All about Xeloda
Comments
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spoke with the dr. and told me to go off the Xeloda until I see him on the 27th to let the SE's clear up...am so happy....
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Livingit - Thanks so much for setting up the calendar, what a great idea. I will be praying that you have great results and just keep that beautiful smile on your face and your chin up, that is easier said than done but somehow a smile always makes me feel better no matter what. I got my first day of X out of the way and did not turn into a pumpkin
, my hands did not instantly turn red, I did not get diahrrea and I still had my hair when I woke up 
this morning, I don't know what I was so anxious for, I guess I just kept thinking back 18 years and how it made me sick but this will be much better I know and now that I have the first day out of the way I am no longer anxious, now how dumb is that? We are so close to starting dates it will be interesting to see how we compare as the days go on. Are you on a 14 day cycle or 7. I am on the 7 day cycle. I am thinking good thoughts about your scan and Lynns and waiting to hear the good newsMarybe - That is good to know about the creams vs lotions. I bought some Vanicream at the recommendation of the pharmacist, it is what they use to compound with for prescriptions, because 99% of the people are not allergic to it. I read someone mentioned Aquaphor and it is suppose to be good but I am allergic to it so can not use that. I will keep the hydrocortisone cream in mind if I should need to use it along with other stuff.
K-Lo - Thanks for the address for the gloves, I was wondering where to get those. I will have to get them ordered.
Good luck to all of you with your scans. Thanks to all of you for sharing the information you have gathered for us "newbies", nothing is better advice than from someone that has experienced it.
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Hey divas.
LIving it - awesome idea on the calendar. I added my scan info on the 27th. Two weeks from today - hope your's went well - crossing all fingers for good results.
Blondie - glad you are getting a treatment break - hope the SE's clear up for you.
Sueper13 - Good luck with the resection!
Lynn - Have you gotten those results yet? Please update when you can!
Everyone else - hang in there thru the scan frenzy. Hoping we all get good news this round.
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You can get the gloves at some of the smaller pharmacies...especially if they carry any hospital supplies. I can not add any scan dates to the calendar because I have no idea when we will be doing them....am thinking maybe Oct., but at this point I don't even want to know what is going on....lst time I have really even been like that since I am normally asking when we will do tests, but this time I would just rather not know. I am sure two cycles is too soon anyway and that is all I have done.
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Yay Blondie!
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Enjoy the BREAK, blondie!! Much love to you.
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Sueopp: Thanks for the "easy there" about SE's so far nothing worse than fatigue.
Mustang: Im glad you are into the calendar idea. I think it will be fun to know when everybody is having scans. If it is popular we can post it on its own thread so everybody who wants to can join in the fun. (reminds me of how facebook tells you when its someones birthday. Very cool)
Scans today: Yep, did have scans today, but the machine was not processing the images so I will have to wait for results after all. Ha ha me. I had scan huberus, I know.
So the scheduler, Jan, gave me the next available appointment which is Thursday this week and I asked If I could pick up a copy of the report tomorrow so I didn't have to wait. She said that my onc would be glad to call me as soon as he has the results in tomorrow. Goooood Doctor, Gooood Boy!
So, we shall see. I am braced for all He*l to have broken loose... Not anxious anymore though. Go figure.
Lynn1:
What news?
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Zoh, aren't your scans early for the new chemo?
Added question: Is anyone dropping things/clumsy? It's similar to when I had neuropathy w Abraxane I have a little hydrocodone in the system, take Ativan at night only. Feel alert but it's always "CRASH" in the kitchen.0 -
Hi Divas! So you saw my news...I'm just so happy my face hurts from smiling so much! I'm very encouraged by the results - especially since it was only after 3 cycles (9 weeks)!! I just hope it continues!! He also is giving me an extra break to let my poor sore peeling feet heal some before we start again. I also said I wanted to get back on my Friday schedule so he adjusted that too. I will see him again on the 23rd to get my next cycle of pills. Ahhh, what a nice break this will be. I hope by then I'm good to go at it again for several more cycles!!! Thanks to each of you for your support as I waited for these results! You are awesome!!
