All about Xeloda
Comments
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I will be starting Xeloda in a couple days as soon as my pharmacy gets them in. I will also be taking Tykerb with it. I will be on 14 on 7 off. Any tips would be appreciated. I am a little nervous to start taking these. Hope all of you are having a good week.
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Hi Janicemarie! Welcome to the Diva Club!
Both of those can cause diarrhea so have some Immodium on hand and I'd go ahead and ask your onc for a scrpit for Lomotil just in case. It's a stronger version of Immodium basically. Better to have it and not need it, than to not have it. But not everyone gets that side effect. I'm on Xeloda alone and I actually have constipation. My onc thinks I'm weird. ;-)
Also get some good creams/lotions for your hands and feet. Udderly Smooth with Urea or Working Hands (at Lowes). I like one that it is a CVS brand just simply called "Heel Balm". I also use "Bag Balm" on my feet at night.
Those are the 2 most common side effects but if you have others just check back in here...someone always has some tips. Best of luck to you!!!
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Hello from an X- X Diva. Reporting in how nice it is to have no blood in my nose! it kinda catches attention when it smears all over from frequent blowing and wiping.
Hands look more normal although i was a lucky one with no blister or pain there.
Still sleepy tho, so maybe the cytokines are the culprit there.
Best to all on Xeloda working magic as long as possible.
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I shall be starting Xeloda on 5th March, two weeks on, one week off and hoping I'll escape the bad effects - dosage will be 2000mg a day, which my oncologist says is a lower dose than normal, so he hopes I will avoid the side effects but that the drug will still control the cancer.
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Hey K. -Lo....glad to see you checking in. Hope you are doing well.
Judie0 -
Do the side effects ever stretch into the week off?
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Ty, JJ.
Soliel, I'm afraid I and others have had the Se's occur on the week off. Have your prn meds handy at all times and you can ride it out.0 -
Thanks, Lynn and Lovinmomma! I'm quite calm about the results so far, but know I'll be freaking out by Tuesday...
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Welcome to all those joining the club. Fingers crossed for all of the benefits but none of the SEs!
Have a great weekend everyone, Angelfalls xx0 -
Banjo: that is great he's starting you out low. I think mine started mine way too high. I know they like to "hit it hard" and then lower till you can tolerate it, but I think gradually increasing and stopping when it gets bad is a better way. I think you should do well at that dose. Let us know how it goes.
Solei: sometimes they do and sometimes they don't. Nothing is ever "concrete" in cancerland is it? I will say that the se's diminished quickly for me when I was given a 2-week break (instead of one week off) because of some side effects. I felt back to normal on that 2nd week. I guess all that to say.....they may continue somewhat into the "off week", but I've found the week off still really helps you "regroup" and get ready for the next cycle.
Angelfalls: Hope you have a great weekend too!!
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Yes, thats been my experience too. Some SE's even on week off. Keep the Immodium handy at all times...lol.
Judie0 -
Angelfalls, are you waiting for scan results?
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Yes, Sue. My appt is on Tuesday, so I'll find out then whether or not the X is working... If it is, on to cycle number 4. If not, on to the next tx, whatever that might be... Fingers crossed!!! xx
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Well, Divas, the results are in and, after a short but sweet flirtation with X, I'm switching chemos. There has been a tiny bit of growth in the 2 tumours behind the sternum, so my onc said straight away that the response isn't good enough and we need to look for an alternative. After discussing the options, we've decided to go for weekly Taxol. If anybody has any tips or experiences to share, I'd love to hear them. Although this is obviously disappointing, the good news is that "all the important bits are still clear" (my onc's words!!)... Onwards and upwards!!!
Hope you are all doing well and get a good response for a long time to come.
Hugs, Angelfalls xx0 -
So sorry Angelfalls. That really stinks.
Has anyone been on Vit X and really not had side effects, but it was working?? It is just a bit scary to me. I see the onc on Monday and I think I am getting scans in about a month, but not sure??
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Angelfalls: I'm so sorry X didn't work for you!! You know you're always welcome to pop in here and say hello. Once a Diva, always a Diva!
I don't have any experpeicne with Taxol, but I see it discussed frequently on these boards so maybe you could start a thead about it - I know you would get lots of tips/tricks. HUGS!!!lovinmamma: While I do have some side effects, I feel they are very tolerable and usually do not interfere with my QOL. It has worked for 8 months - had scans today too see if it still is. *fingers crossed*
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Thank you, Lovinmomma and Lynn! My very best wishes to you xx
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?Low WBC? On my second round of Vit X, I got really bad H&F so was stopped. Now am trying to go back on but my WBC are too low. I have always had below normal WBC but now way too low to have VIt X. Onc wants to redo blood test and then give me a Neulasta shot if still low. Anyone else?
