KATE58 AND IRINOTECAN - DAY ONE

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KATE58
KATE58 Member Posts: 299
edited March 2014 in Colorectal Cancer #1
Hey everyone!
Just had first treatment of irinotecan.
I've been home a couple hours and am starting to feel a little quesey.
My doctor only gave me half dose of irinotecan.She wants to see how I do on 1/2 first, because I had all of
my large intestine removed and part of my small.
So a big concern is diarhea and dehydration,which could easily put me in hospital .
I am really,really, vigilant at constantly drinking water tho.When most people are told 'nothing by mouth after midnight',they let me drink all the water I want until 4 hours before.
as premeds ,she gave me atropine,zofran and decadron and said to call if i think i need lopramin(?)

I did not get erbitux with this,nor 5fu,as this is really 'insurance' for a tumour in my main bile duct for which they did an ERCP to biopsy it and ended up being able to remove the whole
tumour! The surgeon said he's 99.9% sure he got it all ! they will do another pet/ct
in about 6 weeks and if nothing shows,I'll be NED!! ( FOR THE 3RD TIME)
I was on erbitux alone for 6 months that got rid of a 4-5 cm tumour in my pelvis wall,
but since the bile duct tumour grew while on it they figured it wouldn't work.Plus it really trashed my bone marrow!!

I was tested for kras and I'm WILD!(wild woman)! no mutants in me !!
Usually I am sicker the 2nd and 3rd days,so we'll see how tomorrow goes.
atropine and decadron have a stimulant effect,and I CANT EVEN DO CAFFIENNE without climbing walls,I'll be up all night!

well,I have to go harvest my squash,eggplants and collect the eggs now,so
I'll check in later.
GOD BLESS US EVERYONE!
KATE
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Comments

  • JDuke
    JDuke Member Posts: 438
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    Kate
    Just love your spirit. Congrats on getting past day one (almost). Hope any side effects will be mild. Keep smiling.
    Warmly,
    Joanne
  • Shayenne
    Shayenne Member Posts: 2,342
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    Hi Kate!!
    I think I talked about this on a different post about my first experience with Irinotecan, and I also am on Avastin, and 5fu, and how bad the nausea was on the first treatment, where I couldn't even drink, eat, or get out of bed after being unhooked from the pump, it took a few days to bounce back to myself, but it was horrible feeling like that, and they told me I wouldn't feel like that again, after they called to check up on me on my first treatment (the chemo nurses). I tried taking Zofran and Compazine, and they both did squat, but the 2nd treatment, they started me on Emend and Dexamethasone, and I now take that with the Zofran and compazine, and some maryjane, and wow....no more nausea! I now feel good even after disconnect at times, with no fatigue even after being unhooked for a few days!

    Yes, drink plenty of water, makes the stuff flush out of you, and things moving along, I drink alot of juice as well, it's fluids, right? lol.. I'm not sure why you can't eat after midnight, no one ever told me to not eat at a specific time, I can eat what and when I want :)

    I have the Ativan (Lorezapam) which helps me with the stimulants, it calms me down, where I don't get so wigged out I think, but I wait till night time to take it, since it puts me to sleep as well!

    Atrophine is that shot they give you right? for the pain, or hot flashes, cramps that Irinotecan can give you? I also get that shot each time I receive it. It does help, but not for the nausea.

    I notice a day of diarrhea a couple days after getting unhooked from the chemo, but all I take is 1 Immodium-AD and it usually helps stop it, and my stools start looking like sludge again ;) LOL

    Hope your surgeon did get it all! and hope you get back to NED!!

    Hugsss!
    ~Donna
  • PhillieG
    PhillieG Member Posts: 4,866 Member
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    CPT11
    I have an intimate relationship with irinotecan, I use it's nickname. I have been on it for the better part of 3 years.
    I hope you do well with this Kate and that it all goes away.
    Your comment:"The surgeon said he's 99.9% sure he got it all! they will do another pet/ct in about 6 weeks and if nothing shows, I'll be NED!!
    (FOR THE 3RD TIME)" kind of made me chuckle.
    It's always that .1% that gives one a hard time, isn't it?

