CancerCompass message board discussion started by Andrea F. on 6/4/2003 http://www.cancercompass.com/message-board/message/all,351,0.htm Sun, 06 Jul 2008 00:00:00 GMT Sun, 06 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello, I had been diagnosed with stage 3-C ovarian cancer July '02. After a hysterectomy & 6 rounds of chemo, my cancer marker (CA-125) decreased from 285 to 39, then by increments to a low of 10 6 months ago. However, the last two tests taken in April and on 6/2/03 had it rising to 13, then 17. Is this a sign that the cancer is trying to come back? The nurse called & they want to do another test in one month. She did not elaborate on the possible reasons for the fluctuation. Anyone else out there with a similar situation, but the rise was not due to recurrence of cancer? Thanks, Andrea Andrea F. Wed, 04 Jun 2003 00:00:00 GMT My best advice is to relax and enjoy your remission. CA125 is not always a reliable marker for all of us. The only way to be sure that you have recurrent disease would be to have a CT or PET scan. Your doctor will probably not order one until/if your CA 125 rises above 35. Mine recurred within 6 months and I pretty much knew it was back. I was tired all the time and had similar abdominal pains to those before surgery. When and if it comes back, you will know. As long as you feel well, enjoy everything. Sherry Y. Fri, 06 Jun 2003 00:00:00 GMT My oncologist said not to rely to much on the CA-125 results if they go up a little, the tests are not real accurate. He said as long as I am feeling good and have no symptoms I should not be concerned. (That is as long as the test remains below 35.) Also I would ask if he would order a CT as a part of your next check up. I had a CT after 1 yr and all was clear. Always pays to ask, it is your body and your health. Hope that helps you. Minnie minnie p. Tue, 10 Jun 2003 00:00:00 GMT Hi Sherry, how have you been since you posted that after remission, your CA-125 has started to rise again and that you are getting pre-surgery symptoms? I had surgery Sept. '03 CA125 at 151 then now less than 1% but now feeling many symptoms returning. Have my checkup coming up in 2 weeks and getting stressed again. Please let us know what has been happening in your life since your last post and how you are doing now. Joan S. Fri, 13 Aug 2004 00:00:00 GMT I had surgery for ovarian cancer in November of 2003. I had 6 treatments of chemo. I feel great. I do get concerned about my blood work because when I had cancer the blood work came back normal. So I am not depending on that test 100 percent. Cancer is always in the back of mind but I don't let it consume me. I think we all have fears but together we can help each other when some days are not ask easy as others. I am for that. Is anyone out that there that would like support. I sure would. Thanks for listening. Marlane Marlane B. Tue, 17 Aug 2004 00:00:00 GMT I am a 53 year young wife and mother of two. I just passed my two year mark from my last chemo. I was diagnosed in Jan. '02 with stage IV Ovarian Cancer. It had gone into my lung and my CA 125 was about 400. Since ending my chemo my CA125 stayed pretty much in the single digits until six months ago. It then hit 17, then popped up to 31. In the meantime I had a CT and it showed a single 2" mass. Four months later it had grown slightly. Biopsy showed a return of the cancer. So, now I "know the ropes" so to speak and will get back on chemo. BYE,BYE hair, taste and appetite. Also, bye bye to social gatherings for the sake of staying away from diseases. (winter is coming). But, I can do this; I did it before. I am getting my ducks in a row such as getting my house clean and my son's teachers aware of what is happening so they are easier on him in school. I get my funny videos lined up and a few good friends that don't mind wearing a surgical mask if necessary to visit me. I will take my compazine and my supplements (no anti-oxidants during chemo). I will quit sugar too; but fruit will be my main sweet. I will eat well, drink a lot of water and laugh a lot and be thankful for the Lord and his mercy and grace on me. Oh, and I will be thankful for the churchs that are praying for me. I will enjoy my sons (ages 20 and 13). I will adore my husband and let him dote on me. I have many beautiful wigs and hats and I look good in them all. I will stay possitive. I will live life abundantly and look forward-not backward. I will care about others more than myself and put my trust in the One who made me, loves me and gave his all for me. What more could I ask? If the blues try and creep up on me I will not let them. This is my life and I will not let any negative thing overcome me. When the chemo needle goes in I will joke with my nurse as my friends