CancerCompass message board discussion started by n4yyld on 9/24/2007 http://www.cancercompass.com/message-board/message/all,16463,0.htm Thu, 24 Jul 2008 00:00:00 GMT Thu, 24 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I found this website, when I searched for information about primary peritoneal cancer, a truely silent killer.  My younger sister was diagnosed with PPC in May 2006.  Her CA125 was 5000.  She had one round of chemo as well as intraperitoneal chemo before her sugery, followed by 8 more rounds of chemo.  Her CA125 was 8 after the last chemo in February.  Three months ago, her CA125 was 15, still within the normal range.  Three weeks ago her CA125 was 36.3 (normal = 35), but last week it elevated to 42.  The doctor did not see any tumor from her abdominal ultrasound, so that her oncologist asked her to wait for one month before he could make his decision about chemo.  Has anyone here have similar experience?  I am terrified about her cancer's coming back.  It's only been 6 months since her last chemo!  I would like to know if there is any complementary treatment such as nutrition supplement/herbal therapy available for this cancer.  I know that we still need to rely on the conventional treatment like surgery and chemo to treat the cancer, but I just wonder if there is any complementary therapy that can help to fight the cancer. n4yyld Mon, 24 Sep 2007 00:00:00 GMT Hello my name is Kelly-I live in San Diego.  My mom was diagnosed with cervical cancer and tested positive for HPV. She had procedure to remove not sure of details.   She was diagnosed with breast cancer in April of 1993.  She underwent a lumpectomy, radiation, and chemo therapy.  She was again diagnosed with another more aggressive type of breast cancer in Nov.1997.  She again had surgery and chemo therapy.  My mom now has been diagnosed with PPC in April of 2006.  She has had a debulking surgery.  She received chemo prior to and after surgery.  She has the fluid build up in her stomach.  There is fluid on the lungs on CT scans.  After her surgery her CA-125 was up to 1700 or so.  She is a fighter.  She was told through GENE testing that she has BRCA 1 gene.  50% to each kid my sister and I.  We both were tested I do not have it my sister does. 50% to her kids. Doesn't go to my kids since I don't have.  My sister with this information went to her doctor and was diagnosed with cervical cancer and also tested for HPV.  My sister had a full hysterectomy.  They found pre-cancerous cells in her tubes.  I am reading a lot about this.  My mom just entered a trial for patupilone a cancer fighting drug. There are a few things my mom went though that may help others to know??  She did not take her Senokot S with certain binding chemo treaments.  She ended up in the hospital for three days.  Finally she got it after that experience.  I am reading about diet and IV vitamin C.  Xango Juice???  My mom found a magazine in an office stating a doctor at Baylor University had tweeked a herpes virus and made it into a cancer fighting herpes?  Not in clinical trials yet.  We are fighting together.  I just wanted to share some info I had and can share more.  By the way my mom Peggy is at the Moores Cancer Center @ UCSD in San Diego. Is anyone else out there taking Patupilone?? 2 week cancer cure dietXango Juice?IV Vitamin C Dr. Mark Levine of NIDDK (patients did well)IV Vit C Dr. Jeanne Driskot of Kansas Uni. is to test effectivenessIV Vit C Dr Robert Cathcart provides free of charge IV does/ frequencyI am hearing diet is very important . I hope this helps somewhat clmtkel Fri, 02 Nov 2007 00:00:00 GMT Hi I am 9 month after chemo.My CA125 was 9 before operation and after Chemo went down to 2 and is back to 6.My oncologist does not see anything either .CA 125 is not my marker.No markers so far.Will have PET in February. Lack of markers does not allow me to enter any trials - I am looking at vaccine.I still have pain after operation some days less some more.I am scared that is going to come back and I only will be alligible for some deadly chemo again.So what you and your sister are looking at.She still has time for vaccine trial- when you pass 6 month after chemo nobody wants you. Ewita Fri, 23 Nov 2007 00:00:00 GMT How is your sister doing?  Your post is a couple months old at this point and not sure how things have progressed.  My mother has been going through this since last February.  She had surgery and then 6 rounds of chemo.  