    Please be NED!!!
    -phil
  • KATE58
    KATE58 Member Posts: 299
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    Shayenne said:

    Hi Kate!!
    I think I talked about this on a different post about my first experience with Irinotecan, and I also am on Avastin, and 5fu, and how bad the nausea was on the first treatment, where I couldn't even drink, eat, or get out of bed after being unhooked from the pump, it took a few days to bounce back to myself, but it was horrible feeling like that, and they told me I wouldn't feel like that again, after they called to check up on me on my first treatment (the chemo nurses). I tried taking Zofran and Compazine, and they both did squat, but the 2nd treatment, they started me on Emend and Dexamethasone, and I now take that with the Zofran and compazine, and some maryjane, and wow....no more nausea! I now feel good even after disconnect at times, with no fatigue even after being unhooked for a few days!

    Yes, drink plenty of water, makes the stuff flush out of you, and things moving along, I drink alot of juice as well, it's fluids, right? lol.. I'm not sure why you can't eat after midnight, no one ever told me to not eat at a specific time, I can eat what and when I want :)

    I have the Ativan (Lorezapam) which helps me with the stimulants, it calms me down, where I don't get so wigged out I think, but I wait till night time to take it, since it puts me to sleep as well!

    Atrophine is that shot they give you right? for the pain, or hot flashes, cramps that Irinotecan can give you? I also get that shot each time I receive it. It does help, but not for the nausea.

    I notice a day of diarrhea a couple days after getting unhooked from the chemo, but all I take is 1 Immodium-AD and it usually helps stop it, and my stools start looking like sludge again ;) LOL

    Hope your surgeon did get it all! and hope you get back to NED!!

    Hugsss!
    ~Donna

    Hi Donna !
    dexamethasone and

    Hi Donna !

    dexamethasone and decadron are the same thing (brand/generic)
    the atropine was a push into my iv as was the ativan,so I guess that is a shot.

    I have ativan pills also ,but they never help the first night.I've tried 3 mg's
    (I usually only do one. my doc said three was fine) but it doesn't work the first night and I'm afraid to take more than that.
    my doc said atropine was for diahrea and cramps,altho she said I do not have enough intestines for any real cramping pain,but that makes me real prone to dehydration if I get diarhea.
    when I said 'nothing by mouth after midnight'I meant the night before any surgery, some tests
    and outpatient procedures.
    I always eat before chemo.
    thanks for your encouragement!
    GOD BLESS
    KATE
  • GOOFYLADIE
    GOOFYLADIE Member Posts: 232 Member
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    Go Baby Go
    You got this girl!!! Nice to meet you by the way!!! Stage IV 11 years clean and clear!! Right hemi colectomy 5FU and leuc for three months and then just 5FU and a cocktaildon't rmember the name, every 7 days for a year. Keep moving forward my thoughts and huge hugs wrapped around you!!
    Goofyladie (Cass)
  • coloCan
    coloCan Member Posts: 1,944 Member
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    Wishing you well in your chemo, KATE58,
    tho I've never done yours, I'm currently on FOLFOX..Different weapon, same enemy...Steve
  • KATE58
    KATE58 Member Posts: 299
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    coloCan said:

    Wishing you well in your chemo, KATE58,
    tho I've never done yours, I'm currently on FOLFOX..Different weapon, same enemy...Steve

    STEVE,
    I DID FOLFOX TWICE-

    STEVE,
    I DID FOLFOX TWICE- 1ST TIME WITH AVASTIN 6 MONTHS- CREAMED A LARGE TUMOUR IN MY LIVER PUT ME IN REMISSION FOR 10 MONTHS -- 2ND TIME TOOK ONLY TWO MONTHS THEN IT STARTED TO TRASH MY BONE MARROW,SO THEY DID NOTHING FOR TWO MONTHS,TO LET MY MARROW HEAL.
    (LESSER OF TWO EVILS..KILL CANCER?... OR...KILL BONE MARROW ?)

