View Full Version : tykerb/xeloda not working
02-08-2008, 01:20 PM
A month ago I got the news that the 2 spots on my liver were gone and the lymphnodes are shrinking. I was having some stomach pain for the last few months and thought it was the t/x. It got alot worse so I had a CT(drink contrast). It showed that I have a large mass smooshed like a pancake the Dr. said. It is around my intestines and uterus. I can't beleive how painful it is. I will start the treatment that I was on in the beginning back in June of 04. Taxotere/Carboplatin/Herceptin. The mass didn't show up on my last couple of PET/CT scans because of where it was hiding. The PET doesn't blow up your intestines like the CT (drink) does. Good bye to my hair again. Oh well. Just thought I would fill you in on the latest. Thanks for listening and take care. Sally
02-08-2008, 04:58 PM
Sally, what a blow to you--for you to think everything was going well, and yet it wasn't. This mets thing is scary, yet you will likely have good strinkage with the TCH. You will get your courage on the stickin post, do this one day at a time, and have great results!
I got the results back last week after being on T/X for 10 mos. Onco happy, shows it stable as the prior scans. (I wanted shrinkage, of course). However, I am uneasy, wondering if the CT showed everything or if something is not right. More abdominal discomfort, some cramping, more nausea in the last 2 weeks. I had to go off the X for an extra week because of hand/foot burning, so I thought I would feel better recently, not worse. I will talk to my onco about it when I see him in about 10 days, sooner, if it really gets bad. I have 2 different masses in the abdominal area.
How soon will you start the TCH? Yes, it is hard to loose the hair again. Soon it will be spring--you won't have long with cold NY weather chilling the head. Best wishes, keep us posted.
Mary Anne in TX
03-09-2008, 04:44 AM
I'm just checking to see how you are doing on the new treatment of Taxotere, Carbo. and Herceptin? That onry "hiding" mass better get ready to be gone! Hope your pain is better and your new treatment is working with few (NO) side effects! Please let us know how you are. ma
03-09-2008, 12:12 PM
Mary Anne, Thank you so much for thinking of me. It really means alot. I had my second TCH about a week ago. So far I feel pretty good. I think I was feeling crappy because I had an 8 inch mass growing inside me. I had my head shaved a few days ago. It's a little more depressing than I thought it would be. I figured I already did that, no bigggie, but it's still a bummer. I can't stand the taste in my mouth, I'm a little tired and don't sleep that great. So far it's a breeze compared to the Tykerb/Xeloda. Well, take care. Sally
Mary Anne in TX
03-09-2008, 02:18 PM
Sally, get yourself a couple of adorable hats, scarfs, something to treat yourself and look fun inspite of the goofy stuff you're having to endure! Just remember that what you're doing now is temporary. Your hair will grow out and give you a nice surprise! Your treatment is gonna "blast" those BC cells to neverland. And your taste buds will return and long for all your favorite things! Be good to yourself. Prayers and best wishes, ma
03-13-2008, 10:06 PM
My mom was diagnosed one year ago with breast cancer; they did a modified radical mastectomy then. The nodes were clean, she refused chemo/radiation. Four months ago, breast ca returned along with a spot on her spine and two on her ribs. She was started on Herceptin. After 4 Herceptin treatments, the spot on the spine is larger and there are two more spots on her ribs. The oncologist wants to discontinue the Herceptin and start her on Tykerb. She is 70 and had a big stroke in '01 with significant speech difficulty and right sided weakness. I'm looking for feedback on side affects and results of Tykerb. Thank you!
03-14-2008, 09:51 AM
sally .. talk to your doc about the trastuzumab-dm1 trials at sloan kettering in ny. it replaces the herceptin part of the trial.. many about 6 girls here on the forum are using it with great success..
for the phase 1 weekly trial call 212-639-5243
Dr. Shanu Modi at Memorial Sloan-Kettering Cancer Center. E-mail: email@example.com (firstname.lastname@example.org)or
if sloan is not close to you
03-14-2008, 10:46 AM
to 450 from 750 after 2 treatments of TCH. I feel better than I have in months if not years. I hope I only have to do the 6 treatments of this combo. Only time will tell. Thanks for all the support and information. Sally
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