All about Xeloda
Comments
-
Thanks, Kessala. You and I might be the exceptions on low dosage. Everyone else seems up more around 3000 mg or more.
Wow, gciriani! You have redefined what a helpful husband can do, like compounding your wife's meds. Great information. Thanks!
0 -
hi everyone. I am just finishing my 6thcycle of xeloda and the time have been having some problems with nausea. Has anybody else who has been doing this a while had this ? Also this is the first time the feet haven't reciverd in the week off. Seeing the oncogist this pm so very nervous Barbar
0 -
BarbDenise64, I occasionally feel a little wave of tummy yuck, but I only had full-blown nausea in the first few cycles. I sometimes pop a Zofran, other times I'll just have some hot tea or a sip of ginger ale. It usually passes for me. Hope you can ease off for a week or two and let your feet heal! I had to take a break for my feet once, during my first year with Madame X, and they did recover. Hope for you!
0 -
hi. Saw oncologist today and have been given a break to be followed by scan in January . This was because of side effects but am worried as am not NED. It's not worse and tumour markers stable. Not sure if it's break or new drug barbar
0 -
My wife who had been on Xeloda for 20 months had to take a vacation from it, and now one month after that they found two brain metastases; the oncologist didn't prescribe a replacement treatment during the vacation, and I feel this may have contributed to this additional problem. She will start radiation to the brain in two days. The radiation oncologist explained that because there are no drugs that can cross the blood-brain barrier, Xeloda would not help, and only radiation works. before signing off and moving to a brain-mets thread, I was curious if there is anybody in this Xeloda thread who is dealing with brain mets (I know SusaninSF is).
0 -
hi gciriani,
I'm a brain Metster for 1 year now. Started xeloda at the end of August. My 6 week brain mris don't show improvement, but they are reporting it as stable disease. Not sure how much faith I havein it, but maybe it's slowing things down until something phenomenal is avail for brain mets. I'm taking xeloda with another drug, as they believe combining a drug with xeloda can help. But who know what crosses BBB, and how much crosses it. It's always a good idea to be a step ahead so I'm looking into other drugs
I'm so sorry to hear about your wife's brain mets. Join us on the brain mets site where more people may be able to offer more advice. Warm regards.
0 -
I too am a brain met and liver met person. I wish you and your wife the best. The brain met thread is wonderful and has all sorts of great information and support.
I had to take a Xeloda vacation for my brain surgery I had in February this year. They found a solitary liver met in June. I was wondering if my Xeloda vacation had anything to do with the timing of my new liver met. I had been NED for 2 years. They said it was impossible to tell. I am beginning to wonder now. I am back on Xeloda and switched my other targeted therapy. I am NED as of last scans.
Best wishes.
0 -
Gio, I am very sorry to hear of your wife's mets and wish you/her all the best. I am not on that boat, only bone mets for me. I do have a friend here that has brain mets, she did the radiation, but she also does cannabis oil. She is currently at NED. Not sure if the oil had anything to do with it or not, you never know what causes what. I'm considering that myself.
My onc has given me the ok to try 1 week on, 1 week off, but wants me to up my dose a pill. So that will put me on 6 pills a day. I had labs and scans Thur/Fri, should have results by Wednesday. I'll just be starting my 1 week on Monday, so if the scans or labs show anything worse, I can do 2 weeks, and throw the 1/1 out the door.
0 -
hello gciriani - I am sorry to hear of your wife's brain mets. I too have had to go off Xeloda because of complications, and so I too will be leaving the Xeloda board.
Stage_IV_in_Montrea
0 -
gciriani, Sorry to hear of your wife's progression, and best of luck with her next treatment.
Goldie, I am on 6 pills a day (one week on and one week off) - it has not been bad so far (fingers crossed, am just starting my 3rd cycle so still early). I will have to go off it for a short time for more radiation to my spine, will find out more about that next week.
0 -
Thanks for all the positive feedback.
0 -
Goldie, I spoke too soon - I just threw up a delicious turkey dinner my sister made for me. I thought I had adjusted to the 6 pills per day, but I think it only works if you eat very small meals and try to keep something in your stomach all the time. I didn't have a huge plate, but I guess I can't tolerate a normal sized meal while on these pills. I have a disgusting burpy feeling a lot of the time. I will go back to a small plate tomorrow and see if I can tolerate the 6 pills again (3 in the morning, 3 at night). Good luck on your new schedule, hope it works for you.
