CancerCompass message board discussion started by Colin on 1/18/2008 http://www.cancercompass.com/message-board/message/all,19867,0.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/ I wish I had found this message board several years ago, I lost my wife to this disease 22 months ago. Elaine was 47 when she died in March 2006, she was diagnosed in December 2004. We live in Scotland where I believe the treatment of the disease is as good as anywhere in the world. I have read through all the messages on the board and all I would say is that you support the patient as much as possible, if they are positive people you support that, if they need support you give them that support. I think a cancer care group if available to the patient and the family is a great help, when this was suggested to Elaine we were reluctant to get involved but she benefited greatly from the group and the feedback from the group was that they benefited from her. It is a horrible disease as everyone else has testified too and I feel we as a family were treated harshly to loosing Elaine so young but my heart goes out to other people on this board who are even younger. It is a shame that it is so difficult to get information on this cancer however it is very rare thank God, there is worldwide research going on all the time and I would suggest people support there own country's research programs as much as they can so this particular disease can be beaten, I would also encourage any patients to subscribe to any trials there doctor suggests as this is the only way that progress can be made, Cancer is a worldwide problem and needs to be attacked as such so the costs and the resources are spread globally. Elaine was very positive the whole period of her treatment, we entered one of the trials at that time (I say we because it is the whole family who lives through this disease, not just the patient), Elaine went through 6 Chemo treatments followed by a radical hysterectomy followed by 3 chemo's, this too us up to September when we had a wonderful 3 months of treatment free time, sadly the cancer re-ocurred in late December 2005 and she died in the March. We were told once Elaines diagnosis was confirmed in the January of 2005 that the expected survival period for a stage 4 was only 18 months, Elaine only got 15 of which only 3 was treatment free but she never gave up and neither did we and i hope everyone who reads this will also remain as positive as you can, don get me wrong, we had depressed and bad times as does everyone but this wonderful little lady battled harder than I have ever witnessed in my life and I will always be in awe of her wonderful gentle fighting spirit and even though she was feeling terrible herself would still give reassurance to any other patients she met and spoke to. My heart goes out to all patients and there friends and families, all I can suggest is that you stay strong and support each other, make the best you can from the good days and the bad, hold on to what ever faith you have, and know that you are not alone as all these replies testify. Nearly two years on now I still have an unfillable void from the loss of my best friend and partner but life goes on and things do get easier. Make the most of the time you are given and support and love each other. God bless you all and I will think and prey for you all Colin Fri, 18 Jan 2008 00:00:00 GMT hi,  im so glad your wife was so strong,and im sorry to hear about your loss. My mom in law is battling this too, however she is in the hospital with some strange virus she picked up due to poor immunity, she is very sick.I wonder if there is any survival rate to this cancer, the doctor gave her 2 years. I cant believe it, there has to be another chemo drug or something, her numbers are in the 50's. Do u have any imput? Thanks, Christine chunt07 Sat, 19 Jan 2008 00:00:00 GMT  On 1/19/2008 chunt07 wrote:hi,  im so glad your wife was so strong,and im sorry to hear about your loss. My mom in law is battling this too, however she is in the hospital with some strange virus she picked up due to poor immunity, she is very sick.I wonder if there is any survival rate to this cancer, the doctor gave her 2 years. I cant believe it, there has to be another chemo drug or something, her numbers are in the 50's. Do u have any imput? Thanks, Christine  Hi Christine,I think one of the frustrating thing about this cance is the lack of information, it is very uncommon but the survival rates are extremely poor and patients survival seems to rarely be beyond 24 months though in the US your survival period seems much better than the UK. One of tha major issues to any patient going through chemo is the low white blood cell count leving them ope to infections which then hinders the treatment they need to survive.All I can suggest is hang on in there with you mum in law which you will already being doing and be as strong as you can be. If your mum in law is ever offered trials I would always say yes, it may not be much help to hr but it may help someone in future.I have been through all the typical stages that partners and sufferers go through anger, dispair etc but all you can do is hope and be strong for your mum in law. Hopefully medical science will progress with this cancer so that earlier detection can be increased giving the sufferers an increased chance of survival, maybe this is only a problem in the UK but my wife was going through regular checks at hospitla with specialist yet it ook in excess of three months before the cancer was diagnosed. Take care and be strong and just know that you are not alone, there are many others fighting this and thinking about you and your family, if talking on here helps feel free, it is always at least someone else to speak to as sometimes the family are not always the best people to confide in. Take care and god bless you all.  