CancerCompass message board discussion started by pauldancer on 2/12/2008 http://www.cancercompass.com/message-board/message/all,20877,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Thank God I found this discussion board.  I was just diagnosed with ovarian cancer a couple of days ago and have an appointment with a gynocological oncologist tomorrow.  Because of the experience you all have had with this disease and I am a newbie can you tell me if an extraordinarily high ca-125 is indicative of a more advanced cancer?  I need the truth, please, as you know it.  Thanks. pauldancer Tue, 12 Feb 2008 00:00:00 GMT I am not sure if you can really draw that conclusion, because the CA 125 is a fairly non specific test. The doctors do tend to use it though to monitor response to therapy though, so your concerns are fairly well founded. Before you panic though,start researching your treatment options. Your overall response will likely be better determined by the treatment options you choose than your starting CA125.I would highly encourage you to get to a cancer center, discuss intraperitoneal therapy with your oncologist, and if they are not familiar with it, I would find some one that is comfortable with the treatment and does it routinely. Might also consider clinical trial at MD Anderson using high dose chemotherapy and stem cell transplant and also look into a trial at Mayo Clinic using the measles vacc. God bless you. This message board is alot of help dgt123 Tue, 12 Feb 2008 00:00:00 GMT  On 2/12/2008 dgt123 wrote:I am not sure if you can really draw that conclusion, because the CA 125 is a fairly non specific test. The doctors do tend to use it though to monitor response to therapy though, so your concerns are fairly well founded. Before you panic though,start researching your treatment options. Your overall response will likely be better determined by the treatment options you choose than your starting CA125.I would highly encourage you to get to a cancer center, discuss intraperitoneal therapy with your oncologist, and if they are not familiar with it, I would find some one that is comfortable with the treatment and does it routinely. Might also consider clinical trial at MD Anderson using high dose chemotherapy and stem cell transplant and also look into a trial at Mayo Clinic using the measles vacc. God bless you. This message board is alot of helpCan you elaborate on what you mean by a clinical trial at "MD Anderson" (what is that?) and can you discuss further the Mayo clinic using the measles vaccine? or direct me as to how I can research this on my own. This is the first I've heard of this.  I'm awaiting an appointment with Dana-Farber in Boston which has a tremendous reputation.  Just don't know if I can get in.  Thank you for your time and support.  I am truly appreciative. pauldancer Tue, 12 Feb 2008 00:00:00 GMT Since stem cell transplant is still experimental according to insurance companies, the only way to get them to pay for it is if you are in a clinical trial (Obviously I am talking generalities here and might be wrong) The best way to check it out is to visit their web site MD Anderson and get info on the trials. I think they are doing two separate trials right now, one that is for newly diagnosed ovarian carcinoma and one for recurrent disease. The trial using the measles vaccine at Mayo looks pretty cool too. Same thing, visit their web site or google measles vaccine and ovarian cancer. The only info on them I have is what I read on the web site. They will only accept people for the measles vacc trial that have disease limited to the abdominal cavity (at least that is what I have read and been told). Farber is a great cancer clinic. I am sure they are well versed in intra peritoneal chemotherapy dgt123 Tue, 12 Feb 2008 00:00:00 GMT  On 2/12/2008 pauldancer wrote:Thank God I found this discussion board.  I was just diagnosed with ovarian cancer a couple of days ago and have an appointment with a gynocological oncologist tomorrow.  Because of the experience you all have had with this disease and I am a newbie can you tell me if an extraordinarily high ca-125 is indicative of a more advanced cancer?  I need the truth, please, as you know it.  Thanks.Hi -The CA 125 is not always indicative of advanced cancer. My CA125 at diagnosis was 780 (relatively low) and I was a stage IV. I was dx'd in 2004 and have relapsed and cannot seem to get a remission. My highest CA125 during Chemo has been 9. So do not place too much emphasis on this test. Just use it as a guideline ( ie: going up and down). Good luck to you and keep your spirits up!!!Diane T Diane t. Tue, 12 Feb 2008 00:00:00 GMT Hi.First of all... don't panic.  I know it's hard not to, my mother also has an ovarian cancer stage 4 and was only diagnosed last october 2007 and she is undergoing her 5th chemo.  Her CA-125 keeps going up and down which gets her and us all depress, but the doctor reminded us that the CA-125 is not an accurate test for cancer but just their GUIDE, the doctor might / will let you have a CT-SCAN or PETSCAN so they can see what's happening IN there.. CA-125 level may go up if there is an infection, monthly period, pregnant, etc.Always pray to God.  Trust and believe him and everything will be alright.The first doctor told us that everything that happens to us has a reason.The 2nd doc told us that my mom has this disease to teach all of us a lesson to be patient, learn to relax and not stress on things too much.  God bless and take care of yourself.Be positive.  