    I HOPE THE PERIFERAL NEUROPATHY FROM THE OXYLAPLATIN IN THE FOLFOX IS NOT REAL BAD FOR YOU.I USED TO WEAR THIN GLOVES AROUND THE HOUSE COVERED WITH SURGICAL GLOVES SO I COULD TOUCH THINGS WITHOUT PAIN.
    DO NOT--DO NOT EAT ICE CREAM!!
    GOOD LUCK TO YOU
    GOD BLESS
    KATE
  • AnneCan
    AnneCan Member Posts: 3,673 Member
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    Hi Kate, I am glad your
    Hi Kate, I am glad your first day of this round is over; it sounds like you did well & are on your way to NED!
  • coloCan
    coloCan Member Posts: 1,944 Member
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    KATE58 said:

    STEVE,
    I DID FOLFOX TWICE-

    STEVE,
    I DID FOLFOX TWICE- 1ST TIME WITH AVASTIN 6 MONTHS- CREAMED A LARGE TUMOUR IN MY LIVER PUT ME IN REMISSION FOR 10 MONTHS -- 2ND TIME TOOK ONLY TWO MONTHS THEN IT STARTED TO TRASH MY BONE MARROW,SO THEY DID NOTHING FOR TWO MONTHS,TO LET MY MARROW HEAL.
    (LESSER OF TWO EVILS..KILL CANCER?... OR...KILL BONE MARROW ?)

    I HOPE THE PERIFERAL NEUROPATHY FROM THE OXYLAPLATIN IN THE FOLFOX IS NOT REAL BAD FOR YOU.I USED TO WEAR THIN GLOVES AROUND THE HOUSE COVERED WITH SURGICAL GLOVES SO I COULD TOUCH THINGS WITHOUT PAIN.
    DO NOT--DO NOT EAT ICE CREAM!!
    GOOD LUCK TO YOU
    GOD BLESS
    KATE

    Neuropathy I have in my toes and bottoms of my feet from toes
    to halfway up bottom from oxy and Xeloda taken prior to surgery when this all began. I learned then,too, the hard way about ice cream. Biggest problem back then was diarrhea (still had tumor in rectum plus on radiation then as well),fatigue, loss of appetite, mood swings and a little nausea. This time around I get pains here and there, a little loss of appetite and nausea, extreme fatigue first few days, pains in jaw when chewing/drinking so I try to avoid using back of mouth teeth(where I have them)tho its the bone that hurts.)Beewn thry 2 of 9 doses so far....Hope all goes well for all of us....Steve
  • Muzzy
    Muzzy Member Posts: 175 Member
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    good luck
    Good luck young lady, you are a real trooper!
    Jeff
    Just happy to be here!
  • KATE58
    KATE58 Member Posts: 299
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    coloCan said:

    Neuropathy I have in my toes and bottoms of my feet from toes
    to halfway up bottom from oxy and Xeloda taken prior to surgery when this all began. I learned then,too, the hard way about ice cream. Biggest problem back then was diarrhea (still had tumor in rectum plus on radiation then as well),fatigue, loss of appetite, mood swings and a little nausea. This time around I get pains here and there, a little loss of appetite and nausea, extreme fatigue first few days, pains in jaw when chewing/drinking so I try to avoid using back of mouth teeth(where I have them)tho its the bone that hurts.)Beewn thry 2 of 9 doses so far....Hope all goes well for all of us....Steve

    Hey Steve,
    I thought I was

    Hey Steve,

    I thought I was the only one with that weird side effect!
    All cold food hurt all the time, but the first bite or two of even warm and hot food hurt my jaw,especially at the hinge like the dickens! pins and needles!
    then by the third bite or so I was alright !
    You know it's coming,you know the first couple bites will be painful,
    you know you've got to do it.
    Good luck to you

    GOD BLESS
    KATE
  • KATE58
    KATE58 Member Posts: 299
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    Muzzy said:

    good luck
    Good luck young lady, you are a real trooper!
    Jeff
    Just happy to be here!

