2wk check went as usual. the plan now is to not rock the boat...if it aint broke, don't fix it...pick your favorite cliché. i am going to stay on the 25mg constant dose of sutent because it seems to be maintaining the amount of fluid in my belly...maybe even reducing it slightly. so, i am going to stay on this treatment for the next 3 weeks until my next set of scans. if the side effects get to me too much, dr. doom said i could take a week off or so and then start back...to just call in and let them know.
so, holding steady i am. side effects are the same. sore mouth, very tired, constantly in the bathroom, hair growing in white and sensitive finger tips. i am going to start taking naps. i just get too cranky because i am so tired so a nap is what i am prescribing myself. they tested my thyroid today to see if they need to adjust the dose of synthroid since this may still be contributing to my fatigue, but i haven't heard the results yet.
anyway, that's about it for now. oh! thanks to everyone for the birthday wishes! lucky 32!
Tuesday, July 29, 2008
Monday, July 21, 2008
Best laid plans....
well, the triple threat plan of attack didn't work. i continued to build up fluid in my belly and finally, during my last check up on july 15th, dr. doom and i agreed to schedule a pin cushion appointment while on the 25mg dose to see if once drained the sutent could "maintain" the current rate of fluid buildup. it was unable to reduce the fluid already there AND stop additional fluid production as the 37.5mg dose had been able to do previously.
so, on july 16th bright and early (7:30 appt.) i was scheduled for the pin cushion session. for those of you that know me well, you know that i am not a morning person....7:30 am is painful. thank goodness my dad picked me up and i didn't have to drive half asleep to the hospital. ok...on to the pin cushion session. dr. doom put in an order to drain 2 liters(approx. 4lbs) of fluid off. he guessed that i had 2 or 3 in there and didn't want to push it with ordering 3. the P.A. tries my right side...it starts to drain and then nothing...tap went dry and got stuck on my bowel. yeah, let me tell ya, that feels funky. this little tube sucked on to your bowel...not pleasant. so, she moves to the left side and voila! flowing like a river. luckily this time the fluid is not quite as bloody as last time...i take this as a good sign. also, it ends up that there's a good bit more than just 2 or 3 liters in there...no wonder i was getting so uncomfortable. in the middle of the 2nd liter, the P.A. calls dr. doom to ask if she can take another liter or so off. he agrees so long as my vitals stay within range and my blood pressure doesn't drop at all. so, they take off another liter for a grand total of 3. not as impressive as the 8ltrs i had taken off before, but still, going home with a flattened tummy and 6lbs lighter is pretty cool. the P.A. also told me that i probably had yet another 2 to 3 liters in there, but that dr. doom didn't want to push it.
5 days later, the scale still reads the same and my tummy appears to be maintaining....yeah! at the very least the sutent is slowing down the fluid production considerably again. but, and there is always a but, the side effects are really starting to get to me...moreso than ever before. i am EXTREMELY tired and weak...have major ups and downs during the day with my energy level. some nausea is starting to creep in from time to time too. my mouth is killing me...no sores, just really painful and i can barely taste anything. also, i can't stay out of the bathroom to save my life. imodium is now an appetizer with my meals, but i still have the runs all the damn time. sorry to be so blunt, but the frustration brings it out in me. needless to say, the drug side effects make it difficult to see people because i never know if i am going to be able to hang or not. sorry to all of those who have been trying to get in touch with me....i promise to be in touch more as soon as i can. hopefully the thyroid meds will help with the fatigue and i will be able to get out a little more than i have been lately.
thanks to everyone for their well wishes! rock on wit yo bad selves!
oh!! some good news....i seem to have gained a little bit of an ass back!! it still hurts like hell to sit for very long because of my tailbone and there are certain positions that are still off limits, but it is getting better. yippie! bring on the booty!
