All about Xeloda
Comments
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My dear Apple,
It must be great to be able to make music. Way to go
Since July 2, I've had two lovenox shots a day. I'm weaning them down as coumadin takes over. The actual stick isn't so bad because I have some numbish areas, but the medicine goes in a half inch or so and YOWWWWWWW. Only 2 more. Somebody say amen!0 -
Kathy: AMEN!! TWO to go!! Woo hooo!!!!
Apple: So glad to hear you're feeling great and back to playing again! Awesome!!
Suze: another example of how different we all are. You have dry eyes, and mine water all the time. I wake up in the morning and have all this "sleep" in the corners. And, when I saw the onc on Tuesday, he kept looking at my eyes saying they were red. I didn't think they that red. I had been working on the comptuer at work all day so I just figured that was it. He didn't give me anything for it so guess it's not anything to worry over too much. Sorry you're feeling dizzy. I was on Avastin last year, and I'm trying to remember if it made me dizzy or not, but my chemo brain has kicked in I guess....I'm not sure. And sorry about your white counts. Hope they don't go too low and you have to take the shots. That's one thing I have been very surprised about with this chemo -- my blood counts have been fine the entire time!! I mean, they are a little low, but not of the range. I'm grateful for that at least!
My update: In my search to find just the right cream/lotion, I am now trying Aquaphor. I used it during radiation and it worked well so thought I'd try it for the HFS - it says "healing" on the label. It seems to be working! I use Neosporin on the cracks/splits and really slather on the Aquaphor and then put on gloves and go to bed. This combo seems to be working! Yaay! Now I wish this numbness/tingling would go away. Does anyone know if it ever subsides with time, or does it just get worse?
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Lynn, Aquafor, eh? Everyone seems to have a different prefernece. You know I returend it when i saw how much petroleum in it but then I do find the vaseline settles down my feet enough to wear flip-flops in the summer So it must soothe eruptions.
now me:
ONE MORE SHOT TO GO
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K-Lo - Yay! One more shot!!
Lynn - Oh I'd give anything for watery eyes, lol. But then, I'm lucky to not have the HF symptoms. It's a trade off. I actually think the spacey feeling/headache is my blood pressure - it is starting to creep up (120/90 last time I checked), and since I've always been on the low side with my BP (105/70), I am pretty sure I'm feeling it. Have a call in to my MO just to check. I hope the Aquaphor works for you!!
Apple - that must have felt good to play again. I'm glad to hear you are back at it.
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Okay, saw my opthamologist today and asked about the dry eyes - and there is something he can do for me, yay! He gave me drops to try (yea, useless) but he said the next step is to block a duct in the bottom corner of the eye (by the nose) that is responsible for sucking up the excess moisture. He said it would increase the moisture in my eyes by up to 60%. It is a very easy, and painless, procedure, and can be semi-permanent (3-4 months) or permanent (until he removes the plug). Given I have 5 more rounds to go, I think I will go ahead with this. He doesn't like Restasis because he said it can lower your immunity, not good on chemo.
I'm starting to see potential HF symptoms. My fingers look like I've been in a pool for too long, all pruned. I'm going to wear gloves/cream tonight and hope it helps.
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Suzette, 5 more rounds? They know how long you'll be on xeloda?
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Suze: The Aquaphor does seem to be working. On Tuesday I had a new split appear, but today it is gone!! I'm glad you have options about the dry eye thing that is not too invasive. I hope it brings you great relief! Hate to say it, but yes, I think it is very early HFS. That is how mine started too -- looked like I'd been in the pool too long. Now though, they are all puffy - no wrinkles to be found. Odd huh?
When I went back in today for more bloodwork, I hoped to run into my onc, but I didn't. I wanted to show him that the spot he saw on Tuesdy is not there now. He looked so confused when I told him that the se's are not getting worse - that they more come and go. I wanted more show-n-tell!!
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K-lo - I'm not Stage IV, but very close with progression to my supra nodes after surgery and during rads. Unfortunately, I am TN and apparently developed chemo resistance when doing Taxol and Carbo pre-surgery. So far my scans have been clear, so we are planning on a total of 8 rounds, and if still clear, I'll move to Avastin alone. My MO and I have talked, it is probably more "when" than "if" I have a recurrence, but we are trying everything we can in the hopes of buying me some time cancer-free. I hope it is ok if I continue to post, there aren't many women on Xeloda who can relate.