0 -
gciriani- I'm so sorry to hear of your wife's progression. I hope her spirits are not too low. This disease is really a tough one to take, sometimes.
My onc decided to reduce my dose again to 1000mgs in the morning and 1000 in the evening, two weeks on and one week off. I asked about the 7/7 protocol, but he thought this would be better for me. We'll see. I worry about the lowered dose and hope it's doing the job. It is a bit easier to handle, so maybe it will mean I can stay on it longer. Hands and feet hurt some days, and are always tender. But that's really the only side effect that is bothersome, so I could do this for as long as it works.
0 -
Holly, sorry you ended up sick. I hope the smaller portions help. I start my 6 pills today for a week. Hoping Madam X will cooperate!
Sandi, you hit the nail on the head with your comment about this disease being tough to take sometimes. I know sometimes I wonder, how long I actually have. Especially since I feel so good, other than the SE's of X. I hope the 4 pills a day works for you. I would think that should be pretty tolerable. Good luck!
0 -
Hi everyone, hope you were able to enjoy the holiday with your families. This is only my 3rd cycle of Xeloda, they didn't expect HFS to start for a few months, but I already have a huge blister in the middle of my left hand (never got the peeling - just got a red spot and then the big red blister which is very painful. Also a smaller one on the thumb (no redness, just the blister on the thub). The problem is so far only on the left hand thank God. I have one more day of the cycle, and am wonder if I should skip today's 2 doses or should I take them since I have time off Xeloda after today( 1 week off plus another for radiation and maybe a cement injection to spine). I e-mailed the doc but may not hear back given it's the weekend. I'm worried about whether the blisters will heal since I had about 13 lymph nodes taken out on the left side in 2008 and am not supposed to get needles or anything on the left. Does anyone have an opinion on whether I should take today's dose, or will it matter? Also, is there anything to get rid of this huge blister?
0 -
3Holly, I would stay the course. Xeloda is metabolized in the body and its byproduct 5-FU, which is toxic to cancer, but also to other tissue, builds up in time, and takes weeks to leave the body. So interrupting now will not improve the situation. You may ask your oncologist next week to take a vacation from it. Because of the pharmacokinetics (speed at which the drug builds up and the is eliminated) of it, prevention is very important. When anybody starts taking Xeloda, use your hands and feet much more delicately, because even you don't feel it, there are cells that make up your tissue that have their life shortened by Xeloda, and any friction rubbing or pressure shortens their lifespan even more. You may try uridine cream, which is what Susan is doing; it is the only chemical available for which studies show it protects cells from Xeloda, and slows down their death. It is supposed to bring down one notch HFS symptoms.
0 -
gciriani, Thanks very much for the advice. I might have put too much pressure on my hand when cutting down a few things in my garden. The onc called and said the blisters should get better on the week off, and I will have more than a week off since I'm having radiation and a cement injection to the spine after that, so they will stop the Xeloda till after all that is done. He said not to break the big blister since it could get infected, and it may get worse for a few days but then will hopefully start to heal on the days off. It's right in the middle of the hand so every time I do anything it gets squeezed and feels like it will pop. He said it would be better to get the last day of Xeloda done if I could stand it, so I took today's dose. Don't know how your wife was able to tolerate it for so long, just this one big blister is very painful. Wishing her the best, and thank you again for all your good advice.
The cream I have is 10% urea - is urea the same as uridine?
0 -
I'm about at the end of cycle 3 of Xeloda. So far, no intestinal upset, no nausea, no HFS. I did have a couple of tiny nicks show up on my fingers, but they went away so don't know if that's just normal wear and tear or HFS. I'm on 2000 mg a day (4 pills a day).
When does HFS typically start?
0 -
Winning- If you are on 2000, you may not have much HFC. I am now on the 2000 dose, and my HFS has almost disappeared from when I was on 3000. For me, it started on the first cycle of 3000. Even at 2500, I had bad foot problems. Today, I feel almost normal, and I am half way through my 1st cycle of 2000.
Now, let's just hope that this reduced dose is effective.
0 -
Dear sandilee,
I'm glad to hear your HFS is diminishing. I hope the drug is working for both of us at this lower dosage. I still have another month to wait for a scan.
