All about Xeloda
Comments
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I posted this before but wanted to give you an update. I have been using this cream for a week now. My feet are 99% better! Look normal with a few tiny spots of peeling. Truly amazing.0 -
that you Dianarose for sharing that valuable information. I will get a prescription pronto from my dermatologist. I just started taking x but I can’t tell from the itches, weird stuff on my body and tingling in my fingers that H&F disease is not too far away....
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Shetland-I will try anything!
Goldie-it's true that with diabetes one needs to watch carbs, including fruit. I was a lab tech for 30 years, and saw hundreds of lab results of out of control diabetics. I don't know what these patients were doing, but I imagined them eating entire coconut cream pies. I have brought my blood sugar to normal levels with diet, exercise, insulin, and an oral med. Now tapering off of the insulin. Feeling wonderful and have made the choice not to limit fruit. But, thanks for your sweet(no pun intended)concern! Also, LOVE the scarecrow!
Best to each, Mary Jane
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So i'm a nervous wreck ! My tm are going up , so I believe Xeloda quit working for me .Did a scan didn't find anything . Anybody else out there that this happened to ?
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kimchee- how much had it gone up
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40 it's now at 89 in last 2 months
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Shetland, Leftfoot, Mike and any others I've missed who have had success for a year of more with Xeloda especially any liver metsters, did you get to NED or just stayed stable for a long time? I just had my first scan since starting in March and I'm stable. I know I should be VERY happy. I really want this to knock the buggers out for awhile though so I'm just a tad disappointed which I know is nuts. My tumor markers were in the 600's in March and now at 196 so that is a very good trend. Any words of wisdom/encouragement or perhaps what is needed is a good ole knock upside the head to bring me back to a place of gratitude?
Lisa
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Please God , give us all good news or some how let us know a cure is on the way Amen
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Intothewirds- I did teach NED for years. I now have liver tumors again but am stable. I get how you feel about knowing you should be happy with stable. I should be too but I was hopeful I’d teach NED again.
Decreasing TM is s very good thing. Be happy. You might get there.
I’m grateful to be stable.
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Hi all, I have a question. I am on day six of Xeloda and I am dealing with the se's ok, however, the dizziness is a problem. Especially since I never know when its going to hit. Will theses se's go away on my week off? Will the dizziness go away? If not I need to lower my dose. I have been out once in six days and almost fell. Had Dh not been with me, I would have gone down. Not acceptable! Cbd oil seems to work well on the nausea.
Thanks,
Claudia
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Big- I get dizzy spells too. Some days I don’t get them and others are terrible. I’m on 1500 twice a day. I don’t drive anymore. Too afraid I’ll get dizzy. I went into the grocery store and my son was waiting in the car for me. I got so dizzy I didn’t think I was going to make it to the car. Scared me.
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i only got dizzy one day, onc told me to go to er.........did so and it turned out i was deyhydrated, they pumped me up with saline and all was fine
Now i remember to drink lots of liquid, check yourself!
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I forget if I posted this here or on the Inspire site. But for those of you who are dizzy, have your BP checked. I was on BP meds, but Xeloda evened it out. I didn't know that and continued to take my BP meds, until my wrist monitor showed 69/43.
No wonder I was dizzy.
As far as chemo brain, I have always read that it affects the ability to know nouns, like a book or a door. Forgetfulness seems to come to all of us as we age.
I use tons of post-it notes.
Yes Goldie, Poziotinib put me in remission in only 8 days. So that will be my go-to chemo, but at half the dose next time I need it.
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Denny, what were the SE's of that drug?
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Thank you for your help with this question! I will take my bp especially since I am on bp meds. I am all too familiar with dehydration symptoms and I don't believe that is the cause.
What about the off week? Will the nausea and headaches stop?
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One more question. When do you take the evening dose? With dinner or right before bedtime?
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Hi Everyone, I have a question I hope you all can help me with. I’ve been on X, 2000 a day 7/7, along with Tykerb for about 3 months. I have my SE’s under control, QOL great, my scans show reduction & stabilin my mets, (brain, bone, lung (gone!) lymphatic (super clavicle). The problem is my CA27/29, going from a “low” of 640 to 1200. My onc thinks it’s a precursor to the Xeloda failing but that we should stick with it until my scans show progression. My ? Is, should I increase my dose and/or schedule?
Thank you guys, I don’t post much but I read a lot & really appreciate your wisdom.
Les
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today is a day Tykerb and Xeloda diarrhea has kept me housebound. I just feel ugh. Hate these days. I’m breaking out the Imodium. I should have predicted as I’m on day 9 of my 14 day cycle. Days 8-10 usually suck for me.
Thanks for the vent
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To answer your question, intothewoods, here is what happened to me with Xeloda. My CA 27.29 had slowly, over about a year, risen from normal as anti-estrogens + targeted failed, and my scan eventually showed the progression. It was in the 160s when I started Xeloda. The first three days on it I had big liver pain as the tumors got bombed. There was a very dramatic and fast drop in the monthly TM measurement, which went to 130s, 60's, 20s (normal range), and down to low normal in teens and single digits where it has remained. So I call that NEAD. But you know what, I read someone's post the other day, where she said she has been living with mbc for many years but has never been NED. So even though NED seems like the holy grail, and I won't say it doesn't make me feel hopeful, you could say that what matters most is that we are still here and doing pretty well.
