All about Xeloda
Comments
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Question for you all:
My MO is talking about putting me on xeloda while I get radiation to my hips as a result of my right hip replacement and the placement of a rod in my left hip area to stabilize it. Both areas were issues due to both cancer and severe, acute arthritis.
I am wondering if any of you who are currently on xeloda as a result of genomic testing. I had three different genomic tests and on NONE of them was xeloda mentioned. Is it because it's an older treatment choice? Is it because it's a type of chemo? I'm just trying to put the pieces together here.
My MO has said that xeloda can be used while radiation is going on. I know that is one reason she is pushing for this. She says it will be a low dose.
Thanks.
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BevJen, So sorry to hear about your dual hip problems. That is a long time to be in the hospital and away from home. Rehab can be a long. slow process, so wishing you perseverance and an easy transition to Xeloda. Keep us posted as to how you are doing.
Wandering, I hope you are feeling better after your stay in the hospital and are getting used to Xeldoa. I think of you often as we started around the same time. Did your mo give you a dose reduction? I hope you are feeling better, the nice weather sure helps (at least emotionally), doesn't it?
My first 2 cycles (2 weeks on/ 1 off) at 3000mg went okay, but cycle 3 had me feeling really awful, bad stomach pain and Big D. Just getting dressed felt like a major undertaking and I could barely get off the couch. But during those 1st 3 cycles my CA15-3 went from 1200 to 100! Needless to say I am thrilled and this great result along with the intolerable se's allowed me a dose reduction to 2000mg. It has taken several weeks, but I'm finally feeling pretty good again. Hoping to get a good long run on this med as I think IV chemo is all that is left for me after Xeloda.
Wishing everyone the best in good results with tolerable se's.
Jo
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Bevjen, it seems we were both posting at the same time. I don't think genomic testing is useful or applicable when it comes to a chemo drug. I had a hard time getting my brain around this after being on a number of targeted therapies suggested by my genomic results. I had radiation to my right hip while on 300mg of Xeloda. During the 2nd week of rads I started having really bad D. Both the rad doc and my mo seemed to think it was from Xeloda rather than the rads, but I felt like it was a double whammy to my system. The rads helped my hip pain dramatically and quickly, hope they do the same for you. Starting on a low dose of Xeloda while you undergo radiation seems like a good plan. Fingers crossed for you!
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Jobur,
I see that you have nerlynx listed in your profile as well. My MO has been mulling a lot of things, but nerlynx is one of them because I have two ERRB mutations. Were you taking the nerlynx at the same time as the xeloda? Also, how did you get that approved, since my drug plan denied because there is no evidence that I am HER2+ -- only these mutations.
Thanks for the info about the big D also -- I am not looking forward to that if I do the radiation and xeloda together. Yuck.
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BevJen, I am on Xeloda as it is a systemic oral chemo.
My F1 only listed possible tx for one of the mutations, a parp inhibitor for ATK inversion exon 55. The other mutation FGFR1amp, F1 listed a clinical trial.
I guess it doesn"t state standard chemo oprions.
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jobur: I am almost back to normal after my stay in the hospital. I was off Xeloda for about 3 weeks (before and during hospital stay). I am now back on Xeloda - same dosage but one week on and one week off. I start cycle 2 on Thursday - so far so good. I was normal last time for two cycles then things fell apart. Got my fingers crossed. Need to have some fun during our short summer. It snowed big time last week and could snow anytime after September. We like to fish and camp when the weather is nice. Don't know how many more years we can do that (I'm 76 and my spouse s 82). Hope everyone is thinking about our service people. So many have sacrificed so much for us.
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BevJen...I am on Xeloda because of Genomic testing with Foundation One.
I was on Kadcyla for 4 years for 2 chest node mets, and when Kadcylla stopped working, I had the test.
It showed that my nodes had changed from Her2+++ to Her2- Somatic (Gene Mutation). So I am on Xeloda and Herceptin.
Actually, Lynparza (Olaparib) was suggested by Foundation One, but while I was waiting to receive the test results, my onc put me on a clinical trial of (nasty) Poziotinib, which blasted the nodes away in only 8 days. It darned near blasted me too!
But since I was then NED, I was put on 2,000 a day of Xeloda & Herceptin.
