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Irenotecan without 5FU

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

HI, anyone doing Irenotecan without the 5FU?
Today we removed the 5FU from my treatments. I am now just on Irenotecan and Vectibix,.
I am being treated for metastisis to the lungs.. many very tiny nodules. DR referrs to them as very minimal
We removed the 5FU to help my hands sores and mouthsores heal. will revisit adding back should we see any changes that show this med needed.
However i have been taking 5FU for nearly over a year.. pre-surgery, post surgery and restarted with metastisis diagnosis..

I have never really felt nausea to the degree I am feeling it today.. post treatment.

Serena99
Posts: 8
Joined: Sep 2012

(i am typing for my mom)Her most recent chemo history: she did 5 rounds of irenotecan with erbitux and 1with irenotecan and 5fu and vectibix and 1 of just vectibix.
The rash from the erbitux and vectibix are still bothering her. She has dozens of creams, lotions and gels. Her skin is so dry and her fingers are cracking on the creases. Her last vectibix was 2 weeks ago. The neuropathy on her hands and feet continues even though she stopped that chemo over a year ago. I forgot to mention the recent 5fu gave her the worst mouth sores she's ever had from previous 5fu treatments.

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

i did iritatecan+avastin for about 1 year it wasnt to bad we left out the 5fu because it would worsen the diaheria.but remember we are all different but i did handle it better than the oxy (in 2009)good luck and Godbless...johnnybegood

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

I had the Irinotecan without the 5fu also (bad chest pains so removed the 5fu) But was getting it with avastin also. Nice not having to take home the 46hr pump. Mine to was for small lung mets.

Hooley's picture
Hooley
Posts: 149
Joined: Aug 2012

R u still on chemo? How many lung mets and did they go? Ts

lepperl's picture
lepperl
Posts: 39
Joined: Jul 2012

Hi there, I did irrinotecan alone for about three doses. I don't know why my Dr did that. I had to research and ask for the 5fu. (I have a new Dr now)I had slight node progression with irrinotecan only but it was so slight my cancer was considered fairly stable. Get your hands and feet better. I use aquaphor cream everyday. I also brush my teeth with baking soda and this keeps the mouth sores away. I soak in the bath several times a week. I add a box of baking soda to the water and this keeps the rash away. Of course if you have open sores from a rash then do NOT soak in tub. You could infect the rash. And we all know this but I am going to say it anyway. hydrate, hydrate, hydrate. I had worse diarrhea with irrinotecan alone. The 5Fu causes constipation for me so the two drugs together kind of balance eachother out. If diarrhea happens to you make sure you have immodium ( or your Dr's drug of choice) on hand. You need to get ahead of it before it gets you. My original Dr did tell me that he had a patient who is on irrinotecan alone and has had no progression for over a year. I hope it works out for you. Get better so you can get the 5FU back.
Lori

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

I've been on Irinotecan & Erbitux (sometimes just Erbitux) since 2005-06.
It's been working well, I still manage to get 1-2 small growths in my lung(s) but the RFA's have handled them very well.
- phil

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

RFA is what we are talking about doing too..
I am glad to know this is managable.

My biggest concern right now is handling the insurance as my facility may be going out of network Oct 1st and who has 20% of a 40000/month bill for chemo.. I fall over everytime I see the EOB the insurance company sends.. Praying very hard they settle the contract..

Thanks for being a model Phil.. I hope to have the same success..

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

Dealing with cancer is hard enough, throw insurance companies in there too and it's real crazy. Early on in my treatment, my insurance company (UHC - United Health Care) was part of a program called "Cancer Resource Services" (I'm not 100% sure of the name but I'm 90% sure that's correct) and they helped me by making sure Sloan was in my network.
It helped. I wish I had more info and I'm not even sure if they're still working for me...
Sorry, it's late/early 4:51am)
Good luck, RFA's Rock!

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