so, on july 16th bright and early (7:30 appt.) i was scheduled for the pin cushion session. for those of you that know me well, you know that i am not a morning person....7:30 am is painful. thank goodness my dad picked me up and i didn't have to drive half asleep to the hospital. ok...on to the pin cushion session. dr. doom put in an order to drain 2 liters(approx. 4lbs) of fluid off. he guessed that i had 2 or 3 in there and didn't want to push it with ordering 3. the P.A. tries my right side...it starts to drain and then nothing...tap went dry and got stuck on my bowel. yeah, let me tell ya, that feels funky. this little tube sucked on to your bowel...not pleasant. so, she moves to the left side and voila! flowing like a river. luckily this time the fluid is not quite as bloody as last time...i take this as a good sign. also, it ends up that there's a good bit more than just 2 or 3 liters in there...no wonder i was getting so uncomfortable. in the middle of the 2nd liter, the P.A. calls dr. doom to ask if she can take another liter or so off. he agrees so long as my vitals stay within range and my blood pressure doesn't drop at all. so, they take off another liter for a grand total of 3. not as impressive as the 8ltrs i had taken off before, but still, going home with a flattened tummy and 6lbs lighter is pretty cool. the P.A. also told me that i probably had yet another 2 to 3 liters in there, but that dr. doom didn't want to push it.
5 days later, the scale still reads the same and my tummy appears to be maintaining....yeah! at the very least the sutent is slowing down the fluid production considerably again. but, and there is always a but, the side effects are really starting to get to me...moreso than ever before. i am EXTREMELY tired and weak...have major ups and downs during the day with my energy level. some nausea is starting to creep in from time to time too. my mouth is killing me...no sores, just really painful and i can barely taste anything. also, i can't stay out of the bathroom to save my life. imodium is now an appetizer with my meals, but i still have the runs all the damn time. sorry to be so blunt, but the frustration brings it out in me. needless to say, the drug side effects make it difficult to see people because i never know if i am going to be able to hang or not. sorry to all of those who have been trying to get in touch with me....i promise to be in touch more as soon as i can. hopefully the thyroid meds will help with the fatigue and i will be able to get out a little more than i have been lately.
thanks to everyone for their well wishes! rock on wit yo bad selves!
oh!! some good news....i seem to have gained a little bit of an ass back!! it still hurts like hell to sit for very long because of my tailbone and there are certain positions that are still off limits, but it is getting better. yippie! bring on the booty!
Wednesday, July 2, 2008
the triple threat...fluid be gone!!
ok...open mouth, insert foot. in my last post i was complaining about the side effects kicking my butt late in the cycle and said "put a fork in me cuz i am done with this cycle". well, that'll teach me....one week into my two week break, my belly was swelling back up to the point where it was really noticeable. damn, i was just starting to be able to taste again!! i went in to see dr. doom and he agreed there was fluid building back up, but didn't want to schedule me to be drained.
attack plan #1: he started me back on the sutent immediately. since it takes a couple days to get the Rx's approved and ordered, he told me to start on the 50mg dose that i already had extra of at home and then switch to the 25mg as soon as the Rx was ready. the plan is to put me on a constant dose of 25mg without any breaks in the cycle in order to manage the fluid build up. he hopes to get me up to the 37.5mg dose on a constant cycle. i told him that the 37.5 dose kicked my butt in the 4th week and he noted that and said they would monitor the toxicity closely.
my thyroid is also getting worse due to the sutent....attack plan #2: bump me up to 100mcg...i have been on 75mcg. this could also be a contributor to the fluid buildup.
diet is also a contributor to fluid buildup from cancer side effects....so, attack plan #3: start eating better. more protein, no fried foods, more fruits and veggies, basically a general healthy diet, not a weight loss plan because i certainly don't need to lose any more weight, just a healthy diet.
with those three plans of action in effect, i should have the fluid back down in no time. wish me luck team bean saver!!
attack plan #1: he started me back on the sutent immediately. since it takes a couple days to get the Rx's approved and ordered, he told me to start on the 50mg dose that i already had extra of at home and then switch to the 25mg as soon as the Rx was ready. the plan is to put me on a constant dose of 25mg without any breaks in the cycle in order to manage the fluid build up. he hopes to get me up to the 37.5mg dose on a constant cycle. i told him that the 37.5 dose kicked my butt in the 4th week and he noted that and said they would monitor the toxicity closely.
my thyroid is also getting worse due to the sutent....attack plan #2: bump me up to 100mcg...i have been on 75mcg. this could also be a contributor to the fluid buildup.
diet is also a contributor to fluid buildup from cancer side effects....so, attack plan #3: start eating better. more protein, no fried foods, more fruits and veggies, basically a general healthy diet, not a weight loss plan because i certainly don't need to lose any more weight, just a healthy diet.
with those three plans of action in effect, i should have the fluid back down in no time. wish me luck team bean saver!!
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