And I have a $14,000 bottle of expired Lynparza in my cabinet that I should take somewhere to get rid of. It only cost me $4, though.
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Wandering, I’m glad you are feeling better and hope you are able to enjoy the summer weather.
I shared that Friday I wasn’t feeling good. I woke up so depressed and couldn’t stop crying. I also just felt so drugged. Out of it. I was shakey, no appetite, gagging. I skipped my evening dose and just focused on hydration, eating yogurt. I felt somewhat better Saturday, but still very teary. This is not like me at all. Very out of character. Is this one of the side effects? I’m 5’4, 130lbs and am on 4,000 a day 14 on and 7 off. I’m going to ask for a reduction of 1,000 to 3,000 a day. I’m scared of if this will be effective... I will discuss with my MO but am looking for feedback. Thanks so much.
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txmom, whoah! That seems like a heavy dose and I would definitely call your onc.
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OMG txmom - that is a mega dose given your size. Not sure why they would put you on something that high. I was on about 3,000mg per day when I first went on Xeloda in late 2017 but had problems with my heals so the MO dropped my dose to 2300 this time around. It's now been dropped to 2,150 which has brought some relief to the HFS issues. BTW, I'm 5'5" and 135 lbs.
Re: the big D issue. I didn't have any trouble when I was on Madame X initially and this time it was cycle 4 or 5 before the big D made an appearance. Nothing I can't handle. Just occasional issues and tends to be only one big blow out and then I am good. Just seems ironic after coming off Verzenio which is known for major gut issues. What is it with cancer drugs and the bowels? It's either severe constipation or diarrhea. Sigh....
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Wow 4000 mg/day and weigh 130?
Something does not sound right. I started at 3300mg/day based on my weight of 125 and height 5'5".
Could you talk to your MO about how that dose was determined?
Sadieservant..you and I are similar. I am now 2150mg/day..7/7.
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fwiw, 4000 would be the top end of the dose range prescribed here.
Our (BC cancer agency) guidelines are 2000-2500 mg/m^2 (except for elderly, poor performance status or extensively pretreated, and then they start at 1000)
where m^2 is body surface area. Putting in your stats to a BSA calc I'm getting ~1.6 & 1.6x2500=4000
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Whoa is right about 4000 mg daily, plus taking them 14 days in a row and then only 7 days off. I take 2000 mg daily 7 days on 7 days off and onc said studies show this schedule is just as effective as 14-7 and allows side effects to be more tolerable. I started at 3000 mg and after six months got a reduction due to severe hand and foot syndrome. Its improved since the reduction. And scan was okay after six more months.
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What would be considered extensively pretreated?
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good question dutchiris. It's not defined in the protocol. I'm asking around.
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dutchiris-extensively pretreated would be me...at over 19 years of chemo. I am only 5'1" and 20 pounds overweight and was put on 2,000 at 14/7.
But that was lowered to 7/7 and now I am on a 7 week break since I ate too many salads (my bad). I will start back on X at 1,500 a day this Thursday....for 2 cycles, then go back up to 2,000.
And I agree with everyone else, txmom...your dose is way too high. If 2,000 a day can keep me at NED, that is darned good.
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At USC (california) they use one dose to start for everyone which is 2000mg per day. My ANC couldn't recover from 14/7 at 2500 per day and I was changed to 7/7 and dose lowered, and no longer have a problem. I think like a lot of the other drugs if it works the dosage doesn't matter that much except for side effects- some of these super high doses might capture a few people, but, mostly not.
I did wonder if Xeloda caused mood problems because I didn't feel happy for several months, but, those mood problems are gone- so not sure if it was drug related or not.
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NkB- I am on some Facebook Xeloda discussion groups and many women have written about mood changes.
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Bevjen~ I was only on nerlynx for a short time as I had major progression while taking it. I started Xeloda after so I was not on both at the same time. Didn't have to jump through any special hoops to get insurance to approve it, however they did deny ado-trastuzumab which was also indicated for the erbb2 mutation. Hopefully your mo can do an appeal to insurance for nerlynx if they think this is a good option for you. Don't worry too much about big D from rads/xeloda. Though it was a problem for me, most here don't seem to have issues with this, more with HFS which has not been a problem for me so far
Denny123~ What genomic mutation did Foundation One find that suggested Xeloda would be effective? First I have heard of this.
