Counts up/New treatment

[lu ann]

I guess I won't be having treatment on Halloween. My counts are up to 117 from 94 in August. I was on Gemsar, Herceptin, and Zometa. I wll have a CT scan of chest, abdomen, and pelvis on Monday. Doc says she will talk to me Tuesday with the results and to discuss treatment plan. They sent me home with a packet about Xeloda. The nurse explained that while there are some serious side effects, their office keeps on top of everything to keep them at a safe level. To those of you with experience with Xeloda, what should I expect? Thanks and Blessings to all. Lu Ann.

[Lolly]

Lu Ann, I'm sorry to hear about the counts going up...that's always upsetting but especially going into the weekend. Just try not to worry too much.

I haven't had Xeloda yet, but we're going to be adding it once we get some side effects from Navelbine resolved. I've been told we'll start on a low dose and work up to whatever I can tolerate, and that the most common side effects are diarreah, and/or hand-foot syndrom(red, chapped and peeling skin on the palms of hands and soles of feet). I am sure you'll hear from some who have actual experience with Xeloda, and I also know a couple of ladies at my treatment center who've have very good response from Xeloda/Herceptin combo. Will you be staying on Herceptin and Zometa?

<3,
Lolly

[jojo]

LuAnn,

I have been on Xeloda 2,500mg per day since Sept 2, so that is about 2 months so far. I was told that I am on a low dosage, so I have had very minimal side effects. Just only mild H / F syndrome, mostly skin color darkening & multiple tiny brown spots.

I don't feel any aches from them, but let me tell ya... they sure look UGLY!!! :-( As if I never washed them, but I still do. Every now & then I would look at my hands and think that I didn't clean them enough, so I would re-lather with soap, until a couple of minutes later my mind would once again remind me of the HFS. Me duh! You'd think that I would get the hang of it, but 2 long months later, I still forget! :-( So much for chemo brain....

Lolly,

It sounds to me as if you intend to get on Xeloda, once your side effects from Navelbine subside, is that right? Why is that? Cancer progression or Navelbine being too hard on your body??...

Would you share your experiences with Navelbine? I would guess that Navelbine would be my next chemo, should my onc decide that Xeloda wasn't working for me. I will find out next week.

Good luck, ladies. Keep us posted.

Happy Halloween!

[Amy]

Lu Ann,

Hi. I've been on xeloda with herceptin since Sept. 8th. I'm taking 4000mg/day of xeloda. The only side effects I've experienced is hand/foot syndrome and some fatigue....no diareah. I can totally relate to Jojo about the "dirty" hands thing. My lungs mets have remained stable thus far. It would be so nice if the only drug we had to be on was Herceptin ( and it worked)....so our immune sysytem could builld back up to normal, you know? Hopefully someday we'll reach that place....good luck to you and I pray it all goes well.
Love, Amy

[lu ann]

I'm really not upset, but rather relieved about getting of the gemsar. I did not like the way it made me feel. I will be staying on heceptin and zometa along with the xeloda. I read on line that xeloda offers a decent quality of life if administered in the right dose. My hands look old and blotchy now, I can't imagine what they will look like if they get worse. Is there any hair loss with xeloda? I read there is. I hate to have to go there again with winter coming on, but I guess we do what we have to. Take care and God Bless everyone. Lu Ann.

[jojo]

Subject title says it all.

[Lolly]

Hi JoJo,

I'm on Navelbine/Herceptin for the third time since 2001; each regimen has been 6 months long. First time, complete response, then Herceptin alone until second recurrence in April 2004. Navelbine added again for another 6 months, and had a good response but still had one enlarged node which has been stable since then. I had progression to axilla nodes confirmed last month and again added Navelbine which so far has stabilized things with symptoms abating and some small shrinkage. But, we're thinking that the cancer is finally becoming somewhat resistant to Navelbine, although not completely, and my onc wants to add Xeloda to give it an extra one-two punch. Navelbine has been very easy for me to tolerate and I've had great results from it. Hair thins somewhat and have stomach issues (I get IV anti-nausea drugs at treatment and have pills at home if I need them).The main side effect is low blood counts, last time I did have to start Arenesp shots about halfway through for red blood cells; the low white cell count we manage by cutting the dose in half when the white counts are below 1200. So far have only had one dose cut.

Hope this helps, keep us posted!

<3,
Lolly

__________________

[Cindi]

I just got done with a 6 month treatment with Xeloda. It was so nice to be able to just "take a pill or two" each day and not have to see my Onc. more than 1 time / month! I had some stomach distress with it, but it was manageable...lots of Imodium near by...but again, everyone is different. I was on 3000 mg./ day.

The H/F syndrome, progressively got worse for me, but not bad enough that I ever had to lower the dose. Really not noticeable fatigue from it. Hair thinned a bit, but not much.

It was a great drug, while it lasted.

God Bless,
Cindi.