Colin Sun, 20 Jan 2008 00:00:00 GMT Thank you for your support, its greatly appreciated.Doctor talked about a trial  for a year after she went into to remission, he seemed so positive, and told her she would live a long life.I actually found all the disturbing facts on this cancer on the computer.Anyway, thanks again, we will remain positive.Christine chunt07 Sun, 20 Jan 2008 00:00:00 GMT  On 1/20/2008 chunt07 wrote:Thank you for your support, its greatly appreciated.Doctor talked about a trial  for a year after she went into to remission, he seemed so positive, and told her she would live a long life.I actually found all the disturbing facts on this cancer on the computer.Anyway, thanks again, we will remain positive.ChristineHi Christine, During the whole time Elaine was fighting her cancer the doctors here were brutally honest with us, it is not always what you want to hear but I think it is better this way than being misled, it can be difficult to find out much about this cancer as it is so rare however there are a number of information sites out there. Obviously the earlier this type of cancer is detected the better the survival rates are, Elaine was not diagnosed until stage 4. As I said again keep your chin up and make the most you can of the good days and look after each other in the bad ones. Colin Sun, 20 Jan 2008 00:00:00 GMT Hi, my mom is fixing to be diagnosed with this after her MRI's come back neg. for her breast. Its like they are beating around the bush. Anyway, my mom has been battling dr.'s since May last year. Now we are in Feb tomarrow and still has not been diagnosed or treated. It all started with stomach pains last May. How did your wife start to realize her problems were cancer? To me it seems when your stomach is hurting like my moms was this should one of the things to look for. Instead she was treated for all kinds of stomach ailments. I know what you mean about not enough information out there. Im starting to think because there is only one way ticket. It sucks so bad, it hasnt hit yet. But i know the day is comming when my mom who has always been there for me and all the grandkids will be a very sick and weak woman. I cant imagine life without the woman who brought me into this world. Im glad I found you guys.... Its nice talking to someone who knows this cancer. twithers Thu, 31 Jan 2008 00:00:00 GMT  On 1/31/2008 twithers wrote:Hi, my mom is fixing to be diagnosed with this after her MRI's come back neg. for her breast. Its like they are beating around the bush. Anyway, my mom has been battling dr.'s since May last year. Now we are in Feb tomarrow and still has not been diagnosed or treated. It all started with stomach pains last May. How did your wife start to realize her problems were cancer? To me it seems when your stomach is hurting like my moms was this should one of the things to look for. Instead she was treated for all kinds of stomach ailments. I know what you mean about not enough information out there. Im starting to think because there is only one way ticket. It sucks so bad, it hasnt hit yet. But i know the day is comming when my mom who has always been there for me and all the grandkids will be a very sick and weak woman. I cant imagine life without the woman who brought me into this world. Im glad I found you guys.... Its nice talking to someone who knows this cancer.Hi Twithers, Elaine was 44 ans in late spring was concerned with her infrequent periods and was referred b her GP to a gynacologist at our local hospital, they started to perform tests but everything the tested came back negative or so they told us, in September Elaine was still attending the hospital, in late Novemebr 2005 she started to put on weight with no obvious reason and in mide december we were getting really concerned, our local GP did nothing really other that talk nonsense to us but Elaine was so bad after Christmas that she was admitted to Hospital where the initial opinion was acute renal failure, the removed 5 litres of fluid from her lower abdomen area and we were given the diagnosis in the first few days of January that it was stage 4 Peritoneal cancer and that the prognosos was poor with an estimate of 18 months, we ot 15. I was angry becuse I always felt that if diagnosis had been sooner then her life expectancy should have been greater but by that time it was too late, i realise it is a rare cancer and difficult to diagnose however there are tell tale signs which a GP should have notices but more so the gynacologist I would have thought should have been aware of the possible issues. All I can say is try and stay positive, it does help, maybe this is not what your mum is suffering from, I pray that is the case, a cancer marker CA125 test