One patient with glioblastoma still alive nine years later
by Eliot1 on Sat Mar 08, 2008 12:00 AM
Just a little post of good news. It seems hard to believe that my partner Rick will be having his 16th chemo treatment of Oxaliplatin, Epirubicin, and Xeloda on the 21st of March of 2008. We passed the one year mark of diagnosis Stage IV, non-operable gastric cancer on February 1st, 2008. (Who would have thought, huh?) Just one observation about our last treatment, our oncologist told us we will have to stop the Epirubicin at the 18th treatment, due to increased risk of cardio-myopathy. We sure don't need heart problems on top of Gastric Cancer, right? Still on the same drug regimen as when we started chemo almost a year ago, minimal side effects and still feeling great. No mets detectable by CT scans. Almost to the point of not really feeling like he could be ill. After the 18th treatment, we will just stop the Epirubicin and continue on with the Oxaliplatin and Xeloda. She tells us really we are in uncharted territory, as he has outlived ALL of the gastric patients she has EVER treated. Don't ever let ANYONE tell you or your loved one that you must succumb to this terrible disease in a specified period of time. While everyone is different, with God, Love, Family, Peace and something to look forward to, you can have excellent quality of life while you are here on this earth with this nasty cancer. Just wanted to let any of you on Epirubicin know about the 18th treatment limit, as this was the first we have heard about the heart issue. Hope, and Love and Prayers to all of you making this same journey.
by momwithkids on Sat Mar 08, 2008 12:00 AM
Thats great news. Certain the good news will keep on coming for you both. My 43 year old wife is also quickly approaching the one year mark for non-operatable stage IV stomach cancer. Since her diagnosis in March of last year she has been on a constant regimen. However, her original treatment of ECF lasted only 8 rounds (3 week each) and then we switched to Oxaliplatin and Xeloda. Just recently we switched off the Xeloda (she developed a blood clot) and went back to the 5FU.
So far, so good. She was placed in remission in August of 07 (4 months post diagnosis) and she remains in remission today.
Again, another success story and we are glad to hears yours. Keep it up.
?, are they recommending your partner stay on chemo post the one year mark and if so for how long. We have received one recommendation that she continue on at least the 5fu for another 3-6 months bringing the treatment total to 18 months??? Just wondering.
Thanks, and nice job!
by lippygirl on Sat Mar 08, 2008 12:00 AM
by Eliot1 on Sun Mar 09, 2008 12:00 AM
So glad to hear your Dad is hanging in there. I don't remember if I mentioned to you earlier (my mind is retaining less and less lately), but we did change our Xeloda doses quite a while back to lessen some side effects. We went to 500mg pills, two in the morning and two in the evening, but, only for 10 days starting with the IV treatments. This then gives us 11 days or 18 days OFF the Xeloda (depending on whether we are doing a 3 week cycle or 4 week cycle). We also did change the IV's to 3 to 4 weeks depending on neutrofil counts vs. CA19 tumor markers. 3 weeks are usually better for the tumor markers and tougher on the white blood cell counts. It has also helped Rick feel better on the long cycles for travel. We have recently been going 3,4,3,4 etc. and so far seems to be working well and he is usually just tired for a couple of days after infusion. Check with Dad's doctor to see if some schedule change might be of use for him. Hang in there and keep the faith.......
Love and Peace,
So glad to hear Lisa is still doing well ! What a miracle life can be. As far as your question about how long to keep doing chemo, it is our understanding that we will continue doing them until he can't take anymore. I know that is not much of an answer, and we have no way of knowing when you can't take anymore. I get the feeling that when the chemo starts making him really feel ill, that is when our "Quality of Life" issues will arise, and we will stop those treatments at that time. At the rate we are going, God alone knows when that could be. As the longest lasting Gastric cancer patient at Rocky Mountain Cancer Center, we really have no known protocol at this point, so we just go day to day, treatment to treatment. Sorry I couldn't give you a better answer to your question, the truth is we just don't have an answer. Keep up the good works with Lisa, and I hope the kids are doing as well as they can. With your help I am sure they are in good hands.
Warmest Peace to you and Lisa,
One other thing regarding side effects to Xeloda, we have been doing 100mg of B-6 vitamin twice a day to help with the side effect of neuropathy (particularly in the hands). It seemed to have helped so we have just continued that for the last 9 months. If it isn't broke don't fix it I guess. Sorry I didn't get this into the above post, (again thinking is a little slower these days, lol). See ya, S
by ladyboom on Wed Mar 12, 2008 12:00 AM
I was wondering how your partner was doing! I'm really happy for you both. Thank you for remembering to come to the board and share your story...that was thoughtful.
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