All about Xeloda
Comments
-
Amy you have all the right to feel exhausted, it's fight after fight. But it could be that you are at a quite high dosage, would it be worth it to discuss this with Onco? Lowering the dosage or changing the dates. Of course QOL is everything, but sometimes you hit a big truck, and you could get around that. Let us know, and we will support you. Dani is only on 2000mg a day.
Aurora let us know which treatment you will be on ok. Wishing you an easy transfer.
Robin and Patty you guys tried and tried, let us know what's your next step. Everyone always hopes it's gonna work for them, and it's wise to know what could be the next step.
Timothy glad to hear that you are somewhat ok. Question, re: the liver, would maybe a CT show better pictures? I always thought so, Onco orders Pet/Ct and it does not give details what's really going on with the liver. Also, even a sono would it not show more details of that particular area? That's what I keep thinkg. I would love to hear what other oncologists have to say about that. Interestingly, my daughter's BT also kept showing better numbers, even Onco was excited, but we just got back the Pet/CT and the liver burden has not changed at all, almost all bone mets are still there, some smaller FDG, but most are still there, Onco considers it a win, just bcs it did not get worse. We should be jumping, but….
Zoe my daughter's doc also had that talk with me when we started, I do like to know the truth and straightforward talk, but I did not think it was the right time. I did have to shut my mouth, because we were starting in a new place, a major Center, I believe they meant well, but with all your info electronically now it's more difficult to just go from doc to doc, you can't always just start anew. So it is complicated, but you do what you gotta do to stay informed, and tell them you are not ready to give up.
Lulubee you have been there for us, for me for a long while. I am gonna miss you, but I'll bump into you. It's great that you have a plan in place, I wish you a quick comeback to NEAD. You gave us so much hope. Thank you so much!!
Kimberly so good that your husband was able to be there for you. It's so much time and energy consuming. And yes, it does make a difference with brands. So let's hope you keep getting the one that works for you.
Stilts thx for the recommendation. How do you use it? My daughter has been having very hard HFS she uses now O'keeffes working hands hand cream, she likes It but her hand looks like it's being eaten up. Anyone ever heard of this cream?
0 -
Hi everyone! Not been on for a while. Things had been going well and my CT scans had been clear. Had my last scan on Fri 13th - really didn't want it on that day but what can you do! Anyway, being in the UK, I normally have to wait a month for the results but this time, they got them back super quick and I heard last Wednesday that everything is great eg my liver has never looked so good but ... I have some slight thickening in my lung tissue and there is some fluid. They said that it wasn't clear if it was the cancer coming back there or whether I had inflammation or an infection. They are going to discuss my case at a multidisciplinary meeting on Wednesday coming to see what action to take. I have done some googling and see that lung infections eg pneumonitis can occur when you are on chemo. I am tired and have a tightening in my chest area and my breathing is worse when I'm walking. I have had some chills and sweating but I am wondering whether just knowing the results of my scan has just caused me to look for signs of pneumonitis because strangely I am hoping for this rather than the cancer being back! I've been On Xeloda for a year and it has been very doable and would hate to move on to something else - was hoping for longer! I have had some dark days - so worried about the cancer being back. Has anyone else had lung infections while on Xeloda - how did you feel like? Did it show up as thickening on your scans
0 -
AmyQ, I was on 4,000 mg of Xeloda per day when first took it. By Day Ten of my first 14/7 cycle my feet were unusable. Pain and terrible burning. I couldn't put my own weight on them.
I was lowered to 3,000 mg of Xeloda per day and by Day Eleven of my second 14/7 cycle I was back having the same exact terrible pain.
I was lowered to 2,000 mg of Xeloda per day and was able to complete many 14/7 cycles although my skin on hands and feet was being destroyed.
I'm currently taking 2,000 mg of Xeloda per day but on a 7/7 cycle and finally I'm able to live with this level of hand/foot syndrome. My skin is far from perfect. I deal with bleeding cracks and shredded fingertips. I can see in bright light that my fingerprints are gone! I can't bend my fingers enough to make a fist. I use Super Glue to seal bleeding cracks in my heels to help relieve the pain when I walk.
It's not easy this Xeloda. It's not for sissies. But....
I have extensive bone mets and some liver mets and Xeloda has been keeping me going for over 3 1/2 years.
Kessala
0 -
Amy, don't throw in the towel yet. I was on the same dosage and schedule as you and I was just as miserable. Onc reduced my dose twice. Now I'm 7 on 7 off with 1500 MG twice a day. I also had the worst diarrhea, but now it's better.
I have liver, pancreas, kidney, adrenal, bladder, and peritoneal wall mets plus extensive spinal, rib, hip, pelvic, etc. mets....too numerous to list them all. Of course, no one can tell you what to do and when to throw in the towel, but try a reduced dose first.
