All about Xeloda
Comments
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Minxie - that sounds like a very high dose. From what I've experienced, side effects only get worse. We all have a different approach, but if it were me I'd be telling my oncologist to reduce the dose. For reference - I started on 3800/day (I'm 6' tall and 165) - was in hospital so didn't want to have to deal with too many side effects. We bumped it up to 4300 after the first cycle, and then I did two more cycles. Then we went to 4600, which was too much for me - so we dropped back down to 4300. Then I took a cycle off as my feet and hands were such a mess. At that point my 15-3 tumour markers had dropped from 300 down to 24, I'd been released from the hospital (I was in there because the mets in my back were so bad I could not stand up or walk) and aside from needing to stretch every couple of hours, I was pretty much normal (going to gym, went on a couple of trips).
MissMonty - for me, the Xeloda was great and was also aggressive enough (see my story in previous paragraph!) After six months, my onc felt all was stable so switched me to letrozole, and then introduced Ibrance - am still on this program.
These drugs can do amazing things - MissMonty, I hope the Xeloda works for you - all the best!!
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Hey vancouverdeb - Thanks for the input. I think I've decided to give Xeloda a try, and hope for the best from a side effects perspective. Great to see that it worked well for you.
I am actually from Vancouver. I moved to Toronto last year for work. Most of my support system is in Vancouver, so it's been a little bit hard getting this diagnosis, at this time. Never a good time, but would certainly be easier if I were at home. Nice to chat with a fellow BC'er.
MissMonty
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My onc started the first cycle with 2 pills 2x day for 3 days - then 3 pills 2x day for 3 days and hold - going to 14 days. Watching for side effects and allergic reaction. Did yours? He then had me on 3 pills 2x day. But a new onc took over and wanted 4 pills 2x day.
My experience and help from others is you start slowly and find your place in the sun on Xeloda.
Tell us more about your condition now, in crisis with cancer, what is going on? And where you started on dose to get to where you are now.
Are you eating a solid meal when taking the dose? Something with good fat so absorption is premium for you. If I have a salad then a spoon of coconut oil, for instance. But always I have to eat solid food or I will puke.
Also - I used apple pectin capsules one a day to keep from having diarrhea when I was on a drug that caused it and that worked. I would have gone to 1/2 cap a day or one every two days because the apple pectin caps worked too well for awhile.
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Minxie- please ask for a reduction in dose. You are on a very high dose. I started at 4000/day decreased to 3500 and am doing much better. I also weigh a Lot more than you.
I will say my bowel moments are not normal, but I have learned how to plan my day around taking my pills and the SE.
I've managed for over 4 years at this dose.
An aside- the first few cycles are the worst as your body adjusts. So i hope that s reduction plus a little more adjustment time and you will be able to tolerate Xelod
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Minxie, I agree with leftfootforward. 4600/day is the 'approved by the FDA' dose. My MO told me that no one prescribes that for breast cancer patients anymore. People (that means you) can't tolerate it. And it sounds like you're not tolerating it.
Ask for a dose reduction at your next visit. The other thing my onc told me that my last visit is there doesn't seem to be a dose response to Xeloda. In other words, more is not necessarily better. You want the lowest dose that will work for you.
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Minxie, You weigh about what I weigh. Lomatil is pretty strong...I'd suggest asking MO to cut you down to maybe 3500 mgs...take 3 pills during the day and the 4 at night. You want to knock those mets back. If 3500 is still too much during 2 wks, you could try 1 wk on1 wk off. Research has shown that 1 on 1off works just as well and is better tolerated.
I'm 1 on and 1 off, so diarrhea is better, but I still have Hfs, and now the dizziness and headaches are pretty bad...but I've been on X for 15 months now. Dizziness and headaches started about aomnth ago.
Gonna ask MO if I can skip an extra week...I know my blood cells are very low.
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Does anyone know if a poison-ivy like rash occur as a SE of Xeloda? I thought I had poison ivy but this rash is spreading and I've been away from the plants for over three weeks. It actually looks closer to that rash similar to or related to chicken pox. I'm having a senior moment right now and can't think of the name.