    Jeff,
    Buzzard told me NED

    Jeff,

    Buzzard told me NED means; 1)No Evidence of Disease
    2)Naked Ecstatic Dancing



    I hope you ARE NED (1),and DO NED (2) for many,many years to come!!!!
    :-) :-) :-) :-)

    GOD BLESS US EVERYONE!
    KATE
  • Muzzy
    Muzzy Member Posts: 175 Member
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    KATE58 said:

    Jeff,
    Buzzard told me NED

    Jeff,

    Buzzard told me NED means; 1)No Evidence of Disease
    2)Naked Ecstatic Dancing



    I hope you ARE NED (1),and DO NED (2) for many,many years to come!!!!
    :-) :-) :-) :-)

    GOD BLESS US EVERYONE!
    KATE

    wise man
    He is a wise man that Buzzard.
    Jeff
    Just happy to be here!!
  • PhillieG
    PhillieG Member Posts: 4,866 Member
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    Kate
    I hope I wasn't being insensitive with my .1% remark. I think this is why doctors are very cautious about using the "c" word - cured.

    I hope the 3rd time is the charmer and you get to permanent CURED/NED.
    -phil
  • KATE58
    KATE58 Member Posts: 299
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    PhillieG said:

    Kate
    I hope I wasn't being insensitive with my .1% remark. I think this is why doctors are very cautious about using the "c" word - cured.

    I hope the 3rd time is the charmer and you get to permanent CURED/NED.
    -phil

    Phil,
    I've read enough of

    Phil,
    I've read enough of your posts to figure out your context,
    no offense taken. I was thinking the same thing. I'll wait untill it's been a full year,before I do
    my 'naked happy dance'
    no need to tiptoe around me.
    I am so grateful to have found this site and people who 'tell it like it is'
    my friends are supportive, and empathetic,but they tend to just smile a sad smile
    and ask how I am ,tell me what they think i want to hear.hey,what I want to hear is the truth
    and some joking around some

    ANYWHOOO....2ND DAY-WAS UP ALL NIGHT,FINALLY GOT TO BED AS THE SUN ROSE JUST GOT OUT OF BED AROUND NOON.
    WAS ACHEY ALL OVER AND HEADACHEY AND NAUSEOUS ALL NIGHT.NO APPETITE(THERE'S A BONUS)HAVE ONLY BEEN EATING JELLO AND WATER FOR THE LAST 24 HRS,BUT I'M A LITTLE LIGHTHEADED AND UNSTEADY ON MY FEET WHEN I STAND UP I KNOW I HAVE TO TRY EATING SOME PROTIEN AND DRINKING MORE.
    LAST NIGHT THE ATROPINE AND DECADRON HAD ME SO WIRED,I WASN'T SURE IF IT WAS THAT OR I FELT
    LIKE I WAS GETTING THE FLU-FEEL BETTER AFTER SOME SLEEP SO ,NO FLU

    THE LAST THING I WANT TO DO IS EAT OR EVEN DRINK WATER,BEEN UP A COUPLE HOURS NOW
    AND WANT TO GO BACK TO BED.I'LL FIRST TRY TO FEED MYSELF AND HOPE I CAN KEEP IT DOWN.
    I'LL CHECK IN LATER
    GOD BLESS
    kATE
  • Shayenne
    Shayenne Member Posts: 2,342
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    KATE58 said:

    Phil,
    I've read enough of

    Phil,
    I've read enough of your posts to figure out your context,
    no offense taken. I was thinking the same thing. I'll wait untill it's been a full year,before I do
    my 'naked happy dance'
    no need to tiptoe around me.
    I am so grateful to have found this site and people who 'tell it like it is'
    my friends are supportive, and empathetic,but they tend to just smile a sad smile
    and ask how I am ,tell me what they think i want to hear.hey,what I want to hear is the truth
    and some joking around some

