Adding Xeloda

[Lolly]

I saw my onc today for my monthly visit; am into my 4th month of weekly Navelbine/Herceptin and have had a sluggish response this time (third time on this combo since 2001). We had discussed adding Xeloda initially, but I've been struggling with my counts and we've decided to keep the Navelbine at half the normal dose, which keeps my counts stable, and add Xeloda. Starting low, at 500 mg twice daily, then increasing from there. He gave me the options of: 2 weeks on/one week off, 5 days on/2 days off, or every day-see-how-well-I-tolerate-it dose. I decided to go for the gusto and am taking it every day.

I hope to see a good response in the axilla nodes, which have been only stable (I know, stable is good but I'd like to see some shrinkage!)on the N/H combo.

If anyone has any advice to offer on Xeloda side effects, I'm all ears

<3 Lolly

[Lisa]

Lolly,

I'm on my second round of 2 on/1 off of Xeloda. So far, no side effects. And I'm taking 1,500 mg. twice daily, which I was told is a fairly low dose. This needs to work. My markers keep climbing and my last scan was bright.

Navelbine was tough on me, but it did work somewhat. Let's hope this combo does the trick for you.

Love and light,

Lisa

[al from Canada]

Lolly,

Everyone has now excepted the fact that the dosage from the phase 1 xeloda trials was a little high. I believe that the best for most women is 1500 mg BID, or 3000 / day. Linda has been on this for quite a while and has had no hand / foot syndrome, etc. Is far as counts are concerned: neupogen, neupogen, neupogen,....that's what's it there for. In fact....recent studies have indicated that neupogen actually has some cyto-toxic effects on its own! Linda and I found that 14 days xeloda + 5 doses for neupogen on days 16 - 20 will have counts way up for your blood work on day 21. Again, the drug works; so use it! The only side effects from neupogen is bone pain and elevated Alk. Phos.; so what else is new??

My other question after re-reading your post: what makes your onc think that reducing navelbine by 50% will not impact outcome, or make it work well enough to the point where it will not jepordize your life;, because at the end of the day....isn't that what matters? Xeloda is another story, where dose reduction has not been shown (and documented) to impact overall survival. That said, I also don't believe everything I read these days. As far as your gusto move....that may turn-out to be the most effective as it almost resmbles a continous infusion. Question about the doseage.......3000mg ,14 days / 21 = 42,000 mg. OR, (42000 * 4) = 168,000 mg / 12 weeks. as opposed to (1000mg * 7 * 12 weeks) = 84,000 mg or 1/2 of the reduced doseage. However, if that's what it takes...go for it. Remember, I don't think there is a clean formula where you can extrapolate out continous dosage form one with regular breaks. My thought is that if they offered that to Linda, I would recommend it over the 14 day dosing. (remember, I'm not a doctor)
The question remains: will daily dosing cause a significant drop in your blodd AND if it does....is concurrent neupogen possible....
Again, good luck;
Al

Lolly,
Everyone's tolerance seems to be a bit different with the dosages of Xeloda. I'm just on 2000mg/day in two divided doses of 1000mg. My personal schedule is two weeks on, two off. But that is because of the Temodar I do concurrently for the first week.

Anywho, I have been doing the B-6 200mg a day and lotioning my feet etc. Making sure I eat just before taking my dose. The only side effects I've noticed (just barely at that) is an increase of tearing of eyes in the morning. One time they were 'sealed' shut, but not goopy. I've done six rounds.

The thing is, imo and from what I've read, is that any Xeloda side effects are easily reversed with discontinuance, if done right away. A reduced dose can then be tried.

I must assume your counts will be checked regularly? If you know the reduced dosage of Navelbine works well for you in that dept., but your counts drop with a daily dose of Xeloda, I would sure consider one of the other 'plans'.

Hoping for the kind of response you're looking for,
hugs,
pattyz

[Lolly]

Thanks for the comments Friends, I appreciate your input. I decided on the daily dosing over the on/off schedule because my onc believes the daily is more effective. We plan on raising the dose gradually until I reach a maximum tolerance level, our main concern being nerve damage and h/f syndrome. He isn't too concerned about counts dropping as yes, we can combat that with supportive injections, and my counts are checked weekly when I go for Herceptin/Navelbine. I've had Neulasta in the past, and have been on Arenesp every 2 weeks. I'm happy to be on the reduced Navelbine as it's been hard on me in other ways besides my counts; muscle cramps, nausea, headaches, etc. and the injections to keep the counts up have their own roster of side effects, so we're hoping with the reduced dose I'll still have some synergy with Herceptin and Xeloda will deliver the one/two knock-out punch! Thanks again, will keep you posted.

<3 Lolly

[Lyn]

Hi Lolly, why eat just before, I was taking mine last thing at night and I didn't feel very well afterwards is this why, when I took it just after dinner I was Ok, is it just that or does it work better just after food? I keep feeling my lumps to see if any change and strangely enough they seem smaller, may just be wishful thinking. I know it does make a difference to some drugs on the way they perform but not sure on this one.

Love & Hugs Lyn

[Lolly]

Lyn, the pharmacist who filled my prescription said it should be taken within 30 minutes after eating, and the package insert said the same thing. I would guess that's to keep down the nausea factor, and maybe also has something to do with how it's metabolized. Maybe that's why you felt punky taking it on an empty stomach. I know some meds you HAVE to take on an empty stomach, but apparently it's the opposite with Xeloda.

<3 Lolly