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SOME ONE JUST SHOOT ME NOW !!

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

hey everyone,

had my second dose of irinotecan today (no evil atropine!)
my head is killing me,I am nauseous, and ache all over.

I have diarhea ( not too bad ,because the last thing I want is food,but I WILL
force myself to eat,and drink.
I am dog tired and wide awake ( the dekadron)
and from experience I know the next 2 days will be worse.
I don't have a fever,but it feels like august in my apt.
and I have a dry non productive cough without lung or sinus congestion.
Can't they just put you in a drug induced coma for a week? (lol just kidding)

I know I've felt worse (folfox) , but that's NOT NOW!!
for nausea I have zofran,which works ok,doesn't kill all the nausea, leaves a little bit. and something called TRIMETHOBENZAMIDE,300 mg CAMPC every 8 hrs,which I can not find in my prescription drug book from 2006 ,must be a new generic,anyone know what this is? I accidentally threw away the drug info sheet that came with it.
I don't want to try it until I know.once they gave me REGLAN and it made me SICKER !
ANY advice, suggestions, ideas, jokes, etc, etc, WELCOME!!
I know I am being a big baby,(isn't today nat'l big baby day ...I could have sworn..)
kATE :-{

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

why do prescriptions labels always say" 1 capsule every 8 hours BY MOUTH"...where do they think I am going to put it ?

khl8
Posts: 810
Joined: Nov 2009

Ok, I will set the scene. When I had my illeostomy I would always rinse the bag out by using a glass of water in the bathroom. (by the way this is a chemo brain moment)
So, one day I was in the bathroom and taking care of business and I still had water in the cup after rinsing out my bag and I just reached over and opened a drawer and dumped it in. Not the sink, a drawer!!!! As soon as I did it, I was laughing my *** off, why did I do this?????
The best part of the story is that a week later I did the same thing!!!!
Kathy

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

That's too funny!
I keep trying to make phone calls on my t.v. remote,
and change channels with my phone!
The other day,I stopped at a green light,and couldn't figure out why this guy behind me was leaning on his horn!

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Yesterday, I walked up to my front door and tried clicking the unlock button on my car's remote to open the front door. Obviously, it didn't work!

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

things like that all the time.i am always putting things in the microwave when they really are supposed to go in the refridgerator.it frustrates me but then when i get on here and read things other people do i laugh about it.im so glad im not alone and going crazy....Godbless....johnnybegood

dorookie
Posts: 1736
Joined: Jul 2007

Now that is funny. You got me laughing in my office like a nut. That was funny...Thanks for the laugh...

Beth

butterfly23's picture
butterfly23
Posts: 257
Joined: Mar 2008

I HATE FEELING NAUSEUS!!!!! I had my treatment on thurs. irrenetican ( BAD SPELLING) I have it every 3 weeks with 2 weeks of xeloda. I am nauseus for 2 1/2 weeks. I do take zofran but it only helps a little. Unfortunaley I know where you're coming from. I give you props for eating. I try, I can't. I can get liquids down though. I hope you feel better soon. It sucks to feel this way! I will keep you in my thoughts!

Karyn

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

now I keep loosing my balance,
NOT DIZZY
happened last time, last time 3 days told onc ,she said was probably from atropine.
NO atropine this time.
my onc is out of town til end of month
doing bone marrow transplants at UNIV OF PENN HOSP.
can only reach her by cell,during day
don't want to talk to doc I don't know
anyone have this?
kATE

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Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Kate, ask for Emend, that was a lifesaver for me for the nausea, I've never heard of those other drugs you mentioned, but taking an Emend, for the 1st 3 days, and Dexamethasone, with the Zofran and Compazine really worked for me, I'm on my 17th treatment of Folfiri and have never puked, and not felt very nauseous since my first treatment, which was hell! From the second treatment on, it's been fine, but of course I do lose balance sometimes as well, especially in the shower, I feel abit lightheaded, and believe me, I've walked into rooms and stopped, looked around and then forgot what I went into that room for in the first place! LOL!

Ativan is awesome, it helps me sleep, and is good for nausea as well, I take 1 mg every night before bed, and it helps me sleep, as does Xanax, let your onc know you can't sleep..though I told mine I couldn't sleep and she suggested "Benadryl" because sleeping aides she said only work for so long, and I can't take Benadryl, it gives me the creepy crawlies, making me itch under my skin or something, but I hate it.

Are you staying on top of those meds? I know I take them every few hours, NOT every 8 hours, since it doesn't last that long anyway, take them sooner. Try some saltines, it calms the tummy, some nice hot herbal tea, and definitely some soup! Sorry to hear you're having such a hard time with it, but it's been ok for me since taking that Emend, I don't know what I'd do without it!