Wandering~ So glad to hear you are feeling better! Hope the new dosage & schedule keeps you feeling good. That's great that you and DH are still enjoying camping, etc! Hope you have the good weather and health to pack in a lot of fun this summer. Winters are long here too, though with snow last week you have us beat!
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Jobur,
Thanks for that info. My MO is sending in a second appeal for the nerlynx bc my Medicare Part D insurance says that it's appropriate for me bc I don't have HER2+. No idea why different insurance companies make different decisions. But I didn't write the appeal -- my MO and the department pharmacist did. And hopefully you are right about big D -- I've just had so rough of a go lately that I just feel like I can't face any more right now.
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jobur...I have no idea why I was put on Xeloda, except that my recurrence was Her2-. If the nodes were still evident, I would have had to do Lynparza.
But since I became NED, I guess that my onc put me on Xeloda at a low dose for maintenance. This is my fifth line of treatment in 19+ years.
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moth, what does fwiw mean? 😂 So for my height and weight 4,000 is the high dose? . Also do you know what the low dose for my range would be? Thank you for your help.
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txmom, I know you asked moth but I thought I’d chime in.
FWIW is for what it’s worth
4,000 was my initial dose for Xeloda. I am 5’6 and 230 lbs but it was reduced to 3,000 due to extreme nausea and vomiting.
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txmom, the range for xeloda for mbc at BC Cancer is 2000-2500 per m^2
Your bsa (body surface area) is approx 1.6 m^2 so the lower range would be 2000 x 1.6 = 3,200
That still seems like a high dose based on what I see on this thread but that's our official tx protocol for starting - & then they have dose reductions for symptoms etc. I'm not on xeloda atm; it's just that my current line is probably not working and it's one of the options I've been given.... so I'm here to lurk and learn. I only waded in because if I do go on it, I'm expecting to likely start at 4,000 as well & just wanted to say that it's not necessarily an unusual dose to start but obviously if you're having serious side effects it's too much.
oh & also, for xeloda (& 5FU) you need a functioning DPD enzyme and people who are experiencing toxicity, DPD deficiency might be the cause because the chemo builds up in the body instead of being properly metabolized. I used to have an article on this and breast cancer but can't find it now - here's one from a colorectal cancer site but the issue is the same: DPD and xeloda or 5FU
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Oh ok. Thanks so much. I’m seeing my Dr on Thursday. Tomorrow starts my first off week. Is there anything I need to know? Thinking I got the insomnia side effect as it’s 1 am. I hope everyone is having a good week. I saw this bit of wisdom from a psychologist about how the brain likes to stay stable so if you are feeling down on the couch, sit outside to change your brain. Hope this helps someone. Sending gentle hugs to all.
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txmom: I always have trouble sleeping. I've started taking 5 mg Melatonin at 10:00 pm. Go to bed at 10:30 after the news and sleep like a baby until about 5:30 am. If I do happen to wake up say around 3:00 and cannot go back to sleep I take another pill. This routine has helped and I do not feel groggy in the morning. I did run this by my oncologist and he's OK with it.
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I used Melatonin for about 3 years on Kadcyla, but it stopped working. I have problems sleeping now and then. I usually go to my recliner and play Word Chums for a bit and sometimes that works.
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I am anticipating going on xeloda as systemic treatment within the next couple of weeks.
Somewhere I read (and then wrote down) that xeloda after you've had taxotere is not a good thing. I have no idea where I got this idea from but I'm wondering if anyone else has heard/seen this. I had taxotere as part of my original cancer treatment in 2003/04.
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BevJen-I have never heard that at all. I had Taxotere in 2003-same as you did. And I have friends who had Xeloda shortly after Taxotere.
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Comment regarding dosage... I ran my numbers and looked back at dosage and it appears my MO (BC Cancer Agency) had me start at the lowest end (1000 mg/m3 bid) from the get go. For my height and weight that translated to a starting dose of about 3000 mg per day). This time around they dropped my dose by 75% due to HFS issues which had reared its head.
I am still high functioning and at that point had only been on one chemo and one hormone treatment in the MBC sphere so wouldn’t be considered heavily pretreated at that point. It seems from posts on this site and my own experience that starting patients at the high end is rare. I suspect clinicians have found patients just can’t stick with that dose.
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