CancerCompass message board discussion started by Revibug on 6/14/2006 http://www.cancercompass.com/message-board/message/all,5658,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi Everyone. Tomorrow I take my mom for her first infusion session of Avastin/CPT11 and I'm terrified... I read up about the "expected" side effects, but I'm still scared of what will happen tomorrow during/after the treatment. Dr. Lai will come by and make sure everything is running smoothly, but Im still nervous!!! AHHHH!!!!! This is only my 4th/5th post, but everyone has been so nice, comforting, honest, and just there for me! SO THANK YOU!!! You can't imagine how amazing the feeling is to jump online and find a community that actually KNOWS how you feel and what you're going through! I mean, the people surrounding my family have been amazing and just extend themselves to us unconditionally, but you guys KNOW-unfortunately- what we feel, what we hope, what we fear, and what we live for. So again, thank you everyone who takes a few minutes to respond. Makes this insanity somewhat more tolerable and easier... In any case, I wanted to know if anyone can share "real-life" side-effects from Avastin/CPT-11? Did you get nauseous? Were you drained? Did you have diarrhea? I know a few people responded with their experiences and shared some great medical info, too- but I wanted to know specific "tricks" I can use. For example, is there any way to ease diarrhea? I heard that to prevent dehydration there's a "fancy" water called Penta that's recommended? Just stuff like that... maybe what to eat OR not to eat before/after treatment... Thanks a million!!! Revi Revibug Wed, 14 Jun 2006 00:00:00 GMT ... lots of (((Hugs))) as you begin this. I'm certain some people here will be able to give you some feedback. My Dh is still a novice and we're just about to start the second round of Temodar. Sally w/o David dx GBM 3/28/06 Radiation and Temodar completed. Next MRI 7/12/06 Sallysem Wed, 14 Jun 2006 00:00:00 GMT I had CPT-11 without Avastin. I got very tired, but no nausea or anything else. Brainy_chick Wed, 14 Jun 2006 00:00:00 GMT hi To start Love,Prayers and Hugs to you. Very interested in any replies as my questions are the same. MY wife has resection surgery three times 12/04, 8/05 and 05/06 we will be starting Avastin and CPT-11 about 7/17/2006 due to vacation 7/1/06-7/15/06 (Spokane). In the mean time our Dr. is giving us one round of CCNU. We have had Temodar, radiation,Clinical trial(Cilengitide)in the past, but they seemed to be good only for short term. Hope for All Hal hal56r Sun, 18 Jun 2006 00:00:00 GMT We have had three treatments. Each every other week. My wife takes Lonox in the morning for Diarhea and is fatigued for two days afterward. That is all. We get an MRI next Tuesday. The last time we saw the Doc, he had talked to Friedman at Duke who was presenting interim data at a conference. He was presenting a 54% complete remission rate for the folks enrolled in his study. I hope you folks have good luck. Our prayers are with you. For the folks going on Vacation in Spokane, we live in Spokane and are having a fund raiser the 8th of July at Nine Mile Resort. For more info go to tobysfund dot com. Would love to talk. Could you please post the protocol you are getting the Avastin/cpt-11. The first Doc wanted avastin every other week and cpt-11 every week. The second doc is doing both drugs every other week. He said we would be miserable with cpt-11 every week. Is there a two week break after three injections? The current doc wants no break. I have seen the protocol on dukes web site with a break. Each break constitutes a cycle. Love & Prayers Bob & Toby Cidorov Wed, 21 Jun 2006 00:00:00 GMT Hi! I'm SO sorry to respond late! I didn't see that you asked me a question! I wish there was a way to post email/AIM addresses on this forum, too- so people can talk in "real time". Anyway, we began our first Avastin/CPT11 treatment last Thursday. We went to the hospital for a 4 hour drip. First the CPT11 and then the Avastin. Each drip was 90 minutes, but you know- you need all the pre-chemo meds and stuff- that's why it took long. My mother gets-I THINK- 340mgs of the stuff. I will confirm this when we go Thursday the 29th. She did fine for the first 3 days but has been SOOOOOOOO freakin' tired she can barely walk, literally! She already (since the surgery) has weakness on her left side and "suffers" from motor-control issues, but the Avastin f*cked things up majorly! As you saw in my last few posts, these last few days have been insane! WE WENT FROM BASICALLY PLANNING A FUNERAL TO REJOYING & CELEBRATING! My mother looked "that bad" for the last few days. Glazed over look, SEVERE weakness- I hate to call it paralysis, but it for sure looks like it- she was talking low, and has just been EXTREMELY sluggish. When we saw the doctor and she saw her, she was very worried. She told us all the horrible stuff I posted before and basically, without an MRI, "judged" my mother's situation as that of a dying person! But low and behold- no GROWTH, no stroke, no hemmorhage... she's gonna get a body CT and then the entire team will figure out what the deal is from there. They don't think it's clots, but they just wanna make sure... as for the suddenly severe decline- I don't think the doctors know! Everyone is "blaming" the chemo... so we'll see. So yeah, that's the dose we're getting and I'll write more about the meds next week. How's everything coming along? Love, Revi Revibug Fri, 23 Jun 2006 00:00:00 GMT Try taking the recommended doses of Immodium the day prior to chemo and the day of chemo. It worked for my daughter. Debsmom Thu, 17 Aug 2006 00:00:00 GMT