Any experience with Xeloda, Oxaliplatin & Avastin?
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February 7, 2007 at 12:46 am #14959davidhSpectator
Peter and others,
My wife was on Gemzar & Oxaliplatin every 2 weeks from March 20, 2006 through Jan. 10, 2007 except for one treatment cancelled because of stent replacement. She had great success on a metastasis in her liver, going from nearly 7 by 7 Cm to 2.3 Cm in 6 months, and was lucky to have very few side effects. She is presently being considered for surgery.
I know this is not your regimen, but wanted to tell you that on her Oxaliplatin infusion day, in addition to anti-emetic and steroid pre-meds, she was given Magnesium & Calcium infused for 1 hour prior to the 2 hour Oxaliplatin infusion, followed by another hour infusion of Magnesium & Calcium. We were given this regimen by our advisory Oncologist in Dallas, whereas our local treatment center does not usually follow the Oxaliplatin with the second Mg & Ca infusion. Whether this helped her side effects or she just had a high natural tolerance, I don’t know, but thought I would pass it along to you and any others on Oxaliplatin.
Our prayers for you all.January 28, 2007 at 6:31 am #14958woodybcox-netSpectatorJerry and Jeff – I make 3 with infusion problems. At the end of a clinical trial, my porta-cath wasn’t properly flushd, and 4 months later, after the nurses had difficulty clearing my porta-cath, they forced saline through which ruptured the catheter (which no one realized at the time). I got some pre-meds and then the oxalyplatin was started. After a while I complained about a sore chest and they realized that I was being infused into my chest through the ruptured porta-cath. They stopped, and sent me home. The good news is that I didn’t have any of the cold sensitivity until after my next infusion.
I have been collecting case studies for gall bladder and bile duct cancer. For a copy, send me an email at woodyb@cox.net. If you cannot open Excel spreadsheets, let me know and I can send you a pdf document.
Woody B
January 28, 2007 at 2:47 am #14957jeffgMemberJerry, Thanks for sharing your experience. They actually give the blanket, scarf and mittens when you start treatment now and I have made good use of them already. I can relate to all those side effects you mentioned. I don’t remember it being quite this rough with cisplatin or carboplatin. I think if I continue this treatment a lower dosage is in order. I mean my eardrums even hurt from just opening the darn fridge door. I expect my platelets to be down the tubes when I go for labs Monday as I haven’t been able get them back up there to a normal range for over a year now. I started this treatment at 109.
Jerry I can relate to the being infused incorrectly as well. I had a nurse who actually missed my porta cathe and infused my chest and landed me in the ER. All they could do at the time was knock me out with morphine. That was the pre medication only. I can’t even imagine what you went through! I’ve had some education in biological /chemical warfare and it is not nice at all. Like most chemo drugs there is no antidote known for over dosage. I imagine they couldn’t do all that much for an infusion to your arm. Did they use steroids or epinephrine or what? Sorry to hear that happened. If you want, I’m willing to listen about that unfortunate mistake. I’m sure it would open some eyes to be on the alert. I know and recite to the nurse (different nurse) exact size lenght and guage and color of blood since it happened to me. Thanks again Jerry.
Jeff G.January 28, 2007 at 2:00 am #14956lynneSpectatorJerry, thank you so much for all of that information. It’s very helpful for me, at the beginning of my treatment, to hear about your experiences.
Lynne Dahlborg
Middleboro, MAJanuary 28, 2007 at 12:58 am #14955jerry-dMemberJeff G asked about experiences with Oxaliplatin/Xeloda (capacitabine). I was on that combination through a clinical trial at the Univ. Wis. Comprehensive Cancer Center for 1 years, 5 months (May 2004 – Nov 2005), then for two months (April – May 2006).
As most people have mentioned the most common side effect is the cold induced neurophathy — tingling extremities and very sensitive to cold for (in my case) up to 5 to 7 days following treatment. Breathing cold air, trying to swallow (hot or cold) is a little bit of a challenge, but I became used to these things, and was able to deal with them. For instance I used gloves when typing on the computer until my fingers became less sensitive after each treatment. It seemed to be standard practice to give steriods at time of treatment to prevent nausea, but then for the next couple days I was climbing the walls and back down the other side. When the steroids wore off, I slept almost continuously for a day or so. My appetite was not ggod, partially because the neurophathy gave me the feeling of a lump in my throat, which made it hard to swallow. (Of course there was no throat lump, just as car door handles were not made of ice!) I was on the program long enough that the drug company gave me mittens, a blanket, a scarf and a carrying bag with the name Oxaliplatin on it. I had a number of other side effects such as my finger nails getting quite soft. In fact they got so soft I told the doctor I couldn’t even pick my nose — now that is soft! The one constant side effect was that my platelets would get lower than the thresh-hold for the study, which was 75. Although the study people weren’t happy about that, I thought it was great because treatments were postponed until the platelets were over 75. The final trial treatment was 7 weeks apart (and the treatment protocol was supposed to be every couple weeks!). I was then taken off the trial for that reason, but also because the spots had become so small and fragmented they could not even be measured. I was off the study from early November until February when the spots started appearing again. I was not able to get back on the trial, so I received the treatment “off study” for two months, but unfortunately it was no longer effective.