seems to be a good indicator in at least 50% of cases of this type of cancer, tests on the abdominal fluid are the main test for the diagnosis. Yes I really wish i had something like this to access when we were diagnosed, your initial feeling is shock so you are not prepared to ask questions, when you think of the questions ou want to ask sometimes it is difficult to contac the specialist to ask the questions, the net and this site in particular are vary useful, please relaise others care and this is a good place to vent off your frustrations and fears. Take care and I hope things go well for you and our mum, stay in touch. Colin Thu, 31 Jan 2008 00:00:00 GMT Its crazy how the dr.'s take forever to diagnose this. My mom started in last May with stomach pain and in 98 had breast cancer. So every year she gets her mammos and her C test on her blood. Well last  year she did not because every year its been fine. In May they gave her antibiotics for her pain. Then a couple months later it never went away. Shes had colonascopys and catscans and mri's and every test imaginable to see where this pain was comming from. Then they start seeing things. Ya know, "supsicious" things. Then they start blood testing and find her count was elevated then do biopsy after biopsy on different cysts in the abdomen area. I mean its crazy how long this has been going on. I mean she has been told it could be ovarian cancer to breast cancer to I forgot the other one, she was told it could be in her back lungs and lymph nodes. Come to find out its in her liver, abdomen area and lymph nodes.Not in her back or lungs. Now they are testing her for breast cancer again,. Im wondering why the heck dont they just have a test for this only? So they tell her if its not breast cancer then its this cancer. WTH, do a freaken test. She has most of they symptoms of this plus ovarian cancer keeps comming up under the microscope. So why keep checking her breast, when this doesnt come up. Just doesnt make any sense. Its just so confusing, that they are wasting this time. I feel its just growing and growing right now.   twithers Thu, 31 Jan 2008 00:00:00 GMT  On 1/31/2008 twithers wrote:Its crazy how the dr.'s take forever to diagnose this. My mom started in last May with stomach pain and in 98 had breast cancer. So every year she gets her mammos and her C test on her blood. Well last  year she did not because every year its been fine. In May they gave her antibiotics for her pain. Then a couple months later it never went away. Shes had colonascopys and catscans and mri's and every test imaginable to see where this pain was comming from. Then they start seeing things. Ya know, "supsicious" things. Then they start blood testing and find her count was elevated then do biopsy after biopsy on different cysts in the abdomen area. I mean its crazy how long this has been going on. I mean she has been told it could be ovarian cancer to breast cancer to I forgot the other one, she was told it could be in her back lungs and lymph nodes. Come to find out its in her liver, abdomen area and lymph nodes.Not in her back or lungs. Now they are testing her for breast cancer again,. Im wondering why the heck dont they just have a test for this only? So they tell her if its not breast cancer then its this cancer. WTH, do a freaken test. She has most of they symptoms of this plus ovarian cancer keeps comming up under the microscope. So why keep checking her breast, when this doesnt come up. Just doesnt make any sense. Its just so confusing, that they are wasting this time. I feel its just growing and growing right now.  I understand totally how you feel, with Peritoneal like many other cancerns the best chance of fighting the disease is idetifying it quickly, I find it astonishing that it is down to the patient or the patients family to kick up hell untill something is actually done, I can only hope that your persistance pays off, keep pressurising them to look into this and check for as many things as they can untill whatever is wrong with your mum is idetified. Remeber Perittoneal cancer is very rare so there is a good chance your mum will not be suffering from it. Keep fighting on and you will get there.  Colin Fri, 01 Feb 2008 00:00:00 GMT I think you have been very brave.  My mum was diagnosed with ppc in Aug and after 8 sessions of chemo has been told that her ca125 is still over 500 and that she hasn't responded as well as was hoped. She is 68. The problem I am having is that I live in Scotland and have 3 school age children and my mum is 300 miles away in England. I can't leave the children to fend for themselves but am feeling dreadful at being so far away.  She has a lot of practical help and I am phoning every day but I really don't know what to do for the best. I have found very little help or support here because of the distance involved kccjf Fri, 08 Feb 2008 00:00:00 GMT To: EveryoneI just want to say what a relief it is to find all of you - I dont suffer from PPC but my wonderful mother was told in Aug that she has PPC and my world has been turned upside down....she has been going through chemo since Sept (every 3 wks for three time) it appears the chemo is working but mantaining the lesions but it is not doing what they had hoped and next week she will go back into the city to discuss the plan going ahead. When first diagnosed she saw three doctors in NYC at three diffferent hospitals - each one told her she would win this first battle with PPC but that it has a high risk of coming back....I am at a loss for words really, she is everything to me and has always been the rock in our family....I just keep praying that there is a some miracle treament out there for her jennykf Fri, 08 Feb 2008 00:00:00 GMT On 2/8/2008 kccjf wrote:I think you have been very brave.  