Denny, yes, definite loss of nouns. It hurts because I'm a real word person. But dh and I had a good chuckle at Goldie's scarecrow photo.
Bigbhome, I split my evening meal into first and second dinner, like a hobbit, so I can take the pills around 8:30 pm and 9:30 am.
Lester, I think I would ask about trying 14/7 at 2000 for a couple more cycles. My TMs precede scans in showing progression. It took some time to see that's how it works in my case.
That D sounds miserable leftfoot. Now that you know, hopefully you can stay ahead of it with the right meds.
I see that the ciclopirox olamine cream that has helped Dianarose's feet is a broad-spectrum anti-fungal. So there is a reminder to watch out for secondary problems/infections that may take hold on damaged skin. I'm so glad it helped you, Dianarose. And extra points awarded to your doctor for thinking of it.
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Hi all, 10 days on my Xeloda & Navelbine regime & so far so good. Hands & feet are sensitive in hot water, but its the middle of winter here & I'm not giving up my hot showers! Doc gave me "oncology cream" which is produced here in South Africa - smells just like Fissan Paste baby bum cream - which I put on after my shower.
No dizziness, but reading Proudtospin's post - I have noticed I am very thirsty. I'm used to drinking two litres or more of water on an average day, but I am drinking even more now.
My hair is falling out though - it started thinning in my last 2 months of carboplatin/gemzar and now I dread washing my hair as I have to throw away a clump of hair each time. Not nearly as bad AC chemo - but enough to make me self-conscious of how thin my hair is. I wont have blood tests till late July, but feeling good so hoping that this regime is working for me - then thin hair is a small price to pay.
~K.
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Leftfoot, . So sorry about the D. Hope today is better for you. I had a vent day yesterday too. Actually I had a good cry which I hadn't had in a long, long long time. Not sure exactly what it was all about though
Shetland thank you for your words. You are so right. I am here and doing very well. My SE's are very tolerable. Minor soreness and peeling in my feet, numb fingers in the am, lack of appetit and food still doesn't taste rightand fatigue especially after one or two busy days. I am very lucky in many ways. I lost most of my hair with Taxotere but it is slowly growing back and while it's very thin it's enough for me to feel comfortable going out wtthout a wig or hat. This development is especially awesome since one of the many things I have to be grateful for is our river cruise in two weeks. Going on a 10 night cruise along the Rhine and Moselle Rivers with a two extra nights in Amsterdam and I am not taking a wig!
Many thanks and love to all you ladies who share your thoughts, expereiences and wisdom for the benefit of all.
Lisa
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into the woods,
They sell a clip on hair piece called a topper that you might consider. Have your hairdresser cut it to blend with your style. Check it out on YouTube.
♥️Lester
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Shetland- I’m not sure if I had athletes feet and that’s why the cream worked or maybe the cream happened to work on hand and foot syndrome. Either way I’m thankful it worked.
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Goldie-On Poziotinib I had severe mouth sores and thrush. Rash from my nose down to cover my lower face and entire scalp. That rash turned into blisters.
The scalp think drove me nuts-when it first stated it was horribly itchy and I was rubbing ice packs on my head.
If you google Poziotinib and Breast Cancer, you will see that it is being tried in 4 states. I am close to Pittsburgh, PA, so that is why I got it.
Karz-I lost a lot of hair for the first 4 or 5 cycles of Xeloda. Then it stopped and is growing back in quickly. I am on 2,000 a day at 7/7.
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Ladies,
Has anyone else experienced weird hand (finger) cramps while on Xeloda? Sometimes I’ll be sitting here and out of nowhere my hand will get stuck in a position and the fingers curl up. It doesn’t last long, but is also not very comfortable when it happens. Overall, not a big complaint for me, as this drug is the best so far that works. Just wondering if anyone else has experienced this
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I am having terrible heartburn with X. My normal stomach meds are no longer working and Tums are a joke. If you have had this problem and been able to solve it, what did you use to fix it?
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Xeloda is notorious for this. Get a perscription from your MO. Be aware that things like tums and antacids make Xeloda less efficient if you take them at the same time. Your MO might need to alter your dosage or make sure you take them at least 1 hour prior or after the Xeloda.
I know this because I talked to the specialty oncology pharmacist about it.
All that said- get the perscription. It’s a life saver and makes a huge difference.
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I did call my dr at SCCA today and he wants me to use Omeprazole 40 mg on an empty stomach. But I have to take X with food, so it will be a timing game. Hopefully it works. Last cycle I bent over and had stomach acid run out my nose. Not the first time it's happened but I sure want it to be the last.
This is keeping me from sleeping well, too, so I hope it gets fixed soon. I knew about the antacid and X compatibility issue, so I was despairing that there would be a fix.
Thank you
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booboo-I had the finger cramping just like that when I was on Kadcyla, but not now that I am on Xeloda.
My GERD has gotten worse on Xeloda, and my specialty pharmacist said to take Gaviscon, and it really does help. I also now sleep on 2 pillow to keep my head up.
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Question...
I just finished my 8th cycle of 2,000 daily at 7/7. When I started I was 2,000 at 14/7 but I was decreased when the HFS was pretty bad, along with the extreme burning of the soles of my feet. My feet have been tender all along, but not too bad. But once again they are burning a lot. Is it typical for the HFS to flare up again even though I have had 8 cycles?
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