What to do now?

12-05-2008, 01:22 PM

Just wondering, when can someone start Tykerb. Is this only taken after there's a reaccurrance. I was dianosed in Aug.2007, age 43, Ivasive Ductial Carcinoma, poorly Differentiated. ER/PR-, HER2+ gene amplification with a HER2

17Z1 ratio of 12.0, node positive. I had 4 rounds TAC, weekly Herceptin. Bilateral mastectomy Dec. 11,2007. Residual minute foci of Invasive Ductal Carcinoma, Nodes showed no evidence of malignancy, at surgery. Jan.2008 started Taxol, continued weekly Herceptin, 35 radiation treatments. I should be finished with Herceptin in Jan. 2009. I have asked 2 oncologist, and my nurse if I could take anything else, they all say no. One onc. told me if I had a reaccuuance I needed to come to his cancer center and see their BC oncologist. (Since June 2008 we have not had a regular onc!!!) I have read that Tykerb sometimes is given after one finishes Herceptin. Anyway I am ready to finish with treatments, been weekly since Aug. 2007. But am really scared not to be doing something to keep this at bay. One onc. I saw said there was a 50/50 chance of reaccurrance. HELP! If any one has any advice please let me know.

Cheryl

Believe51 · 12-05-2008, 01:53 PM

Welcome to our family, so glad you found us but sad that you had to. First off I was wondering if you could let us know a little more about yourself so others could help better.

Few things.....let no one tell you what your chances are (re:50/50), we break the rules and stats all the time.

Then I must say there is always hope, many new treatment regimes and combinations to try. I am not an expert but even when potentially failing with one drug does not mean it cannot be combined in another regime (although we try not to).

I will be taking your post and placing it in the MAIN FORUM so many can see it. We will try to get you the help you need and the answers you seek.

Wish I could ramble on a bit more but I have a headache and it gets hard on the old eyeballs.

Keep us posted with yourself, there are many wonderful people that will be helping and routing you on. Best of luck and we will speak soon, Cheryl.>>Believe51

chrisy · 12-05-2008, 01:55 PM

Hi Cheryl,
What you are hearing is correct, you have "done" it.

I'm not real clear on what stage your cancer was, but it sounds as if you have had all the treatment that would be considered "standard of care" as adjuvant treatment. You should specifically recheck the stat on recurrence - 50/50 seems incorrect, way too high particularly having no positive nodes prior to the surgery.

There is a statistic on adjuvant use of Herceptin which is that getting herceptin reduces your chance of recurrence by 50% compared to not getting Herceptin. So if your chance of recurrence before Herceptin would have been 20%, you reduce that to 10% if you get Herceptin. Maybe what you heard was a mixed up version of reducing your risk by 50%.

I think the recurrence stat was not clearly communicated to you.

At any rate, it is not standard of care to have any treatment beyond what you have had, although some ladies here who were diagnosed with Stage III and at high risk for recurrence have been able to extend their time on Herceptin and/or get Tykerb. Tykerb is not FDA approved for early stage bc, so this would be a challenge.

First, my suggestion is to get clarity on your staging and recurrence risk.

12-05-2008, 10:13 PM

Hi! I found the the cancer on June 16, 2007 while in the shower. It wasn't there the day before. I 'm not sure of the exact measurement, but when I found it was the size of a golf ball. By the time I go to get it checked out Aug. 14, 2007, it had grown to the size of a small orange. Anyway, once I see onc. He said I was stageIII, Node Positive. I then found out 3 weeks later I was HER2+. Started weekly Herceptin. I really didn't know much about what I had ( So messed up During TAC treatment) until I guess around March 2008. Finally began to get a little clearer head. I never did ask if HER2 changed staging of cancer. One of the Onc. I seen did say that my responce to my treatment was unheard of. He was talking about having cancer in the lympnodes before surgery, then having the nodes clean when the took them out, not to mention for the tumor to be as large as it was, then at surgery, they only found residual minute foci of Invasive Ductal Carcinoma. Anyway that's just the short of my story. Looking forward to getting some imput from you guys. Thanks so much, I have learned so much since I found this site.

Love to all,
Cheryl