My mum was diagnosed with ppc in Aug and after 8 sessions of chemo has been told that her ca125 is still over 500 and that she hasn't responded as well as was hoped. She is 68. The problem I am having is that I live in Scotland and have 3 school age children and my mum is 300 miles away in England. I can't leave the children to fend for themselves but am feeling dreadful at being so far away.  She has a lot of practical help and I am phoning every day but I really don't know what to do for the best. I have found very little help or support here because of the distance involved Hi kccjf, You are in such a difficult position, and I feel extremely sorry for you, it is difficult seeing any loved one go through this disease but at least it was easier for me as I was beside Elaine the whole time, it must be very distressing for you but you really don't have much option when you have a young family, our two boys were in there early twenties when we went through this. It is good and reassuring that your mum is getting good support at home, I live in Scotland too and found that the district nurses tremendous, we did not require home helps as the boys were a great help, my oldest Graham actually stopped working for nine months to look after Elaine during the day before her condition deteriorated and she was hospitalised. I am sure your mum understands that you are doing everything you can, it is a major problem when family's are spread so far apart now but that is modern living and people need to go wherever the work is. I agree that there is very poor support for this type of cancer and information is scarce, I wish I had known about information online when we were going through this., all I can do is say that you are in my thoughts, do what you can for your mum and obviously keep in contact as you are doing and that will lift her spirits. At least discussing things on boards like this does help. Take care. Colin. Colin Fri, 08 Feb 2008 00:00:00 GMT On 2/8/2008 jennykf wrote:To: EveryoneI just want to say what a relief it is to find all of you - I dont suffer from PPC but my wonderful mother was told in Aug that she has PPC and my world has been turned upside down....she has been going through chemo since Sept (every 3 wks for three time) it appears the chemo is working but mantaining the lesions but it is not doing what they had hoped and next week she will go back into the city to discuss the plan going ahead. When first diagnosed she saw three doctors in NYC at three diffferent hospitals - each one told her she would win this first battle with PPC but that it has a high risk of coming back....I am at a loss for words really, she is everything to me and has always been the rock in our family....I just keep praying that there is a some miracle treament out there for her Hi Jenny, I think that what you are doing is all any of us can do, support your mum as much as you can and as doctors try new or alternative treatments hopefully further advances can be made, it is a terrible disease but there are stories on the net of people keeping it at bay and surviving for 5 years and longer, all you can do is hope and prey and support your mum in her fight, you can be sue that any people who access this sight will bethinking of you and supporting you, as I have said to others on here at least it is an area where you can at least talk to others that have either been through it or are going through it. I feel it is a shame that there is not a better support forum out there for people who can talk to others who have went through the experiences of this disease. Take care and god bless, Colin. Colin Fri, 08 Feb 2008 00:00:00 GMT Thanks for your support. It helps to read of other people who have unfortunately had to go through the same thing.  We are told that it is a rare cancer but reading the messages boards it seems to affect so many people and many of them are young like your wife. There should be something done to raise awareness of this awful disease especially as it usually isn't diagnosed until it reaches an advanced stage. kccjf Sat, 09 Feb 2008 00:00:00 GMT  On 2/9/2008 kccjf wrote:Thanks for your support. It helps to read of other people who have unfortunately had to go through the same thing.  