http://www.fda.gov/bbs/topics/NEWS/2009/NEW01980.html
this week i was reminded why i keep fighting, enduring the side effects, enduring the pain....of course it is because i want to live, but more importantly, i want to beat this! each day, each month, each year i can hang on, science progresses and new treatments are approved by the FDA. (see link above). this drug is very promising. it appears to have the same if not better results than sutent AND it targets the malignant cells only whereas sutent starves all cells and the malignant cells simply happen to grow and thus die faster than normal cells. from everything i have read so far, it would seem that i am a candidate for this new drug. if i am not, i'm sure i will be soon. i am going to mention it to my dr. tomorrow and ask him if he has any additional data that would lead him to believe it is a good thing for me to look at trying out. the side effects seem to be similar, but it doesn't say anything about discoloration of the skin and hair. that would be great! no more white hair and white eyebrows and white eyelashes.
to all the science geeks and mathletes out there...THANK YOU! thank you for being passionate in your nerdiness and your quest for bigger and better treatments and cures!
Tuesday, March 31, 2009
Monday, March 30, 2009
is no news good news???
a bunch of beansavers have been asking why i haven't posted anything on the blog. well, there just isn't much to say. not much has changed since the last post. i'm still on the 25mg sutent, the side effects are tolerable. indigestion is the worst thing, but that is also due to the fluid as it can also cause indigestion. whenever i get drained, the indigestion magically goes away for several days for the most part and i can actually eat a lot more when my belly is NOT full of fluid.
as you may have guessed from the info above, the 25's are not keeping the fluid at bay as much as i had hoped they would. it has slowed down so i am not having to go every week, but i can barely make it 2 weeks and it is not getting any better than that. i had hoped to get it back up to a couple months in between drains...that is my goal at least, but im worried that those days are long gone. my dr. and a couple nurses have mentioned to me that i might want to consider getting a drain put in so i don't have to get poked so often. that way i could drain off fluid at home when i needed to. the only problem with this drain tube thingy is that it is susceptible to infection which my body can't handle not to mention the fact that you can't take a bath or go in a hot tub or go in a pool. you have to cover it up when you shower. they typically place it in your lower belly...below the belly button so you can't roll over on your belly. to me, it sounds like it would lessen my quality of life rather than increase my quality of life since i can still do all of those things. now, if i weren't able to do those things and it was too difficult to get to the hospital to be drained as often as i would need to, then yes, it would be time to look into something like that and become a human keg tap. but right now....i just can't do it. i can't bring myself to do it. i can deal with being poked every other week for now.
so, still slowly building up my stamina. i have good days and bad days. it didn't help that my thyroid was all out of whack again because they had lowered the dose of my meds to 75mcg for too long. after the last thyroid test, they had to jump the meds up to 125mcg....the highest i have been on. no WONDER i was so tired and my period was 3 weeks late and my fluid build up was not cooperating and my skin was as dry as leather. ugggg!!!! it takes 6 weeks for the thyroid to fully respond to the change in meds, so hopefully in the next couple of weeks things will be much better. i am a LITTLE less tired lately and i did get my period finally, so it would seem that my thyroid is starting to get my hormones back on track. hopefully i will continue to feel and do better and better and i will be able to increase my sutent dose to 37.5mg. if i can increase the sutent and tolerate it okay, that is my best bet to help control the fluid build up...otherwise, there is nothing else i can do. high protein diet, lots of fluids, some sort of exercise...even just short walks, balanced thyroid and more sutent. all of those things contribute to the ability to control the fluid build up. unfortunately there is no magic cure for controlling fluid. :(
not much has changed...steady as i go hoping that slow and steady does indeed win the race. my next scan will be in april....around the 3rd week of april. hopefully it will not show that i need to have another thoracentesis...that thing was freaking painful and i do not want to have another one of those any time soon.