Lynn - I was afraid of that with the hands, sigh. I'll try and be proactive. Sorry you didn't see your onc! These SEs are definitely come and go, don't let him tell you otherwise, lol!0 -
Suze, it's a tiny little clear tube like thing that they put in the duct and it does work. I had it done before and you feel it maybe the lst day or so and then you just get used to it. I have not had any changes in my eyes due to the herceptin/Xeloda combo. When I saw the ophthalmic surgeon and also the cataract surgeon Monday, both said the problem was my lashes again which continue to grow inward and if they aren't removed scratch my cornea....they removed 9 on the eye that I was having a lot of problems with distance and I think three from the other eye. If I want this corrected permanently I need to have surgery on the lid so the eyelashes won't grow there......since I am on warfarin and as I told the doctor I really have no idea how long I am going to live, I do not want to have this done and am just going to continue to have my eyelashes plucked every three or four weeks. The reason the are messed up is from when they fell out because of abraxane.
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I'll say goodbye to Love...enox.
NO MORE SHOTS. NO MORE SHOTS
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Marybe: I'm sorry to hear about your lashes. I had Abaxane last year, and mine grew back in normally - thankfully! Ouchie....pulling them out! But, better than surgery! Can you use an eyelash curler to maybe direct them away from your eye?
Kathy: woo hoooooooo!!! No more shots!!
Today's update for me: So this morning I'm putting on my shoes to go to work. I check the bottom of my feet every morning to see how they are doing. I noticed what looked like a callus on the ball of my left foot. I rubbed it, and it "came loose" and looked like a blister. Touching it again ripped it open and I had all this skin just hanging there (I know..ewwwww!) What came off easily, I GENTLY pulled off, but had to leave the rest becuase I was afraid of making it worse. I put some neosporin and lotion on it and I'm hoping for the best -- will check again when I get home. Just odd I guess...doesn't hurt or anything. Weird!
I should hear from the onc's office today about the potassium level re-check. I hope hope hope it was just a fluke on the test. I can't deal with any more "issues" right now.
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Hey, Lynn, I had a few of those random loose callouses and feared the beignning of an unstoppable thing, like pulling a thread in a sweater!
BTW did I tell yall, I have NO MORE SHOTS?
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Hey, ladies. Hope everyone is doing well -- trying to keep up with everyone's news.
K-Lo - Yay, no more shots!
Lynn - glad to hear the SE's seem to be more manageable at your lower dose.
Marybe - I had the same issue with my lashes after Taxotere in my first go round with this stupid disease. They eventually grew in normal. How are you doing with SE's - any crop up?
Suze - 5 rounds in, 3 to go! Hang in there.
I am halfway through round 3. Still no real problems with HFS. No peeling, cracking or pain, just a little tingly in my toes and fingers every once in awhile. Finally got the right mix on the nausea/turns out it was mainly reflux - Protonix once a day is doing the trick. No more constipation from Zofran for me! Some "other" issues to the opposite extreme and some headaches periodically, but mostly - just so damn tired all the time. Oh well, plan is one more round after this (total of 4) and if scans clear and TM's still normal - switching to Femara alone for as long as I can!
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Marybe - thank you for the info on the eye duct "thing" - it sounds like it could be very helpful. That must have been painful having your lashes grow back that way - ouch! And then to have to pluck them.
Lynn - okay, ewwwwww (lol). I'm noticing some increasing dry skin on my feet, but nothing too bad yet. My fingers are tingly and a little red, but slathering on the bag balm and using gloves really helped. I'm getting on the recumbant bike this afternoon, so I'll let you know how well it works with my feet.
K-Lo - No more shots! No more shots! Yay!
Mustang - I'm actually in round 3, so 5 more to go - I prefer your way!!
