CancerCompass message board discussion started by llmac on 4/23/2008 http://www.cancercompass.com/message-board/message/all,23345,0.htm Mon, 01 Dec 2008 00:00:00 GMT Mon, 01 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Just starting Xeloda for liver mets.  Would love to hear from someone who has taken this drug and how it worked for them.  I am terrified with this recent diagnosis ...would appreciate some advise.  Thanks. llmac Wed, 23 Apr 2008 00:00:00 GMT Hi,I was diagnosed a year ago with mets to liver and bone.  My onc put me on Xeloda, Tykerb and Aromasin soon after.  My experience with Xeloda is that you will have diarrhea and tingling in your feet and hands.  I also did the 200mg of Vit. B6 to help with that. I also had the very annoying side effect of losing my taste buds and my mouth being so sore I could barely eat.  Eventually, between the Tykerb and Xeloda, my diarrhea got so bad that I was afraid of becoming malnourished.  I was allowed to cut back to half a dose of Xeloda (one pill a day) and that got rid of the tingling and cut down on the diarrhea and also my mouth is fine now.  Oh, and my scans have all been great.  My tumor in my liver started at a 6cm and is now smaller than a dime at 1.9cm.  So i don't know if its the Tykerb, Xeloda, Aromasin or God, but I am feeling great, doing great and looking great.  I also went thru a time of extreme depression and was constantly trying to find out how long I have left.  I don't do that anymore and am much, much happier with a better outlook.  You have to have faith that you will do well. My onc said if my last scan was good he would start weaning me off my drugs. Yah! I have stopped taking the Xeloda and now just take the Tykerba and Aromasin.  Eventually I will be off those too.  I am doing great from a year ago.  Have hopeLisa Lisap Thu, 24 Apr 2008 00:00:00 GMT  On 4/23/2008 llmac wrote:Just starting Xeloda for liver mets.  Would love to hear from someone who has taken this drug and how it worked for them.  I am terrified with this recent diagnosis ...would appreciate some advise.  Thanks. My daughter too, is starting Xeloda.  She has stage IV breast cancer with mets to liver and bones.  She has had 2 rounds of chemo and all is stable except her liver.  She went from 17 spots to around 120.  I will keep you posted on her progress.  Her doctor feels this medicine will do the trick.  However, we are in deep prayer about this.  Everything I have read (Istarted searching out the day we got the news), everyone is having good results, some 4 years and still going.  Hope this helps. Ally5479 Sat, 26 Apr 2008 00:00:00 GMT Thanks so much.....looking forward to hearing from you.  llmac Sat, 26 Apr 2008 00:00:00 GMT Hi I was diagnosed with liver amd bone mets may 07 I startes xeloda and also took IM Laetrile which i believe made chemo more effective. I am disease free at present!! yvette2006 Thu, 01 May 2008 00:00:00 GMT Are you still on Xeloda.  How were your side effects?  Things are so far so good....just hope I get good results. llmac Thu, 01 May 2008 00:00:00 GMT Hi! I know you weren't addressing me, but I'm taking Xeloda right now and nothing else. I have mets in my liver, probably bile duct cancer, and have tried several other chemo "cocktails" with no real effect - no growth, no shrinkage. Then in Feb one mass showed some growth.I've finished the second set of Xeloda Saturday (2 weeks on, one week off) and have a CT scan tomorrow and an appt with Oncology on Monday.So far the side effects haven't been bad for me. I've NOT gotten the "hand/foot syndrome that people worry about. I've had bad diarrhea, and some acid reflux and tummy upsets, but nothing too bad. Fatigue for sure and I feel "puffier" but no temperature or other signs of problems. I'm having a CT scan tomorrow to see what effect the 2 series have had (crossing fingers).  I'll know more next week. Good luck with your program! If I can help in any way, just let me know!Patti    pattib Thu, 01 May 2008 00:00:00 GMT Thanks for the response.  Sounds like you are doing pretty well on this.  Hope it works for me.  Over a week now and no side effects...hopefully it will stay that way.  Keep me posted on how you're doing!  Thanks. llmac Thu, 01 May 2008 00:00:00 GMT Hi again,I'm in Chicago right now, visiting my daughter. Her laptop is weird to me so I'll keep this short! I finished my 3rd 2weeks of Xeloda on Saturday. Had Diarrhea during 2nd week, but it didn't persist. YEA! No other reactions other than some shortness of breath, lack of stamina. I've been traveling and visiting family, so that has an effect too, I guess. In any case, I've been tolerating it well. They think there is some fluid around my liver (stomach?) but not enough to do anything about. I think it affects my breathing, and I've gained some weight, but all my nurse said was to watch my salt intake. We'll see. Next week when I get back I'll be seeing the new Oncologist - the GI specialist, s o it will be interesting to find out what he says. I'm looking forward to that meeting, I think it's on the 7th of June or so.How are you? How's it going?Patti pattib Mon, 19 May 2008 00:00:00 GMT I've been reading the message boards since January 29th when my husband was diagnosed with Ampullary Cancer with mets to the liver - I've never left a message before but just wanted to tell you about John's progress.....We were told by one oncologist in February that he would be gone within the year and he should just start Gemzar and see how much time he can buy.  To say this was devastating news is an understatment! Luckily, we did some research and saw Dr. Andrew Ko at UCSF (a wonderful Doctor!) who gave us hope and started my husband in a trial of Gemzar every other week, and 4,000mil of Xeloda for seven days, then seven days off...John has just finished his 5th cycle and has had terriffic results!  When he started treatment in March his CA19 was 2,108, with inumerable tumors in his liver in addition to his primary tumor at the ampula vatar (this tumor was blocking his common bile duct and he had to have a stent placed on January 29th) - On April 14th he had the stent replaced and his Dr. found that the primary tumor had shrunk by about 50% and a stent may not be needed in the future - additionally, his CA -19 level was down to 139!  We just had his first CT scan last week since starting the study (and another CA-19 reading) - his tumors have shrunk in the liver anywhere from 50% - 80% and his CA-19 is now 38!!  And most importantly, John feels better than he has in a years!  He was very sick the first week with the Xeloda until he started to take Zofran twice a day - Now has very little adverse effects (no hand and foot sensations, sores, etc..) just some tiredness during the seven days and some shortness of breath if he is rushing around - He is able to travel and continue working (he lectures all over the world) and feels he has his life back!  He is really feeling terriffic!!  Just wanted you all to know...... Waldo1 Wed, 21 May 2008 00:00:00 GMT That's fantastic news-  congratulations! It's so good to hear of people having good results from chemo. I don't seem to have any shrinkage, but at least little growth. Please keep in touch and tell us how your husband is doingAll the best,Patti pattib Wed, 21 May 2008 00:00:00 GMT Have any of you had xeloda prescribed for cancer of unknown primary?  This is the drug that the onc's want to start my dad on,  based on the fact that they think he "might" have colorectal cancer as the primary cancer.  However, the doc who did his colonoscopy last November said there's no way that his primary cancer is the colon since the polyps they removed were benign and he's since had a "clean" colonoscopy.  I am beyond confused. howtocope Tue, 17 Jun 2008 00:00:00 GMT