We are told that it is a rare cancer but reading the messages boards it seems to affect so many people and many of them are young like your wife. There should be something done to raise awareness of this awful disease especially as it usually isn't diagnosed until it reaches an advanced stage.I could not agree more, we live in the west of Scotland so attended Gatnavel hospital where the Beatson institute is now based, apparently in taht specialist centre they only see 3 or 5 cases a year so itn the great scheme of things it is very rare. Most of the treatments seem to be based on clinical trials at present. I think there should be a greater awareness from GP's in spotting the symptoms but again these seem to appear very late in the cycle of this cancer and by that time it appears to have reached a stage where options are limited. The most prone age seems to be from menopause age and upwards though I have noticed on other sites woman in there 20's being diagnosed which is dreadful. Take care and thnak you for keeping in touch. Col. Colin Sun, 10 Feb 2008 00:00:00 GMT I am a 31 year old mother with an 18 month old little boy. I was diagnosed with PPC stage 4 in December 2006 and have been having regular chemo treatments since. The chemo I am on now is to just give me a bit more time and it unfortunately won't cure this horrid cancer. I just wanted to let any other sufferers know that I was feeling at my worst and was about to give up on the chemo until I met a special doctor. He started giving me high doses of Vitamin C intravenously and I have found it to boost my immune system. He also took tests on my blood and I was found to have extremely high copper levels and extremely low zinc levels - with levels like this your immune system cannot work properly. So on top of the Vit C I am taking high doses of zinc to give my immune system a real boost. Everyone has to realise that chemo is obviously a poison so we have to do our best to help our bodies stay strong. I was given 6 to 8 months to live and that was now 9 months ago. Last week I went scuba diving, sky diving and bungy jumping just to prove I am still alive ......... Please everyone keep up the fight and try and stay as positive as possible. Believe me I know it is hard - every day I look at my little boy and just pray for some more time. My prayers are with you all xxx Too Young Wed, 12 Mar 2008 00:00:00 GMT  On 3/12/2008 Too Young wrote:I am a 31 year old mother with an 18 month old little boy. I was diagnosed with PPC stage 4 in December 2006 and have been having regular chemo treatments since. The chemo I am on now is to just give me a bit more time and it unfortunately won't cure this horrid cancer. I just wanted to let any other sufferers know that I was feeling at my worst and was about to give up on the chemo until I met a special doctor. He started giving me high doses of Vitamin C intravenously and I have found it to boost my immune system. He also took tests on my blood and I was found to have extremely high copper levels and extremely low zinc levels - with levels like this your immune system cannot work properly. So on top of the Vit C I am taking high doses of zinc to give my immune system a real boost. Everyone has to realise that chemo is obviously a poison so we have to do our best to help our bodies stay strong. I was given 6 to 8 months to live and that was now 9 months ago. Last week I went scuba diving, sky diving and bungy jumping just to prove I am still alive ......... Please everyone keep up the fight and try and stay as positive as possible. Believe me I know it is hard - every day I look at my little boy and just pray for some more time. My prayers are with you all xxxWhat can I say to you other than you are in my thoughts and prayers, like you have said you have a very good reason to fight on with your 18 month old son. I think your message about the change in your treatment with the addition of the vitamin C injections is what this site is all about. This cancer is so unusual and because of this getting information is so difficult. It breaks my heart that someone of your age has been diagnosed with this as we believed we had been unlucky when my wife was diagnosed and she was 47.Keep fighting on and keep in contact, any other changes to your treatment that helps pass it on and hopefully it will benefit others.Take care and god bless you and your family.Col.     Colin Wed, 12 Mar 2008 00:00:00 GMT I can't believe I have been searching the web for info on this horrible disease since my mom's diagnosis in July of 2006, and finally real people. I have grown so weary of the lack of info and then just such negative medical jargon.  I just want to reach out to people affected by it at this point.  She is stage 3 as all was luckily contained in the abdomen.  Her ca125 number started at 800 and then jumped to 1800 within weeks.  She had surgery and then chemo via belly port for 6 months.  Mom was declared in 'remission" in Jan. of 2007.  But just recently she had tests done  that showed hot spots in abdomen as well as one in the mammary area.  Both are relatively small and the doctor told her no chemo for awhile.  She has been taking tamoxofin since the end of chemo and I guess that is doing the job more or less.   Her number is still rather low at 12.  She has a network of women that she keeps in touch with that also fight the disease..and has told me that she learned from them that surgery is seldom performed for a second time.  Any experience on that would be appreciated.  I'm scared to death but trying to remain positive for my mom because that is how she has approached  this from the beginning.  I have felt very alone as no one I know has ever heard of this cancer, including my own physician.  So many cancers CAN be cured these days that people don't understand how devastating this situation is. They all want to tell you how someone they know beat this or that cancer...and so on.  