This round seems to be treating me kinder with fatigue and headaches, but the HF stuff seems to be ramping up. My BP is becoming a problem thanks to the Avastin, so I'm more dealing with that. I'll probably end up on a beta-blocker - but I'm still borderline according to the guidelines, so just have to wait. I seem to be pretty sensitive to higher BP, I'm used to being in the 100/70 range, and I'm around 120/90, and feeling it. Not related to the Xeloda - but crappy.
Battening down the hatches for the storm - I'm in a heavy rain and moderate wind area, so just getting ready. Hope everyone is doing well and stays dry!
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Mustang, your lashes eventually went back to normal? I would be overjoyed if that happened, but since it has been over two years that I quit abraxane I don't hold much hope for that happening. It actually does not even hurt any longer when they pluck them....the dr told me there is a lot of scar tissue there so I am thinking that is why the plucking doesn't hurt. It's still difficult for me not to blink or flinch when I see those little forceps coming toward my eyeball.
K_Lo.....Did you say NO MORE SHOTS!!!!
Re do I have SEs yet?....I am not sure as I just came in from working in the yard and should not admit it, but did not have the garden gloves on. This morning my fingers looked like there was too much skin, it was sort of bunched up and now although not beet red, the fingers are tingling, sort of stingy. Man, I hope this is not the start of something. If it is, I see the PA next Wed. and will stay on the regime if I it doesn't get really bad and then when I see her will ask if I can switch to one week on, one week off. Feet feel fine.
Lynn, Did it hurt when that skin came off? Are you able to walk ok and wear shoes.
You know when you stop to think about it, the stuff they give us to save our lives could almost be compared to torture they would inflict on prisoners of war or something they would use to try to get us "to talk" or "fess up to some crime" . Nails falling off, blistering hands and feet, numbness to the point where it hurts. But we gotta do what we gotta do I guess.
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Marybe: Yes, for about two years after Taxotere, my optometrist (sp), would pull the random lashes that were growing down right into my eyeball socket when I went in for eye exams or if one was bothering me -- I couldn't stand using the tweezers at home - I was convinced I would poke my eye out! Anyway, he would leave the ones that were growing normally and eventually, they just filled in and stopped growing all bizarro. Probably a good 2 1/2 years from chemo. I say, have hope - it still may happen!!
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Marybe: No, it didn't hurt when the majority of it came off. I tugged a little at what was left and that hurt, so I stopped. I looked at it again at lunch and there is still loose skin -- I'm not sure what to do about it. Leave it alone, try to gently cut off the part that is hanging?
I can wear shoes, but I'm ready to get home and take them off! I can definitely tell a difference in my 2 feet - that one is much more tender feeling.
I'm STILL waiting on the doctor's office to call me back about the potassium thing. I'm going to try my best to remember to ask them about this too.
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Just heard back from my doctor's office about the potassium levels. They are back to 4.1 now (normal) so all is well. Yaay!
I also asked about my foot and she said not to pick at it or pull the skin off. Just keep it moisturized and most likely the rest will fall off on its own. Yuck!!!! But glad that's all I need to do.
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All more better! Normal k+ (potassium). :^)
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Maybe if you leave it alone it will sort of dry up and fall off on it's own like when you get a sunburn....but I certainly never could resist peeling the skin off back in the old days when I worshiped the sun. I still like getting tan, but don't overdo it.
Mustang. Wow, that gives me hope. The ophthalmologist is pushing the surgery, says it would be the only way to do a permanent fix, but maybe I will hold off and wait and see how they are growing next year. The part about having tissue grafted on there from the inside of the mouth was a real turn-off for me because I can just imagine how much that hurts.....plus he said it would stay pink. If my hair would fall out again which I am sure it will sooner or later since it's treatments from now on for me, I would look like a real alien with pink eyelids!!
K-Lo....Are you missing those shots yet?!
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Just letting you know that I am NOT taking shots tonight. ;p~~~~~
So, Lynn, they actually said, "don't pick at it" like your mom!
And Mary, your mom might say, you'll put your eye out! Gross.