    ANYWHOOO....2ND DAY-WAS UP ALL NIGHT,FINALLY GOT TO BED AS THE SUN ROSE JUST GOT OUT OF BED AROUND NOON.
    WAS ACHEY ALL OVER AND HEADACHEY AND NAUSEOUS ALL NIGHT.NO APPETITE(THERE'S A BONUS)HAVE ONLY BEEN EATING JELLO AND WATER FOR THE LAST 24 HRS,BUT I'M A LITTLE LIGHTHEADED AND UNSTEADY ON MY FEET WHEN I STAND UP I KNOW I HAVE TO TRY EATING SOME PROTIEN AND DRINKING MORE.
    LAST NIGHT THE ATROPINE AND DECADRON HAD ME SO WIRED,I WASN'T SURE IF IT WAS THAT OR I FELT
    LIKE I WAS GETTING THE FLU-FEEL BETTER AFTER SOME SLEEP SO ,NO FLU

    THE LAST THING I WANT TO DO IS EAT OR EVEN DRINK WATER,BEEN UP A COUPLE HOURS NOW
    AND WANT TO GO BACK TO BED.I'LL FIRST TRY TO FEED MYSELF AND HOPE I CAN KEEP IT DOWN.
    I'LL CHECK IN LATER
    GOD BLESS
    kATE

    Ensure
    try some Chocolate Ensure..I drank alot of that first for protein and to keep weight on, you need that weight to fight. Some toast and hot chicken soup was good as well :)

    If you still have nausea where you don't want to drink or eat like I had, you may want to ask for the Emend next time, it works well, and then when you get home from chemo, take your nausea pills every few hours.

    Hope you feel better girl!

    Hugsss!
    ~Donna
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    Shayenne said:

    Ensure
    try some Chocolate Ensure..I drank alot of that first for protein and to keep weight on, you need that weight to fight. Some toast and hot chicken soup was good as well :)

    If you still have nausea where you don't want to drink or eat like I had, you may want to ask for the Emend next time, it works well, and then when you get home from chemo, take your nausea pills every few hours.

    Hope you feel better girl!

    Hugsss!
    ~Donna

    Keep the weight on :)
    Hahaha Donna! I just HAD to respond to this comment since it kind of cracked me up (so I have a weird sense of humour). One of the biggest fears of doctors and patients is that they lose too much weight while on the various chemo/radiation and whatever other treatments they throw at us.

    As scared as I was of starting on the journey, and knowing I had a long road ahead... with all sorts of hurdles thrown in my path, the one thing I WAS looking forward to was dropping some weight :) I have gone on every diet known to mankind and never been successful so I figured, if anything can do it, being on chemo will do the trick!! Hahahaha... wouldn't you know my luck! I'm probably the only one in the western universe that has gone through the whole gambit and didn't lose a pound! Grrrrrr! If anything, some of the meds and the problems with muscles/neuropathy, hence less movement than before... I've gained weight!!

    I want my money back!!! Oh wait... that's right... I haven't paid for any of this... nebbermind :D

    Kate58... oh no... don't tell me you are another Farmville addict??? :D
  • KATE58
    KATE58 Member Posts: 299
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    Keep the weight on :)
    Hahaha Donna! I just HAD to respond to this comment since it kind of cracked me up (so I have a weird sense of humour). One of the biggest fears of doctors and patients is that they lose too much weight while on the various chemo/radiation and whatever other treatments they throw at us.

    As scared as I was of starting on the journey, and knowing I had a long road ahead... with all sorts of hurdles thrown in my path, the one thing I WAS looking forward to was dropping some weight :) I have gone on every diet known to mankind and never been successful so I figured, if anything can do it, being on chemo will do the trick!! Hahahaha... wouldn't you know my luck! I'm probably the only one in the western universe that has gone through the whole gambit and didn't lose a pound! Grrrrrr! If anything, some of the meds and the problems with muscles/neuropathy, hence less movement than before... I've gained weight!!

    I want my money back!!! Oh wait... that's right... I haven't paid for any of this... nebbermind :D

    Kate58... oh no... don't tell me you are another Farmville addict??? :D

    Yes,Cheryl,
    I do have to

    Yes,Cheryl,
    I do have to 'fess up ' to being a Farmville addict'
    A friend of mine was really into it and I kept teasing her about her 'silly farmville'
    She kept at me to try it and well,I'm having FUN !!