pie2008 Wed, 13 Feb 2008 00:00:00 GMT  On 2/12/2008 dgt123 wrote:Since stem cell transplant is still experimental according to insurance companies, the only way to get them to pay for it is if you are in a clinical trial (Obviously I am talking generalities here and might be wrong) The best way to check it out is to visit their web site MD Anderson and get info on the trials. I think they are doing two separate trials right now, one that is for newly diagnosed ovarian carcinoma and one for recurrent disease. The trial using the measles vaccine at Mayo looks pretty cool too. Same thing, visit their web site or google measles vaccine and ovarian cancer. The only info on them I have is what I read on the web site. They will only accept people for the measles vacc trial that have disease limited to the abdominal cavity (at least that is what I have read and been told). Farber is a great cancer clinic. I am sure they are well versed in intra peritoneal chemotherapyThanks so much. pauldancer Wed, 13 Feb 2008 00:00:00 GMT I'm wishing you all the best.Did the doctor diagnose you on an elevated CA125 alone?There are other reasons for elevations. Njtwinmom Wed, 13 Feb 2008 00:00:00 GMT  On 2/13/2008 Njtwinmom wrote:I'm wishing you all the best.Did the doctor diagnose you on an elevated CA125 alone?There are other reasons for elevations.No.  I had a pelvic ultrasound, a pelvic MRI and an abdominal MRI as well. It's looking like an advanced ovarian cancer so they want to do exploratory in addition to a definite debulking.  I was very much impressed with the gynocological oncologist that I consulted with from a very well respected hospital but will get a second opinion from Dana-Farber in Boston (a super facility for cancer treatment) next thursday.  pauldancer Fri, 15 Feb 2008 00:00:00 GMT hang tight , keep your spirts up, think possitive,and good luck ,i hear boston is a great hospital too. i went to dartmouth when i found out i had ovarian cancer mine was at stage 2 i had adult granulosa cell tumor cancer, i had my surgery 6 months ago i will soon be going bk for my check up in a few weeks,i know its scarey ,its a rough road but u can do it. this is a wonderful site to get info from and tlk to others that have gone threw the same thing as ur about to go threw.did  they say  wht kind ur was as  i think there are diffrent kinds of ovarian cancer, they reomved both of my overies my flopian tubes my appendix, and  another spot of cancer htat was on my intestines,  i had cancer in both overiesbut i am doing great now ,i am on arimdex now  for 2 yrs i think and it will help me from getting breast cancer we hope as ovarian and breast cancer are related  and my sister had breast cancer 3 months before  i was told i had ovarian , good luck and  my thoughts are with you freeatlast Fri, 15 Feb 2008 00:00:00 GMT  On 2/15/2008 freeatlast wrote:hang tight , keep your spirts up, think possitive,and good luck ,i hear boston is a great hospital too. i went to dartmouth when i found out i had ovarian cancer mine was at stage 2 i had adult granulosa cell tumor cancer, i had my surgery 6 months ago i will soon be going bk for my check up in a few weeks,i know its scarey ,its a rough road but u can do it. this is a wonderful site to get info from and tlk to others that have gone threw the same thing as ur about to go threw.did  they say  wht kind ur was as  i think there are diffrent kinds of ovarian cancer, they reomved both of my overies my flopian tubes my appendix, and  another spot of cancer htat was on my intestines,  i had cancer in both overiesbut i am doing great now ,i am on arimdex now  for 2 yrs i think and it will help me from getting breast cancer we hope as ovarian and breast cancer are related  and my sister had breast cancer 3 months before  i was told i had ovarian , good luck and  my thoughts are with youTo answer your question, I don't know what "type" of ovarian cancer I have.  Oncologist said it was advanced based on MRI's, etc. but doesn't know the true extent until he does an exploratory laparotomy.  He will definitely do a complete histerectomy plus take out part of my intestine.  There is something going on with the bowels as well, but, again, it's vague until the exploratory.  Can't wait to see another specialist at Dana-Farber on thursday.  Does anyone out there go to support groups?  Thanks for your words of encouragement.  I hope to do the same for others once I get a little experience under my belt (so to speak). pauldancer Sun, 17 Feb 2008 00:00:00 GMT  On 2/12/2008 pauldancer wrote:Thank God I found this discussion board.  I was just diagnosed with ovarian cancer a couple of days ago and have an appointment with a gynocological oncologist tomorrow.  Because of the experience you all have had with this disease and I am a newbie can you tell me if an extraordinarily high ca-125 is indicative of a more advanced cancer?  I need the truth, please, as you know it.  Thanks.A high CA-125 may or may not be indicative of a more advanced cancer. It is not uncommon to have a false positive reading on a CA-125. Your doctor will order additional tests and probably surgery to determine the stage of your cancer and the best course of treatment. Don't take the results of any one test as indicative of your condition. Rather, look at all of the results to get the best picture. Good luck. DaisyDoll Sun, 17 Feb 2008 00:00:00 GMT Hi Paula,Probably by this time you know alot more about whats happenning with you.  I did want to tell you that a Ca-125 test is not indicative of the amount of cancer inside.  I know of a gal with a ca-125 of 4000, and it turned out to be a stage 1c.  My own personal ca-125 was 204 at surgery, and I also had colon cancer as well, and came out with a colostomy.I'm a stage 3c.  Hope all goes well for you and I'll keep you in prayer....~~~Joanne Jlock Thu, 28 Feb 2008 00:00:00 GMT  On 2/28/2008 Jlock wrote:Hi Paula,Probably by this time you know alot more about whats happenning with you.  I did want to tell you that a Ca-125 test is not indicative of the amount of cancer inside.  I know of a gal with a ca-125 of 4000, and it turned out to be a stage 1c.  My own personal ca-125 was 204 at surgery, and I also had colon cancer as well, and came out with a colostomy.I'm a stage 3c.  Hope all goes well for you and I'll keep you in prayer....~~~Joanne Joanne- can you tell me what treatments you had (type of chemo) & length of time, specific surgery, etc. and colostomy info.  My oncologist just touched on this latter possibility, however, won't know until they debulk.  Scary!  I've opted to go with chemo first and then debulking as was recommended by Dana-Farber which is a top cancer treatment center in Boston, Ma.  Where do you stand now, Joanne?  Are you in remission?  I wish you good blessings.  Paulette pauldancer Sat, 01 Mar 2008 00:00:00 GMT