It continues to spread mostly on the trunk of my body but shoulder area, face and thighs. Thoughts anyone's?
I can't get in to see my doctor as my father passed away this week so I'm helping my mother with funeral arrangements and can't get home until August 30th.
Thanks for any ideas on this most annoying, itchy situation.
Amy
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Amy...shingles?
Have you ever had chicken pox?
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I feel like s#$t.
Not going to take my last dose this cycle. The dizziness, headaches, spots in front of eyes, .nausea and bloating are too much. Very scary. Been battling these SEs for over a month. RBC has been hovering at 3.25 to 3.27 since June. That's below normal. Trying to get extra iron in, but it's not helping.
I will be taking a SECOND week off whether MO likes it or not. This is what that still, small voice inside is telling me to do. An additional week off won't kill me.
I may need a transfusion if this doesn't improve.
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Amy, I'm so sorry about your father. Can you maybe go to an Urgent Care? If it possibly is shingles, you don't want to delay getting tx for it, especially if it's on your face, and also because it can become extremely painful
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shingles was the dx I was trying to come up with but my husband, an MD doesn't think so. He looked at it and said it's not along nerve endings or something like that. Just wondering if my body is rejecting the Xeloda and doing so in the form of a rash
Thanks Deann
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Off to my PET scan this a.m.
I had that BLASTED headache all night long and still have it this morning, so no sleep for me. What else? Throbbing head AND can't eat anything til after scan. Boo!
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Minxie, you don't need approval from your onc to reduce your dose. My onc trusts me to make those decisions. It's my boat and I am the captain.
Lita, sorry for all the troubles and you are right about taking an extra week off.....just do it!
Amy, I had a rash and it itched like crazy when I first started X at 7 pills a day. Had it almost everywhere. Reduced my dose and it went away. I no longer have a rash. I was on 5 pills a day (500mg), now I'm doing 3 pills a day. 1 pill, 3 times a day with no break. And I don't need to eat, with only taking one pill. Only have done this for two weeks. I have an appt. on Aug. 31, so labs prior to that will tell me if the 3 pills a day is working.
I am rather freckly so a little hard to see. Had this on my thighs, arms, chest and back. My lips blistered.
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I was diagnosed with TN stage IIa almost 9 years ago. I had a local recurrence 3 years later, and then mets to the lung last year. Lung lobe was removed. Then 6 months later it showed up in lung lymph nodes. My doctor was trying to get me into the CDX-011 trial. We waited over 6 months for my tumor to be big enough to qualify. Finally it did, but I got randomized to the control, Xeloda. My first two weeks of this are not making me happy. This morning I had to use the toilet 3 times already. The Lomatil Is useless. Thanks for the info. My onc and I need to talk
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Hi MissMonty - yuck - that's no fun - cancer's bad enough without having all your support systems in another province. C'mon back! (Although Toronto's pretty cool - my daughter was out there at uni & I always loved visiting). I hope the Xeloda works well for you.
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Thanks for your responses ladies. I did Google rash and Xeloda and found a potentially fatal side effect from X but did not panic. Called Onc and waiting to hear back. I started taking prednisone which I think is helping. Spoke to oncologist tech at the pharmacy where this is dispensed and he suggested holding on any additional doses until I hear from Onc.
Good luck to you Lita. I hope things improve.
Amy
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Just want to report in that my PET/CT shows stable disease. I've been on xeloda for more than 30 cycles (I think about 32), at 2000 mg a day and no side effects. I feel blessed.
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Thumbs up, Winningsofar.
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amyQ- I got a rash from Xeloda. Benadryl helped. It did stop happening after a few cycles. Hopefully yours will resolve as well. I remember how itchy it was. Not fun. Hope you get relief soo
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AmyQ, a rash was one of the things I was told to "stop taking the drugs and call me" [in that order]. Glad you called in and I hope the prednisone helps.