    Also what you said about weight,I have been a size 8-10 most of my life,
    and when I got sick I went down to a 4,then with them pumping me full of steroids,
    I've gone up to a 14.I too, have been trying to get the weight back down ,but my doctor
    wants me to keep it on.
    I used to kickbox and go hiking all the time and whenever I mention to my doctors I want
    to get back into kickboxing,they get pale and a look of horror comes apon their faces.
    Of course on chemo I wouldn't make it 5 minutes,but the next chemo break I get I'm
    going for it.
    ( I haven't paid for it either)
  • Shayenne
    Shayenne Member Posts: 2,342
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    KATE58 said:

    Yes,Cheryl,
    I do have to

    Yes,Cheryl,
    I do have to 'fess up ' to being a Farmville addict'
    A friend of mine was really into it and I kept teasing her about her 'silly farmville'
    She kept at me to try it and well,I'm having FUN !!

    Also what you said about weight,I have been a size 8-10 most of my life,
    and when I got sick I went down to a 4,then with them pumping me full of steroids,
    I've gone up to a 14.I too, have been trying to get the weight back down ,but my doctor
    wants me to keep it on.
    I used to kickbox and go hiking all the time and whenever I mention to my doctors I want
    to get back into kickboxing,they get pale and a look of horror comes apon their faces.
    Of course on chemo I wouldn't make it 5 minutes,but the next chemo break I get I'm
    going for it.
    ( I haven't paid for it either)

    Me Too!!!
    Hey Cheryl,

    With all my blockages and surgeries and hospitalizations, since dx, I went from 150 down to 112, I was looking skeleton scary, and my onc kept bugging me about gaining weight, how I needed it to fight, and didn't want me to waste away, well, I be darned, I am up to 130 now!! Not wanting to gain that much, I wanted to maybe stay at 125, but I seem to keep going up and feel like I can't stop eating now!!!! I don't want to go up to much again, I'm only 5'2, but trying hard not to go over much, I don't know what's making me want to eat so much, and it's got to be sweet, I need the ice cream, or something chocolately lol...I am now at a size 7, and trying hard to stay that way, bought some new clothes to fit me, and now I have my daughters wearing my stuff now now!!

    Yeah, Kate's a farmville addict, we're trying to build her up a nice big farm! Kate, you have to see Cheryl's farm, it's one of the most organized, sprawling farms I have ever seen LOL...not a mess like mine LOL....

    Hugsss!!
    ~Donna
  • maglets
    maglets Member Posts: 2,576 Member
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    Shayenne said:

    Me Too!!!
    Hey Cheryl,

    With all my blockages and surgeries and hospitalizations, since dx, I went from 150 down to 112, I was looking skeleton scary, and my onc kept bugging me about gaining weight, how I needed it to fight, and didn't want me to waste away, well, I be darned, I am up to 130 now!! Not wanting to gain that much, I wanted to maybe stay at 125, but I seem to keep going up and feel like I can't stop eating now!!!! I don't want to go up to much again, I'm only 5'2, but trying hard not to go over much, I don't know what's making me want to eat so much, and it's got to be sweet, I need the ice cream, or something chocolately lol...I am now at a size 7, and trying hard to stay that way, bought some new clothes to fit me, and now I have my daughters wearing my stuff now now!!

    Yeah, Kate's a farmville addict, we're trying to build her up a nice big farm! Kate, you have to see Cheryl's farm, it's one of the most organized, sprawling farms I have ever seen LOL...not a mess like mine LOL....

    Hugsss!!
    ~Donna

    weight up
    put me on the list for weight up. I know Iknow it is so silly to yap about a few pounds but my clothes don't fit. I am now a 14 ....used to be 10 and i keep buying secondhand jeans waiting for the magic weight loss....it hasn't come.

    I think mine started with the steroids too Kate....at least that's what I blame it on

    Cheryl, you are not alone :)

    mags