CancerCompass message board discussion started by Faithinhim on 5/8/2007 http://www.cancercompass.com/message-board/message/all,11921,0.htm Sun, 07 Sep 2008 00:00:00 GMT Sun, 07 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi..See my message under Primary Peritoneal Cancer...I would like to hear from someone, anyone affected by this.. Thanks, Barb  Faithinhim Tue, 08 May 2007 00:00:00 GMT  On 5/8/2007 Faithinhim wrote:Hi..See my message under Primary Peritoneal Cancer...I would like to hear from someone, anyone affected by this.. Thanks, Barb Hi Barb, I am new to this site.  I am so thankful!  I just found your message here and I would like to share my story with you.  I think it helps to know we are not alone.  Sometimes all I ever hear is Breast Cancer this and Breast Cancer that!  Now, Thank God, we are hearing more about Ovarian Cancer, which I have been told is very similar to Primary Peritoneal Cancer and is treated in the same way with the same drugs.  Have you or someone you know been diagnosed with this disease?  If you, when was dx and what was the dx?   Were you or are you in treatment and what was the treatment you were given?  I have been told this is a relatively rare type of cancer.  Boy! do I feel special!  P.S. how do I find your message under Primary Peritoneal Cancer.  Do you mean here on this board?  Pleae if you like email me back.  You are not alone!  I hope you are doing well and I send prayers and many hugs.Tish Tishthedish Thu, 19 Jul 2007 00:00:00 GMT hello,My mother has also just been diagnosed with primary peritoneal cancer.She had an abnormal pap smear and a scan that showd enlarged omentum. The doctors asked for a CA 125 blood test that also was pointing to that direction. She had surgery two days ago and we are waiting for pathology report. The surgeon said that cancer was in peritoneum and not ovaries (at least visible) and that the sze of it was small. He can not stage it yet, however his guess is III A. She is a brave woman, very philosophical about it and i pray to God she will be ok.She had a very difficult last year as unfortunately my dad has been diagnosed with dementia. I know that medically this is not correct, but i think that her devastation regarding my dad caused this.God Bless all the people in agony and suffering.Elena f elena f Sat, 22 Sep 2007 00:00:00 GMT  On 5/8/2007 Faithinhim wrote:Hi..See my message under Primary Peritoneal Cancer...I would like to hear from someone, anyone affected by this.. Thanks, Barb Hi Barb,  I am new too, to this site. My friend has just been diagnosed with this terrible disease. She's 38 and all her family and friends are devestated about the news. She's had all the tests back now and she has been told she has 4 tumours on her liver, (liver functions are still good) thankfully. She is in so much pain, as her tummy is swelling  with fluid, thankfully she is in hospital and has started Chemo and they are draining the fluid 2ltrs out and 5 to go. She's not very well, hopefully it's just the Chemo starting, but they've put her on a morphine pump to help with the pain. Can you give me any input on what will happen now to my lovely friend, who we all care about alot. This disease is very new to us and have been told it's treated like ovarian cancer.          julesfriend Sun, 30 Sep 2007 00:00:00 GMT  Hi, Barb:  I just found your message and wanted to talk to you about your cancer.  My mother was diagnosed with primary peritoneal cancer August 06.  There are so many questions and "I wonder if this is because of chemo or ....".  Many things we are wondering about!  I'm wondering when you were diagnosed, what all you've had to go through, your age (if you don't mind me asking all this), and how you're doing now.  My mother just turned 76 last month.  Her name is Barbara too.  Thank you.  Jen JenSB Fri, 23 Nov 2007 00:00:00 GMT Hi Barb,My name is Lyn.  I live in Florida.  My mother was diagnosed with primary peritoneal cancer in January of 2006.  Unfortunately she passed away 6 weeks ago (October 21, 2007) after a very long and courageous battle.  She wnent through 3 different types of chemo.  First she did the Taxol/Carbo cocktail every 3 weeks.  The cancer seemed to be under control and then 3 months later it was back.  She then had Doxcil every month for a while until it stopped working.  The last thinhg we tried was Topetecan.  She had to go every week and she went through 1 1/2 rounds of it.  Fianlly in Aug the doctor said there was nothing more they could do and gave her 3-6 months.  My mother was 77.  I have heard of people surviving longer in the research I have done and all the people I have talked to.  