It's nice to hear from those in the know.  My heart goes out to all of you momof3boys Sat, 15 Mar 2008 00:00:00 GMT I wanted to add that in the beginning I found the best info on a site started by Francine Milano, another patient with ppc.  It was very enlightening...I passed it on to my mom and she then began to contact Francine and that lead to others.  Francine's site is no longer up but Francine is....she has had the disease for 8 and a half years now and is still moving.  Much better survival rate than you can find on any medical site.... I thought others might like to know.  Another daily blog type of site is "leahs story".  Sorry,don't have her exact address but if you can find it  there is alot of specific info there. momof3boys Sat, 15 Mar 2008 00:00:00 GMT  On 3/15/2008 momof3boys wrote:I can't believe I have been searching the web for info on this horrible disease since my mom's diagnosis in July of 2006, and finally real people. I have grown so weary of the lack of info and then just such negative medical jargon.  I just want to reach out to people affected by it at this point.  She is stage 3 as all was luckily contained in the abdomen.  Her ca125 number started at 800 and then jumped to 1800 within weeks.  She had surgery and then chemo via belly port for 6 months.  Mom was declared in 'remission" in Jan. of 2007.  But just recently she had tests done  that showed hot spots in abdomen as well as one in the mammary area.  Both are relatively small and the doctor told her no chemo for awhile.  She has been taking tamoxofin since the end of chemo and I guess that is doing the job more or less.   Her number is still rather low at 12.  She has a network of women that she keeps in touch with that also fight the disease..and has told me that she learned from them that surgery is seldom performed for a second time.  Any experience on that would be appreciated.  I'm scared to death but trying to remain positive for my mom because that is how she has approached  this from the beginning.  I have felt very alone as no one I know has ever heard of this cancer, including my own physician.  So many cancers CAN be cured these days that people don't understand how devastating this situation is. They all want to tell you how someone they know beat this or that cancer...and so on.  It's nice to hear from those in the know.  My heart goes out to all of youI think that most people who use this site will agree with you regarding the lack of information on this cancer. I live within 12 miles of Glasgow and in Scotland we have a very poor record of cancer and diagnosis, fortunately we have the new Beatson Institute now open which should help matters but even at the institute they will only come across two or three cases of this type of cancer in a year. I think it helps to talk to other people who have either been diagnosed or have had relatives who have been diagnosed. I am no medical expert but tend to agrre that it seems to be unusual to have a second attempt at surgery, here in Scotland the normal practice for this type of cancer is chemo followed by radical surgery normally a radical historectomy followed by more chemo.I think we all can understand feeling alone, in many cases you cannot speak frankly to the patient and you are trying to protect your family so who do you talk to, this is where these sites I feel are very useful.Keep your spirits as high as you can for your mum and keep trying to be positive, make the most of the good days and keep fighting on.God bless and remeber you are not alone in dealing with this.Col. Colin Tue, 18 Mar 2008 00:00:00 GMT Thank you Col for answering my message. It just helps to know someone is hearing me. Since I have been having treatment for so long so many people ( close friends included ) seem to have lost interest in me. When I was first diagnosed everyone rallied around and now even my closest friend has basically turned her back on me. I know everyone finds cancer hard to deal with but one thing everyone has to remember is that the person who has it, deals with it every second they are alive. My husband has been struggling to come to terms with the fact that I will unfortunately die from this as I am looking ok - good infact. Everyone seems to think you are only suffering when you start to wilt away. How did you deal with your own emotions ? I want to try and help my husband but I really don't know how. Every time I have chemo I say it will be my last but then somehow I find the strength to have another go .... maybe its that cheeky little grin I get from my little boy ! Reading back I've made it sound like I have no support but that is far from the truth - I have had so many friends show true courage through this and be an absolute support. My dearest friend Lee takes a day off work every time I have chemo to come and sit with me and my mum is my guardian angel ! To everyone who reads this and has someone close going through this ordeal please remember just to be there is help enough. I find that even after 15 months of treatment sometimes I just need a shoulder to cry on and sometimes that is hard to find. I unfortunately need some sad answers from anyone who has seen someone go through this as doctors don't know a thing ..... Does this take you slowly ? or can you tell when you are coming to the end ? I hate asking these sort of questions but unfortunately need to know for my own sanity. Love to all of you reading this and keep remembering, as I do, miracles do happen !Kathy Too Young Thu, 20 Mar 2008 00:00:00 GMT I am new to this site but not to cancer unfortunatly. My mom was diagnosed in Oct 04 with stage IV PPC. She underwent a total hysterectomy and debulking. 