New here....need info on Xeloda and Zometa

Hello Gina,

       Your time lines run very parallel to mine.  I too was diagnosed with triple neg bc; under went surgery, chemo, and radiation in 2005.  Three months later (Oct/Nov 2005),my onc told me I was cancer free or NED.  Three months afterward, I discovered a local lump under my arm (same side of cancer), and was told it had metastasized to the chest/lungs and later to my bone. 

       Conclusion: The first line of chemo was ineffective, and the disease was not detectable with a physical; my disease was never detectable by blood test.

        My onc treated me with Avastin and Taxotere.  Within one to two months this drug combination proved to be ineffective.  I was then placed on Xeloda and Zometa.  Zometa for the bones and Xeloda for the cancer.

       Within 2 1/2 cycles of Xeloda my four tumors had shrink-ed in half.  I did experience the common foot and hand discoloration caused by Xeloda.  I even experienced foot pain when I walked, but I found the longer I walked the pain would subside.  Unfortunately, my third cycle caused me to have the 'lip syndrome'.  I was on the medication for a total of 4 1/2 days in cycle three when my lip began to swell.  My onc told me to stop the medication, and the swelling was gone in a day. 

      My chemo experience has been pretty smooth relative to others cancer patients.  Zometa was the first therapy to cause me misery.  The first day of dosage was smooth, but the following day was miserable.  I experienced bone and joint pain that seem to migrate from one area to another.  Sleeping was difficult for me, because I continue to wake-up in pain. 

       I am no longer on Xeloda, despite the amazing results.  My onc and I have decided to start the Carboplatin.  I am still taking the Zometa, but this time with pain pills. 

       Best of luck.  Let me know how it goes.

Melissa 

I know locally here in (Fla) and in MD Anderson Houston they are using Abraxance (spell?) Carboplatinum wuth Avastan with good results.

I've been dealing with mets for almost 3 years now and have been on chemo pretty much non-stop since then, I've been on just about everything available except zometa.  So heres my experience hope it helps: Xeloda: pbly the most effective so far I was on it a total of 10 months tumors were gone after first 2 months but then I got serious hand and foot syndrome and dose was lowered until we got it under control. I also had thrush and had to take meds for that. On my off week I had terrible stomach cramps followed by diarrhea but the pain meds helped a ton. Had surgery after the xeloda stopped working to reduce tumor load. then was started on gemzar which didnt seem to work (found out that quack surgeon missed almost half tumors) then I went on Navelbine (did all single agent chemos, because I didnt want to burn up all my chemos at once and lessen side effects) Navelbine work very well and kept my tumors shrunk and killed some of them, side effects were pretty mild, some nausea, hair thinning but thats about it. It worked for approx 6 months. then I did radiation to neck and chest area because I had a tumor next to the pericardium. and I wanted a break from weekly chemos. 33 rads treatments. then after 6 weeks I started on doxil... OUCH and YUK. effects side werent bad at first, normal tired, nausea and constipation, but then I started getting hand foot syndrome again and this time it hit hard and fast, so bad that I could not walk for 3 weeks. there was no reducing dose. taken off immediately but it was working. At that point there really wasnt much left to take, they wanted to start me on taxotere and avastin, but aside from the hand and foot deal I still dont want to lose my hair until I have no other choice. I went to stanford U and they recommended Gemzar and avastin and advised to stay away from any taxol based chemo because I will get more damage (my feet and hand will never be the same and I am in constant pain even with pain meds) so I am on gemzar and avastin and have been since June. so far everything is stable I have another scan Wednesday. side effects: well the first three days I have pretty bad nausea followed by terrible painful constipation, but for the first time in 3 years my WBC and RBC are actually holding up pretty good, yes I am getting neulasta but my counts usually dont come up even with the shots. When I was first dx in sept 03 stage 2b triple neg grade3 very aggressive I did dose dense ac/t (does dense 2 weeks). Good luck. I hoped I helped.

Wow the pain, I'm going to have a real talk with my onco without you women and your stories I'm lost and I don't like being lost. So now I'm making a list and she is going to follow it. Thank you everyone.  P.S. What is the lip syndrome, I already have unbelievable pain in my left leg it's been hurting for days and won't stop and I take morphine it doesn't touch it at all. But now I'm not waiting I want another bone scan and whatever scans I can get I'm going for everything happens so fast when your trple neg. This is an eye opener.  Good luck everyone and keep the strength, faith, peanuts whatever helps you.

Wow, I find it useful to read everyone's tx history like that.

So, I'm offering my history and experience:

Dec '96: Right breast lumpectomy.  Got AC followed by Taxol.  AC had the worst side effects for me.  Violently throwing up exactly 1 hour after infusion and continued for 2 days.  Zoffran or other anti-nausea didn't work.  Taxol was quite a breeze.

Jun '99: Left breast lumptectomy.  Did CMF.  This was not as bad.  Still lost the hair though.

Oct '03: Bilateral mastectomy due to lump in right breast again.  Did Taxotere.  Swollen up, gained 15 lbs, had breathing difficulties, couldn't walk, had fingernails lifted.  Lasix (diuretic) helped some but not much, but I noticed that the pre-med Dexamethosone relieved some swelling, so I begged the onc. to give me some more Dex AFTER the treatment is over.  That helped jump-start the weight loss.  The water weight was gone in a couple of months.

Jun '06 was diagnosed with mets to lungs.

First line was Avastin+Taxol.  After 2 months, scan showed shrinkage.  After 4 more months, scan showed progression.

Second line was Avastin+Carboplatin for 2 cycles followed by Carboplatin single agent for subsequent cycles.  After 3 cycles, scan showed DRAMATIC shrinkage.  After 3 more cycles, scan showed some more shrinkage but nothing spectacular.  After yet 3 more cycles, scan showed progression.

Third line was PARP Inhibitor (clinical trial, I'm BRCA1).  After 2 months, scan showed progression.  We continued anyway since sometimes there's a delayed reaction on this drug.  But after another month the scan showed more progression.

My most likely options for next treatment are either Ixabepilone+Xeloda or Abraxane+Avastin (actually I'd like to petition adding Erbitux to this mix if I seriously want to go with this combo).  My oncologist appears to like Navelbine, which I didn't even know was a "good" option for triple negatives.  But I see that some of you have had Navelbine, so apparently it IS given to triple negatives. 

Well, best wishes for everyone...

Xeloda and Zometa can both be Googled for side effects--neither has caused me much trouble.  You need to be put on PARP as soon as possible from what I understand about BRCA.  Go to a major cancer center.