0 -
I've been on Madam X since Feb. 2015. HFS did not start right away. But not sure when it did start. It got really bad on my hands about 7-8 months in, had to take a 2 week break. They were so red and dry, I could not open or close them completely. I'm currently on my first round of trying 1 week on/1 week off, but I had to increase my dosage to 6 pills a day, from 5. CT scan last week was negative, nuclear bone show slight progression.
Holly, I hope the blister doesn't cause you problems and goes away soon. I do find things taking longer to heal, with our immune systems being compromised. My fatigue is horrible, I'm in bed for 12 hours most nights.
0 -
Ive got to say that the combination of Xeloda, PMS, and a very bad cold are all too much for me. I have spent most the last few days in bed, only getting up to get the kids to their activities. I am glad that today begins my week off of Xeloda, as I think that will help me regain some stamina.
Thanks for the vent. I know you guys would understand just how hard it is. I love my family, but they don't get it. How could they
0 -
left foot and goldie,
Sorry you are having a hard time, I know how you feel. I feel like this huge blood blister right in the palm of my hand will never heal, and now I'm getting more blisters - another seems to be coming out on the thumb, and I have red patches with smaller blisters all the way up my left arm (probably shingles - just started those pills in case it is). Getting radiation next week, and cement injection to spine, so will be off the xeloda a couple of weeks, but not thinking I want to restart it. Hope things improve for you both and that you get some energy soon.
0 -
Has anyone had trouble with a pain that runs down your leg (like sciatica) but seems to be relieved with ibuprofin? It started about the time I started X and doesn't seem to get better. Sometimes, I am just hobbling around, then I'll be fine. Is this something to do with X or am I just going into accelerated aging?
0 -
LFF, sorry you have PMS thrown into the mix. I never did have a problem with that. Feeling better on my week off doesn't really start to get better until about 3 days into it, and then the first few days back on X are pretty good.
Holly, how long have you been on it? You are the first that I have heard with these huge blisters. Must be painful. Cement injection? Never heard of that. Where are you getting radiation? Is it for pain? Do you arms itch? I think it was you that told me to take Benedryl. I'm still taking it, and have no rash anymore, what so ever.Do you think it might help you?
I can deal with fatigue and the HFS. I'm not in any pain, so for very grateful for that. Thank goodness I insisted on seeing my onc every 6 months after I hit my 5 year mark and continuing with labs.As there is no physical sign of my bone mets.
WSF, I have had sciatica before, hurts like a mo fo!!!! I get cramps at night in my legs and Charlie horses, nothing during the day and nothing that feels like sciatica, so I am of no help to you.
I got my labs back, and my TM's are the lowest they've been.
0 -
Goldie, that is great news on your tumor markers, congrats! Also, thank you for that benedryl advice, I will keep it in mind. The NP has not seen my rash but put me on some pills (big purple pills,3 times a day) for shingles in case it is shingles going up the arm (not the same as the big blood blisters on the hand which is definitely HFS). I will ask about the benedryl but not sure if I should be taking both meds at once.
The cement injection is to stabilize the back and fill in some of the little breaks in the spine - I now have a brace also, and I'm hoping the radiation will alleviate some of the spine pain. The large blood blister in the middle of my hand is really painful and slow to heal, wish I could pop it but can't risk infection.
0 -
Holly, I'm so sorry to read about the pain you're having. All the best and good luck with your back procedure. I hope it helps stabilize your spine and relieve some pain.
If you relieved the pressure on the blister, it probably would hurt less and might heal faster. I had one on my foot when I started the med. I took a needle (sterilized in alcohol) and drained it, covered it with neosporin and a bandage, and it felt so much better. It also healed in about a week. Good luck, sweetie!
0 -
Thanks, Sandilee, now I am more temped than ever to pop it, but the doc says no. Mom went in the hospital yesterday which makes things worse since I it kills me i can't be there, thank God for my sister and brother. I guess it's true that when it rains it pours, but things will get better I'm sure.
0 -
Holly, I just googled shingles and looked at images, maybe you could compare with that. But as a warning, some of the pics are pretty graphic!
0 -
3Holly, regarding that blister you're suffering with. "Doc says no" to draining the blister. "Doc" isn't living with the thing on HIS hand!
Screw that advice and pop that thing. As others have suggested, do it carefully and as cleanly as possible. Poke a needle in along one edge, push to drain the fluid and keep it covered with a Band-Aid. It will heal lots faster and your pain will be immediately less.
"Doc says no" my arse.
Kessala
0