Livingit: Hope you get your scan results soon. Thanks for setting up the calendar. I'll add mine as soon as the next ones are scheduled.
As for the pill sorter thing, I've decided to go get another one so I can sort both weeks at one time and I want the kind that has separate compartments for breakfast, lunch, dinner. This way hopefully I won't miss any and I'll know in advance if they have given me the correct number of pills.
Marybe:Thanks for the tip on the hydrocortisone cream. Will get some of that. Do you have a brand you recommend? Also, I was very surprised when I asked the onc yesterday about how to best treat my feet and he said the only real treatment is to hold the pills. I told him about the bag balm really helping and he said he was surprised to hear that.
Sue: Thanks for explaining your surgery. I hope it goes well for you. Let us know when it has been scheduled.
Blondie: Sooo happy he has given you such a nice long break. I really hope you will be doing much better by then!!
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Thanks guys, my eyes keep running it seems to be taking forever to get this out of my system, haven't taken it since Friday....am going to Walgreens need udderly smooth and can't find it anywhere and antidiarreah med, hemroids (sp) are really hurting......feel like I am falling apart....hate this stupid cancer!!!
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Blondie,
I am sorry you are having a terrible horrible moment or few minutes or day right now and I wish I could make it different or better. One of the ladies I did chemo with in 08 said that we tend to view our treatment as climbing or going up over a mountain and we expect it to be harder in the beginning and we think when we are halfway or a certain distance then we will be over the top and it will start to get easier...and that we have that expectation without even knowing it and so sometimes when it doesn't get easier we sort of explode with hurt and disappointment and sorrow and then we can get back to climbing because it is always going to be UP that we have to push against, and it is always good to let your bc sisters know when the above is happening to you because at least we know how it feels and that it helps a little bit to let it out. Sometimes that little bit is all there is but lots of other times there is more. So I know I rambled and I hope it wasn't incoherent but it was from the heart and as much as another person can I feel your pain and wish you some lightening of your heart and your load today.
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Day 5 Diva and starting to feel it a little. Yesterday I got blisteringly tired/sleepy in the afternoon and this morning very sleepy as well. I also had a headache this morning. So, I guess this stuff is getting into my system. Good. Bring it on!
Still putting lots of cream on feet and hands morning and night to keep the bad guys away.
K-Lo: Im actually having re-staging cause I only had an MRI to T and C spine after my last failed tx. We need to look for other mets as we move on to be sure we aren't missing anything that needs tx now (brain - bones about to break or whatever) as we go on.
But you are right. These scans will tell how badly the last tx failed. Wont say anything about how well Xeloda is doing.
Lynn1: Im gonna start calling you Stable Mable!! Im really so happy for you. And a break too! And you got to teach your onc something that will help other women!! You are the karma Charma!
I wanted to ask: I know the Stable Boy means "stable disease", is Reggie - "regression" ?
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Blondie: my eyes and nose run a lot too! I've been taking Zyrtec and it helps some - doesn't make it go away, but makes it more manageable.
Livingit: The headaches could very well be from the X. I had them so bad when I first started this that they did a brain MRI to rule out mets. When that was ruled out, they knew it was from the X. He said it was a rare side effect, but the reduction is dose made them go away.
Yes, Reggie = regression.
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Lynn, still so happy to hear your news!
Blondie, I hope the SEs ease up soon so you can enjoy your break.
Livingit, fatigue was the worst, ugh.
Phone typing, so I apologize if I missed you!
My PET is Monday, and I'll get the preliminary results right after so we can switch up treatment if necessary. Not feeling good about it, but will be what it is.0 -
So did y'all see my Q about dropping things... Do you find that your hands are clumsy? I still have neuropathy from abaraxane or maybe it's new, but have been breaking a lot of dishes lately.
