All about Xeloda
Comments
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Stagefree, I had read that numb-chin syndrome and osteonecrosis of the jaw are caused by Zometa. Were you taking it?
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Stagefree-OMG 4.5 years that's pretty amazing! I hope your chin improves!
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Erbu, sorry your time on Xeloda seems to be ending, but 4.5 years is really inspiring! Hope the chin gets better quickly and the next drug is a butt kicker to your cancer!
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Ebr
Wow!!!! That's a long time on Xeloda-sorry you have to stop taking it now.
Whats your next treatment?
Babs
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Susan...I bought Natracure cold therapy socks on Amazon for $34.00. You put the gel liners in the freezer. They feel real good on my feet.
Giovanni, thanks for the ingredients. After this weekend, going to search for ingredients. I also want to thank you for being so supportive to your wife and all of us with your knowledge and kindness.
Stagefree - wow 4.5 years that is encouraging. So sorry you are moving on and hope your next treatment is success for another 5 years
Susan beautiful grandchild. Mine keep me going. I want to see my granddaughter get to age 13 to see how her dad will handle it. Happy dance on the good news. My score has also gone down, so Xeloda is working for me. However, after my scans on the 3rd may have to reduce from 8 pills as my hands are killing me. Scared to do so as but I have to use my hands. Hopefully I will keep with the downward trend.
Babs how are you doing on the reduced dose? Hopefully hands and feet have improved.
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Mediclids
Hands and feet are a tad better on the reduced dosage. I'm thinking that if my scans on 6/28 are good I might ask to take an extra week off I could use some relief🙏
Babs
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JFL, I don't have much as far as puffiness, but my eyes burn and water a lot! As well as the nose is drippy too.
Susan,you couldn't ask for better results. May Madame X and the 7/7 schedule work for you. And glad you have that new baby around.
LFF, I would consider taking the off, starting a few days before your trip. I find that on my week off, X is still in my system, and I don't start healing until about day 3 or 4. Then too, when I start back up, I'm still feeling good the 3-4 days into it. Just a thought.
Ebr, numb chin? First I've heard of that. You had a good run with X, perhaps a break and then go back on it?
Babs, I have taken extra time off a few times. My onc is ok with it. He pretty much lets me make the calls, depending on how I feel. That extra time off is a blessing for sure.
I'm hoping to be on X for a good while. My onc took one look at all my itchy rashes, legs, arms, chest, back, shoulders and then my hands and feet. And he says that it looks like X has run it's course and perhaps we should consider another option. I questioned him and on of my markers went from the 90's, down into the 70's. So he said if I want to stay on longer, that's fine with him.
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I too get the runny nose and gunk in my eyes!
Babs
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The runny nose is annoying enough, but what is up with sneezing at 5am? Especially early in the cycle? I can sleep through almost anything, but sneezing is something else again. No wonder I need a nap most days! Sneezes mean I only get about 7 hrs of sleep per night.
*susan*
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hi all!
Hope you all have even longer time on it.. I don't know.. We'll decide for certain with MO in two weeks.. Yet it's probable I may move on to Navelbine (pill form 👍🏼) next.
I do take Zometa still and have checked with a dentist surgeon nothing's wrong yet - thank heavens- with a neurologist who didn't find anything like brain mets.. It's not a big problem for me as long as I still look beautiful😆
It has been proven some chemos keep working when you go back to them. MOs concern is my lungs and heart are tired on this drug.. We'll see. I may stay on it in the end..
Thanks for chiming in
Hugs
Ebru
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LFF I know how excited you must be to get a month off Xeloda! I am getting some time off soon to have a holiday abroad and I can't wait! I had a scan on Wednesday but won't find out the results until 15 June. I was feeling that Xeloda was working but the spectre of scanxiety has come and am worrying that it hasn't! And I have to hear the news from a new oncologist! Anyway what will be will be - let's hope it's good news. I feel better than I did in Jan when I had abad scan.