pray for me. I will try and bless the other women in the room and tell them how good they look and touch their arm when I shuffle by with my chemo pole to go to the bathroom. I'll share jokes with them if they want to hear them too. I will refuse to get stressed and I will read my Bible and believe it. God loves us and the best is yet to come. I will also keep my ear to the ground for the latest and greatest treatments. Maybe I will look into the new vaccine trial that is in vogue now. My friend had it and she is showing cancer resistance in her tests. Yes, after this round of chemo I will try that. Maybe. Has anyone had experience with trials like the vaccine? Do you have details? Karen53 Tue, 14 Sep 2004 00:00:00 GMT Hi Karen, I just read your post and was very touched by your sensitivity, your beliefs and your acceptance of what is ahead of you with your new bout with this darned disease. I hope you will stay in touch with us and let us know how your treatments are going. You have a wonderful support group behind you and I know that will be a big help in getting over this hurdle. Please keep us posted on how things are going for you. Praying that this treatment goes smoothly for you. Have the best Thanksgiving you can with those you love close by. Wish I had information on the vaccine trials, there is always something on the horizon and hope is a steady companion for us. Much Love, many Hugs...JoanMarie Joan S. Tue, 23 Nov 2004 00:00:00 GMT  On 11/23/2004 Joan S. wrote:Hi Karen, I just read your post and was very touched by your sensitivity, your beliefs and your acceptance of what is ahead of you with your new bout with this darned disease. I hope you will stay in touch with us and let us know how your treatments are going. You have a wonderful support group behind you and I know that will be a big help in getting over this hurdle. Please keep us posted on how things are going for you. Praying that this treatment goes smoothly for you. Have the best Thanksgiving you can with those you love close by. Wish I had information on the vaccine trials, there is always something on the horizon and hope is a steady companion for us. Much Love, many Hugs...JoanMarie Hi. My name is Diane and I was diagnosed with Ovarian Cancer in August.  I had my hysterectomy and went thru my 6 trearments.  I finished about a month ago.  My PET Scan showed that I was Cancer Free.  I was very brave thru this whoe thig, but now that everything is over, I have become so frightened of it coming back.  Physically I am getting so much better, but mentally I am getting very depressed.  Can someone please talk to me.  I woulg appreciate it.  My husband is falling apart also..Thanks. luckykeno2 Tue, 29 Jan 2008 00:00:00 GMT Hi Diane, I just recieved the notice that you had written.  I am at work right now and unable to write much at this time but will respond later this evening.  I'm in CA and hope I can give you support for this stressful time in your life.  In the mean time if you could write where you live? How old you are and what stage of OVCA you were diagnoised with?  You can write me directly at --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- if you prefer or on this list.  Either way I'll get your letter and answer as soon as I can.  So, Until later today.......I send big hugs.  Joan MarieOn 1/29/2008 luckykeno2 wrote: On 11/23/2004 Joan S. wrote:Hi Karen, I just read your post and was very touched by your sensitivity, your beliefs and your acceptance of what is ahead of you with your new bout with this darned disease. I hope you will stay in touch with us and let us know how your treatments are going. You have a wonderful support group behind you and I know that will be a big help in getting over this hurdle. Please keep us posted on how things are going for you. Praying that this treatment goes smoothly for you. Have the best Thanksgiving you can with those you love close by. Wish I had information on the vaccine trials, there is always something on the horizon and hope is a steady companion for us. Much Love, many Hugs...JoanMarie Hi. My name is Diane and I was diagnosed with Ovarian Cancer in August.  I had my hysterectomy and went thru my 6 trearments.  I finished about a month ago.  My PET Scan showed that I was Cancer Free.  I was very brave thru this whoe thig, but now that everything is over, I have become so frightened of it coming back.  Physically I am getting so much better, but mentally I am getting very depressed.  Can someone please talk to me.  I woulg appreciate it.  My husband is falling apart also..Thanks.  Joan S. Wed, 30 Jan 2008 00:00:00 GMT  Good Evening Diane,  I want to tell you that worrying is part of the cancer lifestyle, but It does go away after a while.  