back in the hospital again

[Patty H]

I was on xeloda again. I tried to be real careful this time but the diarhhea got me again. I was in the hopsital 11 days last year with it so I was aware of how fast it could get you. The Dr. said no more xeloda for me and when we get this straighten up we will go to
abraxane. I ask him what the pay off was for it because he has been keeping me om the easier side affect chemos just for contament saying there is no cure for stage 4 so he works on containment and quality of life. But we have used up navlebine, gemzar and now xeloda. He said on the harsher ones it would knock it down farther and
then I could probably take 4 to 6 months off chemo. This isn't something he has talked about before. I ask him if we could to the abraxane like we did the taxotere and carbo. three weeks on and one off. I didn't loose my hair that way and the side effects were milder. He said there hadn't been a study on using it that way but we might consider it. So what I'm wondeing is how is any one using abraxane doing and how do they take theirs? Patty h

[*_Cathy_*]

Hi Patty! I'm not on abraxane but I am on xeloda. Sorry for your problems with it. I am also stage 4. Could you tell me how the problem started with the diarreah- was it every day or all day long? How did you know you needed to go to the hospital? Do you think you were on too high a dose? Is your doctor right about there not being a cure? Does anyone know of people that have been cured at stage 4? I hope the doctor isn't being too pessimistic. There are probably lots of other things to try and remember that Prayer is Powerful! God Bless You! I will be praying for you- Cathy

[Patty H]

Yes I'm sure the dose on the xeloda was to high. We had stopped it a little early when I got some bad hand and foot syndrom. And we were going to lower it after I got staighten out. But then the diarrahea hit. I'm talking 10 or more times in a day. So the Dr. had me come in for fluids and told me I would probably need to take fluids every other day for awhile to keep out of the hospital. I was taking 8 iumodiums a day. So on Monday I took fluids but I seemed better on Tue. only one stool so I decided I didn't need to go on Wed. and I had an appointment anyway on Thur. but by Wed. evening I had started vomiting. So when I went Thur. I told him I had screwed up. They gave me more fluids and anti nausea meds. It's a 50 mile drive to our house and after 6 hours of fluids we went home and pulled in the drive and I started vomiting. xeloda can really go fast into severe dehydration. We called and he told me to come back and check in the hospital, so another 50 miles. I have some neurothymy in my hands so he doesn't want to put me back on xeloda. My Dr. isn't the one on call this weekend but his partner explained a lot to me today and made me fill more comfortable about going on abraxence. He also told me they have a shot that last a month that they can give me in the office for diarrhrea if I was going to stay on xeloda. Even with the meds they are giving me in the hospital I had 13 stools after supper till 8. My shot wasn't do till 10 so they gave me iumodium. If you get diarrhea from xeloda you will know!
I have been told there is no cure for stage 4 but there is ned that some Drs. go for and there is containment where it is treated like a cronic illness like diabetes. In the meantime I hold out for a cure. How are you doing on your xeloda? What kind of dose do you take? I was on 3000 a day, 1500 inthe morning and 1500 in the evening. Best of luck I know I couldn't have made it this far without my faith in God. I was just a little scared of the abraxense when I wrote last night. Oh Oh potty time. Patty H

[Hope]

