All about Xeloda
Comments
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gigi-29 months on X-that is fabulous. I hope we all can have that same luck. While there are many SEs and they vary amongst us it is a really "do-able" chemo.
We scan every 3 months and mine is coming up on Friday the 13th. I was originally dxed on a Fri/13 also.Hoping it isn't a bad omen. My April scan wasn't fabulous but it wasn't horrible either. A ittle shrinking and a little growing and a possible new tumor-we talked hard about it and decided to stay for 3 more months to see what would happen. I started X and Tykerb back in Jan_I think I have done 7 cycles. I want to stay with it as long as I can because of being able to work. The onc visit is the following Tues-we have already discussed where we will go next if we don't get good results. As I am Her2 we will probaby go with the new drug Pertuzumaub-approved by the FDA June 6. What I hate is that it is paired with a Taxol-guess that means my hair will go. But I am thinking positive.
My biggest problems come in the off week but I am able to bounce back each time so far. Hands became way better after winter got over but both my hands and feet are a dark color-they do look dirty. I have to get see the dang podiatrist next week because I have some ingrown nails-something I never had triuble with before starting this. wait til he sees the surgeries I have tried trying to fix it myself. 1 is getting too painful to wait any longer. My best friend while doing the X is Ritalin. I take a child size dose and it lets me function as if normal. Otherwise after work I am done for the day. I don't take it every day. Mostly if I know I have to do things or be somewhere after work. He tried the adult size pill and I didn't sleep for 2 days. The onc suggested it but I haven't really seen others post about taking it. I do a very physical job in a hot factory and it kicks everyones butt-much less someone doing chemo. If fatigue is your problem ask about it.
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braids3.....not sure if I've heard of the henna treatment. Can you elaborate? Is it something you get at the pharmacy? I also wanted to add that it soundds like the treatment is working. GOOD NEWS!!! Time to celebrate!
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Just wanted to chime in about the darkening of the skin. I went to the dentist and he almost fainted when he saw the inside of my mouth. It is totally freckled. I had to convince him that it was a SE. I told him at least it is on the inside of my mouth and not on my face or else I would look like a leper.
I also have a large dark spot on the side of my nose. Tried that age spot stuff to lighten it but to no avail.
These are minor things. Not complaining. Just giving info that dark spots are a "normal" side effect. I keep telling myself that things could be worse and a few freckles ain't going kill me. LOL
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I wondering if swimming in a pool w chlorine would be a problem for our hands/feet? I know we're supposed to avoid chemicals and wouldn't that be harsh?
I'm going to ask my gp about Ritalin or medications like it. Some days I feel as if I might as well have stayed in bed.
Frapp - I hear ya on the bloating/wind. I also haven't gained wt, but can't close my pants. My friends recommend button extenders. lol I might look into that.
My feet are definitely more purple than my hands so that's sort of a positive. Easier to hide my feet than my hands.
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Just checking. Can't figure out why my diagnosis does not show up when I post on here. Never mind I fixed it.
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I have a new "freckle" on the bridge of my nose. Didn't equate it to the xeloda till just now. I'm trying to cut down on gluten to see if the helps with the bloating.
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I got a couple of those "freckles" -- on the bottom of one foot and on one finger....there may be more, but those are the larger, more noticiable ones. Odd see I thought, but could be worse I guess.
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I had forgotten about those little dark spots..or freckles. I got them only on my hands and fingers. They went away though....I just checked!
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Hey Lynn, glad to see you still stoping in. I hope your new treatment plan treats you as well as the xeloda. Take lots of notes cause I'll probably be right behind you.
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I went to support group today and the other woman on Xeloda wasn't there, but others who had seen her said her hands/feet and nails are black from X. Her dose was originally 4000mg, reduced to 3500mg. I think she's been on it about a week longer than I have, 14/7 schedule. She about my size, maybe a tad bigger. I can't believe her dr let the HFS get that bad. Also, some of the women who exercise with her say she's still doing the extra intense dance/exercise class, two back to back. Then, she pays for it later. I can't imagine why she would do this to herself.