Ya, Zoh, I concur with Lynn re headaches. They're not persistent, they vary in location, but worse than I am used to. I'm going to ask Onc about relaxing jaw at night, maybe add to Ativan or see oral surgeon. Dental appliance not covered.
Happy to be with you divas. Kathy0 -
Wierd Scan Results today;
I had an MRI that showed new lesions to multiple levels of my T spine.
My PET/CT didn't show them apparently..(hu?) Or perhaps they had been noticed before and just not documented. (hu?) The liver however does have increased metabolism in the old lesions as well as a couple more new ones.
So, whatever, Im to continue on Xeloda. Onc says he will increase my dosage until I cry uncle. He wants to use this drug as strongly as possible. He agreed that 7/7 is a good schedule, but that he wants to try 14/7 first to see if I can tollerate it. Fair enough.
I will be setting up a meeting with "my" radiologist tomorrow. A different doc read the PET/CT and he hasnt seen every single film on me since last year. "My" guy has and will hopefully be able to shed some light on these confusing reports.
I was worried about scull mets and lymph nodes and arms about to break off etc. My mind is at least at ease on those counts.
All is well in sleepy me ville.
Looks like K-lo is up next in Scantown. Hope you have an easy weekend Kathy. All will be well.
Zoh
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Thanks so much for the website....I am so very happy to have found this website. You are all so informative and caring....
thanks....
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Hey Zoh, knew you had scans and was thinking of you. Sorry you are back on the roller coaster, but you know that this stuff goes back and forth, back and forth...Hope that the xeloda kicks some butt. I did the 14/7 schedule for a while and it was tolerable. Best of luck, keep on truck'n. And K-lo, best of luck too. SUE
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Suze: I hope you get better results than you anticipate from your PET on Monday. Let us know how it goes!
Kathy: I'm sorry I missed your question. I do feel more clumsy lately, but haven't broken any dishes or anything. Like last night I went to get a cookie sheet out of the oven and I just could not grasp it correctly with one hand. I could have done it using both hands, but DH was there so he just removed it for me. You should mention that to your onc next time you see them just to be safe.
Zoh: I like the way your onc thinks! Start low and increase until you say uncle, vs starting high and then reducing. Do you know what amount you'll be on yet? Hope you get some better answers too.
Penelope: Welcome!!
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That's okay Lynn, I'm getting used to being ignored......
JUST KIDDING, do not overcompensate!Zoh, I am honestly expecting there to be at least a little progression. I took a 3 week break after doxil (due to skin toxicity), and it has only been 4 cycles of X. In fact, I emailed her saying just that, isn't it too soon? Because when she saw millimeters in May I had to give up Abraxane. I do not want to give up on X. ITS TOO SOON!
Besides, I am a DIVA.
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Kathy: it may not be too soon....my recent scans were done after only 3 cycles (9 weeks!) BTW, so cool that you can email your onc!! Nice!! I like how you say you "had to give up" Abraxane. Gosh, and I got rid of it as quickly as I could!! We are all so different!
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Hi ladies...
I just wanted to chime in with some words of encouragement... Xeloda was very slow to work for me... S L O W but steady. I was on 14/7, scanned twice, the first scan showing only very slight regression. So I hope that it starts to kick in for those that are waiting! If not, kick the darn Xeloda to the curb and move on... once a diva, always a diva!
Thinking of you all and wishing you the best!
Rose.
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That is what my onc did, been on X since late July probably 4 rounds and that is where it got bad. I am not a baby but this really kicked azz so when I called him crying that I couldn't deal with it anymore then he told me to stop until the 27th and let the SE back off (still having the eye running, diar, nauseousness, stops on hands and legs, peeling of hands and feet to name a few). Thank goodness, they are still pretty bad and, I last took it last Friday and should have resumed tomorrow, so happy. The Zometa is scheduled for the 21st but this is #3 and hoping that it will be ok or at least better than last time, but that was only 1 day I was out of it..getting scanned next month. I know it is working cause the tumor that I can feel on my right lung has gone down.