as you may have guessed from the info above, the 25's are not keeping the fluid at bay as much as i had hoped they would. it has slowed down so i am not having to go every week, but i can barely make it 2 weeks and it is not getting any better than that. i had hoped to get it back up to a couple months in between drains...that is my goal at least, but im worried that those days are long gone. my dr. and a couple nurses have mentioned to me that i might want to consider getting a drain put in so i don't have to get poked so often. that way i could drain off fluid at home when i needed to. the only problem with this drain tube thingy is that it is susceptible to infection which my body can't handle not to mention the fact that you can't take a bath or go in a hot tub or go in a pool. you have to cover it up when you shower. they typically place it in your lower belly...below the belly button so you can't roll over on your belly. to me, it sounds like it would lessen my quality of life rather than increase my quality of life since i can still do all of those things. now, if i weren't able to do those things and it was too difficult to get to the hospital to be drained as often as i would need to, then yes, it would be time to look into something like that and become a human keg tap. but right now....i just can't do it. i can't bring myself to do it. i can deal with being poked every other week for now.
so, still slowly building up my stamina. i have good days and bad days. it didn't help that my thyroid was all out of whack again because they had lowered the dose of my meds to 75mcg for too long. after the last thyroid test, they had to jump the meds up to 125mcg....the highest i have been on. no WONDER i was so tired and my period was 3 weeks late and my fluid build up was not cooperating and my skin was as dry as leather. ugggg!!!! it takes 6 weeks for the thyroid to fully respond to the change in meds, so hopefully in the next couple of weeks things will be much better. i am a LITTLE less tired lately and i did get my period finally, so it would seem that my thyroid is starting to get my hormones back on track. hopefully i will continue to feel and do better and better and i will be able to increase my sutent dose to 37.5mg. if i can increase the sutent and tolerate it okay, that is my best bet to help control the fluid build up...otherwise, there is nothing else i can do. high protein diet, lots of fluids, some sort of exercise...even just short walks, balanced thyroid and more sutent. all of those things contribute to the ability to control the fluid build up. unfortunately there is no magic cure for controlling fluid. :(
not much has changed...steady as i go hoping that slow and steady does indeed win the race. my next scan will be in april....around the 3rd week of april. hopefully it will not show that i need to have another thoracentesis...that thing was freaking painful and i do not want to have another one of those any time soon.
Wednesday, March 4, 2009
The Tortoise and the Hare
ok. im back on the 25mg dose....started last thurs and so far so good. the fluid seems to be building at a slower pace, but im not sure why. could be the weeks on a high protein diet or the sutent starting to help a bit or my body finally catching up with the edema and the amount of fluid that has had to be drained over and over again so often lately....OR all of the above. every time they have drained since i got out of the hospital in jan, they end up leaving 2,3 or maybe 4 ltrs in there and my body just can't deal with that much on its own. it is only when they get it down to 1 or 2 left in my belly does the sutent and my body seem to be able to get rid of the rest on its own and balance out. so, i am going to be drained again this thurs even tho it seems to be building slower. i am hoping that they will take another 3 out and leave me with only 1 or 2 and since ive been on the sutent since last thurs, hopefully my theory will be correct and what used to work a few short months ago will work once again.
otherwise i am slowly, and i mean SLOWLY, building up my stamina again. i was so weak after getting out of the hospital and then stupidly trying the 50mg when i wasn't up to par yet and then on top of all that, weaning off of the morphine. man, i was just as weak as i was after surgery and it is taking a long time to get my strength back. its such a long, painful and frustrating road. any normal person would be back within weeks, for me it takes 3 or 4 times that. the tortoise vs. the hare. i am now the tortoise, but we all know how that story ended, right?! well, hopefully that will be me...slow and steady.
slow and steady.
otherwise i am slowly, and i mean SLOWLY, building up my stamina again. i was so weak after getting out of the hospital and then stupidly trying the 50mg when i wasn't up to par yet and then on top of all that, weaning off of the morphine. man, i was just as weak as i was after surgery and it is taking a long time to get my strength back. its such a long, painful and frustrating road. any normal person would be back within weeks, for me it takes 3 or 4 times that. the tortoise vs. the hare. i am now the tortoise, but we all know how that story ended, right?! well, hopefully that will be me...slow and steady.
slow and steady.
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