Hi Patty! Sorry to hear that you are having problems withXeloda again. I also had problems with diarrhea while on Xeloda. I also was hospitalialized for 5 days in January. But, by that time Immodium had stopped diarrhea so they never found out what caused the high fevers I was getting. Because of the problems I am having on the brain met, my onc. wanted to put me back on Xeloda, but I refused. I am afrain of that chemo. I opted for radiatioion on my big lung tumor. After radiation, my scans still showed the big lung tumor decreasing very little in size, but onc. says that may be scar tissure. I don't know. However, since they only readiated the big lung tumor, during the time,I took radiation, I wasn't on any other chemo, not even Herceptin. That caused my other small lung tumors to start growing again. Since, I also have exhasuted all chemos out there, I was so glad in March when they approved Abxabe, I am on my thired round. I take it every weeek and get one week off.I am also on Herceptin. My latest scans in May showed decreasee on all of my lung mets. Some of the little ones have even resolved themselves and no longer can be seen. That is encouraging news to me. If only my brain met was doing better. I still have a lot of edema and am still on decradron which is lowing my potassium and raising my cholestrol. All side effects of decadron ,plus causing me muscle weakness in legs and a lot of vision problesms. That is why I don't get on computor much anymore, because it is very difficult for me to read, even with my glasses. My comprehension is being affected. It is like being dyslezic. I hope you can make sense of this e-maill. It has taken me a long time to write i. It took me about 15 minutes to read yours. That's how bad it is. But I am taking one day at a time. And even thought the doctors say there is no cure for Stage 4. I have been battling Stage 4 for almost 3 years how. I know God is hearing our prayers. I forgot to mention the side effects I get on Abraxane. Well, I lost my hair again and I do get gastrointestinal problems. I get very gassy and stomach cramps maybe for up to 2days of Abraxane. I am also noticing getting a little more fatigued lately. But of course, these symptoms may be releated to brain met and decradron. Onc. also put me on Priloxec because decradron is hard on your stomach. Wll, let me know if I can of further help to you. I feel you and I have been thought similiar situations. I will continue to pray for you. God bless you. Hope

[al from canada]

Dear Ladies,
I'm sorry to hear that you are having all the problems with Xeloda. My Linda is on her 5th cycle of xeloda (1500 mg 2x/day) and she has none of the traditional side effects except for some of the hand / foot stuff. She is also on narcotic pain killers which cause consipation, and presumably conter-acts potential diarrhea. Also, make sure you are taking ample Vitamin B-6 to conteract any neurological side effects such as numbness, etc. The dose you are taking, according to others that have posted, can be reduced to 50% of the recommended doseage. The iniatial manufacturer's doseage is high and reduction doesn't reduce the drugs effacy. Xeloda has an excellent track record with manageable side effects and I would push your doctor to get creative to help you deal with them. The one side effect that Linda has is depressed blood counts. This is probably due to damage done due to marrow mets but we are starting her on neupogen this round to stabalize her counts. This is unusual for Xeloda but like I said, sometimes you have to get creative: my feeling is that in 2005, there should be no Quality of life issues that can't be resolved somehow.
Take care,
Al

[Patty H]

The weekend covering Dr. was in this morning. We talked a bit and he did make me feel more comfortable about going on abraxene. He also said that since this is the second time I have tried xeloda and both times it put me in the hospital that I may have what he called DPD defiicency. That's what he wrote on the board here. He is a writer like my oncologist. Last year when I tried it, I was stable but no reduction but stablr can be good,,
Hope I was so glad to hear from you. We have both been fighting these lung mets for awhile and I was wondering how the abraxene was working for you. Patty H

[*_Cathy_*]

Dear Patty ,Al and Hope- This is my 12th day on xeloda- 4000mg/daily. Last night my nose started to bleed. On Thursday, they said my counts were good but now this. Are there certain days when you stay in the house and avoid people because of infection risk?I was so tired last night and have been having diarreah but not continuous.Al- how do you know that you can decrease the amount and it still be effective? i would like to do that. Hope- Are they going to do surgery on your big lung tumor. My friend's mother just had a big tumor removed from her lung (they took out a third of her lung) at the University of Pennsylvania Hospital. She is breathing much easier now and they said they got the whole thing. God Bless You All- Cathy

[Patty H]

Cathy, I also had some minor nose bleeds on xeloda. But if you are getting the diarrhea you need to let your Dr. know, even if it isn't real bad yet. If you get it caught in time, your Dr. will decrease your dose. He told me it wouldn't hurt the effiency of the xeolda. The diarrhea can blow up from a little nothing real fast. Is this the first time you have tried xeloda? I usally tried to stay away from crowds that last few days before my break because I knew that's when my counts were at the lowest. Patty H