Livingit hang in there and we depend on the drs. for the expertise and I like that, I am going the opposite I just assume that he wanted to hit it hard, he doesn't speak much tho.
K-Lo love that you can e-mail that works, are you having SE's?
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Ugh - day 6 of cycle 4 and getting hit with fatigue like never before. My limbs felt like they weighed a hundred pounds each today. Left work early and slept just over three hours this afternoon. Also a bit nauseous and food is tasting wierd. 8 more days. 8 more days.
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Oh, Blondie, I'm so relieved that you asked doc for help and relief. Way to go
'Stang, that sounds miserable. Walking around with lead legs and all.
Has anyone tried Ritalin besides me? The Supportive Care doc gave me 5 mg a day, says it's an old lady dose. Don't need it every day but sure helps and no unpleasant side effects from it.
My Onc answers emails slowly but she is very special. The BS said the email system is not secure, so I think that means "no" from him.0 -
well, I'm in it for good now. My Onc agreed it is a little early, can postpone scan. Then I'm all, well, what do i really want, never satisfied. So lets look and hope she will let me stay on X.
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Blondie: Did you mean you were having trouble with the Zometa? That is awesome that you can feel the one getting smaller!!!!
Mustang: Sorry you are so tired! Knock on wood, that is one se I have not had very bad yet. I remember being on Abraxane and I'd walk to the mailbox and have to take a nap!! Hated it!!
Kathy: No ritalin here. What se's does it help with? So when are you going to scan now - how long did she postpone the scans?
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Ritalin is a stimulant in adults and is commonly used to increase energy for cancer patients. I mentioned it when Mustang felt like a dead horse.........
.. They said if you want to get up to do things, but cant , that may be lack of energy. If you dont know any reason to get up, that may be depression.
Going ahead with scan monday. WTF.
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It's official... I am onto Navelbene (SP).. My onc said there is nothing new on my PetScan, but my liver is lighting up in the old lesions. She said we could up the dose on Xeloda, but did not want to take the chance, because it would be to long before we knew if the up'ed dose was working. At least 2 month's.
So we discussed options. She really wanted to start me on Doxil, but hand to GOD she said because of "Obama care" all the new regulations have halted manufaturing of the drug. But, again we could not afford to wait. It could take months for that disaster to clear up. Really a tried and true drug with great benefits for the patient and the goverment had to mess with it. UGH!!!! If it's not broke don't fix it.
So she talked about Navelbene and Evermilos (again SP). She told me her thought process was to go with the Navelbene, because she has had great results with it and the FDA just approved Evermilos. She has only been using it on her patients for 2 months. Basically though in trial they are about equal in survival rate. (whatever that means, whenever they start talking about that mumbo jumbo, my eyes galze over).
Me and the hubby had a huge powwow with the family (My oldest sons) and we all decided on the Navelbene. It's supposed to be a gentle chemo and supposedly the downside is low blood counts. They said maybe minimal hair loss, its a crrap shoot. Like everything else in this war against friggin cancer.
Are there any ladies & gents out there who have done or doing this drug? Can you give me any advise. Can you tell me your s/e, your story? I sure am going to miss my Xeloda Divas! But I look at it this way, I did get 5 months out of Xeloda. Hugs peeps!
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Ha, K-lo - that is a great description - dead horse. Still very tired today - got up to go to work, took a shower and had to lay back down. Tis a sad day when taking a shower knocks you out for the next four hours! Good luck with the scan - maybe I should try the ritalin - will ask about it if this continues much longer. Hopefully, I will be NED at my scans and I can switch to AI as planned, then hopefully it will be a non-issue.
Does anyone else think food tastes wierd? I think I have a little bit of a cold on top of all of this - so maybe that is the culprit?
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