December 9, 2008 at 7:40 pm #23363lainyParticipant
Hi Robyn (my daughter is Robin) and welcome to the best little club in the world that no one wishes to join. You are already doing all the rights things. All you can do is read, read, read and be very strong with lots of hope. You do not have to take “NO” as an answer. We are here for you and your mom and as far as I am concerned Robins/Robyns make the best daughters!!!!December 9, 2008 at 5:53 pm #23362cherbourgParticipant
Welcome. You are in very good company here with wonderful support and advice. I suggest reading some of the posts and posting any questions you may have. Check the search box first when you have a question. I’ve found most of my questions had already been asked and got wonderful advice and answers. These are some of the most compassionate caring people I’ve ever met.
Know that you and your mom will be in my thoughts and prayers.
Hugs to you both………
PamDecember 9, 2008 at 5:52 pm #23361marionsModerator
Dear Robyn…you are already doing and you are doing well. So glad that you have found us. You have come to the right place for support, help, advice, a laughter and lots of hugs and more then anything expect “hope” floating your way. Again, hello and my best wishes to you and your Mom.
MarionDecember 9, 2008 at 3:35 pm #23360robynMember
Hello, this is my first time here. My mom was Dx with CC in late Oct. She has a 10cm tumor in the middle of the two lobes of the liver, so we were told surgery is not an option. The first onc we saw told us that she had 3-6 months, and needed to “get her affairs in order.” He said he would do chemo, but is probably wouldn’t do any good. We were absolutley devastated for a couple of days, but she is 56 and in perfect health otherwise, so I just couldn’t accept that answer. We went to MD Anderson in Houston, Tx. She was started on Gem/Xeloda two weeks on and one week off. After three rounds we will go back to Houston to check scans. This is new territory for us. We live in a small town and don’t know anyone else with cancer, let alone this one. We have only heard negative things so we’re still really scared, but hoping for the best. My Mom is my best friend and I want to help her in any way I can, I just don’t really know what to do.October 17, 2008 at 4:47 pm #23359lisaParticipant
I am also on Gemzar/Xeloda with a two week on, one week off schedule. My tumor shrunk 50% in the first few months, but now things have stablized over the past year. It’s hard to say what the most effective treatment is, as people vary in their response to the chemo. There is a lot of trial and error involved, which is hard to accept when you’re fighting for your life.October 17, 2008 at 2:54 pm #23358michelle-tParticipant
I am currently on gemcitabine injection once a week and 3 Xeloda pills 2 times a day for 14 days then a week off. This was the first course of treatment for me. Unfortunately after 2 rounds my scans showed that the tumors were not decreasing in size. My doctor decided to have me go another two rounds and my scans are coming up next week hopefully the tumors will be smaller. My blood work has been fine however the side effects were very difficult for me but I am now getting into a schedule were I can get things done around the side effects. I am not sure if the side effects are any different from other treatments as this was the first type that I have had.October 7, 2008 at 5:38 pm #23357jeffgMember
It sounds logical to me as well, as long as whatever regimen is working and /or maintianing staus quo. Also ,the most important is keeping a self inventory on your blood work and weight. If those platelets,WBC’s and RBC’, neutrophilss are dropping in to unchartered territory, I personally would call a time out. As once they get sucked down to a certain level you may not be able to recover fully. My next round of blood work without chemo for appeoximately 4 months, will be the 20th of this month. It will be interesting to see what my kevels are. Listen to your body not you muscles. Your muscle tissue will carry you quite a distance in my opinion. I’ ve been reviewing my past treatments and coming up with a few what if’s. Which I’ll share as I keep trucking on.
Jeff G.October 7, 2008 at 5:17 pm #23356marionsModerator
You might also want to try the “search forum” on top of bar. If you enter “Xeloda” or “Gemcitabine” you will be able to peruse other postings in re: to these to therapies. There is a wealth of information hidden in the previous postings getting to it might be time consuming however, it is well worth it. Good luck.October 7, 2008 at 1:02 pm #23355rjodayMember
Thanks so much for the feedback!October 7, 2008 at 7:28 am #23354violarobMember
This sounds like a logical plan. I am now on gemcitabine + cisplatin (and tarceva pill every day). My onco said that when/if this combination ceases to be effective, his next line of defense would be to change to gemcitabine + Xeloda. However, I have not gotten to that point, so don’t have first-hand experience to relate. Anyone else out there want to weigh in on this one? Jeff?
Violarob in TexasOctober 6, 2008 at 6:38 pm #1626rjodayMember
Please let me know your experiences with Gemcitabine + Xeloda.
Cholangciocarcinoma patient was having success with Gemcitabine + Cisplatin (tumor shrinkage and ca 19-9 down dramatically), however, now has recent mets to lungs.
Doctor is now wanting to try Gem + Xeloda.
Thanks so much for your advice/experiences.
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