Minxie, so you're on a trial dose. That makes more sense. Your diarrhea should be a severe enough side-effect to warrant a dose reduction. Usually trial protocols allow for that. Don't downplay it to the research nurses.
WinningSoFar, congratulations!
Lita, I hope the PET scan turns out great!! Sorry about the headache.
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I just emailed this to my doctor and the research coordinators. I see my doctor next week. We'll see what he says.
"This past week on Xeloda has been a nightmare. The gastrointestinal symptoms have been as bad or worse as when I was on ACT chemo. The Lomatil seemed to help early on, but stopped working completely over the weekend. I've had diarrhea 8 times over the past 24 hours, along with nausea and vomiting. I've lost 4 pounds this week. My feet hurt so much I can hardly walk.
This is not doable for me. I can't live my life doubled over with cramps and tethered to a toilet. I'll give Xeloda one more try only if I can get on a reduced dose and a 7/7 dosing schedule. If the trial does not allow that I'm dropping out."
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I posted this elsewhere, but possibly one more reason (in addition to dose) why some have more issues with Xeloda than others...
http://www.ascopost.com/issues/december-10-2016/co...
This research compared bioequivalences for another chemo, but I don't know why these variations ("... increased toxicity for generic vs branded formulations") would be any different for Xeloda.
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That should get their attention, Minxie. If they reduce the dose, you may not need to change the schedule. I agree with pajim. Likely they just need to hear what you just told them and protocol will dictate a dose reduction. A small percentage of patients lack the proper enzyme to metabolize X properly, and have dangerously severe side effects, so insist on a call back soon. But likely it's just too high a dose for you.
Winning, stable disease and 30 cycles is wonderful! And encouraging. May I ask if it's bone mets only?
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I believe firmly that generic drugs should never be less than or different than the branded drug. It is just wrong. Good article to share.
Minxie - good for you to tell them. I hope they let you switch dose and to a 7/7. If not, are you going to use the Xeloda through the oncologist?
I see some good reports and hopeful news too - really helps to know, helps all of us. Winningsofar - good deal!
I talked to Hubby - I have decided to go on one more cycle at a little higher but not as high. Since I am just now getting out of the danger zone where I had bronchials / main airway and superior vena cava heart vein closing off from lymph masses, I want to push harder at the beginning. So will be doing 10 days at 3 pills in day and 4 at night. Next cycle will be 3 and 3. My goal is like some others to do 1 pills 3x a day with no breaks. Along with alternative supplements like raw hemp oil w CBD / CBDa and Ojibwa tea for liver and blood support.
I reviewed my cycles vs cancer marker. The 10 days on 4 and 4 pills AND the 14 days at the beginning lower dose was when the marker dropped the most. Not at the last cycle of 14 days w 4 pills 2x a day.
I also have bad news - that the CA marker back in October when the cancer was at the absolute worst in Sept / Oct / Nov - that marker was the lowest one I ever had. Shoot. I KNOW I knew that, I told the new onc. But forgot it was not just in normal range - it was the lowest ever. But the new onc is all about the marker dropping. While I continually have told him that marker cannot be trusted, not my labs since they were pretty perfect too, very perfect. Except a high RDW. Which he said while on Xeloda or chemo at all the RDW would be higher since new cells are forming more than usual so there is a variation. I just don't know if I buy that. Will be going to labs forum and ask if anyone knows. But if anyone here knows, let me know please. Thanks.
Good news is I feel that the Xeloda has worked for me and I think what I am dealing with now is lupus / scleroderma / Sjorgens or combo of Unspecified Connective Tissue Disease. The overlap is scary but the Xeloda is the firm base for me right now, used wisely I feel it will get me a long way like so many others.
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I have not been here for a long time. No real reason ! I have been doing extremely well on Xeloda, having been on it almost 3 years.
