last night was my last sutent pill for this round. the side effects hit me hard at the end of this cycle. they tend to build up, but this time it was like a smack in the face one morning....BAM!! we're here! tongue peeling, sensitive mouth, lack of taste, painfully dry skin around my nose and in other random places on my body, nose bleeds, fatigue and the never ending bathroom visits. oh joy! although i have mentioned that the side effects are a small price to pay if the "miracle drug" is working, it is definitely worse than the dentist.
right now i am looking forward to a few weeks of normalcy...the side effects will slowly subside now and i just need to relax until my scan on feb. 11th.
once again, finger, toes, arms, legs all crossed....it seemed to work last time so what the hell!
Thursday, January 31, 2008
Sunday, January 27, 2008
Dates, Dates and More Dates...
this is just a quick update on all of my appointments coming up. the Jan 23rd appointment went as usual, the only thing that came out of it was that they reduced my thyroid meds from 75mcg to 25mcg. other than that, same ole same ole. i was fighting a head cold last week which is not a good thing to have to do when your white cells are down because of the sutent, but i managed to kick it to the curb. :)
okay, the upcoming appointments...the first one is on Feb. 11th for my next scan, yes, yucky, nasty, disgusting drinky dye. uuuggggggg. i have a follow up appointment on feb 12th to look at the scans and talk about next steps. then, on march 11th i have what will hopefully be a pre-op meeting with the surgeon. that's it. the only addition was the feb 12th appointment. i'll update if anything changes.
tootles.
okay, the upcoming appointments...the first one is on Feb. 11th for my next scan, yes, yucky, nasty, disgusting drinky dye. uuuggggggg. i have a follow up appointment on feb 12th to look at the scans and talk about next steps. then, on march 11th i have what will hopefully be a pre-op meeting with the surgeon. that's it. the only addition was the feb 12th appointment. i'll update if anything changes.
tootles.
Friday, January 11, 2008
One small step for WOman...
one week into the sutent cycle. side effects are minimal still so i try to take this opportunity to visit with friends...before i get too tired and before my white cells are down too much. this time, i am still basking in the glow of good news of how great the drug is working...so much so that i am starting to take my life back. starting to see more and more of my friends and meet new ones. wanting to celebrate this first step in a long line of steps to beating this. i want to scream from the rafters...i want to brag to anyone who will listen....I AM WINNING!!!!
one thing i want to bitch about. the sutent is really messing up my thyroid...they upped the dose to 75mcg because the second round of sutent messed it up more than the first. unfortunately, it takes the body a while to regulate itself with the help of the synthroid...5 to 6 weeks. so, in the meantime, my hair is falling out like crazy. not in clumps like with chemo, just all over like old age. this is a side effect of my thyroid issue which, as i mentioned, is being affected by the sutent. dr. doom says that the thyroid should return to normal when i am taken off the sutent, but until then, they will monitor it with the other blood tests and adjust the dosage accordingly. i HATE how thin my hair is now. i know it seems extremely vain in the grand scheme of things, but i have always had thick hair...a lions mane my family called it. now that it is so thin AND the fact that it grows in white while im on the sutent makes it look even thinner. my hair part looks like i have a skunk stripe on my head. i have been getting my roots done every 4 wks, but i am not due until the 20th and i already need it now....BAD. uggg.
ok...enough whining about trivial bullshit...on to the important stuff.
follow up appointment for the usual blood check and physical is Jan 23rd. last day of sutent in round 3 is Jan 30th. my next scan to determine whether i am heading to surgery or not is Feb. 11th(happy Val-dog Day). appointment with surgeon is currently set for March 11th (assuming the scan looks good). maybe the Easter Bunny will take my kidney and ovary for me this Easter! ha!
anyhoo, i probably won't write much, if at all until i get more news or something else happens. i try to stay busy visiting "Team Bean Saver" members as i already mentioned. tootles!
one thing i want to bitch about. the sutent is really messing up my thyroid...they upped the dose to 75mcg because the second round of sutent messed it up more than the first. unfortunately, it takes the body a while to regulate itself with the help of the synthroid...5 to 6 weeks. so, in the meantime, my hair is falling out like crazy. not in clumps like with chemo, just all over like old age. this is a side effect of my thyroid issue which, as i mentioned, is being affected by the sutent. dr. doom says that the thyroid should return to normal when i am taken off the sutent, but until then, they will monitor it with the other blood tests and adjust the dosage accordingly. i HATE how thin my hair is now. i know it seems extremely vain in the grand scheme of things, but i have always had thick hair...a lions mane my family called it. now that it is so thin AND the fact that it grows in white while im on the sutent makes it look even thinner. my hair part looks like i have a skunk stripe on my head. i have been getting my roots done every 4 wks, but i am not due until the 20th and i already need it now....BAD. uggg.