Hugsss!
~Donna

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

YEAH,I have been taking the zofran 8 mg, every 6 hours
she gave me the dexamethasone (decadron) in my premeds,
along with 1mg of ativan,and the zofran.
I take 1 mg of ativan every night to sleep,but I'LL take 2-3 mg
tonight because the dexamethasone hypes me up.(my doc said that was ok)
and I probably still won't sleep

I can't take benedryl either it gives me the heebee jeebees too.
my doc told me she would save the Emend as a last resort,
because it has to be taken along with steroids for 3 days,
and they hype me up.
well , I feel better that some one else gets off balance too,
( not that its GOOD that you do)

I found out that the trimethobenzamide is generic for Tigra and I have taken that before,
it will make me sleepier and help with the headache.with the folfox,I took it before I went to bed and then back to the zofran in the morning

I just made myself a cup of decaf white tea and
I AM GOING TO TRY TO MAKE MYSELF EAT SOME SALTINES.
Thank you everyone for your imput.
kATE

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KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

in Pennsylvania only THC (pot)in pill form is legal,but the tigra (trimethobenzamide) seems to be working .it took away the nausea and headache and I ACTUALLY SLEPT LAST NIGHT.

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

SUCKS too dont waste your money!!!!!Godbless..johnnybegood

fringetree
Posts: 66
Joined: Dec 2009

Do you have a decent internet connection? If so, you should go to Hulu.com. It is a website where all the major networks stream their programming for free...you can watch tons of TV shows (and movies) whenever you want. It has really helped me when I have insomnia. I just hook up my earphones to my laptop so I don't keep anyone else awake.

http://www.hulu.com/browse/alphabetical/tv

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

yeah,Kathy
i forgot about hulu
i end up watching the canadian shows
davinci's inquest,regenesis,cold squad,etc
but you can watch them when you want they list all the shows episodes for all seasons,
except current.
you pick the one you want to watch.i have comcast cable and internet i can hook in thru
www.fancast.net
my problem is i have my antivirus software to run at 3:30am the first takes an hour and a half,the second an hour 15 minutes,if i am on computer they just kick me off.

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pokismom's picture
pokismom
Posts: 153
Joined: Jul 2009

Oh I'm so sorry you don't feel good Kate! I hope things get better after these first two! When I was on folfox, I used to lose my balance all the time, kinda wobbly. I asked the Onc and he said that could be a side effect! I thought really, my kids used to hold onto me all the time whenever would walk somewhere, it's like I was a little old lady! I too used to get anxiety and amped up from the dexamethazone, had to take the Ativan to counter that, I thought I was going crazy or something. Hang in there, I'm rooting for you!
Much love
Donna

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Yeah, my onc has me on all those meds, and always checks with the pharmacy to make sure they are ok to take together. She said everything gets processed through the liver, and when I go for chemo treatments, my pre-meds before infusing is 1 Emend, 3 Dexamethasone, 2 Compazines, and a shot of a longer lasting Zofran, which lasts a week in your system, and works great, where I don't have to take the pill form Zofran, or it could counteract..I have to wait 5 days before taking the Zofran pills, but the Emend I take in the morning, and then the next, (it's a 3 days pill) and the dexamethasone I take with it, and then 1 dexaemethasone during a late lunch. I will take the Compazine about every 4 hours with it.

My onc said it seems like alot, but she wouldn't give me prescription pills that didn't work together, they do watch that, and make sure they mix well with each other.

Hugsss!
~Donna

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

ohhh you poor things...hang on

here come the hugs........

mags

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Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I have a pdf file of the different post chemo antiemetics (lots of them). I can't copy and paste here since it is pdf. PM me your email address if you want me to send it to you.

If you get Aloxi (which I do) then you aren't supposed to take Zofran, Anzemet or Kytril for 3 days.

With Emend, you can take anything else - no restrictions. But you you might not even need anything else.

I get Emend first. It has to be given first. You can't "mix it" with anything else when you get it. But you can get other drugs right after it. I get Decadron and Aloxi right AFTER the Emend. Then on day #2 and day #3 you just take one pill each day.

Kind of like they hang leucovorin and oxaliplatin together, but the 5FU is always by itself. Certain drugs can be infused at the same time. Others cannot. Emend has to be given ahead of everything else, and only by itself. Maybe this is what confused your onc if it isn't a common drug there yet?

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

well, maybe nature via Canada Dry...lol...