Please email me if you like!  My thoughts and prayers are with you!Lyn Perri Lyn Sun, 09 Dec 2007 00:00:00 GMT Hi Jen, My name is lyn and believe it or not my moms name was Barbara too.  She was 77 when she passed from primary perotineal cancer.  She was diagnosed in Jan of 2006 and passed away in Oct of 2007.  She fought a long hard battle.  If you need to contact me you can.  It is a horrible cancer anbd there is not much out there about it.  My thoughts and prayers are with you and your family.  I know exactly what you are going through!Lyn Perri Lyn Sun, 09 Dec 2007 00:00:00 GMT  Dear Lyn,I am so sorry to hear about your mom's passing.  My prayer's are with you.  I just joined this sight and I am glad to help anyone I can, or at least support them.  My mom is 77 yrs old and was diagnosed with stage 3c june 07 and had a full hysterectomy, appendix out because it was coated with cancer as well as her omentum.  She was left with colon cancer(on top of the colon-peritoneal layer).  What was your mom's ca125 and staging at time of diagnosis?  My mom has a ca125 of 4025 b4 surgery, ca125 of 2012 after surgery and now after 8 chemo treatments and lots of healthy eating it is now at 7 in Feb 08.  She thinks positive and that really helps but I know the unfortunate reality of this sneaky disease that nobody has never really heard of b4.  Only 1 in 70 woman get it and it is a form of ovarian cancer; but as you know it is on top of the ovary and other organs to follow if it spreads.  I hope you are doing well and I am sure it will take you sometime to get over this.  I pray for your mom and you as well.  Take care. movingforward Mon, 18 Feb 2008 00:00:00 GMT I'm so sorry to hear about your mother.  My 73 year old mother is going through a very similar situation.  She was diagnosed in Feb 2007 with ovarian but when they operated in March 2007,  they determined it was PPC instead.  They did a hsyterectomy but really couldn't do much else surgery wise as the cancer cells were all throughout her abdomen.  They did drain all the fluid and then she went through 6 rounds of Chemo (Carboplatin and Taxol)- once every three weeks.  That wrapped up in July and her CA 125 was down to 6 (it was around 700 when diagnosed).  They declared her in remission with regular follow up doctor visits.  She has been feeling great ever since and back to her very active lifestyle (hiking, kayaking, teaching yoga and cross country skiiing).  Although she was looking and feeling great, last month her CA 125 spiked up to 150 so they determined she was no longer in remission.  She started another bout of chemo last week.  This time they are giving her Doxil, which is a much stronger drug.  She is still feeling great, which is good, but we've been getting mixed reviews from her doctors.  One of them is concerned with the short remission period and told her she should expect 6-12 months.  The other said he thinks she can respond well and could have "years" left.  We are trying to remain positive and hopeful but also realistic.  At least for now she is feeling good so we are trying to make the most of the time we have.  There is no "cure" for this terrible disease but hopefully the chemo will help keep it at bay and give her some good quality time for awhile to come.  I pray the same for your mom.  Email me if you need to talk! Maxalliemom Thu, 21 Feb 2008 00:00:00 GMT  On 2/21/2008 Maxalliemom wrote:I'm so sorry to hear about your mother.  My 73 year old mother is going through a very similar situation.  She was diagnosed in Feb 2007 with ovarian but when they operated in March 2007,  they determined it was PPC instead.  They did a hsyterectomy but really couldn't do much else surgery wise as the cancer cells were all throughout her abdomen.  They did drain all the fluid and then she went through 6 rounds of Chemo (Carboplatin and Taxol)- once every three weeks.  That wrapped up in July and her CA 125 was down to 6 (it was around 700 when diagnosed).  They declared her in remission with regular follow up doctor visits.  She has been feeling great ever since and back to her very active lifestyle (hiking, kayaking, teaching yoga and cross country skiiing).  Although she was looking and feeling great, last month her CA 125 spiked up to 150 so they determined she was no longer in remission.  She started another bout of chemo last week.  This time they are giving her Doxil, which is a much stronger drug.  She is still feeling great, which is good, but we've been getting mixed reviews from her doctors.  