they are dealing with. I cannot believe this trial would not also require the physician to follow basicially the same monitoring schedule. Good luck. We care 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