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Old 05-17-2012, 10:16 AM   #10
bevilj
Member
 
Join Date: Oct 2010
Posts: 18
Re: Not the best PET--Need to brainstorm options

Hi, Sorry to read that you have progression and are in need of a different treatment plan. I read the other entries about Tykerb and Xeloda and wanted to share some details about both as I have had both in my treatment.

I was on Xeloda, Herceptin, and Zometa for almost a year. The Xeloda kept me stable for quite awhile. And while it is a chemo, it was not as 'harsh' as the IV chemo I had been on previously. My onc recommended Xeloda for my situation because my progression at the time was not too far along. It offered me a good option while keeping some of the more aggressive options in my back pocket for future needs. I experienced just about every side effect on the list of possibilities to varying degrees but was still able to work part-time, ski, hike 14,000 ft mountains, etc.

After Xeloda stopped working, we added Tykerb to the mix. I was on the T & X combo (still always Herceptin and Zometa) for a few months but couldn't handle the side effects. I lost weight, lost energy and was just plain miserable for weeks. But, it was working! So, after much consideration, I stopped the Xeloda and am now on Tykerb. I still have side effects but am getting back to feeling like my old self (that is the old self on Xeloda, not pre cancer). Tykerb seems to be working great on it's own also.

I'm not sure why the trial is being talked about by your onc at this point but I'm sure there is a good reason. Given that Tykerb is already available, I encourage you to ask about the difference between taking the pills on the trial and independant of the trial. Maybe it's the same but the trial offers the medical community more insight into the treatment?

I wish you well in your treatment plan decision. The good news is that there are several options out there. You can pick one now and use another later, should you need to.

All my best, Jen
__________________
6/09 - self exam - lump!
8/09 –Dx - IDC, left breast. Suspicious mass,right breast (more testing required).
9/09 - Double mast/cholecystectomy /nodes removed. IDC confirmed, right breast. liver/bone mets. ER-/PR -/Her2 +. BRCA 1/2 -.
10/09 - Started Taxotere, Carboplatin, Herceptin, Zometa. Hospitalized with Tetany.
1/10 - Finished Taxotere, Carbo, continued Herceptin, Zometa. PET/CT - improvement.
2-3/10 - Rads (25 rounds).
8/10 – inflammation vs. malignancy?
1/11 – progression. started Xeloda.
9/11 – progression. pancreatitis or tumor? Chest ‘rash’ appeared.
10/11 – confirmed pancreatitis. Halted Xeloda.
11/11 – skin mets confirmed.
12/11 - started Tykerb, back on Xeloda.
1/12 – cut Xeloda dose in ½. skin mets fading!
4/12 - no more Xeloda. skin mets resolved.
8/12 - brain mets found.
9/12 - gamma knife and fractionated brain radiation.
1/13 - progression throughout body. brain mets shrunk/resolved. no more Tykerb.
2/13 - starting T-DM1 trial.
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