All about Xeloda
Comments
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hi everyone. Zarovka started a new thread in our stage 4 forums last month titled how many are we 2016. Z is attempting to count the number of metsters posting or lurking on our stage 4 threads. We are both thinking that folks possibly missed the thread because they likely monitor only threads marked as their favorites. If you don't mind bumping over to that thread if you have not done so already it would be much appreciated.
Thanks so much, Mary Anne
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My wife is continuing to improve on xeloda. Just got back blood work from yesterday and her tumor markers continue to fall. Unfortunately her neutrophils are once again too low, so she has to take an additional week off xeloda. Tumor markers have fallen over 75% over the last 3 months. Her side effects, fatigue and hand foot syndrome continue to improve as well. She lowered her dosage from the start, and is taking the xeloda one week on, one week off now. Much improvement in side effects, and still pulling down the tumor markers at the same pace. Win Win.
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Timothy- that's great news!!!! So happy X is working for her!!!
Babs
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Hi everyone, I've been taking a little break from the boards, but back in and glad to see so many people doing so well!
Like Timothy's wife, I'm on an extra off week right now because my neutrophils got too low and need to recover. Timothy, do I read that right that her previous break had no effect on how the Xeloda was working to bring down her tumor markers? That's my fear with extra time off but it sounds like that's not the case for her, at least.
Other than that, I'm still doing well on Xeloda. Tumor markers have been stable, slightly inching down, and just a few points above normal for the past 3 months after dropping rapidly the first 4 months. My hands and feet are still a little punky but not too bad.
Also, I took a vacation in Spain with my teenager, lots of walking and my feet were pretty bad for a bit there (usually my feet are ok and my hands are cracked but walking and not working brought just the opposite), but luckily I'd brought 3 different types of shoes (Toms, cork sole Merrill sandals, Born sandals) and could switch off a bit to give different sore spots a break. Also figured out how to buy more bandaids in Seville and found these little slip on shoe liners with padded bottoms in Madrid, so that was cool
I'm trying to focus on how several of you have been doing well on this drug for years and that could be me, but part of me also felt it was important to get that trip in with my girl while I'm doing ok.
How were other trips, I know several of you had things planned? How's the antioxidant lotion experiment going? Everyone having a good summer?
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And just for fun and because I love seeing other people's pics, here's me and my girl at the royal palace in Madrid!
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RosesToeses, I Love the picture two beautiful girls and I can definitely tell your mother and daughter.
Did you have any issues with Xeloda while on your trip?
I would like to take a trip to Europe to see my Swedish son and my German son . They are not really my sons but were exchange students for their senior year of high school at the same time . They usually come to visit me once a year and this is on my bucket list . My MO is not keen on the idea of me traveling in case I would get sick . Guess I will have to go without telling her just like I went to Florida to visit my friend.
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Roses, my wife has taken up to 3 weeks off xeloda, and even during the third week off, her tumor markers continued to fall. Not sure what to conclude, but I will think of it positively and take it as a sign that time off doesn't seem to negatively impact treatment response. Her first MRI showed marked improvement in her liver mets. I fear it was working too well and that the rapid kill off of cancer cells was what caused her ascites that only appeared after two weeks of treatment. She's had low neutrophils before, and an extra week off worked last time to bring them up. She will get tested again on Monday, hopefully resume xeloda on Tuesday.
The added time off has really helped her hand foot syndrome. She is also trying Differin on her feet. We will have to wait and see how that works. It's hard to say what is bringing her feet relief, but they are getting much better. No more sleeping with ice packs on her feet.
I would love to go to Spain. I am learning spanish (been at it hard for over 2 1/2 years), and watch many videos in Spanish about trips to Spain. Our daughter who got married last summer went to Europe on her honeymoon and they enjoyed Spain the most of all places they visited.
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sorry all, have the flu so not in the mood to read all posts I've missed in the last couple of weeks.. Just a quick update.. Still on X!
The last few months tms skyrocketed yet MO added AIs and still keeps me on X. So far so good. The daily dosage is just 2 x 500mg so qol improved immediately.. AIs are not more enjoyable yet pills .. Always prefer pills.. And still doable!
Hang on everyone, X is a big gun and definitely worth all the SEs .. Experience talkin'
Hugs
Ebru
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It's so wonderful to hear about good results with Xeloda. Let's kick this cancer so badly that it never comes back.
Cheers chicas.
Ziz
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Hi all - so glad to hear some individuals haven't had ill effects when taking extra time off Xeloda. I took off 1 extra week 2 months ago due to bad HFS (after 1 year of no extra breaks on my 7/7 cycle) and my TMs went up over 100 points. Was quite discouraging! After the extra 7 days off, I went right back to the normal schedule and TMs have dropped a total of 139 points the last 2 blood draws (onc appointment every 4 weeks, so 139 points in 8 weeks). Now I'm wary of taking extra time off based on my experience, even though I know it needs to be done at times due to SEs. Sounds like others have had a better experience than me regarding this.
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I have read case reports of women who went off xeloda, switching to a hormonal therapy, after 6 months or more experiences progression, then switched back to xeloda and experienced control again. For some women this drug works really well. I've also read of a woman that experienced progression on xeloda, using it 2 weeks on 1 week off, then switched to 1 week on 1 week off, and experienced control again. But I've also heard a report here on this thread of a women who used it one week on one week off and experienced progression, then switched back to two weeks on, one week off and experienced control. Very individual results.