One of them is concerned with the short remission period and told her she should expect 6-12 months.  The other said he thinks she can respond well and could have "years" left.  We are trying to remain positive and hopeful but also realistic.  At least for now she is feeling good so we are trying to make the most of the time we have.  There is no "cure" for this terrible disease but hopefully the chemo will help keep it at bay and give her some good quality time for awhile to come.  I pray the same for your mom.  Email me if you need to talk! I am so sorry to hear about your mom.  I am sure you had a hard time wrapping this type of rare cancer around your brain.  Is there a reason why the docs did not do a scan on your mom to determine if the cancer spread to other organs so that they would not be surprised when they opened her up and did the hysto?  My mom has one of the top docs in the state  ---he even determined the type of cancer she had b4 the results were in--good guess on his part--then he had her go and have ascites removed twice and also scans of the abdoman.  It is unfortunate that there are 3 docs who are giving you and your mom different answers.  I have not heard of that yet?  Then again I just joined this blog...  If the cancer did spread to her lungs, liver or any major functioning organ then I can see why one of the docs said a lesser time frame.  If not, I have learned through many resources that you mom can go on for 1,2-5-10 years.  It all depends on where her cancer currently is located.  Can you give me an idead of where it is now?  My mom had 8 chemo treatments because she was left with cancer on top of ***PPC*** her colon. It sounds like one of the doctors does not have a clue and the other doctor is still trying.  Please let me know where the cancer is located--we know that docs like to make $.  I do not want your mom in any more pain and you either.  She is a strong fighter-just like my mom!Take care and keep in touch.......movingforward  (I am a female and I am probably around your age) movingforward Thu, 21 Feb 2008 00:00:00 GMT  On 2/18/2008 movingforward wrote: Dear Lyn,I am so sorry to hear about your mom's passing.  My prayer's are with you.  I just joined this sight and I am glad to help anyone I can, or at least support them.  My mom is 77 yrs old and was diagnosed with stage 3c june 07 and had a full hysterectomy, appendix out because it was coated with cancer as well as her omentum.  She was left with colon cancer(on top of the colon-peritoneal layer).  What was your mom's ca125 and staging at time of diagnosis?  My mom has a ca125 of 4025 b4 surgery, ca125 of 2012 after surgery and now after 8 chemo treatments and lots of healthy eating it is now at 7 in Feb 08.  She thinks positive and that really helps but I know the unfortunate reality of this sneaky disease that nobody has never really heard of b4.  Only 1 in 70 woman get it and it is a form of ovarian cancer; but as you know it is on top of the ovary and other organs to follow if it spreads.  I hope you are doing well and I am sure it will take you sometime to get over this.  I pray for your mom and you as well.  Take care. Dear Lyn, How are you holding up?  I am sure you are still feeling extremely sad, mad etc.  Just thinking of you..Take care, Can you send me your email address so that we can correspond?  movingforward Thu, 21 Feb 2008 00:00:00 GMT  On 2/21/2008 Maxalliemom wrote:I'm so sorry to hear about your mother.  My 73 year old mother is going through a very similar situation.  She was diagnosed in Feb 2007 with ovarian but when they operated in March 2007,  they determined it was PPC instead.  They did a hsyterectomy but really couldn't do much else surgery wise as the cancer cells were all throughout her abdomen.  They did drain all the fluid and then she went through 6 rounds of Chemo (Carboplatin and Taxol)- once every three weeks.  That wrapped up in July and her CA 125 was down to 6 (it was around 700 when diagnosed).  They declared her in remission with regular follow up doctor visits.  She has been feeling great ever since and back to her very active lifestyle (hiking, kayaking, teaching yoga and cross country skiiing).  Although she was looking and feeling great, last month her CA 125 spiked up to 150 so they determined she was no longer in remission.  She started another bout of chemo last week.  This time they are giving her Doxil, which is a much stronger drug.  She is still feeling great, which is good, but we've been getting mixed reviews from her doctors.  One of them is concerned with the short remission period and told her she should expect 6-12 months.  