My brother is a big proponent of mind over matter. I have trouble envisioning a battle like he suggests, but, I'm doing my best to repeat to myself, any of the following... I add a bit when I think of it:
Fight the sarcoma. Kill the sarcoma. Destroy the sarcoma. Break the sarcoma. Battle the sarcoma. Beat the sarcoma. Lyse the sarcoma. Delete the sarcoma. Tear apart the sarcoma. Annihilate the sarcoma. Shrink the sarcoma. Vaporize the sarcoma. Invade the sarcoma. Starve the sarcoma. Eviscerate the sarcoma. Stop the sarcoma. Choke the sarcoma. Evict the sarcoma. Recognize and kill the sarcoma. Vanquish the sarcoma.
Monday, January 21, 2013
Friday, January 18, 2013
Pazopanib end point
Dang. That pazopanib was really treating me pretty well. Easy to take, minimal side effects, and even some repeated tumor response... some even still are!?!? But, others aren't and the disease has progressed, as they say.
Locations: Seems like all over, but honestly, sarcoma doesn't move distally, so; 2 nodules left lung, 2 nodules liver, 1 large(small orange) in my abdomen, the primary tumor, and some other stuff in the abdomen area.
Symptoms: Typical of sarcoma, not much pain. I get some discomfort if I eat a large meal. The only pain I feel is really hard to explain; like a short little shooting pain maybe if you tweaked something. It only happens briefly and isn't wincing, but gets my attention. Only other discomfort is bowel movements, the tumors are pressing up on the GI tract, so if I have to go, I don't really have a choice and have to get to the bathroom pronto. Also, I still have persistent edema in my leg.
Next: I'm prequalified for this trial: http://clinicaltrials.gov/ct2/show/NCT01515306 My doctor thinks it will work well for me since the Ramucirumab works in similar fashion to pazopanib and I had such a good response to that early on. Plan is to start 2/5-2/6 time frame. Only 50 or so patients get to try, so I'm feeling lucky about that.
Thoughts: I was asked if I'm afraid of the next chemo? No, I'm more afraid of wasting good time on things that don't help. My history with chemo has shown that I'm pretty tolerant of it all, and I kind of use that as a barometer of how effective it is. Adria and Ifos, they say I sailed through and we see that wasn't effective. Yondelis(trebectadin), that actually knocked me down pretty good for maybe a day or two, then I was just "blah" for a week; but that didn't work on the cancer. Pazopanib, that actually gave me a lot of pain to start with, but that was more likely from it working on the tumors. If this Ramucirumab works for me, I'm anticipating that pain again. Heck, I'm even hopeful for that pain again, but if I do experience that, I will literally be doubled over, not able to stand up straight and "afraid" to have a bm.
Locations: Seems like all over, but honestly, sarcoma doesn't move distally, so; 2 nodules left lung, 2 nodules liver, 1 large(small orange) in my abdomen, the primary tumor, and some other stuff in the abdomen area.
Symptoms: Typical of sarcoma, not much pain. I get some discomfort if I eat a large meal. The only pain I feel is really hard to explain; like a short little shooting pain maybe if you tweaked something. It only happens briefly and isn't wincing, but gets my attention. Only other discomfort is bowel movements, the tumors are pressing up on the GI tract, so if I have to go, I don't really have a choice and have to get to the bathroom pronto. Also, I still have persistent edema in my leg.
Next: I'm prequalified for this trial: http://clinicaltrials.gov/ct2/show/NCT01515306 My doctor thinks it will work well for me since the Ramucirumab works in similar fashion to pazopanib and I had such a good response to that early on. Plan is to start 2/5-2/6 time frame. Only 50 or so patients get to try, so I'm feeling lucky about that.
Thoughts: I was asked if I'm afraid of the next chemo? No, I'm more afraid of wasting good time on things that don't help. My history with chemo has shown that I'm pretty tolerant of it all, and I kind of use that as a barometer of how effective it is. Adria and Ifos, they say I sailed through and we see that wasn't effective. Yondelis(trebectadin), that actually knocked me down pretty good for maybe a day or two, then I was just "blah" for a week; but that didn't work on the cancer. Pazopanib, that actually gave me a lot of pain to start with, but that was more likely from it working on the tumors. If this Ramucirumab works for me, I'm anticipating that pain again. Heck, I'm even hopeful for that pain again, but if I do experience that, I will literally be doubled over, not able to stand up straight and "afraid" to have a bm.
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