False start

well, 2 weeks in to the 50mg treatment, i just can't take the side effects this time. i was not strong enough from the start and they are really kicking my butt. i had to go in to be drained again and dr. doom took me off of the 50mg dose until my side effects subside. meanwhile, coming off of the morphine and the sutent kicking my ass has once again taken all of my energy and stamina. i have a hard time doing just about everything and actually can barely do anything. extremely disheartening to go 2 steps forward and what seems like 10 steps back.

so, as soon as the side effects subside i am to go back on the 25mg dose and then figure out next steps from there. i pretty much have to have my belly drained weekly at this point. i really wish we could figure that out...figure out how to minimize that because it is so uncomfortable. so painful, the pressure, the bloating, the nausea, the lack of appetite when the fluid builds up. not to mention the fact that i feel like a freak having to go in and have my belly tapped and liters of fluid drained off. it somehow makes it more.....real i guess. the paracentesis people tell me stories of other people that come in there all the time and have 8, 10, 15 ltrs drained off regularly compared to my 3 or 4. i suppose that should make me feel better, but for some reason it does not.

anyway, just wanted to give everyone an update. on a good note, Forbes magazine came out with a great article this month. the link is below. check it out...it's pretty inspiring.

http://www.forbes.com/forbes/2009/0302/074_cancer_miracles.html

Steady as i go....again.

ok, so i started on sutent the saturday after my last post so, 1/31. I am on the full 50 mg dose to see how that goes. so far so good. i didn't get enough sutent built up in my system to help keep the fluid down, so it built back up again. i called on mon. to see if i could get in earlier than thurs to be drained again....to give the sutent the best chance to keep the fluid at bay by draining as much as was safely possible. i still had plenty of edema as well. i developed a theory that the edema was simply moving and becoming the fluid since the edema was obviously moving and going down, but i was gaining fluid. i told my dr. about this theory and he said that he would be fine with that if that was what was happening. at least if that were the case, we are making progress, things are moving and getting better.

so, i went in on tues. to be drained and they took 4 liters off (almost 9 lbs). i don't know where all of this fluid is coming from, but man does it feel SOOOOO much better when they take it off. i had immediate relief. i was so much more comfortable. the places in my abs muscles that felt like they were torn or pulled from me straining so much to move the extra edema and fluid around were immediately relaxed and given relief. it is amazing how often and how much you use your core muscles. try to move without using them at all....it is fairly impossible. i couldn't let them relax enough to start healing until the pressure was finally where it needed to be. i have felt so much better ever since tues. i'm still on morphine, but i only have pain when i move certain ways vs. ALL the time and my belly is not filling back up as fast. it seems to be more manageable now. woohoo!!!

i've been on the sutent for a week and so far so good. i am going to call tomorrow(mon) to see about getting off the morphine. i don't like being on meds for very long and i have been on it for about 2 weeks now i think. i'd like to start working on tapering off of it even tho the torn muscle pain is still there, i think since there is less pressure, i could manage the pain with a less intense drug.

anyway, that's about it for now. feeling much better, eating a high protein very healthy diet, eating as much as i can, drinking as much as i can, edema continues to go down, fluid seems to be under control or at least it is taking a lot longer to build up this time and the sutent side effects aren't bothering me yet. still can't drive since the morphine makes me really drunk one minute, dizzy the next, tired the next and nauseous the next. will update again when i find out what my next steps are for the morphine taper. thanks guys!