The other said he thinks she can respond well and could have "years" left.  We are trying to remain positive and hopeful but also realistic.  At least for now she is feeling good so we are trying to make the most of the time we have.  There is no "cure" for this terrible disease but hopefully the chemo will help keep it at bay and give her some good quality time for awhile to come.  I pray the same for your mom.  Email me if you need to talk!Please check Primary Peritoneal Cancer Recurrence from Xpress XPRESS Thu, 13 Mar 2008 00:00:00 GMT My moms CA 125 was only ab out 300 after her surgery.  After her first rounds of chemo it got down to 9 but within a few months the cancer was back.  She did chemom until about 2 months before she died.  The doctors gave her 3-6 months and said there was nothing more they could do.  She was so weak!  Thanks foryour thoughts and prayers.Lyn Perri Lyn Sat, 05 Apr 2008 00:00:00 GMT Hi. I just found this site. My mom has ppc. She had exploratory lap about a month ago and has had a horrible time and chemo hasn't even started yet. Her blood pressure bottomed out, she got blood clots, she went home and her legs were real swollen and she could hardly get around. She needs someone to help her move 24/7.Anyways she's been vomiting since Friday and not just after she eats or drinks.  It will be that brown stuff from your stomach(sorry if tmi).  She was admitted to the hospital today for dehydration. Doc wants to build her back up and start her first chemo in the hospital.  I'm just frustrated. You can't find much about ppc on the net and what i find is pretty depressing.  Is it true her outlook could only be 12-25months?!?!?!?  I'm sorry to be rambling but I thought if anyone knows what I'm going through it would be ya'll.  Thanks for listening.  terri terriprit Wed, 09 Apr 2008 00:00:00 GMT  On 2/21/2008 movingforward wrote:I am so sorry to hear about your mom.  I am sure you had a hard time wrapping this type of rare cancer around your brain.  Is there a reason why the docs did not do a scan on your mom to determine if the cancer spread to other organs so that they would not be surprised when they opened her up and did the hysto?  My mom has one of the top docs in the state  ---he even determined the type of cancer she had b4 the results were in--good guess on his part--then he had her go and have ascites removed twice and also scans of the abdoman.  It is unfortunate that there are 3 docs who are giving you and your mom different answers.  I have not heard of that yet?  Then again I just joined this blog...  If the cancer did spread to her lungs, liver or any major functioning organ then I can see why one of the docs said a lesser time frame.  If not, I have learned through many resources that you mom can go on for 1,2-5-10 years.  It all depends on where her cancer currently is located.  Can you give me an idead of where it is now?  My mom had 8 chemo treatments because she was left with cancer on top of ***PPC*** her colon. It sounds like one of the doctors does not have a clue and the other doctor is still trying.  Please let me know where the cancer is located--we know that docs like to make $.  I do not want your mom in any more pain and you either.  She is a strong fighter-just like my mom!Take care and keep in touch.......movingforward  (I am a female and I am probably around your age)Sorry for my delayed response.  There are so many different emails streams on PPC that it's hard to keep up with them all and i didn't realize there was a response until today.  My sister lives near my mother and i'm on the other side of the country so much of my information is 2nd or third hand whereas my mom and sister are the ones that speak directly with the doctors.  I believe they did do a scan before her initial surgery and i know that they have done one since.  The 2nd one in December showed 2 shadows- one on pelvic/hip area and one on chest- both less than 19mm.  She started Doxil in February but 3 treatments later they said it wasn't working.  They have now switched her to topotecan and she has had 2 series so far.  Her CA-125 level dropped so far from 785 to 485 so we are hopeful that it may be working.  She had the fluid from her abdomen drained this week and that has helped her comfort level.  Her medical oncologist has been relatively pessimistic/realistic? throughout but the one that was more positive was his partner who she had to see b/c her main oncologist was out once on vacation.  Her gynecological oncologist has been relatively neutral i would say.  Maxalliemom Fri, 13 Jun 2008 00:00:00 GMT