After that, her CA-125 dropped to 3.  She has been feeling great, looks great and is back to most of her old activities.  Unfortunately, 2 appts ago it went up to 15.  She went to the doctor last week and it has risen to 18.  It is still in normal range but we are concerned that it is rising.  The doctor is going to do a CAT scan next week to see if they see anything.  We are continuing to pray but clearly concerned.  Maxalliemom Thu, 06 Dec 2007 00:00:00 GMT I just lost my sister due to peritoneal cancer, diagnosed in the 4th stage. However when I was researching this about a month ago, I read that the body of the patient must have an alkaline consistancy and that the person must have a positive outlook about life and everything. So eating fruits and veges that have acidicity must be avoided. fresh juice from green veges was highly recommended. Apparently eating meat also is not good. I cannot recall the theory about it but if I find the article I will forward it. Nandene Sat, 22 Mar 2008 00:00:00 GMT Hello, My father in law passed away from PPC 14 yrs ago. It is very rare for men to have it but as you know, genetic diseases aren't gender specific. We didn't know the precise cancer he had until about one month ago. I have just now begun doing some research about this because of it being genetic, I am concerned for my husband and two sons. I was hoping that perhaps someone would be able to steer me in the right direction about where to find good information about this cancer and if they have seen any articles etc that were directed toward men. Your assistance is greatly appreciated! Thank you,Maureen    Maureen564 Sun, 04 May 2008 00:00:00 GMT  On 9/24/2007 n4yyld wrote:I found this website, when I searched for information about primary peritoneal cancer, a truely silent killer.  My younger sister was diagnosed with PPC in May 2006.  Her CA125 was 5000.  She had one round of chemo as well as intraperitoneal chemo before her sugery, followed by 8 more rounds of chemo.  Her CA125 was 8 after the last chemo in February.  Three months ago, her CA125 was 15, still within the normal range.  Three weeks ago her CA125 was 36.3 (normal = 35), but last week it elevated to 42.  The doctor did not see any tumor from her abdominal ultrasound, so that her oncologist asked her to wait for one month before he could make his decision about chemo.  Has anyone here have similar experience?  I am terrified about her cancer's coming back.  It's only been 6 months since her last chemo!  I would like to know if there is any complementary treatment such as nutrition supplement/herbal therapy available for this cancer.  I know that we still need to rely on the conventional treatment like surgery and chemo to treat the cancer, but I just wonder if there is any complementary therapy that can help to fight the cancer.I was diagnosed with this cancer in June of 2007.  After 6 chemos, my tumor completely dissolved.  Therefore, I did not need surgery.  When diagnosed, my tumor marker was 5,600 -- it is currenlty 19.  In addition to the chemo, i had daily Reiki treatments (an Eastern form of healing dealing with the body's energy that includes guided meditation).  I firmly believe that Reiki was a big factor in my remission.  I had originally been told by all 3 doctors that the chemo would reduce the tumor by 2/3 at the most.-- I was given Reiki treatments by the husband of a friend -- he also gives Reiki at one of the hospices in town.   I only lost about half my hair -- which he says is typical of Reiki treated patients.  The Reiki also helped with the nausea.  If you can find a Reiki master in your area, you should  encourage your sister to give this alternative form of treatment a try. alive61 Wed, 14 May 2008 00:00:00 GMT It has been a while since you posted this message and I was wondering how your sister is doing.  I also have primary peritoneal cancer and posted a message on this web site but it doesn't come up under all the other messages.  Please let me know how your sister is doing.   Nurse Karen Sun, 08 Jun 2008 00:00:00 GMT I just saw this message and was wondering how your mom is doing.  I also have primary peritoneal cancer. Nurse Karen Sun, 08 Jun 2008 00:00:00 GMT She is doing okay- just started a new series of chemo.  I'm sorry to hear that you have this terrible disease.  How are you doing? Were you recently diagnosed and have you had surgery and/or chemo yet?  I will keep you in my prayers. Maxalliemom Tue, 10 Jun 2008 00:00:00 GMT