I take 1500 mg. in the morning and 1500 in the evening. My biggest SE is the hand and foot syndrome. At times, it is really bothersome. I do use Aquaphor, Bag Balm and several others. I can't say that one works better than the other. I tend to slack off when my hands and feet get better. And, I know I really shouldn't do that. Keeping everything hydrated is important. Just forget when they don't hurt
Right now, I am back to having trouble with diarrhea. I can go a good while without any problems and then it starts up again. I do take Immodium ,but that tends to make me constipated. Last week, I really was bound up so bad, that I thought I was going to have to call 911. I just couldn't get relieved. Finally, I was able to use a suppository and that finally worked.
I just was wondering how others deal with this back and forth problem. I almost hate to take the Immodium, but I am afraid to go out if I don't. Wondering if I should be taking something to help with the constipation the day after I take the Immodium.
I will be interested in hearing how others deal with this problem. I always have to wear a Depends, just in case. Luckily, I haven't been caught out yet with not making it to the bathroom. I get nervous and that only makes the problem worse. I don't know which is worse.......... the diarrhea or the constipation ......
I am getting ready to visit my granddaughter, who has a 8 month old baby girl, who I have never seen yet. I will be gone 4 or 5 days. I already checked with the doctor and I will not be taking the Xeloda for those days that I am gone. He called it a "Medication Vacation". LOL I know we will be going different places and not always sure whether I will have a problem getting to a bathroom.In December, 2017, I will have been dealing with this cancer for 10 years. I continue to do well. Have a couple bone mets and liver mets, but they remain stable and do not show much activity. My last PET scan in April was good. My TM numbers are slowly going down and my oncologist is pleased as is the Orthopedic oncologist.
So, I am grateful for how well I am doing.
Thanks for any suggestions from anyone who is dealing with this same problem.
Joy
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I had planned for diarrhea and I used apple pectin capsules which is good for diarrhea. But start with one then go up or down as needed, they can tend compensate too well.
When constipated which was for another reason, I used Senecot-S (spelling?) which has the stool softener. The constipation was misery, felt like I had no power. I prefer the runs but it's a toss up
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Joy, thank you so much for posting and sharing that X has worked for you for three years so far, even with liver mets. The gastro issues sound difficult to live with. I wonder if consulting a gastroenterologist or a palliative care specialist would help you make a plan to keep things more steady. Enjoy your medication vacation -- you've earned it -- and drink up the joy of spending time with your new grandchild!
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Bluebird-DE,
Thanks for your information. I have thought of using a stool softener, but then afraid that will just make the diarrhea worst. . And, yes, I do agree, the runs are better than the constipation if you have to pick just one. LOL
It is a catch-22 thing.
ShetlandPony,
Thank you for you nice wishes/ If it continues to be a big problem, I will talk to the nurse practictioner (sp) and get her imput.
I especially liked your comment and "Drink up the joy of spending time " etc. This little girl is named Iris Joy, with her middle name Joy, named for me. I am so anxious to see her. I have 4 sweet little great-granddaughters and 1 great-grandson, . So, your comment warmed my heart.
I hope you all will have a good evening.
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The back and forth of diarrhea/constipation is a nightmare. I use Imodium, too...and Depends as a backup. Im happy im not the only one who uses Depends for that purpose.
Prunes, raisins, dried apricots help me when plugged.
I hate the diarrhea that comes out of nowhere. I went about 3 wks with hardly a problem, then yesterday it hit again. On and off toilet all day and nightAnd i hate that pain in the sphincter i sometimes get, too. I have to use a warm compress up against the anus. Just horrible
It doesnt make any difference if i have mild or spicy food. During my 3 wk vacation from diarrhea i ate spicy stuff and was fine. Fhis last wk mild food and diarrhea again.
Drives me crazy.
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Minxie, you've got a grade 3 toxicity (side-effect). That's grounds for immediately stopping the medications until you're better. Then you restart the new cycle at a lower dose. You're on day 10 or so of X? What did your onc's office say? Call them and tell them 8 bowel movements a day with vomiting. This is not a cross you have to bear.
I have zero advice on bowel issues. One of the things I like about Xeloda is it makes me regular.
I feel badly for those of you who get diarrhea.0