ok...enough whining about trivial bullshit...on to the important stuff.
follow up appointment for the usual blood check and physical is Jan 23rd. last day of sutent in round 3 is Jan 30th. my next scan to determine whether i am heading to surgery or not is Feb. 11th(happy Val-dog Day). appointment with surgeon is currently set for March 11th (assuming the scan looks good). maybe the Easter Bunny will take my kidney and ovary for me this Easter! ha!
anyhoo, i probably won't write much, if at all until i get more news or something else happens. i try to stay busy visiting "Team Bean Saver" members as i already mentioned. tootles!
Saturday, January 5, 2008
Mmmm....Mmmmmm...Sutent.
can you hear the Mmmm...Mmmmm....Campbell's tune playing in your head as you read my title?
HA! Back on sutent for what is hopefully the last round before surgery. started thurs night, so what is that, the 3rd....so, last pill is on jan 30. only 26 more pills to go. w00t! okay, okay, so small things make me happy now. i don't really have any interesting news to tell today, just wanted to document the start of a new cycle. carry on friends and loved ones...thanks for reading. keep on keepin' on and all that jazz. l8tr!
HA! Back on sutent for what is hopefully the last round before surgery. started thurs night, so what is that, the 3rd....so, last pill is on jan 30. only 26 more pills to go. w00t! okay, okay, so small things make me happy now. i don't really have any interesting news to tell today, just wanted to document the start of a new cycle. carry on friends and loved ones...thanks for reading. keep on keepin' on and all that jazz. l8tr!
Thursday, January 3, 2008
I AM A CANCER KILLING MACHINE
Jan 2nd. follow up appointment. dr. dooms assistant, the immunotherapy coordinator comes into the room and has a big ole smile on her face. she says that dr. doom has plans for me and that i should be so excited. we chat for a bit and then she leaves as we wait for dr. doom.
dr. doom comes in and starts off with his usual straight forward no emotion attitude and says that we should go look at the the scan first and then come back and discuss next steps. Field Trip!
we all proceed to the mobile monitor in the hallway and wait as he pulls up my first scan from august and my dec 27th scan. he proceeds to point out the progress i have made. it is absolutely amazing!!! i AM a cancer killing machine thanks to my miracle drug sutent! i have an overall average of 50% reduction. the cancerous tissue in and around the kidney itself had been reduced by 50%!! 50% with only 2 full rounds of sutent. the best part tho...the icing on the cake is that the cancer "wall" surrounding my aorta has also been reduced by about half. so much so, that the surgeon is fairly confident that after just one more round of sutent, he will be able to operate and get the kidney and at least some of the surrounding cancer out. he is so confident that he has already scheduled an appointment for me with him March 11th.
also, i had two spots on my liver previously...the scan now showed that one was completely gone and the other had significantly reduced in size as well.
w00t! w00t! w00t! i can't believe it. it is too good to be true, yet it is true. the 30% of patients that responded to the sutent the way that i have had already had the "mothership" aka the cancerous kidney removed. the best chance of reduction in amount of cancer was when the source had already been removed. that is why my case was so grim originally. why my original diagnosis was 3 to 20 months. but, as i have mentioned several times now, i am a cancer killing machine and have beat the odds so far. i am going to continue to beat the odds i know it! i can do this. i can beat this.
