Thread: scan results
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Old 12-15-2008, 09:55 AM   #19
doh2pa
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Join Date: Oct 2005
Location: Chadds Ford, Pa
Posts: 206
Hi Joy,

Well, I think you and I are in a similar boat, sister. Remissions are getting shorter and shorter and my onc is running out of things to try. So I started Doxil in early November (it's a once every 28 days) and I hate it. My quality of life is horrible on this drug and I will not get a third treatment (working or not). My choice.

So here's my encouragement. I am lucky to have a doctor for a husband. Everytime I have a treatment decision coming up, he scours clinicaltrials.gov to look for relevant trials. The last time he looked was June. He just looked recently and was ASTOUNDED by the number of phase I and phase II clinical trials for liver mets. According to his estimate there are at least 4 times the amount of trials that there were in June. That means CHOICES!!! That means more researchers looking for that elusive "one thing" that will work for me and you. I myself am trying to get my liver enzymes down to get on the DM-1 trial. So over the holidays we plan on going over all this data he is accumulating, throwing out the cookey stuff and narrowing the trials down to a few that make sense. I will pass on what we find to you and maybe one of them will be right for you.

I know you don't want to do Cytoxan - I had the same reaction for Doxil (adriamycin in drag!) but every step forward keeps us in the game and I really do believe that these researchers are SO CLOSE.

So let's make a pact, girl, to hang in there together. Cancer sucks, fighting it blows, and its so HARD. So many times I want to give up, but I keep it going for the people who love me and would be devastated by my death. You have people who love you too and their life would be diminished without you.

You deserve to cry and be mad. And if your heart is really telling you that Cytoxan is not right for you, maybe it's time for a fresh look. I have set up appointments in January at University of PA and Memorial Sloan Kettering in NY with other oncologists. I love my onc now, but he seems stuck and out of ideas so it's time to put myself out there and see what happens. Might you consider doing the same.

I am giving you a big cyber hug. Feel free to e-mail me privately. I will keep you posted on what I find.

Hang in there
__________________
Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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