I’ll briefly mention one other thing. At one point (before I had an infusa port), apparently the injection needle went through the vein and infused a half hour (quarter bag) of oxaliplatin into my arm instead of in the vein. If anyone is interested in that, unfortunate mistake, I can tell more about it.
Everyone reacts differently to chemos, but these are some of the experiences I had with over a year and a half of treatment with Oxaliplatin/Xelodia. I was pleased with the results for most of the time, and was able to recover from the most unpleasant side effects after about a week following each treatment. The chemo eventually didn’t work– but that was not surprising, and we’ll just have to find a new one which will work.
Good luck for those of you on this combination. Keep positive and keep busy so you don’t dwell on the treatments.
Jerry Daniels
Platteville, WIJanuary 27, 2007 at 11:06 pm #14954lynneSpectatorI will join the chorus of those newly on oxaliplatin and Xeloda; I started yesterday, and I know it’s too soon to tell anything, but I’m feeling good, just tired. Good to hear that sometimes it’s the third day that things hit.
I was diagnosed last May and had 8 months of being mostly without signs of disease, and getting clean scans. Then, this week the CT scan indicated a tumor where my gallbladder was before they removed it. It’s messing with a few organs, so I was eager to start chemo, and hopeful the tumor will respond.
January 27, 2007 at 5:25 pm #14953kate-gMemberLove to you Jeff. I have no experience, but wish you luck with the treatment, I hope you get some success and suffer little!
January 26, 2007 at 8:35 pm #14952jeffgMemberHi Caroline, I started the Oxaliplatin and Xeloda regimen on Monday. Xeloda don’t seem to be to bad but the Oxaliplatin was instant pins and needles to hands, feet, and mouth(lips). Day 5 and I still can’t touch nothing cold and I have to microwave my water warm enough to drink. It’s funny I go to stick my hands in the fridge and the cold air starts the needles and pins. I use some wooly mittens now Ha! The Oncologist told me only a couple days but when I read the literature it said 5 days before it eases up. I can definitely tell it agressively attacked some cc cells. With a little bit of loritabs I tolerated it okay. Your right about the Xeloda does cause some joints to ache. You mentioned something about steroid meds? I know they gave me something extra this time, I’ll have to ask next week when I go get blood checked on Monday. I did want to mention for anyone trying oxaliplatin to request extra fluid after and to do 3 hour infusion versus 2 hours as it starts off with a bang.
Jeff G.
January 5, 2007 at 6:21 am #14951caroline-stouferSpectatorPeter-
I am doing Gemzar, Avastin, and Xeoloda. I started with Gemzar in May, added Xeolda in June, and Avastin in December. Gemzar is pretty easy to tolerate, but I think chemo side effects are cumulative – the longer you’re on it, the more you feel the side effects. I get steroidsd before my infusions of Gemzar and Avastin. I feel good the day of chemo and the day after and then I hit the wall and go into a chemo slump for a day or two and then start pulling out of it.
I only take half of the Xeloda as what I originally started out on. The Xeloda really seems to have been working well. My scans and bloodwork improved when I started on it. At the higher dose, I was getting swollen joints and bad hand-foot syndrome. So we cut the dose back to half . I take it for about four or five days, then my feet and/or hands swell up, and I go off of it for two to four days.
We started the Avastin after we found that the cancer had gone into my hip bone. I have a scan next week, so that will tell us more. My liver enzymes have been pretty good.
I haven’t had Oxaliplatin, but I know there’s a clinical trial at MD Anderson for Xeloda and Oxaliplatin called “Xelox”. The Martin family blog on this site tells more about her experience in this trial which has been good so far.
Best of luck to you and keep us posted!
-Caroline Stoufer
December 23, 2006 at 4:15 pm #14950mels803SpectatorMy little bro’ just went through Gemzar, Oxaliplatin, and Avastin. The side effects are not bad – the only problem that he’s having is with the neuropathy (tingling in the extremities) associated with the platin drugs. Additionally, he’s been on this for 7 months and is now starting to get some nausea after treatment. It lasts for about a day or two and then he is fine for the remaining 12-ish days until his next treatment. I don’t know much about the Xeloda, though. Good luck to you!!!
December 19, 2006 at 4:08 am #14949glightfootMemberI went through one cycle with this combination. The symptoms weren’t too bad. Unfortunately I had a potentially bad reaction to Avastin so I didn’t continue with it.
G
December 18, 2006 at 7:24 pm #305peterMemberThis is the cocktail recommended to me by my oncologists. I have not seen this combination used before and am interested to know if anyone has any experience with it.
I would not start until Jan 07 but if I do proceed I’ll let you all know how it works for me once I have some experience.
-Peter -
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