6 wks later started Taxol/Carbo (which almost killed her) they had to slow the drip to take 12 hours to complete ONE session. So this was our life for the next year or so. Every 3 weeks we would spend an entire day at Hackensack H. A bunch of times we had to delay treatments due to blood counts. Sometimes we ended up in the ER due to side effects until she became intolerant to the taxol/carbo. Fortunatly for us at that point her scans were clear and her CA 125 was 7.Then she went into a 8 month remission. After the  cancer returned in the same area  we started Gemzar. She had about 9 treatments and had another 8 month remission. Once again I got the call from her doctor that her CA 125 went from 10 in Nov 07 to 97 in Jan 08.This is our third time in treatment and now she is on Doxil. She is FULL of fluid. The first diagnosis she did have alot of fluid. The second time she had little to no fluid build up. THIS time she started with alittle. Now she is totally uncomforatble and full. She was drained in January they took 2 Liters. The fluid was back in 3 days. She was going to get drained again but the doctor told her the fluid would be back just as soon that she has to let the chemo to its work. I asked the doctor why is there so much fluid this time around when she had none last year. His answer was that the cancer cells are stronger now. Well that didn't make me feel any better.So we sit and get treatment and wait. It is now almost April. SHe is going for her third treatment with Doxil Monday. Her CA 125 has gone from 97 in Jan to 118 in March and her fluid is tremendous. She is fatigued and uncomfortable. Not the mother I am used to. She used to be OK after a few days after treatments. Like she was totally normal. Now she is always tired, achey, sore, she is shoping in maternity.The doctor continues to tell us the medicine needs time give it time it is working.Forgive me if I am wrong but I think that is a crappy answer. This is my moms life we are talking about. This isn't a lousy cold that we are dealing with. We don't have time to wait and wait and wait. I feel like the cancer is spreading and here we are just waiting for the Doxil to work. What if it isn't??What should I do? I want to go to Sloan K for a second opinion but my mom puts all her faith in this doctor and feels the drug is working and doesn't want to offend her current doctor by going elsewhere. I don't know what else to do!I wonder how many other people that suffer from this aweful disease had alot of fluid. Does this mean she is approaching the end. When I google ascities and PPC it says the prognosis is that much more poor. I don't have the heart to tell my mother. She seems to think she is going to pull through this just like the last 2 times. HELP! CLisaO Fri, 21 Mar 2008 00:00:00 GMT  On 3/20/2008 Too Young wrote:Thank you Col for answering my message. It just helps to know someone is hearing me. Since I have been having treatment for so long so many people ( close friends included ) seem to have lost interest in me. When I was first diagnosed everyone rallied around and now even my closest friend has basically turned her back on me. I know everyone finds cancer hard to deal with but one thing everyone has to remember is that the person who has it, deals with it every second they are alive. My husband has been struggling to come to terms with the fact that I will unfortunately die from this as I am looking ok - good infact. Everyone seems to think you are only suffering when you start to wilt away. How did you deal with your own emotions ? I want to try and help my husband but I really don't know how. Every time I have chemo I say it will be my last but then somehow I find the strength to have another go .... maybe its that cheeky little grin I get from my little boy ! Reading back I've made it sound like I have no support but that is far from the truth - I have had so many friends show true courage through this and be an absolute support. My dearest friend Lee takes a day off work every time I have chemo to come and sit with me and my mum is my guardian angel ! To everyone who reads this and has someone close going through this ordeal please remember just to be there is help enough. I find that even after 15 months of treatment sometimes I just need a shoulder to cry on and sometimes that is hard to find. I unfortunately need some sad answers from anyone who has seen someone go through this as doctors don't know a thing ..... Does this take you slowly ? or can you tell when you are coming to the end ? I hate asking these sort of questions but unfortunately need to know for my own sanity. Love to all of you reading this and keep remembering, as I do, miracles do happen !Kathy Hello Kathy,Firstly let me apologise, somehow this message has been marked as not being tracked and i dont kknow how.Yes we found the