50% reduction is almost unheard of with just 2 rounds of sutent. my dr. was very pleased. dr. doom blushes!
so, the plan is one more round of sutent. i start tonight, yuck. in 3 weeks i go back for my usual mid-cycle check up and blood tests. then get another scan in 7 weeks to see if i am still a cancer killing machine. my surgeon will look at that scan as well and then i have the appointment with him march 11th. im hoping this appointment will be a pre-op consultation. i never thought i would be hoping for surgery, but i never thought i would be diagnosed with stage IV inoperable kidney cancer either.
thanks to everyone for your well wishes and support. i greatly appreciate everything. i never knew i had so many great friends and people who love me.
dr. doom comes in and starts off with his usual straight forward no emotion attitude and says that we should go look at the the scan first and then come back and discuss next steps. Field Trip!
we all proceed to the mobile monitor in the hallway and wait as he pulls up my first scan from august and my dec 27th scan. he proceeds to point out the progress i have made. it is absolutely amazing!!! i AM a cancer killing machine thanks to my miracle drug sutent! i have an overall average of 50% reduction. the cancerous tissue in and around the kidney itself had been reduced by 50%!! 50% with only 2 full rounds of sutent. the best part tho...the icing on the cake is that the cancer "wall" surrounding my aorta has also been reduced by about half. so much so, that the surgeon is fairly confident that after just one more round of sutent, he will be able to operate and get the kidney and at least some of the surrounding cancer out. he is so confident that he has already scheduled an appointment for me with him March 11th.
also, i had two spots on my liver previously...the scan now showed that one was completely gone and the other had significantly reduced in size as well.
w00t! w00t! w00t! i can't believe it. it is too good to be true, yet it is true. the 30% of patients that responded to the sutent the way that i have had already had the "mothership" aka the cancerous kidney removed. the best chance of reduction in amount of cancer was when the source had already been removed. that is why my case was so grim originally. why my original diagnosis was 3 to 20 months. but, as i have mentioned several times now, i am a cancer killing machine and have beat the odds so far. i am going to continue to beat the odds i know it! i can do this. i can beat this.
50% reduction is almost unheard of with just 2 rounds of sutent. my dr. was very pleased. dr. doom blushes!
so, the plan is one more round of sutent. i start tonight, yuck. in 3 weeks i go back for my usual mid-cycle check up and blood tests. then get another scan in 7 weeks to see if i am still a cancer killing machine. my surgeon will look at that scan as well and then i have the appointment with him march 11th. im hoping this appointment will be a pre-op consultation. i never thought i would be hoping for surgery, but i never thought i would be diagnosed with stage IV inoperable kidney cancer either.
thanks to everyone for your well wishes and support. i greatly appreciate everything. i never knew i had so many great friends and people who love me.
Dec 28th - the big call
waiting, waiting, waiting...it is the worst thing. i hate waiting...trying to keep your mind off of what you are waiting for.
ring, ring...FINALLY, the dr calls. he says that the scan shows that i have had some reduction. he needs to talk to the surgeon to see if there has been enough reduction to operate. he is in a hurry to get off the phone and try to get in contact with the surgeon.
good news. the drug is working. it is actually working. i am now among the 30% of patients that the drug actually reduces the amount of cancer, not just slows the growth.
yippie. another good day. after so many bad days it is great to have a good day. my luck has been so terrible...could it finally be my turn to have some good luck?!
my follow up appointment to see my scans and get word about surgery or no surgery is Jan 2nd.
fingers, toes, arms and legs all crossed again.
ring, ring...FINALLY, the dr calls. he says that the scan shows that i have had some reduction. he needs to talk to the surgeon to see if there has been enough reduction to operate. he is in a hurry to get off the phone and try to get in contact with the surgeon.
good news. the drug is working. it is actually working. i am now among the 30% of patients that the drug actually reduces the amount of cancer, not just slows the growth.
yippie. another good day. after so many bad days it is great to have a good day. my luck has been so terrible...could it finally be my turn to have some good luck?!
my follow up appointment to see my scans and get word about surgery or no surgery is Jan 2nd.
fingers, toes, arms and legs all crossed again.
Scan Day - Merry Xmas
December 27th has finally arrived. My anxieties are high. i don't want to drink the nasty dye. i get to my appointment on time and am taken back into the "drinking room" and get settled in the little hospital bed to get my drink on. this time, they offer me an alternative to the 6 mega-shots of nastiness. they offer me what they call a "Banana Smoothie" and i only have to drink 2 10oz cups of it vs. the 6 6oz cups of nasty. supposedly the side effects aren't as bad either. BRING ON THE BANANA SMOOTHIE!