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lovetosing- if they haven't called yet then I'm thinking it's good news. Yay for vacations both from Xelida and of the travel typ
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LLF chemo break is good.. Enjoy 😊
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Thank you, gciriani, for the recipe for the hand/foot cream you made yourself. I just ordered the Antioxidant Complex T5 from the Herbarie website. After 1 year on generic form of Xeloda at 3500 mg 7/7 schedule, my hands & feet became so red and sore this last cycle. I'm thinking about taking another week off, as the HFS was terrible. Worst day was the 1st day off chemo (day 8) - I could barely walk. Amazing that the HFS was very tolerable the first 10+ months, but I guess now it has caught up to me. Has progressively gotten worse these past few cycles. This chemo still seems to be working based on TMs, so I would like to stay on it as long as possible!
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Southern,
My MO says that whenever my hands and feet get really bad I can take an extra week off. I'm also on a 7 on/7 off schedule normally. After that extra week off my hands and feet have a chance to heal. I think that if your hands and feet are really bad it's because there's too much Xeloda in your body. Your body is trying to get rid of the excess by secreting it through your sebaceous glands. Like any other kind of over dosing, that excess amount isn't helping, it's hurting. Just my belief, not from any kind of study.
Hugs, Susan
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SusaninSF, I like your oncologist!
I'm also on a 7/7 schedule with Xeloda and after being on the drug almost three years and suffering HFS for all this time he suggested I take one month off Xeloda to let my hands and feet heal.
I was shocked at his suggestion, but he said after being on Xeloda since August, 2013 taking a month off of it would be such a short chemo break it shouldn't cause a problem.
Well I've never dared take so much time off Xeloda but Oncologist's suggestion makes me feel a lot better about taking on occasional extra week Off if I need to.
Kessala
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It makes sense to take a break for someone who is stable (or NED). I hope to get to stable so that is an option for me at some point! For some reason, my hands and feet were really bad this round. I am at the end of my week off and resume Xeloda in 1.5 days but my hands keep getting worse. My biggest problem area between my thumb and forefinger has a thick, deep layer of broken skin which hurts to move my hand. I just hope it is attacking my liver mets just as hard!
I am curious to hear how people's bone mets have fared on Xeloda. Have you had good results? When I started, my bone mets were stable on hormone therapy/Ibrance but my liver mets were going haywire. I hope the Xeloda keeps my bone mets stable (in addition to whacking back the liver mets). My liver feels like it it shrinking. The pressure is gone although I do have periodic, mild pain. For the first time since dx in Dec 2014, I can stand up super straight with my stomach held in without spine, rib and/or liver pain. I am hoping that is a good sign. And hoping the liver pain is dying mets. I get a scan in a few weeks.0 -
JFL,
After 7 cycles of Xeloda, my bone mets appear to be at least stable with some reduction. My lymph/pleura mets have resolved completely. There is one new spot, where mets don't generally hang out, and the radiologist and oncologist don't think it is cancer, but will be watching this on my future scans.
For hand sores, I have had pretty good success with neosporin with flexible bandages for faster healing.
Hope this helps.
*susan*
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My hfs is really bad. I'm hoping to take extra time off after my scans the end of June if they're good. I started X on 1/1 and by 2/28 my mets decreased by 40% and bone mets were stable with necrosis. Hoping my next set of scans are equally as good!
Babs
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great news Susan! That's what I loved so much about X all along.. Pink yet big! Kills the c-buggers instantly. My TMs previously around 3000s back down to 20s in just a few months. So yes X is good!!!
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Hi Xeloda ladies;
It's good hear about so many good results about this medication. I'm scheduled to start taking Xeloda and I'm concerned about my quality of life with the HFS.
Is anyone exercise? Gain weight? Feeling not so good? Loosing hair or having hair tinning?
Cheers
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The Ziz- FYI I am exercising though due to the HFS I can't do it every day. For me the HFS is the worst part of being on X. But, I still work every day. We took a vacation while I was onX that involved a lot of sight seeing. I just planned my trip around my regimen. It's all doable!
The good part is that as of today (Had TM's taken this AM) my TM's have even dropped more.