same as you, a number of "friends" suddenly disappered when Elaine was diagnosed, like you I appreciate it is difficult to deal with but cancer is so common that 1 in 3 of us will have to deal with it at some time and sticking your head in the sand is no answer. I can only imagine how it must feel for you, I think until you are diagnosed nobody can start to imagine what it must feel like. I think I went through all the stages that most others go through, shock at the news of hearing the diagnosis, anger why us and finally an acceptance and a descision to try and make the most of the time you have left. Elain found it good to talk to other cancer sufferers, she used to attend a weekly session at a local cancer clinic and found this very beneficial. In my job I found taling to people outwith the family helped, sometimes family members just dont want to hear and are not always the best to speak to. I was lucky in my work that I spoke to many strangers at that time and while talking they would discuss family members and illnesses and I would talk about Elain and her condition. SHe was incredibly stong during her illness which was unusual as she was quite a quiet and shy person before being diagnosed. Her faith helped her enourmously, she had always been a devout christian throughout her life.I hope this does not upset you reading this, if so I do honestly apologise. When the cancer returned and the liquid started to gather in her abdomen again the doctors attempted one last batch of chemo but she was to weak to deal with it and she was given pain killers, she fradually deteriorated from that point and in the final 5 to 7 days slipped into unconsciousness and I held her hand untill she quietly slipped away.Take care and keep in touch, my thoughts and prayers are with you and your family, stay as strong as you can.Colin.   Colin Sun, 30 Mar 2008 00:00:00 GMT Dear ColinThank you so much for once again answering my message. I am so ever grateful as I could imagine this is still very hard for you to deal with. I just need to know as much as possible as the doctors are not helping enough. I am in Australia and I thought if I had private cover I would get the best of care, unfortunately this isn't the case.I have been doing my own research and have just found a biotech company called Novogen. They have been testing a drug called Phenoxodiol ( multiple signal transduction regulators - MSTRs ). This is currently undergoing  Phase III clinical trials. Since my doctors have told me there is no other help for me I am going to follow this up and see if I can be included in this trial ..... it actually mentions Primary Pertioneal Cancer as one they are trying to treat  -  Yah ! about time They are treating this with a combination of carboplatin for late stage chemoresistant ovarian cancers plus a few more.Fingers crossed my chemo specialist will look into this before she closes her folder on me one more time ! If anyone else is reading this there are trials for this drug going on all round the world - check out the Novogen website for more information.Until then keep smiling even if sometimes it is through gritted teeth lolKathy Too Young Mon, 31 Mar 2008 00:00:00 GMT I hear you, my Mom went throught the same ordeal.  Unfortunately she lost her battle in October.  I found more information on the internet and it gave me hope, but also scared me at the same time.  There is alot of good info out there but I think the key is persistance.  PPC is a tough, tough cancer and from what I know not cureable but hopefully through treatments they will extend your mom's time.  Please keep positive and help her fight this dreadful desease.  My prayers are with you. Barbpinky Thu, 10 Apr 2008 00:00:00 GMT Just wanted to know how you all are doing.  My Mom lost her battle in October with the same diagnosis.  She went the same route with treatments and she never REALLY heard the words "not cureable"  PPC is in an area that is inoperable and the acities buildup is the main indication of how treatments are going (from my experience).  I personally have alot of "what if we did this" or "what if she would have done that" going thru mind mind on a daily basis but I think that comes down to denial.  My Mom was a perfectly healthy 76 year old.  Walked, swam, bowled and golfed almost everyday of the week until she got this news and went into seclution.  Attitude is everything but God is more powerful.  You do what you have to do to make yourself feel you have exhausted all your resources.  We did not let any of the doctors off the hook with responses that we did not understand.  They may not like it, and at the end of the day they (beleive it or not) are as frustrated as you are at times.  This is such a rare cancer that they may not have the answers but should be willing to research anything that you present to them within reason.  I could write a book here but I hope and pray you and your Mom are fighting with everything you have.  If it gets really bad get a book called Final Gifts it helped me and my family more than I can say and I was at peace when she left us.  Take care, we have a Relay for Life in memory of cancer victims and survivors,  I will pray and light a luminary for everyone fighting this horendous desease.  Barb Barbpinky Thu, 29 May 2008 00:00:00 GMT