Have a great weekend!0 -
Hello Everybody,
I just got back from a 12 day trip to Argentina!! It was really fun. So far so good on Xeloda. When I read what some of you are going through I realize how fortunate I am. I am in the middle of my fourth cycle. ( two weeks on and one week off) and as yet no really bad side effects. No sign of HFS and since no hint of it I have to confess I have not been lotioning the hands and feet at all the last month approxoimately. And they are still ok. I have had some problems with the Big D but my onc told me to use Immodium and I find that does work pretty well for me. I do have fatigue. I get really tired and have like no real energy. On our trip there were quite a few times I had to beg off and go lie down, but it was still worth it! So I guess the fatigue is the worst side effect for me but
in comparison to Taxotere, this Xeloda (at least SO FAR) has been a walk in the park for me.
It always amazes me how very individual the side effects are for all these chemo drugs. What is hell for someone can be not too bad for someone else. So weird.
Marybe: I cringed when I read your post about the eye lashes!! Omigod. Sounds really awful. I am so sorry you have that to contend with. I do so hope the Xeloda will be easy on you.
K-Lo: No more shots!!! alright!
Lynn: Good luck with that foot. I do hope it wont get any worse.
Suze: Like Marybe I also have the plugs in my eyes for dry eye. They work very well for me too. Big improvement.
Well, thats all from this Xeloda Diva tonight. Hoping all our sisters on the east coast will be safe this week end and will not suffer any loss or damage from this hurricane.
Judie0 -
Welcome back, Judie. I mean, Hola! You did it! Xeloda may be our friend. Two weeks on and no nasty SE's, that's sweet.
I feel like a druggie, but have y'all tried Ritalin? It doesn't make me feel speedy at all, just normal so that I can have a more productive day. Still need naps and go to bed by 9pm. The Supportive Care doc ordered it. I asked, "should I try talking half?". She said, "I gave you a little old lady dose". So, if you find yourself in bed more than out, consider asking. I try to get exercise and run errands during the 4 hours that I feel normal.
Hurricane downgraded but all it takes is flooding to mess up some neighborhoods. They may be better prepared on the east coast for harsh weather.
Love,
Kathy0 -
I hear ya, Kathy. Not on the ritalin - haven't tried that, but I feel like I take so many pills every day, I'm one pill away from skid row!
Anyone ever tempted to just skip a day? I have been so tired and I've slept so much this week that I am so stiff and sore from just being in bed. Taking the chemo at home, it's awful tempting just to skip. It is 9:44 and I haven't taken my morning dose...just want to be awake today - I'd like to go out tonight. We are having our town festival and a band I like is playing at 9pm. I haven't stayed up much past nine in months! I know I will take it, but it is awful tempting. This is day 8 of cycle three - I keep reminding myself, just 6 more days and I get the lovely week off.
Have a great weekend everyone.
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I have skipped doses in the past. Been on Xeloda 20 months. I have always taken my morning dose but sometimes when night time comes around I fall asleep, wake up and say screw it and go back to sleep. When I am feeling extremely tired and fatigued I have a hard time swallowing something that is going to make me feel worse.
I am on 7 days and off 7 days, During that 7 day period I might skip one night time dose. I see no change in my status. Thank God I remain stable.
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Thanks TXGigi. I ended up taking the morning dose, but just may skip tonight. We shall see how I feel at dinner time! I am planning to take a little nap so I can go out tonight - excited to hang out with my hubby and some friends. Xeloda be damned!! I'm going!
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I don't know how you take your Xeloda but the pharmacy called me when I first started taking the drug and told me to take at 12 hour intervals which causes problems. If I take my morning dose late, around 10 that means I have to wait until 10 pm to take the second dose. I am ready for bed by 8!
How do you take yours? Do you wait twelve hours?
Have a great time tonight! I am here laying on my butt watching the Weather Channel.
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Thanks! I plan on it!
I usually take it much earlier, but have never quite made it a full 12 hours in between although they did tell me that, too. I typically take the first dose at 8 and second one around 6:30. My onc felt that was okay. Today, as I took it at 10, I will probably just go ahead and skip tonight and start earlier tomorrow.
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PLEASE I am not encouraging you to skip a dose. Just wanted to say that I have skipped a dose in the past. Not frequently but I have done it. Now that you tell me how you take your doses I am encouraged that I don't have to wait 12 hours.
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No worries - I know you aren't encouraging me to do that! I promise!!
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