My CA 15-3 (which is my bell weather) went from 46 last month to 32 today-within normal range and my CEA went from12.7 to 8.6-close to normal.
If you get similar results it will well be worth taking.
Babs
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Theziz, I still exercise and am hoping I can continue in the future. I started Xeloda 3 months ago. I run 4 miles 3 times a week. I wear super comfy running shoes and what my DH refers to as "avatar socks" - that have individual toe holes. These socks are cushiony and keep the toes from rubbing together which helps. I do have foot pain and HFS issues in general but running hasn't bothered me yet. The most painful for me is walking barefoot at home (I have no carpet). Work has been fine on my feet - I continue to wear heels as I did before most days but started wearing stockings to protect against friction. It can be challenging and uncomfortable to walk around a lot at work for a few days at the end of the cycle but right when it starts to get bad, the cycle is over and the healing begins. I have a desk job and can find a way to walk around less during those few challenging days.
Babs, I also posted in the liver mets forum but congrats on your tumor markers! Yay for X! Must make the horrible HFS feel worth the suffering. I hope you have a great scan and can take your desired X break.
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JFL it is so good to know that I can still excise, I love running it when I have conversations with myself and I just now started playing tennis.
Cheers
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Hi ladies,
Does Xeloda cause abdominal pain? How do I know if it's my liver mets or a side effect of the Xeloda? I guess that's what has me confused. I am so scared and hoping this Xeloda works. I just want to live a "normal" life a little bit longer, just give me maybe a few more months? I check my eyes every morning to see if they are yellow and my liver's failing. I feel like anything can happen to me now that I have liver mets.
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Hi cjanet,
I started Xeloda 10 days ago and have minimal side effects. I have a little bit of stomach distress, which causes a bit of abdominal discomfort. So far no hand or foot issues. My energy level is pretty good. After reading good outcomes with Xeloda, I am remaining hopeful. Hang in there!
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Cjanet, Xeloda can cause diarrhea or constipation, along with some cramping/bloating and related issues. You should be able to tell the difference from liver pain since it is in a different area than small and large intestines. The exception might be if someone had ascites, the lines may be blurred.
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Good luck to all the newbies on Xeloda. This chemo has been more manageable than the IV infusion ones for me.
cjanet, I'm not sure if Xeloda causes abdominal pain, but has definitely caused nausea and abdominal discomfort at times for me.
maryhh11, I didn't show any HFS symptoms for several months but it started to then get worse after 10-11 months on 7/7 schedule and is quite bad now after 1 year on Xeloda. I felt lucky that I didn't get it for so long, but I know that everyone is different and some may not get it at all. I know personally that I tend to get the uncommon side effects on various chemos and not the common ones. My oncologist and I usually joke how "unique" I am in this respect! You are correct that many of us have done quite well on Xeloda - so happy for that!
gciriani, I received the Antioxidant T5 today, so will use it tonight. I didn't realize it is in liquid form; I guess I was expecting it to be a powder. Praying it works for me.
theziz, my quality of life has been pretty good on Xeloda. I do get waves of nausea at times, which seems to have gotten less frequent over time. My nausea is actually worse on my off weeks of the 7/7 schedule. I have not gained weight on this chemo but my hair probably has thinned a bit on this (I have thin hair anyway so I can tell it seems to be a little thinner than before but no big hair loss.) I used to power-walk 3 times a week but have stopped this past month as my feet are too sore & red. Hoping to get back at it after my week Xeloda break.
Thanks to all for the encouragement re: additional break from Xeloda. Glad to hear that others have had additional time off from Xeloda and it helped their HFS. Take care all!
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SouthernSurvivor,
I mix the T5 antioxidant with a good quality cream, in proportion 1 to 6. The cream becomes more liquid, like a lotion. The T5 needs something to stay on the skin for a long time, to be able to scavenge the byproducts of Xeloda.
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gciriani,
Yes - thanks, I have mixed it with Aveeno Skin Relief Moisture Repair cream. I was just surprised when the Antioxidant T5 was liquid - wasn't expecting that. Looking forward to better skin soon. I'll update you with my results. Thanks again
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