CancerCompass message board discussion started by Ifeellikegoingon on 9/16/2005 http://www.cancercompass.com/message-board/message/all,2974,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Greetings, Ladies, I was initially diagnosed in November 2002, treated with taxol and carboplatin, in remission for two years, had a recurrence this past January, treated again with taxol, and supposedly went into remission again. In July 2005 my CA 125 was 5.4, my cat scans were normal. This week, my CA 125 clocked in at 668 (the highest it's ever been) and the Wednesday's cat scan shows evidence of disease in the pleura around both lungs, down the stynum, on or in the liver, in the abdomen . . . I belong to a support group but even the facilitator admits that they often "dance around" the fear and the pain. I have a deep faith, but I don't waltz into utter assurance that my prayers will be answered as I wish. Many pray earnestly and die. Many do all that they can think to do, consultations, alternative treatments, and they do not continue living. It is just this lack of control that has me reeling right now, so please forgive me if I blaze into your midst with all this angst. There just has to be someplace where I can be completely honest about what I'm going through . . . I have been blessed these past three years. I almost died the first time around. A second debilitating disease immobilized me for months. At least this time I'm still able to walk, to feed myself, to hug my daughter. This time I can make some choices about what to eat, I can cook for myself . . . I'm going to adopt many of your nutritional advice because it rings very, very true to me. The body needs help to fight this beast. Now is not the time to be lazy about exercise (nor to overdo it) or to be undisciplined about eating a healthy diet. What has me absolutely befuddled, however, is the selection of a chemical agent. Out of the half dozen women in my support group who are getting treatment right now, each of them are on something different! It seems as if there is no way to know what will work for you except by trial and error, and that takes time, and time is something of a precious commodity when the little farts get aggressive with their take-over plans. I recommended an assay test when I had the first recurrence but there was not enough "tumor" available to test. I'll bet there is now, so I'll recommend that again . . . If anyone knows of some standard by which their doc chose one chem over another, I am all ears . . . I think this is where prayer counts heaviest in my case: first, may I find the strength to take good care of myself with rest, good food, and practiced calm; and secondly, may God guide my care providers to the right instrument of healing. My daughter is only ten. I'm a single mother. I want so badly to see her off to college. And besides that, life is so very precious, the world for all its woe is so very beautiful . . . I'm not ready to die, not nearly . . . Thank you for being patient with me. Please forgive me for being so raw here. We can't call it courage if we never admit being afraid, huh? Ifeellikegoingon Fri, 16 Sep 2005 00:00:00 GMT Does your daughter have family to be with? Do you need a loving family for your child once this is over? Talk to me, let's figure out what we can do together....adoption? let's talk Hopefully Fri, 16 Sep 2005 00:00:00 GMT Thank you, Hopefully, for asking about my daughter . . . My answer to your question is a little complex. Her father and I were never married. She visits him every other weekend, and spends a month with him each summer. He married a good woman who unfortunately does not have a good relationship with Ramona. As Ramona matures into a wise, attractive, remarkably intelligent young woman -- her "stepmother" seems to become more and more threatened . . . I have sole legal custody . . . Though he may be offended that I would choose someone else to be Ramona's guardian, her dad might not fight it in court because 1) he's cheap; 2) he really doesn't want to have his life completely disrupted by a child which is why we split up; 3) if things could remain the way they are now, meaning if he could still see her regularly, he might feel as if he'd only lose a slice of self-respect, but nothing more and let it go at that . . . In an earlier version of my will, I stipulated that another woman would become my daughter's guardian, but she's married someone now who is not up for that. I have a second choice, another fine friend, who actually moved in with Ramona and me when I was first stricken and stayed with us for five months. We talked about the possibility of her becoming Ramona's legal guardian before this most recent recurrence. It's something Ramona would like, but the three of us haven't talked it through . . . Perhaps now is the time . . . No. No "perhaps" about it. Now is the time . . . Just like now is the time for that living will and power of attorney stuff, isn't it? Where does one start with all that? Ifeellikegoingon Sat, 17 Sep 2005 00:00:00 GMT Dear Delle C., I just read your two posts on this board and wanted to tell you to keep hope alive while you fight. There are lots of us ladies out here who have been battling this disease for years with different chemos. Your are already ahead of me by one year! I was diagnoised 9-2003 with stage III. It was all over my abdomen and quite large. Luckily it had not grown into any major organ and the surgeon was able to clean me up pretty darn good. I am now 57 and my CA-125 has been at less than 2 for nearly 2 years. The highest it got was 151. It has been a month since you posted, how are you doing? What meds did they decide for you? I hear lots of women go on Doxil. Oh, and you might want to check out ACOR online for ovarian cancer -there are quite a few ladies who post daily with a wealth of information at your fingertips..good ideas and excellent support for each other. I have it emailed to me and try to keep up as best I can. During a routine CT scan in August they found a nodule on one of my lungs, and two more tiny ones on the upper left and right lung. This month the report says I am "stable". We are monitoring these for growth. CA125 still at 2. They won't start any chemo until they know if it is cancer and the largest one at 13mm is too small, they say, to biopsy - 50/50 chance of missing it altogether. So, I'll wait another 3 months and have the CT done again....sometimes these things just fade away not being related to the disease we had. I am praying this happens. You can write to me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- if you want to talk more off this board. Sounds like you have a wonderful friend in the lady who stayed with you...and took care of your daughter also. I did the Will thing too, the day before my surgery! I was so scared that was the end, I'd never wake up. But I did and it's been good these past 2 years. Keep praying and think positively, exercise (I should do this!)and eat right can only help. Hugs! JoanMarie Joan S. Sun, 16 Oct 2005 00:00:00 GMT