Hugs to you, my dear.
0 -
Well ladies I think I will be joining the xeloda group. Think because the onc hasn't call but the specialty pharm called & said I had been approved for assistance & they were ready to send out my drug. So guess the clinical trial is out. Very worried about the skin issues but sure hope this one works. April
0 -
Good luck, April. I'll be about a week behind you I guess. I'm nervous too!
Do you know your dosage?
0 -
Kaption
Don't know anything yet. At least it's not an iv. April
0 -
April,
I know what I've learned on this site and what my NP told me last Friday. I am in a trial comparing dosage se and efficacy. I have to wait until February 3 because I just finished some rads last Thursday.
I know it's pills twice a day 30 minutes after a meal.
Hope we have great success with it!
Is this your first ever treatment?
0 -
Kaption,
Just a short note. Xeloda is to be taken either with a meal or within 30 minutes of eating the meal. In an effort not to forget to take my Xeloda I take it as soon as I finish my meal and put my dirty dishes in the sink. Don't do what my mom did and eat, set a timer for 30 minutes and then take Xeloda.
Best of luck to you with Xeloda. It's been helping me and aggravating me for a good length of time.
Kessala
0 -
Kessala,
You are right! Thanks for the clarification.
0 -
Kaption
Not first treatment. Just like trying them all.
1995 Tamoxien 3 yrs. 2005 10yrs recurrence (wasn't that the "cure" period? Arimeidex 8 yrs, 2013 stage 4, Oh that was fun. Flaslodex 1 yr, Ainitor & Aromasin 8 mo, Halaven, Tamoxifen again, not a good idea, CMF 5 mo, Doxil, Gemzar & carbo 6 mo. taxol 2 cycles. Last scans some liver med better some worst. have wanted another test to see if different cancer. Sure hope this one works.0 -
Wow, April! You have been through it! I noticed the long period of time between diagnoses. I had 7 years between the first and second bc. And both were stage 0. You never know!!
Well, here we are at Xeloda! Good luck to us both.
0 -
Kessala, I don't have any fingerprints left either, and most of my toenails are gone...buy heck, it beats IV chemo any day of the week.
Yes, you should remember to take the pills within 30 mins of eating. I take mine as soon as I put my dishes in the sink. You need to take Xeloda with food so it can be absorbed with the food. As others will tell you, if you don't eat enough food, you can get nausea. Sorry, I forgot which BC.org sister said it but I'll quote, "Don't send a banana to do an omelette's job."
You don't need to be totally anal retentive about spacing the pill dosage exactly 12 hours apart. You have to try and live a normal life. Some days I take my pills about 9 hrs apart, and other days 10 hrs apart. I don't think I've EVER taken them 12 hrs apart. You just want to keep a fairly consistent dose in your body. Oh, and on your "off" weeks, you will still feel the affects as Xeloda stays in your system for a while. Some "off" weeks when I was on the higher dosage, I was still a little nauseous and had a bit of diarrhea, depending on what I ate. Now, at the lower 7 on/7 off, it's not quite as bad.
0 -
Good morning sweet ladies,
I obviously was in a very dark place last week when I posted last. Your words of encouragement and suggestions have lifted my spirits and given me hope.
I will get in touch with my onc to formulate a new plan. I'm hopeful that a change in dosage and or frequency will be beneficial.
Again, thank you from the bottom of my heart.
Amy
0 -
I was rereading some of your suggestions and saw the comment, don't do what my mom did, eat set a timer for 30 minutes and then take X. This is what the pharmacist told me to do therefore it's what I do. Am I doing it wrong? Please clarify your understanding.
Thanks!
Amy
0 -
Amy
Best of luck in your treatment. Every time we enter a new treatment it's like entering a new world. Keep us posted on how you are doing. April
0 -
Hi ladies
Have not been here for months..just want to encourage those of you on Xeloda....it has worked for me as a first line treatment for mets to the liver ( initial BC diagnosis 2007) ...since starting it in May 2013..
Initially my tumor maker (ca15.3) was 2500 and I was having severe pain...tumor marker went as low as 22 in 2015..
Now the marker is slowly climbing indicating that Xeloda is less effective...cat scans give far more reliable info and my next one in next month...Aug cat scan indicated a small amount of progression in small tumors and no change in the largest one...current marker is 59...
Schedule is two weeks on and one week off...1000mg in am and pm..does was higher initially but reduced cause of severe diarrhea.
Hand foot syndrome is controlled with Vaseline and gel socks at night...as it is severe ...works well
Skin Cracks and soft nails on fingers harder to treat...can't wear gloves easily and bake etc
The dilemma is when to switch to second line of treatment...which will be Ibrance and Fasoldex combo...which if I am reading correctly has a PFS in the Paloma three study of just nine months...,
Am reading that one week on and one week off may offer better results...plan to ask my onco next visit.
