scan results in -- xeloda will be next

[Pam P]

My CT scan was normal! Even my pleural effusions (a result of taxotere a year and a half ago) were much better/almost gone.
My PET scan was basically stable, but there was one new spot in the C3 (which didn't surprise me because I've been having a stiff neck the last few weeks.) The other spots in the vertebrae & ribs were either the same or slightly better or one slightly worse than the last scan. One spot was less active, but bigger in size (i don't know if that's good or bad).
My onc. said he thinks the cancer is slowly growing because of the upward trend of the tumor marker counts - they've gone from 70 - 149 in the six months since I've been off navelbine - even though the PET doesn't show any drastic change yet. So he wants me to start Xeloda.
I have cataract surgery this Monday, so he said I can delay starting the xeloda for 3 weeks. I see him again on July 26 & will start it then. I'll continue to get the herceptin and Zometa. So, I have 3 weeks to enjoy feeling good before I have to deal with more chemo effects.

I've read many of your posts about xeloda, but if you can reply with your experiences/info I'd appreciate that. My questions now would be:
1) what should I ask my onc. when I start?
2) what dose do you take? (I think he said I'd start with 1000mg in morning; 1000 mg in evening, so a total of 2000 mg/day.
3) what are the most likely side effects? I've read about h/f syndrome, diarrhea as the worst -- do you all experience that? what about fatigue?
4) is it a very successful/effective drug? (compared to navelbine, taxotere, etc)
5) how long can one stay on xeloda?

Thanks in advance for your support & info. Pam

[Cindy H.]

I couldn't sleep on Xeloda...no other side effects...was on 3000mg/day for 4.5 months...it didn't work for me...am on Abraxane now.

[Linda]

Dear Pam
I like Xeloda. I took it for 6 rounds ( see post below about the rash).I think I started with 3000 a day or 3500. I had a rash on my hands and arms and my face for a whilre and then it peeld away like a cheical peel. My skin was then lovely.
My hands and feet got very peely and toward the end very sore. it was then reduced to 3000 - I am pretty sure it was 3500 first - and this made
it better.
I took it for skin mets and they melted away after about 2 weeks.
I would take it again ( am on carboplatin now for post op 2nd mastectomy).
Anything else you need to ask feel free
love
Linda

[al from canada]

Hi Pam,
Don't sweat the Xeloda! My Linda was on 3500 mg / day and was reduced to 3000 mg / day and has had minimal side effects, (she is very slight and around 115-120 lb) so if the doctor is starting you at 2000 mg, that seems a low starting dose. Linda's side effects are a bit of hand pain, some neuropathy but mostly low blood counts. This is probably due to comprimised bone marrow from marrow mets. She is now on neupogen and that has resolved the problem. No diarrea, peeling skin, and fatigue is managed very well with methyphenidate.

Don't expect the worst because xeloda is one of the "friendliest" chemos around. It is considered a "smart drug" because (theoretically) it is only activated by cancer cells. I think that there are people on this board who have taken xeloda for 1 year or more. As far as effacy: Linda has had 4 cycles of xeloda to date (12 weeks) and her blood chemistry (liver profile) is the best it's been for over 1 1/2 years. That includes AC & T and navelbine.

Be positive and if you don't expect the worst, it won't happen.

All the best.
Al

[jojo]

Hi Pam,

My oncologist & onc nurse practitioner both have mentioned to me in the recent past that they have seen patients go on Xeloda for years, even 7, 10 years! Onc & NP literally said the numbers of years. I saw my chemo nurses soon afterwards, and they simply repeated the same thing. That is good to hear, huh? :-)

Hang in there, Pam! We are rooting for you. :-)

[Lyn]

To JoJo, did they mention what dose is acceptable for that length of time?

big hugs Lyn

[jojo]

Hi Lyn,

That is an excellent question! This also brought to mind: has Xeloda been successful in treating women for that lengthy timeframe, with aggressive cancer? Maybe my medical team was referring to the ones who have lower-grade slow-growing cancer. But I didn't think of that when they were telling me about Xeloda back in the springtime.

Also, I have yet to be given Xeloda, as my oncologist tells me that my cancer is similar to the hormone-like type, which is obviously slower in tumor grade then the aggressive cancer.

I just don't quite understand how I got to be metatastic, if imy cancer was the "hormone-like" (per my oncologist). I did ask how come I am considered that I am amongs the patients with the aggressive cancer. She just said, because I recurred. Have you ever heard of any aggressive cancer that is also the slow type???

Well, I don't see my medical team until after the 1st week of Aug. So, anybody please remind me of Lyn's question!

PS: did I ever mention to the boards that I have a routine CT scan of the abdomenal & pelvis every 3 months? (I guess, due to my supra nodes, but they don't take images of the nodes, though! To this day, these CT scans have kept coming in as negative.) That also comes with my head MRI, as well. However, I have had only a bone scan just once....

I think this is telling me that my thinking process acts very slow, hahah! Well, I want my old brain back -- many thanks to chemo!

[Lyn]

To JoJo, hi tere, my BC was agressive to start with and I have been having treatment since 1998 for reoccurences continually. My last flare up in my neck was slow because it took almost a year of CT, ultra sounds, more CT before an MRI picked it up deep in my neck, it was very slow and it took a long to to bring it back in check, then I got it in the skin on my other breast not long after the neck was resolved and then into my breast as well, that was when I had the Xeloda with radiation for the second time. I had Xeloda originally for skin mets to the mastectomy site, that worked and then I got more skin mets to my neck while on it and had Navelbine and so the story goes. I believe that the Herceptin changed my status to a slow growing BC, it seems to be the logical explanation. At the moment I am in Limbo, nothing showing on results, I have to keep my fingers crossed, but I won't be surprised if it pops up somewhere else as long as I get it quickly.

Hugs Lyn

[jessica]

This is good news! I'm hoping that you find the Xeloda easy to tolerate & that it will once & for all, finish off those spots on your ribs & spine! And you must feel much better now that the pleural effusion is resolved.
We've got to just keep on living & thriving-let those researchers keep on developing drugs for us, cause we're going to be around for a LONG time!

Keep the Faith, Pam!