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Ebru, is it common where you live to give hormone therapy with chemo? Or is your doctor trying something out of the box? Curious because they don't generally prescribe the combo in the US. Would like to hear more about it.
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Just saw my MO yesterday. After taking an extra week off and a lowered dosage ( 2-500 in Am & 3-500 in Pm) my ca15-3 went up 6 points but it's still in the normal range. I'm a bit concerned but my MO is not at all. I called her and she wanted to wait to see what happens next month. Not me. I don't want to give my ca a chance to rear its ugly head again. I want to up my dosage back to 3 & 3. Her concern was my HFS but I can deal with that so I am upping my dosage as the end result of our conversation was that it's my decision
Thoughts?????
Babs
FYI My CA 15-3 has always been spot on with what's going on with my cancer
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6 points..... but what percentage? For me that has always been the clincher. I would be more concerned about 30 => 36, than 100 => 106. Would she split the difference? 2 pills in the AM and then 3 at night? [And, I just realized that I use the 27.29, not the 15-3 so not as knowledgable.]
*susan*
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Susan
Went from 21 to 27. Normal is up to 34. I've been on 2 pills in the am and 3 pills in the pm for the past month. So that's why I'm upping it to 3&3
Bab
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hi JFL,
My MO is one of the top teaching oncologists in the top scale med school. She not only is updated with each and all new protocols around the world, but also performs each patients' therapy intuitively based on all med background.
At some point she suggested giving up X totally and go back on AIs only (which betrayed me so badly in the first round).. Then we decided to move on a bit with the current combo. Worked wonders so far in such a short time with great improvement on QOL.
She is very experienced with MBC, our state health insurance allows so much many more modern countries restrict (sadly).. Guess we are using that advantage right now.
X has had severe SEs on me as well, yet I resisted giving it up earlier.. Worked my way around with great nausia pills ( please use them not to lose appetite, not just for vomiting), stomach protection in the highest level and strict diet .. Helped so far!
Worth digging into this more, I say.. Hope for better days ahead to all?
Hugs
Ebru
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I am on my 3rd cycle of Xeloda...TMs are half of my high point thus far so ONC and I are both pleased. Side effects so far are manageable...I take a probiotic and Imodium when needed and no HFS yet but taking notes on what you all are using for treatment just in case. Am on a high dose...2000 mg twice daily...labs normal so far but I sure feel better on my off week ! Encouraged to hear how well many of you are doing!
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Ebru, thanks for the info. I am going to look into it further.
Babs, go with your gut. You know your body better than anyone else. I, too, have tumor markers in normal range but had a 6-8 point jump on my recent progression prior to Xeloda. Went from 19-21 "normal" range for me to 27 on the CA-15. My MO has since added the 27-29 which was slightly above normal at that time. If you can handle the HFS, it might be worth it for peace of mind.
Stilts, glad you are having good results so far on X!
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i completely lost my eyebrows in the week I've been in the hospital. I didn't think that was as SE of X ???? The whole reason I chose X over taxol was because I wouldn't lose my hair. Oh and also rather take a pill then IV meds
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Babs, I agree with JFL on going with your gut. I don't want to freak you out or anything but my tms were finally going down over about 3 tests then the next test each one (I do both) went up 5 points, then the next another 5 on on the 15-3, and 20 on the 27-29, finally on the 3rd test....(because I chose to continue the Xeloda hoping they would start coming back down again) a jump of 39 on the 15-3 and 211 on the 27-29!! Talk about freaked out! I think even my onc freaked!
Sorry to keep on with my negative story while all of you are doing SOOOOO GREAT!!!!! on X! I am so jealous! Needless to say....I am no longer on X. Last Sunday was my last day. I had a power port put back in last Wed, a CT on Fri, and starting Gemzar this Wed along with finding out CT results which I am scared to death to know. I imagine with a jump like that, it can't be good. Ugh!
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Nicci,
Will be thinking of you as you head into the CT Scanner on Wednesday. I am sure everyone agrees with me, we all wish the X had been the right drug for you.
*susan*
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Nicci. So sorry X is not working for you. Hoping the scans are better than you're expecting and that Gemzsr kicks your cancer in the butt
Bab
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Bev failed her platelet count again. This is two weeks after stopping xeloda. Any suggestions other than hang in there? Neutrophils were up to snuff, but platelets were only at 49. They feel for some reason even though she was off treatment for two weeks.
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Thanks guys! I'm just really freaked out.
I have been off Xeloda for 9 days now and the H/F looks like I am on day 3 of a new cycle...ugh! I wonder how long it takes for this to get out of your system!?!?
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Just letting everyone here know, that my ride with Xeloda is now officially over after 44 months. (I was hoping to make it to 4 years, but, I am very happy that Xeloda has kicked cancers butt for me for all this time and the side effects were a good trade off). I have progression again in both of my lungs and my pleural effusion has grown and will be monitored.
Wishing all you lovely ladies the very best of luck with Xeloda, and sending you all warm hugs.
Mandy xxxxx
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Wow Mandymoo! 44 months is amazing!! I am off too now as of 7/31. What is your next step?
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Just started X today. Hoping for the best!
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Mandy- I only home I get 44 months out of X. Thus far it's the longest drug Ive been on-8 months.
Good luck with your next treatment!
Babs
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Mandy. Sorry for the progression. Very inspirational that you got 44 months with X. Here's hoping your next treatment gives you at least that long. Hugs
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Mandy- will miss you. May your next treatment be kind. Wil be thinking of you. Best wishe
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