Would like to hear about your experiences which may be similar ....
Landaffqueen1
0 -
From what I've read, there have been cases where both one week on and one week off resulted in better control than 2 weeks on and 1 week off, and also the opposite, where 2 weeks on was superior. It must be individual to some extent. I believe the one aspect of the idea of one week on and one week off is that it enables a higher dosage with less side effects.
0 -
Hi Amy, that was my comment. My mother took Xeloda. I believe the manufacturer's instructions say something like, "take within 30 minutes of a meal". They want Xeloda taken on a full stomach. If you wait longer than 30 minutes there may not be enough food remaining in your stomach to protect it from Xeloda.
I would be on the phone with my mother, I would hear a timer go off in the background and she would have to put down the phone so she could take her Xeloda as instructed. WHAT? What an inconvenience! I don't know about the rest of you but 30 minutes after eating a meal I'm busy doing other things around this house, not counting down the minutes until I can take my medication!
So a couple years later I am given Xeloda for Stage IV breast cancer. The manufacturer's starter kit I was given along with my first Xeloda purchase never said to wait for 30 minutes before taking. They want the drug taken on a full stomach.
Amy, I believe the pharmacist who told you to set a timer and hang around waiting to take your Xeloda is mistaken. That pharmacist is just as confused as my mother.
Kessala
0 -
I've been on X for almost 9 mos. I take it as soon as I swallow my last forkful.
0 -
Kessala and Lita, thank you for your advice. I'll look at a taking it just after my last swallow of food. The 30 minute timer thing is annoying, especially if I'm out to dinner but to subtly take it at the end of the meal is easier. thanks again
Amy
0 -
Good news on my wife. After returning from a two week vacation in Mexico, she is about to start another cycle of xeloda. Her tumor markers continue to fall from a peak of 449. Ca-15 is in the normal range (16), and CEA is slighly elevated (36.5). Liver values continue to improve and none indicate any impairment any more. Another radiologist looked at her latest MRI and confirms that it shows stability. They believe the nodules observed are liver regrowth, and not disease progression. We spent hours walking on the beach each day. Near the end of the vacation her hand foot syndrome side lined her walking activities, but we got in 4 really good bike rides and a paddle in a kayak. She miscounted her supplements that she brings with her (AHCC for immune boosting), and also the timing of the appointment was earlier than before, so her neutrophils are slightly low and she is going to take an extra week's break before resuming xeloda.
0 -
Timothy congrats to your wife and you.
I'm raising a cup of tea to you guys.
Ziz
0 -
I saw my oncologist yesterday. She called me a legacy. We were discussing how most people I see on xeloda are hormone positive and there fewer Her2+ patients on it. She called me a legacy because I was put in xeloda before many Her2+ treatments were out. And now why fix what ain't broken. 4+ years. I'll take it.
Just thought it was a funny conversation to have. I'll take surviving long enough to see new treatments..
May we all be here to see many more new treatments.
I wish you all the bes
0 -
Left, Congrats to you, 4 years plus!!!
0 -
My wife's biopsy result for her liver mets show some changes.
ER+ (90%) no change there
PR changed from +20% to negative
HER2 negative (+1)
Any ideas on what this PR status may mean treatment wise and what does HER2 status negative but +1 means ? I know there is a HER2 possible status of zero
0 -
Timothy how wonderful to have these walks, good for you. Great news. best wishes.
Leftforw so happy for you. Here is to your Legacy.
Letmywife... Funny that my daughter's also changed to PR- but stayed Her2+ ( after having changed from the original dx of HER2-) I wonder what your doc made out of this? Any plans? From what I understood they are very strict for it being HER2+ Fish 3 or something for them to consider it Her2+. Which type of biopsy did she have that showed this?
0 -
Letmywife, mine turned to from PR+ to PR-. It is thought to be slightly more aggressive when the PR converts from PR+ to PR-. Something about switching pathways to other, more aggressive pathways. However, going from 20%+ to - is not a big move, so may have minimal significance. Mine went from highly PR+ (I recall 80-90% or so) to PR-. Even with mine starting out at highly PR+, my oncologist said he couldn't say for sure if I was truly PR- now, as sometimes the particular biopsy doesn't show the receptors, particularly if it was a small sample. I assume I am PR- but hope I am not.
HER2 tests can come out at +1 to +3. Everyone has HER2 proteins in their cells so the range is measuring how many, proportionately. One needs to be +3 to be considered HER2+.
0 -
JFL,
Interestingly her HER2 score went from 0 last year to +1 this year. Still waiting for FISH test result. I hope you are right that 20% is not a big jump
0 -
Left,
It's great to hear that you are yet to tart any of the HER2+ specific treatments after 4 years. That's excellent and wishing you many more years like this.
0