I woke up this morning and my feet felt like they were on fire. This is my first day of my "off" week. I finally tried the refrigerated gel insoles and they really helped. I'm impressed. I've been using them all day and they really take the burning away. I hope this is the worst of it, but at least the ice packs help in case it isn't. And, my toes are a lovely shade of purple. Good thing I like purple, could be a worse color, I suppose. lol
Have a nice weekend all!
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Cynthia
My husband had stage 4 colon cancer in 2009. He was on xeloda for quite some time. At one point, his doc ' accidentally' had him on a round for three weeks straight. He was a mess,and could barely lift his head from the couch. It was all I could do to keep him from the hospital..constant Powerade Zero against his will, force feeding, etc ..
In any case, I never saw feet so purple in my life. They are completly fine now- 100%.
I just wanted of offer a little encouragement.
Best wishes to all!
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Everytime there is a holiday, my birthday, anniversary I am on my pills. It never fails. Can I have one drink? I never drink while on my pills. I am scared to death to do it but I wonder if any of you ladies drink while taking Xeloda.
Everyone is different, but my husband drank occsssionally while on X.
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Purple: No, I do not drink while on Xeloda or at any other time since first starting cancer treatments. I figure why put more strain on my liver than it already has to deal with. Chocolate is my drug of choice.
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Hi Seamstress.
I was replying to TXGigi who asked. I should have been specific in my reply .
Chocolate is a heavenly intoxicator
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I drink while on Xeloda - not every day and never more than one or two. I started my second cycle on Tuesday and we were at a Mexican restaurant. You can be sure I had one really good margarita. We drank mimosas at our neighborhood brunch on the 4th of July. I always follow up with plenty of non-alcoholic beverages and I don't drink on an empty stomach.
My MO told me I had no restrictions, and I took her at her word.
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Purple...I'm sorry for butting into your conversation with someone else. You said you wondered if any of us ladies drink while on Xeloda....so I took that as a question. Sorry! Chemobrain, I suppose.
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No seamstress
It's okay. It's understandable actually. I framed my post by writing the other persons question first ( followed by my reply) Confusing.
~Peace!
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Thanks for the info purple32. And, your name is so appropriate when talking abt purple feet.
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My feet are much better today! How strange is that? They went from the worst ever, to better than I remember in a long time. I wonder if the ice packs not only sooth, but heal. It's all that makes sense. I'm just so relieved and want to run around getting stuff done, but I'm going to go slowly so as not to irritate my happy feet.
My hands, on the other hand, are a little worse. So, it seems that my hands are a little behind my feet with the HFS. Still not too bad, just more annoying. Being careful with them.
I talked with my friend from the support group and she says she's still dancing on her feet because her dr's nurse tells her she should be exercising so many hours a week. I guess I'm just cranky because I would have told the nurse to stuff it. The horse is out of the barn and exercise on damaged feet isn't going to put it back. Just sayin'. She also said her oncs told her they start their patients out on the max dose possible and reduce it as necessary to deal with side effects. So much for using the scientific formula based on body surface area. They finally have her down to 3000 mg from 4000 mg because she was dealing with terrible side effects. I'm so glad I didn't have to go through that. Dealing with the side effects from the appropriate dose for me has been challenging enough.
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Its my week off and the nausea has been pretty bad hsf not as bad as some of u have but i'm on such a low dose will see next week when i go up a gram due to being off taxol. i just had an acupuncture treatment and its really helping with the nausea i actually want to eat something. i'm trying to deal with scan anxiety again MRI Monday.just got ct scan results Thurs.so here we go again at least with this one i'll know Monday afternoon cause if it shows anything they call me the same day to sced app with the neurosurgeon and radonc here's to good news for all. has anyone else tried henna it seems to help me with the heat and throbbing
love and blessings
Chris
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LOL Cynthia !0
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I am on round 7 (I think) of Vit X and not many se still. Had a scan three weeks ago and it shows no shrinking of my 3 spots and one even grew a bit. Now the last chemo, in 2 doses, my tumors had shrunk significantly! So I am even wondering if this is working. I am a bit scared that this is not working and I will have to change. How long is too long to wait for a response??? I am on the 14/7 schedule. Maybe onc will up my dosage.
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Hello X-Divas!
