CancerCompass message board discussion started by Oby T. on 7/23/2003 http://www.cancercompass.com/message-board/message/all,373,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I would love to hear from other women who have or had ovarian cancer. I was diagnosed 07/00 with Stage III ovarian cancer. I had one reoccurrence 01/02, and a second reoccurrence 08/02. I have been taking Topotecan treatments since 08/02 and so far, it has been doing an excellent job of "keeping my cancer under control." I very rarely meet other women who also have or had ovarian cancer, although I did discover "Conversations" (a 'mailed' monthly newsletter about ovarian cancer) a year and a half ago. So if you're out there and would like to perhaps establish an online 'support group' for women with ovarian cancer -- let's get together! After all, we NEED each other! Love you all! Oby Naperville, IL Oby T. Wed, 23 Jul 2003 00:00:00 GMT Oby, Look at the 7/23/03 Topic "Surviving Ovarian Cancer" Lots of information. Good luck Anna August Z. Wed, 23 Jul 2003 00:00:00 GMT Hi, my name is Peggy B. I was diagnosed with ovarian cancer in June of 2003. I have had 2 chemos, taking taxol and paraplatin (carboplatin). I am Stage III, grade III with only my ovaries and omentum affected. I have undergone 2 chemos and have not had any side effects so far. I am 53 years old. There is no family history of cancer on either side of my family. This has been so hard for my 5 children and my husband. I thank you for wanting to speak with others who have this disease. There are so few of us out there. Take care and God Bless. Peggy Peggy B. Thu, 21 Aug 2003 00:00:00 GMT Peggy I still haven't been "officially" diagnoised until Wed. Sept. 10th (when I FINALLY get to see a gyno/oncologist). My CA-125's have been rising rapidly first 64 then 82 (within a month), a 1.5 cm mass inside and outside my right ovary. I have the bloating, gas, bowel problems, throwing up, extreme pain (it feels like I'm having a baby), and I have an extreme case of Lupus SLE. I keep hearing that I have to have chemo after surgery but I just can't bare that. Most of my "close" family memebers (on both sides) have had some kind of cancer. I am only 35 (36 next month) and I have had these symptoms for years (except for the CA levels-I didn't know about that test until I read about it and DEMANDED it because my Dr. kept telling me I was too young to have ovarian cancer). It's just the pain is so extreme now and comes on suddenly and I even have to lay down stradle legged because it really feels like I'm having a baby. I've even resorted to doing lamaze breathing. I would love to talk to you about your experiences. Like I said before I cannot have chemo so, is there anything else after the surgery that can be done besides chemo. Thanks for listening. God Bless, Lisa Lisa L. Tue, 09 Sep 2003 00:00:00 GMT Hi Lisa, I was diagnosed at age 35 with stage 3b ovarian cancer. My first CA-125 was 1506 and I was bloated to where I looked 5 months pregnant, but I had no pain. By the time I had surgery they did another CA-125 and it had risen to 1985. I'm considered high risk. I had 6 treatments with taxol/carboplatin therapy and another 12 treatments of taxol. The chemo treatments were not as bad as I had thought or heard about. They do have meds for nausea that work quite well. As of now my CA-125 is at 20 it is rising but it is still under 35 and I am doing fine. God Bless you and your family, Rhonda Rhonda R. Fri, 21 May 2004 00:00:00 GMT I have a lengthy message under "want to talk to other people with ovarian cancer" subject. Check it out. The screen name is Jolene. Joli d. Sun, 08 Aug 2004 00:00:00 GMT Dear OBY, You say you have received the topotecan since 8/02. How often do you have to get a treatment? Do you then get a break or is it ongoing? What has your quality of life been like? I had my first surgery in December of 2002. I was in stage two C. Then I took carbo/taxol for three months and carbo/cisplatin for three months. My CA125 dropped to 9 which was great. Then in December 2003 it jumped to 19 and then kept climbing. We tried two treatments of carboplatin, then hormone pills for two months then I had a second surgery in June of this year and they got all the cancer they could find and repaired a hernia and now Doxil, which is horrible and I am not sure if it is working or not. I will find out in November when I return to MD Anderson in Houston. I have read so much about topotecan so would love to hear back from you. Thanks and God Bless, Marsha Marsha Wiele W. Wed, 13 Oct 2004 00:00:00 GMT Hi there, I just read your email on the message board. Wondering how you are doing? I think that I would be interested in belonging to a group of women who have or had ovarian cancer. Are you still interested in doing that? Maybe we could communicate this way and you could send me a message about this. Thank you for your time. Marlane in AZ Marlane B. Sun, 09 Jan 2005 00:00:00 GMT Hi Oby, My mom was diagnosed with stage 3A ovarian cancer in November 2004. They believe her cancer has reoccurred. We will not find out until Wednesday, but I found hope in your email. Could you tell me more about Topotecan and any other information you have learned that may be helpful to my mom? I applaud you for your courage as my mom has amazed me with hers. Dml00 Thu, 20 Apr 2006 00:00:00 GMT Oby -- I was glad to stumble across your message and know there are others wondering the same thing and to know there is hope. I was diagnosed with stage III type 2 Ovarian cancer November 14, 2005. I had been telling my gyn for two years there was something inside me that did not belong but because I had a complete hysterectomy in 1993 ovarian cancer was not considered. My last visit with the gyn of history was June 21, 2005 and once again I expressed my same concern. I could barely stand the exam due to the pain; had severe extension of the abdomen area; nausea and weight gain. The gyn ordered an ultra sound just to pacify me. The results I was provided by gyn was there was "some fluid and thickening of the wall of the liver, nothing to concern myself with". I was in process of relocating and also traveling back and forth to Oklahoma as my father was seriously ill. He passed in September and after I returned to Texas I became very ill. Vomitting all the time and could not sleep except in upright position. I could not wear any of my clothes and went to another doctor just as a need for relief of whatever was going on. He sent me for a CT and then another was done before I left the same day. The next day he had me scheduled for surgery but the gastreonoloist wanted to see me first and after doing so he scheduled me for outpatient to have the fluid in the abdomen drained. I ended up in the ER before the scheduled procedure and they performed (removed over 7 liters)and then started asking me all kinds of questions. The CA125 count was 6,892 and they sent me to oncologist. He scheduled me for surgery immediately and I was in the hospital for one week but already feeling much better. Then came the cancer word and it took me awhile to accept. I went into a research program for my chemo and had gemzar and carboplatin instead of taxol. The gemzar is less toxic and so my nausea was very minimal and I only experienced thinning of my hair. I did become very anemic and took injections of aranesp every two weeks. My treatments were two weeks on, one week of rest and start again. I started December 8,2005 and completed chemo March 30,2006. I go next Wednesday for my check up and I am really scared but you are encouragement. Thank you. L. Buttrfliok Wed, 05 Jul 2006 00:00:00 GMT