Hi Friends~
So, this bumpy journey goes on...
Can those of you on TDM1 offer any info and wisdom about how you're doing on the TDM1 regimen?
Which trial are you on?
Is it a hard regimen and are there lots of SE's?
Did you lose your hair?
I can't find much info about DM1, so would much appreciate your help.
After an intial partial response to Tykerb/Xeloda, shrinking sternal nodes & knocking down the SUV,
things have done a 180, in the wrong direction
My scans on Tuesday show that not only has the T/X combo stopped working for me-after only 16 weeks- but
my disease has progressed further than it has in years.
2 new spots in my liver- the L lobe this time. I had a R hepatectomy in Dec 05, and I'm strangely relieved that it's not on the "new" side. Regardless, it's disheartening to learn that my poor liver's been hit again, especially since I've been NED in my liver ever since the resection 4 years ago.
I have been battling recurrent mets in my supraclav & sternal nodes, and since the Herceptin + Gemzar didn't clean things up completely, and the sternal nodes recurred pretty quickly after finishing - or so I thought - H+G, we decided to try something completely new.
That's when I switched to Tykerb/Xeloda.
I guess that wasn't such a wise move, but how were we to know?
The added complication is that there are also nodes throughout my belly, causing all kinds of problems, including stricturing my kidneys/ureters and colon-causing everything to slow down in there.
This is the 1st time I've had discomfort directly due to this stupid disease. I hate stupid cancer.
So, clearly, Herceptin is still the right drug for me and I've already started back on Herceptin and had the loading dose on Friday. We just need to find the right combo to help knock everything back again.
Now we seach for a new regimen for me.
I'm really hoping to find a TDM1 trial that I will qualify for, so in the meantime I'm looking for more info.
And if I'm going to lose my hair again - for the 3rd time - I need a moment to wrap my brain around it.
Thanks in advance for your help.
Keeping the Faith~
Jessica
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