CancerCompass message board discussion started by Nanar on 5/23/2007 http://www.cancercompass.com/message-board/message/all,12333,0.htm Sat, 11 Oct 2008 00:00:00 GMT Sat, 11 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My Mom who is 83 was recently diagnosed with metastatic liver cancer.  She has a 13 cm mass encompassing her right lobe.  SHe had no symptoms so to speak and it was found due to other issues she was having.  Her CEA level was 13,350.  She had colon cancer 8 years ago with some lymph node involvement but chose no treatment at that time and fortunatley has had 8 fairly good years.  The oncologist has put her on Xeloda, started at 1000mg in am and pm and now increased it to 1500mg BID.  SHe would like to know if anyone has taken this drug and what kind of results they have had with it.  Obvioulsy we are not looking at curing but the doctor is hoping to slow the progression.  She did have a clear bone scan.  She does 2 weeks on and 1 week off and this will be the secon round.  WE will get the newest cea lverl results the end of this week hopefully and are told that'll tell us something.  Like I said my mom wanted me to see if I could get any information or feedback from anyone dealing with similar issues.  SHe is a stong lady and a fighter but feels if she does begin to have side effects she will stop the treatment.  her pain is minimal but she does use the pain patch but only 25mcg which seems to be working fine at this time.  I'll look forward to hearing from anyone that may have some info . Thanks Nanar Wed, 23 May 2007 00:00:00 GMT I was on Xeloda and it did seem to retard the growth of my cholangiocarcinoma.  Unfortunately I developed periferal neuropathy when my dose was increased to 4000/mg/day, so my oncologist dropped me back to 2000 and then up to 3000, where the symptoms began again.  Another drop to 2000 was okay for a while, but soon the PN showed up again.  When I was at 4000/day, the pain was quite intense.  It never got that bad again at the lower doses, but it was still painful.  My doctor put me on Lyrica, which I believed helped.  Neurontin and Elevil are also used to treat PN.  Now I'm on taxotere and camptosar, which of their own side effects, but not nearly so painful. Irving Thu, 24 May 2007 00:00:00 GMT thanks for the response, I appreciate it.  Hope you are doing okay.  ALl this is very overwhelming to say the least. Nanar Thu, 24 May 2007 00:00:00 GMT Hi, I'm sorry to hear about your mom.  I got breast cancer at 36, and then it returned again and spread to my liver.  I didn't want to do chemo, however when my largest lesion got to 5.6cm x 4.6, along with about 9 other lesions I thought I would try Xeloda as it didn't seem as harsh as getting injected all the time.  I have been on it since Jan 07, and have had good results, my largest lesion has now shrunk to 2.2cm, which is good news, I still have about 8 small ones but I'm hoping those will be gone on my next ct scan I go for on June 5th.  Regarding side effects, I was good for the 1st 4 cycles and then I did get diarrhea for 11 days straight, but now I'm thinking that could have been a bug I picked up because I had a friend who got the same thing.  I have recently started vomiting, but it has only been 3 times since being on the medication, and it seems to be when I had to big a meal.  Other then that I feel great, and no symptoms.  I wish your mom luck and the best thing is attitude, I have never looked at cancer as a bad thing that happened to me.  If you haven't watched the movie "The Secret" I would recomend you and your mom watch it.  If you have any other questions you can email me and I'll see if I can answer them.Take care, Karen :)  Karen67 Fri, 25 May 2007 00:00:00 GMT hi, i would like to reply to your mom taken xeloda.i started 4 years ago with a colon operation with no chemo needed. after 1 1/2 of negative blood test and not knowing that those blood test are only 75% secure the cancer had met.to the lung with a size of about 11 cm. i went for radiation and it shrank to about 5-6 cm.after 6 month and takingt alternative medicine the tumor increased a bit in my right lung and also a tiny one showed up in my left lung. not having a growth anywhere else so fare a took the advise of chemo which i try to avoid all this time. i was put on xeloda but on my request only started with 50% dose which was 800 mg twice a day. than put on 60% 1000 mg a day. after no side effect on 80%. also 2 weeks on - 1 week off. this was not to good. for 10 days i did not leave the toilet. my oncologist said it was to toxic for me. but first after 4 rounds of xeloda my tumor shrank about 2 cm. i was down to 4.5 cm. so being put b ack on 60%- with other words it works on low dose-. i was told to go 4 more rounds on 1000g twice a day. have done 2 and going on the third today. i watch my hand and feet for the redness but only minimal. i can not say anything bad abut the drug or side effects. i is working and i am hoping again after the 4th round when i have to do the scan again. i hope you stay on low dose. we are not all mad the same. we are still behind in research that they can not tailor individuals with their dose.good luck write me if any questions. i think your mom did well all these years.!!!!!.greetings f. Freyabc Fri, 25 May 2007 00:00:00 