advice on herceptin/xeloda combo/

turbo · 01-03-2009, 11:14 AM

I will be going off a phase 1 trial of Tykerb escalated dose . I have done well on tykerb for almost 2 years...stable(first 16 mo. w/avastin) Any progression in phase one means need to go off and I showed a couple centimeter progression. The next plan is xeloda /herceptin(every 3 weeks) I have been stage 1V for 2 years and never on herceptin . I have a couple small lung nodules. have not altered any activity due to treatments so far..any advice on new combo? Thanks!

grandma2 · 01-09-2009, 05:34 PM

sorry to report turbo, but i've had horrendous problems with these drugs. did go to er new years day and was just released yesterday. very frightening and difficult week. pancreatic tests were normal this time, liver and bilirubin very high. was jaundiced. so this time it wasn't pancreatitis, but after more testing turned out to be blocked bile duct so i was very sick. had a horrible procedure (without a general) to insert 2 stents in bile ducts with a drain. they removed 30 cc of bile. that night spiked 103 temp so they called in infect. dis. doc. then had trouble breathing and have partial collapsed lung on right side. they had to put a tube with the stents completely thru my liver and thread thru ducts to main duct. it wasn't pretty...horribly painful. next morning went back to be sure bile was draining and then removed the drain. finally home yesterday still in lots of pain but will be having visiting nurse for a while. so needless to say these 2 drugs are gone for good. onc said will have rads to the nodes in belly that have mets and then will try other chemo. i think she said avastin and taxol. not 100% on the avastin. this has been going on since early sept when i started these drugs. i know many are on xeloda without the problems i've had. as far as the combo, i don't think that many ladies are on both since herceptin is very effective. i certainly pray your experience will not only be effective but much much easier than mine has been. please feel free to send me any questions you might have, (that is if i haven't completely scared you off). my prayers are with you. grandma

01-09-2009, 06:05 PM

So sorry to hear about your bad experience...one never knows for sure what their experience will be. My Inc seems to think I won 't have a hard time as I have not had other common side effects with previous treatments. Good luck with avastin, I did well with that. Just curious what dose you were on with xeloda?thanks

grandma2 · 01-10-2009, 04:55 PM

with xeloda i started on 8 pills daily, then went to 4 pills daily, and finally 2 pills daily. tykerb was supposed to be 5 pills daily but i took 4/day. docs are not sure if it was one or the other or a combo. i'm wondering why you stopped avastin. good luck.

yankeebikachic · 01-11-2009, 02:15 PM

I have not been on that combo but am having great results with tykerb/xeloda. I take 6 pills a day of xeloda (my doc told me that is max dose and then some for my body weight) and 5 of tykerb every day. Lots of women have had great results with xeloda and H, go for it, its well worth it to beat this disease back down. I do have side effects, rash on face, hand/foot syndrome, increased bilirubin and upset tummy with loose bm's. I know, it doesn't sound like fun! But I am doing well, NED and working long hours, standing on my feet with a very active lifestyle.
Good luck to you.

turbo · 01-15-2009, 12:39 AM

Thanks ...sounds encouraging!

SoCalGal · 01-16-2009, 11:42 PM

Herceptin tykerb would also be good. I wish more oncs would ADD them together and evaluate. Xeloda in the mix is good for "synergy" I suppose but it would be nice to see if you respond on "just" herceptin before you add in the xeloda. Is that too risky? I was on herceptin/tykerb and then added in avastin and it seemed to make me stable. It's so hard to choose. --Flori

Sheila · 01-18-2009, 06:02 AM

Turbo
I was on the Herceptin Xeloda combo for 1 1/2 years for mets to the supraclavicular nodes...I did the Herceptin every 3 weeks, and the Xeloda was 2 weeks on, 1 off, 2500 mg a day...3 in the morning and 2 at night...except for the skin issues (peeling cracking) on my hands and some burning in the feet towards the end, I thought it was a dream combo...no other side effects whatsoever....wish I could have stayed on it forecer. Good Luck...seems that 2500mg a daay is the new standard, some Dr's want to try to use 4000mg, and the studies show 2500 is just as effective.

turbo · 01-18-2009, 11:05 AM

thanks sheila same regimen i am on only 3500 xeloda a day ...seems high ,I weigh 137 , dose is supposed to correlate to. I Know my doc will reduce if I have side effects...I have been on 6 days and have some nausea....Where can I find info on the new standard dosage? Thanks Turbo