Cancer Survivors Network

Thanks Shayenne !
I was hoping someone would tell me it was better than the oxylaplatin( which was horrible)
I won't mind so much losing my hair,it's better than being nausous all the time.I've already bought some pretty scarves and knit hats, good thing it's winter, I guess with the ileostomy the diarrhea isn't much of a problem if I stay hydrated.
Thanks again
KATE

have very king hair down to my waist line, but saw it all going in clumps in the shower, and had my 14 year old cut the back of my hair, up to my shoulders, she did a pretty good job, and it took the weight of the hair off where it stopped falling out. But my scalp sure feels cooler, and I just put it up in clips now, no scarves, I do have some cute hats from Claires I bought, kind of trucker/baseball caps in black that I like to wear as well, I don't think you'll go bald.

I never lost any eyelashes or eyebrows.

But make sure they give you great anti-nausea drugs. I am on Emend, Dexamethasone, compazine, zofran, and ativan. When I first had my treatment, I was sicker then a dog, and that is because I wasn't taking the drugs right, and they had no effect on me, I stayed in bed, thinking I was dying, and the nurses called to check up on me, and told me that I will feel better next treatment, and that's when they introduced the Emend and Dexamethosone, which has been heaven! so take those pills even if you don't feel sick, just to stay on top of it!

My nausea seem to be coming on faster, since my treatments are accumulating, so they now have been giving me this injection of I think amoxyl or something, in my IV as I get my chemo, which makes the nausea stay away for a week! it's a longer lasting zofran, all I need to do is take the compazine and ativan a couple times a day, and I haven't had any nausea at all.

And if you do get diarrhea, which can dehydrate you, take one immodium pill, and that should help that, you don't want diarrhea too long. I believe the Irinotecan is much more tolerable, but there are some people who did have a hard time with the drug as well, people do react differently to other things. You won't have the neuropathy at least that Oxy causes, Oxy scares me.

Hugsss!
~Donna

Thanks Donna,
I didn't have too much nausea with the folfox (oxy) but the periferal neuropathy was rough!
the muscle cramps and the pain when touching cold things was bad.One day I forget and took a big drink of ice water and I thought my throat was going to close up.My doctor said she was not going to give me dexamethasone ,just some zofran and a little ativan with it. You think the nausea is worse with irinotecan than with oxy?
KATE

put me on just Zofran, Compazine, and Ativan for the nausea, and it didn't even touch it for me, I couldn't even get out of bed, or drink or eat anything, it was bad for me. Then the second treatment included the Emend and 3 Dexamethasones, which I get prescriptions for now, and it's like heaven now, I do smoke maryjane now just for the nausea as well, which works faster then the pills, but I needed the big guns out for my nausea.

I was never on oxy, I have been just folfiri with avastin since February, and will you be carrying the pump as well for 46 hours with 5fu in it? If so, I feel fine when connected, but once the home health nurse comes to disconnect me, it seems I'm very tired the next 3 days before I start perking up again, and feeling myself. It wasn't as bad as I thought it was going to be, but the fatigue part was pretty much the only problems I've had with the nausea. I wish you luck on it.

Also eat with plastic utensils, since the food may taste very metallic on regular utensils, that does help, just for a few days till after your disconnected, and drink lots of water (that even tastes weird on chemo) but I love crangrape, sunkist orange soda, and Iced Tea, to drink, since those taste good, even on chemo :)

Any other questions, just ask away, I think you'll do fine :)

Hugsss!
~Donna

Gave me a wig as well, but never had to use it, it just thinned right underneath the top hair, and back of my head, but I can fix it to where I can't see it, and it's actually all growing back in now, and sticking straight up the top of my head as it grows, so it looks like I have these spikes that I have to spray down with hair spray to keep them down lol...

Hugsss!
~Donna

I am looking forward to when it starts growing back; I keep feeling for the little "spikes"' none yet but I know the rate of hair loss has slowed down.

to color it, because theres a few grays in it, but afraid it will make it start falling out again, so been staying away from the color, which sucks for me, but this gray is kind of a pretty shiny silver I must say LOL

I know what you mean about the grays; I have them too, but I want to wait until my hair is thicker & stronger to dye.

THE EYELASHES GROWING WAS THE ERBITUX,FIRST THEY FELL OUT BECAUSE OF THESE LITTLE PUSTULES I KEPT GETTING ALONG MY LASH LINE,THEN THEY REGREW SO LONG I HAD TO CUT THEM.THE ERBITUX ALSO GAVE ME REALLY BAD ACNE AND RASHES. ALSO I KEPT GETTING NAIL INFECTIONS WHICH I FOUND OUT LATER WAS THE ERBITUX.