GMT I just completed 10 courses of Xyloda and quit at the doctor's suggestion in that he felt it was not being effective for my adendocarcinoma, cancer that has migrated from my parotid (salivary gland) to my liver and bones. After about 5 sessions on Xyloda the liver lesions had reduced 50% and he said "It is working!" but three months later they were growing again and multiplying and he said "Quit.". My tolerance of Xeloda was quite good. My hands did get reddened a bit and dried out. That seems to be repairing well. (Just yestrerday my daughter said as we drove in the car, "Your hands are looking much better, Dad."). I tried to keep my feet and hands slathered with Udderly Smooth and I think that was helpful.I have decided to forego the oncologist's suggestion to move to a stronger chemo, Taxol, for at least three months. I am 64 and have negilgible symptoms: pain, fatigue, or loss of weight. So, in speaking of its effect, I am not entirely sure what to say: it appeared to work; it appears not to work -- but my cancer is not particularly responsive to any chemo protocols I seem to be hearing from a variety of experts. Sounds like much of what we hear about cancer's elusive and mysterious character, huh? Carleton581 Fri, 25 May 2007 00:00:00 GMT thanks for sharing, I'm glad I found this site. Its always good to hear from those who are dealing with similar issues.  God bless you. Nanar Fri, 25 May 2007 00:00:00 GMT I recently took Xeloda (3000mg/day) for six weeks for rectal cancer. I took the drug along with radiation, preparing for surgery. I did not really have any side effects from the Xeloda directly, though it did increase the side effects of the radiaition (toxicity for on e week in rectal area). All in all, I was surprised at how well I tolerated the Xelota-no hand/foot syndrome, no real nausea-just some loss of appetite and weight loss. Best of luck to your Mom, she sounds like a fighter... Kathi211 Mon, 28 May 2007 00:00:00 GMT My husband was diagnosed with bile duct cancer in August, 2006.  He first went to the Cancer Treatment Centers of America in December, 2006.  His bilirubin count at that point was 12+ so he could not begin treatment.  Once they got his bilirubin under control, he began treatment with Gemcidabine and Xeloda.  He has had four rounds of Xeloda and so far has had minimal side effects.  He is currently taking 5000 mg a day.  He has some soreness in the hands and feet and slight nausea but overall he is doing well.  He had his scans repeated in May, 2007 and there is still a little cancer in the lymph nodes but no signs of a tumor.  Debbie5763 Wed, 30 May 2007 00:00:00 GMT My Dad is 81 and was diagnosed with stage 3 colon cancer in April 2006.  He had surgery, has a permanent stoma but was advised against chemo.  While the colon is clear, lesions have appeared in his liver late last year and this Jan 2007 he had the y90 treatment in Jan 2007 which led to some shrinkage.  However,  the lesions are growing again and the oncologist has recommended trying Xeloda.  Unfortunately my Dad is not mobile and requires assistance and wheelchair to get around.  He also has dementia but generally still has  good quality of life with good appetite and enjoys playing with his grandchilden.  We are wary of the side effects of Xeloda and still deliberating. Would very much appreciate sharing of experiences to help us make the decision. singapura Fri, 20 Jul 2007 00:00:00 GMT My Mom, who is 83, has been taking Xeloda for about 3 months now and has had no major side effects.  She was very leary of doing any treatment but said she would give it a try.  She to had colon cancer 9 years ago and took no chemo at that time and now has been diagnosed with stage 4 liver cancer.  Her CEA level was quite high but have droppped from 13,000 to 660 in the time shes taking Xeloda.  The MD was clear on saying taking the drug would not cure but could slow progression and maybe shrink mass some.  The only real side effect she has had is the hand-foot syndrome, but just her feet and really only one foot and manily at night her foot really burns and is quite red.  She usues the udderly cream during day and bag balm at night, which helps a little.  She had been on 1500mg in am and pm but has been decreased to 1000mg am & pm. due to this issue.  Thats about it for side effects except for being very tired but not sure if thats meds, or just her body is tired.  She is on a pain patch of 25mcg every 3 days and some other meds which could play in the tiredness.  WE'll have abetter idea next month once she has another ct scan of abdomen and brain to see if cancer is anywhere else or what the mass size is( it was 13cm and encompassing the entire right lobe of liver).  I can empathize with what y'all are dealing with its not easy thats for sure. But Mom is capabale of still making her own decisions which is good.  She lives with my husband and I and does need someone around all the time...cause can get unstaedy and sometimes a bit forgetful but for the most part for now she is doing fairly well.  we take each day as a gift and enjoy that time.  Hope this helps a bit.  I know once I found this site and emailed, the responses I rec'd were encouraging and helpful.  WE're all in the same "boat".  God bless you all. Nanar Sat, 21 Jul 2007 00:00:00 GMT