Primary Peritoneal Carcinoma

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.

On 2/8/2008 jennykf wrote:

To: Everyone

I 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.

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.

 

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.

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

 

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 xxx

What 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. 

 

 

 

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

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.

 

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 you

I 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.