DONNA, I WAS ON THE PUMP FOR 48 HRS WITH 5FU AFTER MY INFUSION OF OXYLAPLATIN(folfox)
I WAS SICKER AFTER THEY TOOK ME OFF THE PUMP FOR 3-4 DAYS.THEY WANTED TO PUT ME ON ERBITUX AND THE 5FU PUMP ALONG WITH THE IRINOTECAN, BUT I TOLD THEM I WOULD NOT DO ERBITUX AGAIN,AND IT WAS TOO HARD GOING HOME WITH THE PUMP AS I AM A RESTLESS SLEEPER AND WAS ALWAYS SCARED I WOULD PULL OUT THE TUBES IN MY SLEEP.SO THEY ARE GOING TO PUT ME ON IRINITECAN AND AVASTIN,WITH ZOFRAN FOR NAUSEA AND MAYBE THE XELODA PILLS AGAIN.

MY FRUSTATION IS THAT I FEEL FINE WHEN I AM ON A BREAK AND EVEN THE YEAR ON XELODA PILLS I FELT GOOD. YOU WOULD NEVER EVEN KNOW I WAS SICK,THEN THEY FIND A SMALL TUMOUR AND GIVE ME CHEMO THAT MAKES ME SICK .THEN WHEN THEY STOP THE CHEMO I FEEL OK AGAIN.THE ONLY CHRONIC SYMPTOM IS FATIGUE IT'S A CATCH 22
THANKS FOR ALL YOUR INPUT HOPE YOU ALL FEEL WELL TODAY
KATE

MAYBE IT WAS BENADRYL ? THATS WHAT THEY GAVE ME WHEN I HAD A REACTION TO OXYLAPLATIN
I LOVE TO HEAR THAT THE IRINOTECAN IS BETTER THAN THE OXY AS FAR AS SIDE EFFECTS GO.I HATED THAT NEUROPATHY I AM SO NERVOUS ABOUT STARTING THE IRINOTECAN. THEY WANTED TO START THIS MONDAY,
BUT I WAS AFRAID I'D BE SICK FOR THANSGIVING SO WE'RE WAITING TIL THE 30TH.I KNOW THE 28TH AND THE 29TH ARE GOING TO BE LOOONG NIGHTS!

It's great to skip the week of a holiday, but you know what? they gave me a new pump yesterday! it's quiter, it's plastic, it kind of looks like a yellow lantern or something, it's smaller, so it fits in my pocket, or purse, there are no batteries, it just goes right from the lantern looking bulb to my port, it's awesome! I don't hear that "rrrr" noise it does once in awhile, no beeps and clicks, no nothing, I had a much better sleep with this new pump they gave me, it's sooooo much lighter! I actually walked around with it in my pocket instead of carrying that fanny pack around! I wonder if it's available with your home care that they have this.

I would take the Irinotecan though hun, it really helps shrinks those tumors, and it may only take a few treatments, I have heard from alot of people Irinotecan is better then Oxy, but go with your guts on whats good for you, and glad to hear that you'll feel good for Thanksgiving. I get disconnected from my pump today, and I sometimes don't even have the fatigue I used to get after disconnection. I think my body may be just adapting to it. Plus, taking those extra vitamins and Probiotics seem to be helping give me alot more energy.

I hope you have a wonderful Thanksgiving, and just follow in your heart what you think you need done. We'll be here for you whenever you need us!

Hugsss!
~Donna

You have the pump that I've had all along. Kind of like a baby bottle. It is nice not to have any pump noise - I wouldn't do well with that. I do stick it in robe or jacket pockets rather than on the belt most of the time.

Kate,
I called my Oncology nurse and asked her! Ha.. It was Atropine.

Something else. I did not throw-up with Irinotecan (camptasar). I maybe felt sick to my stomach a couple of times but took the pills (for that) and it left me.

Got my fingers crossed for ya!

Claudia

That's the name of it Claudia, thanks, it does help with the hot flashing, cramps, and pain and sweat during the infusion of the Irinotecan, which I get in my arm right before they do the Irinotecan.

Hugsss!
~Donna

Good news Anne! That's the same effect I got from it as well, my onc was pleased that the tumors are shrinking. It took a couple rounds, but at least they aren't even spreading anywhere! I was so scared of her putting me on oxy, I'm glad she didn't, though, you never know, if the Folfiri stops working, she can still put me on the oxy.

And Kathryn, yes! kind of like a baby bottle, much more convenient and quiet! was nice to have like that lol...

Hugsss!
~Donna