well, let me tell you, banana smoothie it is not. oh yeah, it smells like bananas and looks like a white, half melted milkshake, but it feels and tastes like milk of magnesia. it is disgusting. but, i dont have to drink as much of it, so i drink on. halfway through the first 10oz of yuckiness, my banana smoothie decides it wants to come back out and i grab the nearest trash can which just so happens to be the same height as the bed. hmmm, i guess im not the first to need it. i manage to only spit up a little of the stuff and choke the rest back down. this happens again on the second cup and halfway through the second cup the nurse(at least i thought she was a nurse) comes in the with IV bucket of tools and proceeds to try, i stress try, to start my IV. i have the worst veins...they just dont want to come out and play. because of this, i always have to get stuck in the hand. all the nurses hate this...smaller target requires more talent. every single one of them that has had to start an IV on me or take blood for tests has insisted that they are good and want to check my upper arm to see if they can "get me" and every single one accepts defeat and ends up going for the hand. Well, the "nurse" tried the hand and ended up blowing my vein and giving me a big ole bruise. she then says "oh, you are hard, i'll have to call the RN and get her to start your IV." CALL THE RN. WHO THE HELL ARE YOU THEN?!?
within 5 minutes another lady comes in with the IV bucket of tools whom i presume to be the RN. she tries the other hand and gets me no problem.
oh yeah, i forgot to mention that this time, i also have to drink gatorade with baking soda in it every hour for 4 hours after the scan. this is to help my kidneys push the dye out of my system since it is not good for it to stay in there for too long.
anyhoo, on to the scan. it goes off without a hitch as usual. it is simply the prep for it that i dread. the IV dye that they inject just before the scan i am starting to enjoy. it gives you a weird warm feeling all over as it flows through your veins and all around your body. like a big warm fuzzy...it also makes you feel like you have to pee, but that quickly passes.
now the wait. it is a holiday week. my dr originally wanted to do my scan the first of the year, but i insisted on having it before the end of the year for insurance purposes. my deductible was met long ago and i wanted to fit as much into 07 as possible before the deductible reset. he understood and moved the date without hesitation. so, like i said, now the wait begins. it is a holiday week, but luckily my dr is on call and said he will call with preliminary results as soon as he gets a look at my scan.
fingers, toes, legs, arms...all of them are crossed for good news. please let it be good news!!
well, let me tell you, banana smoothie it is not. oh yeah, it smells like bananas and looks like a white, half melted milkshake, but it feels and tastes like milk of magnesia. it is disgusting. but, i dont have to drink as much of it, so i drink on. halfway through the first 10oz of yuckiness, my banana smoothie decides it wants to come back out and i grab the nearest trash can which just so happens to be the same height as the bed. hmmm, i guess im not the first to need it. i manage to only spit up a little of the stuff and choke the rest back down. this happens again on the second cup and halfway through the second cup the nurse(at least i thought she was a nurse) comes in the with IV bucket of tools and proceeds to try, i stress try, to start my IV. i have the worst veins...they just dont want to come out and play. because of this, i always have to get stuck in the hand. all the nurses hate this...smaller target requires more talent. every single one of them that has had to start an IV on me or take blood for tests has insisted that they are good and want to check my upper arm to see if they can "get me" and every single one accepts defeat and ends up going for the hand. Well, the "nurse" tried the hand and ended up blowing my vein and giving me a big ole bruise. she then says "oh, you are hard, i'll have to call the RN and get her to start your IV." CALL THE RN. WHO THE HELL ARE YOU THEN?!?
within 5 minutes another lady comes in with the IV bucket of tools whom i presume to be the RN. she tries the other hand and gets me no problem.
oh yeah, i forgot to mention that this time, i also have to drink gatorade with baking soda in it every hour for 4 hours after the scan. this is to help my kidneys push the dye out of my system since it is not good for it to stay in there for too long.
anyhoo, on to the scan. it goes off without a hitch as usual. it is simply the prep for it that i dread. the IV dye that they inject just before the scan i am starting to enjoy. it gives you a weird warm feeling all over as it flows through your veins and all around your body. like a big warm fuzzy...it also makes you feel like you have to pee, but that quickly passes.
now the wait. it is a holiday week. my dr originally wanted to do my scan the first of the year, but i insisted on having it before the end of the year for insurance purposes. my deductible was met long ago and i wanted to fit as much into 07 as possible before the deductible reset. he understood and moved the date without hesitation. so, like i said, now the wait begins. it is a holiday week, but luckily my dr is on call and said he will call with preliminary results as soon as he gets a look at my scan.
fingers, toes, legs, arms...all of them are crossed for good news. please let it be good news!!
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