An interesting thing has occured - the side effects from Xeloda are lessening! 10 months on this treatment and the neuropathy is starting to minimize. I don't know what to attribute this to - acupuncture is working; my lotion obsession is managing the hands and feet peeling; Qi gong is keeping the good Chi flowing; reducing the stress I can control is so truly effective; eating differently in more fruit and veggies and trying to reduce my gluten intake is helping the aches and pains; and the supplements - well, I think I may have found the right combination. Whatever is creating this change, it has made the Xeloda actually tolerable!
Since bone mets is my primary location of the spread, I have focused the supplements on that. Chia seeds are an excellent gluten-free source of fiber (less joint pain and a much happier digestive trract) and they have cancer-killing properties. Horsetail is an enhancing bone healing supplement - rapidl bone healing is the primary quality of this supplement and as healing bones hurt - it has to be doing something since all my bones have begun to ache in the past two weeks. I am actually looking forward to my next scans on the 17th - if there is healing in the bones going on after a full month of the horsetail, I will shouting from all the rooftops for anyone that has bone mets - GET HORSETAIL!!!!! Since the lessening of the side effects seems to coinside with adding these two items to my regimen - along with continuing acupuncture and practice of Qi gong - I am of the opinion that we CAN gain control of some of the more annoying side effects - particularly the hand/foot syndrome. As always, I have run everything by the onc before proceeding - the horsetail has other properties too and thus far, no downside to taking it! I have stopped taking the calcium supplement but kept the magnesium and zinc - and have upped my intake of calcium-rich foods that are not dairy (I have maintained my normal consumption of dairy) since I discovered the risk of calcifications due to unabsorbed and unused calcium - brocolli has become my best friend along with garlic, lightly steamed to make it easier to digest and a very rich souce of easily absorbed calcium.
Just wanted to share what has been helping me...and I will be sure to let ya'll know if there is bone healing going on with the use of the horsetail!
X-Divas unite and we will get through this positive results and less side effects!
Hugs and love to all of you!
LowRider
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Chris - glad u found something to help w the nausea. Crossing my fingers your scans are all good!
lovinmomma - I have no idea how soon you should see a response. I know my support grp friend has been on X a little longer than I have and she says the tumor on her chest has shrunk to nothing, but she doesn't know if it's working on her liver mets yet. I have no idea what is typical, though, and I won't know for sure if I'm responding until Tues when I see my onc and find out my tm results. I hope it's working for you.
Lowrider - glad you're finding things that help with your side effects! Doesn't horsetail have diurectic actions, though? Hope you have good results with your next scans!
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Update - I start cycle 3 in the morning. My tumor markers have gone from 112 to 81. I have mets to bone. 1 on liver and 1 spot under arm. Sure hope when I get scan at cycle 5 it shows shrinkage. I feel pretty rotten on this chemo. Handling hand and foot but no energy and flu like. May have to ask for reduction in dose. I am on 3 pills twice a day. My onc, would like me to stay at this dose until scan. Happy for all of you handling it well. Thinking of you all.
Renee0 -
Renee what strength pills i'm moving up to 3 2x a day 2 500 and 1 300. i get the fatigue on my off week. my acupuncturist said it was my body detoxing.now it makes sense i just got my scan and get MRI Monday. i'm really hoping no more tumors in my brain good luck on the flu and energy hope it gets better love and blessings
Chris
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Chris, good luck with the MRI. I am taking 3,000 mg a day. 14 days on 7 off. My off week is the hardest. I need to try and exercise more to fight fatigue. Makes sense about detoxing.
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Has anyone had a high RDW blood test while on xeloda? Mine came back at 17.9. Any info would be appreciated.
Thanks
Renee0 -
Yes, Mine is at 19.8. It has always been aroun13 but last month jumped to 15.3 and just last week was at 19.8. I don't know what this means. From reading google it seems to have something to do with the maturity of the blood cells but that's all I know. My liver numbers have also slightly increased so maybe one has to do with the other? I'm on my 3rd round. Would also like to know what others have to say about this number.
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Frappe, same here liver numbers are in normal range but a little higher. Will let you know if I find anything out. Maybe someone else will know more.
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