I was diagnoised in 9-03 with stage III OVCA and it's now almost 5 years since then.  Every 3 months I  get the scans and the blood tests and worry more.  I do have the cancer back but it's very slow growing and does not cause any pain or symptoms.  We're doing the "watchful waiting" and I've pretty much stopped thinking about the disease as part of my life.   Did you receive my earlier letter asking about your staging, your age and what part of the country you live in?  Please feel free to write back and ask questions.  I'll do anything I can to help you and give you referrals to other sites I've found helpful.  I found that having all the information I could possibly get, all my reports and scans gave me more power over this disease and also I know my options for treatment.  I have a wonderful Oncologist who supports my decisions, talks openly about test results and helps give me the strength to "live with cancer", to get back to being alive and enjoying every moment.  Please write when you can.  Wishing you strength, it comes bigger every day! Joan MarieOn 1/29/2008 luckykeno2 wrote: On 11/23/2004 Joan S. wrote:Hi Karen, I just read your post and was very touched by your sensitivity, your beliefs and your acceptance of what is ahead of you with your new bout with this darned disease. I hope you will stay in touch with us and let us know how your treatments are going. You have a wonderful support group behind you and I know that will be a big help in getting over this hurdle. Please keep us posted on how things are going for you. Praying that this treatment goes smoothly for you. Have the best Thanksgiving you can with those you love close by. Wish I had information on the vaccine trials, there is always something on the horizon and hope is a steady companion for us. Much Love, many Hugs...JoanMarie Hi. My name is Diane and I was diagnosed with Ovarian Cancer in August.  I had my hysterectomy and went thru my 6 trearments.  I finished about a month ago.  My PET Scan showed that I was Cancer Free.  I was very brave thru this whoe thig, but now that everything is over, I have become so frightened of it coming back.  Physically I am getting so much better, but mentally I am getting very depressed.  Can someone please talk to me.  I woulg appreciate it.  My husband is falling apart also..Thanks.  Joan S. Wed, 30 Jan 2008 00:00:00 GMT Hi,  sorry I didnt reply back sooner, but between my kids and my husband, I dont get on the computer too often.  I am 56 years old and had stage III Ovarian Cancer.  I am from New York.  I am not really sure how to reply to this message board.  I hope everyone is okay.  My Chemo ended about 5 weeks ago and I had a PET Scan and all was good, Thank God.  I am so scared everyday.  Any little pain or ached that I get, I think the Cancer is back.  I am slowly starting to feel better mentally, I guess it take time.  My Dr will give a PET Scan every 3 months I think.  I know he will take the CA125 every 3 months.  I will write again.  I am due to go for a checkup next week.Thanks for listeningDiane        luckykeno2 Tue, 05 Feb 2008 00:00:00 GMT Hi again, I sent another message, but I dont know if I am posting correctly.  I am not very good with a computer.  I am 56 years old, I had between stage II and III Ovarian Cancer.  I went through all the Chemo and physically I am doing good.  I still feel tired and my feet and fingers are still numb.  how long after the Chemo did you feel yourself again.  I finished my Chemo about 5 weeks ago..  I have to go to my Oncologist once a month just to clean out the port and I am going to have blood taken every 3 months.  My Dr. will repeat the PET SCAN in 3 to 6 months. Let me know how you are doing.  I noticed that the dates of some of the messages are from 2004, does anyone still chat here.  I sure hope so. ThanksDiane luckykeno2 Tue, 05 Feb 2008 00:00:00 GMT Hi Diane,Glad you finished your treatment.  I finished my treatment 2 years ago (stage 2 colon cancer) I am 49 years old.  My feet are still numb but my fingers are getting better.   Sounds like you are doing okay.  It is kind of scary but hang in there.  If you ever need someone to talk to this is a good place I think.Think positive !Good luck to you,Judy   Enggal Thu, 15 May 2008 00:00:00 GMT Hi Diane,I know it's a while since you posted, however I just wanted to say that I'm a naturopath working in Australia with some women who have been diagnosed with ovarian cancer.  It can be really helpful to get a referral to a psychologist or hypnotherapist to help cope with managing your emotions and for added support.  If you are in Australia, a referral from your gp will get you 6-12 sessions with a clinical psychologist which is covered by Medicare. Kindest regards,Angela. Aussie naturopath Fri, 06 Jun 2008 00:00:00 GMT