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My mom has been taking Neupogen for 2-3 days on her week off. She was on Taxol before and WBC were staying pretty low, so she's been doing Neupogen for a year or so before X.
We're at MD Anderson now. Scans were today, and we see the doctor tomorrow. Hopefully she can stay on it becasue it's been very gentle on her. Very little diarrhea, and only minor dryness, and a tiny bit of cracking on hands/feet after 3 cycles of 2wks on/ 1 wk off.
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Hey, guys! I have some tenative good news to share -- It looks like the Xeloda and Tykerb are working for Mom. The onc didn't have the official reports yet, but he looked at the images himself and said he thinks everything looks stable (his PA said she thinks one spot looks a little smaller!!). We will get the official word tomorrow, but we are happy for now.
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AWESOME NEWS!
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Thanks, Scuttlers! Forgot to add tumor markers went down, too! It's just a little unsettling having to wait for the *official* word, but my heart feels a little lighter, anyway.
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Hi all. I looked around this thread - apologies of this was addressed and I missed it - how thin did your hair get? Mine seems about 50% thinner after 5 cycles. Am I going to need to dig out hats? I adapt better if I know what to expect. How thin can hair go on X? The rest of me sure isnt getting thinner LOL
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Hi Learnin!! So far I have been fortunate to not lose any hair. I'm sorry you are having that side effect. I've never heard anyone have total hair loss on X so hopefully this is as thin as yours will get.
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Hi Learnin,
Yes mine is about 50% as well and Im on my 8th cycle (started in Oct) I havent seen any more come out in quite a while. Hope yours has stopped at this point too.
Hugs Suz
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Hi gals, well this is it.... I go in for my ct scan today. I already had a bone scan done a few days ago. The big question is whats causing the excruciating pain in my left hand and arm? Its not like an Xeloda se as its only one hand and arm and if feels like nerve pain to me.
One of the things we've discussed is either deterioration in one of my joints which has the bone pinching a nerve or a node (could be in my neck) pressing on a nerve. Either way it could be progression and that scares me. It also might mean X has run its course, Ive done 8 cycles and have been on it since Oct... have I mentioned Im really scared!
Ive been walking around like a timebomb ready to explode... We changed all my pain meds. I was on Oxy & Gabbapentin and now am taking hydromorphone and lyrica. There is a bit of relief but its still pretty bad, enough for me to have stopped using my left arm.
Dh is trying to distract me... we just bought a fifth wheel camper in Bellingham Wa, so we will be heading over the border tomorrow to pick it up friday. At the same time we will spend a couple of days on it, maybe Birch Bay after a big Wallmart shop to stock it up with dishes & a few necessities. It will be a welcome distraction while I wait for results.
My Onc moved up all my scans as she was really concerned. They were all set up for the end of the month. Not sure if Im supposed to start X on friday but will talk to her sometime today.
I also am getting in today to see a pain management Dr at the Cancer Agency to see why nothing is working on the arm.
Anyway Im rambling now, as Ive said Im scared because deep down I think somethings wrong... and darn it that gut feeling has almost always been right.... I pray its not this time!
Hugs Suz
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Best of luck on your scans, Suz! I hope they can figure out that pain an dknock it out! DId the pain management doc have any new suggestions today?
Have a wonderful time in your new camper! Sounds fun!
((((BIG HUGS))))
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bump
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Starting Xeloda and Tykerb as soon as my pharmacy gets them in this week. I'm on the 14/7 schedule to begin. PET scan Monday showed that after two rounds tumors were still growing on the Taxol/Carboplatin combo. Previously was on Taxol only and had both growth on existing tumors and the emergence of three new tumors, including on the Adrenal glands.
I was really lucky as far as SE on Taxol, but now I am nervous about the Xeloda SE. DH (lovehertons) and I are planning a trip to Ireland in May, and I want to take my boys to California in June, so I hope to be able to walk easily. And I really hope X gets something done for me. My Onc asked yesterday if I had talked to my boys (11 and 8) about what to expect (meaning my death) and I told her not yet. This is my 3rd go-round with cancer (Hodgkins Disease in '86, bilateral mastectomy April '11 and now mets in Dec '11), and the boys just think this is something mommy gets like other people get colds.
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Good luck on X Ishie! I did really well on it from Oct till now, My last scan (3 months ago) showed reduction in all tumors by a third. Even if that's the end of x for me it was a really good run.
Now about me.... it looks like all the scan results must be in as My Onco just called me in this afternoon... I'm thinking it must be bad news as my appointment was scheduled for next week. I'm having a hard time just thinking about it and want to stick my head in the sand. They never call when its good news. I was really hoping the pain was non Cancer related.
Breathe in breathe out, breathe in breath out... Yup I'm still breathing
Hugs all Suz
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Oh, Suz. Praying. Here when you can tell us. Breathing, with you.
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