NOTHING worked for me, nausea-wise, drug-wise....so, I got creative....

The dutch, forever, use ginger in their deserts, especially after a big meal, as a 'digestive'.

I bought REAL ginger ale (not the flavored stuff...it says on the can...I bought Vernor's). The bubbles helped, and the ginger REALLY helped...I just sipped it. It is a sharp taste, so for a milder experience, I have also nibbled on candied ginger, or even the pink ginger served in chinese restaurants...take it slow, it's a bit of an aquired taste.

That, and making sure that I always had a bit in my tummy...scalloped potatoes worked GREAT for me, and still, to this day I LOVE 'em....

Another thought from the dutch: licorice!!! It is reported to also help, like ginger. I don't care for it, so I can't say, but my beau always has some after a stomach proceedure...he says it really helps!

Hugs to you, dearheart, and I always kept in mind that if I was this sick, the cancer MUST be getting sick, too~!

Hugs, Kathi

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

yeah I know ginger is great for stomach problems
licorace is good too but you have to be careful ,you can overdose on it.
canada dry ginger ale is now back to using REAL GINGER in their ginger ale.
thats my favourite brand.
my mom was born in canada,her mother immigrated from scotland when she was a teenager and after she and my grandfather got married,they moved to the US when my mom was about 10.My grandfather was RCMP.when they moved to philly he became a policeman
he always had great stories!

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

ahhh Kate....some canuck in you...yes canada dry is good stuff....I liked a bit of candied ginger too.
mags

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

On my bad days, I've asked the exact same thing - "Please shoot me now." I've also asked why they can't just put us in a coma for 6 months and wake us when the chemo is done. (Only I'm not so sure at this point I was kidding, I think I'd take that option if offered today.) We must think alike...

You are NOT a big baby. Some of these days are VERY tough to get through. You do what you can. Plug along one day at a time until a better day comes along.

Nothing kills all the nausea for me. But Emend makes a big difference. I get Emend, then Decadron and Aloxi - all IV before infusion. I don't take any other pills except one Emend in the morning no day #2 and #3 (and last tx I took it day #4 and #5 also - it did help on day 4, but not really on day 5). I have Zofran which I can take after that, but it gives me a bad headache and doesn't seem to help much for the nausea. I have Ativan, but it mostly just makes me sleep - not good if I need to work. I had an allergic reaction to Compazine first round. I HIGHLY recommend trying Emend if you have not.

If you live in a cold climate and have the furnace running, get a humidifier if you don't have one. That may help with the cough.

I dress in layers, and take them off and put them on, day in and day out. On and off, on and off - just like menopause all over again. That is about the only way to deal with the hot flashes and sweats these nasty chemicals cause for us. If you don't already - try dressing in layers, and do the strip tease dance, then put it back on and do it again. ;)

Hang in there. I feel for you. It is tough, but better days are coming after you get through the next few.

AnneCan
Posts: 3692
Joined: Oct 2009

Hi Kate,

I hope you are feeling better today! I had chemo treatment yesterday too, & came home & went right to bed!

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

I do feel better today except I am so fatiqued.
I get out of breath from the slightest chore.
my doctor is out of town,so another doctor i don't know
wrote my orders yesterday and messed them all up.
fortunetly,my doctor always gives me the 'recipe'
and I knew it was wrong ,so they made a phone call to my doc and got it straight.
but the other doc doesn't know about my platelet problem,if it's not at least 100,000
they skip my chemo that week.
one time last year,a substitute doc was going to give me chemo even tho my platelets
were only 82,000.I refused chemo that week and my doc was glad I did.
hope you feel better too, Anne.
kate

Topher67
Posts: 19
Joined: Nov 2009

Go to drugs.com, great site that tells you anything about a drug, you can even type in a list of drugs and it will tell you if any of them react with each other.
Hope you feel better soon.
Chris

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jillpls's picture
jillpls
Posts: 241
Joined: Mar 2008

They seem to go together. I get so sick with the coctail. so my friend gave be wonderful peppermint candies to suck on and it really helps. They are called Choward's peppermints. They are better than any other mint and have helped me immensely. I've been using zofran, compozine, and amend and now I'm going to try a compound cream that is supposed to help. You put it on the inner part of your leg or arm. If it works I'll let you know. My last treatment put me in the hospital for two day so I do understand how sick you feel. I'm so sorry you have to go through this. Hang in there. It will get better. God bless you today
Jill

k1
Posts: 220
Joined: Dec 2009

So sorry to hear of your discomfort! I hope that these side effect subside quickly and you are good as new and have a few days off before the next treatment.

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