Primary Peritoneal Carcinoma

I have just found this site and want to share my story with everyone.  My mother was diagnosed with PPC in 2001 at the age of 70.  She went through a course of chemo and has been without symptoms since, although her CA 125 (as low as 25 when she completed chemo) has steadily climbed these past six years.  She has had regular blood tests and CT scans every 4 months.  Recently her CA 125 more than doubled from 800+ to 1700+ since her last test.  Today she had a CT/PET scan and we are awaiting the results.

We know that she responded to chemo the first time and are optimistic that she will respond again.  The doctor says there are at least three new chemo therapies that have been developed since her last treatment.

I am sharing this in hopes that someone will take comfort in knowing that it is possible to go as long as six years between chemo and recurrence and that there are new drug therapies available.

My thoughts are with all of you dealing with this dreadful disease and those who have lost loved ones to it.

Holly

On 1/29/2007 Kellbell529 wrote:

My mom was diagnosed with Primary Peritoneal Carcinoma (stage 4) on June 28, 2006. For a year prior, my mom had symptoms similar to someone with irritable bowel syndrome or an ulcer.  She had stomach pains, constipation, and towards the end of May 2006 and until her diagnosis, started to have rapid weight loss, fluid build up in her abdomen and fatigue.  For the year prior to her diagnosis, she had CT scans, ultrasounds, endoscopy's, pap smears, you name it.  All of those tests came back clear until June 28th.  They decided her course of treatment would be chemotherapy.  She was so weak and frail.  They put in a mediport on Friday, July 14th, and that Sunday on July 16th she was put in the hospital, because she got a blood clot in her arm from the mediport.  She was in the hospital and while in there was in excruciating pain.  She was vomiting what looked like coffee grinds and couldn't really eat.  On Wednesday, July 19th, I spent the day with my mom in the hospital and she was vomiting, in pain, lethargic, you name it. They took her for an x-ray to make sure her bowels weren't twisted..they weren't.  That evening we got a phone call saying she was having trouble breathing and she was being taken to the ICU, my mom died at 2:25 a.m. on July 20th., because of a pulmonary embelism  My mom was 58 years old and was diagnosed only 3 weeks earlier.  My mom also only saw her newly born granddaughter for 2 and a half weeks (she was born on June 30, 2006).  I am so angry at this disease.  I am so angry that it is so mean and not easily detectable.  I am so angry that I'm 28 years old and my mom is dead, especially when I need her most.  I am so angry that this disease isn't being researched as much as it should be.  Is there a foundation or something where we can advocate and raise money for research???  This cancer MUST have research. It's mortality rate is very high.  I feel like I need to do something for my mom....for her memory and for the lives of others living with this awful mean disease!

Thank you for listening,

Kelly

Kelly

I am sooo very sorry to hear about your mom.  I know how hard it all is to go through.  Reading your story was like reading my very own.  My mom died in Aug of 2005 from this disease.  She had a complete hysterectomy over 30 years ago.  The disease formed from the epithelial tissue in the lining of her pelvis.  She was diagnosed in July and died in Aug.  Died during her first chemo treatment from a pulmonary embellism.  This disease is horrifying to me.  Do you happen to know if this is a hereditary disease?  I have 2 girls and I am terrified myself and for them with this disease.  If I find other information about this disease i will email the link.  Please keep in touch Kelly.

Holly says, "I am sharing this in hopes that someone will take comfort in knowing that it is possible to go as long as six years between chemo and recurrence and that there are new drug therapies available."

Dear Holly,

I wanted to let you know how much I appreciate the message you posted about your mom's experience. I'm so happy to hear she has been in remission for over five years.

My mother found out she has cancer two weeks ago. Her doctor performed surgery this past Monday to remove as much of the cancer as possible. Following the procedure, the doctor informed us of the diagnosis - Primary Peritoneal Carcinoma - and indicated that this cancer tends to respond well to chemotherapy. The doctor said she would not give us an expectation in terms of how much time might be ahead because chemotherapy is so much better than it was just a few years ago, with many drugs available, and so many patients have beaten the odds. None of us really know how long we will live and with something like this, attitude is everything!

I've been trying to research this disease and am so glad to have found your message. I already shared your mom's experience with my mother, and it is strengthening our hope. She will fight this disease with her best effort. Thank you so much for this positive news.

My thoughts are with all of you who are affected.

Take great care,

Kristi

On 4/6/2007 Daughterofduree wrote:

I have just found this site and want to share my story with everyone.  My mother was diagnosed with PPC in 2001 at the age of 70.  She went through a course of chemo and has been without symptoms since, although her CA 125 (as low as 25 when she completed chemo) has steadily climbed these past six years.  She has had regular blood tests and CT scans every 4 months.  Recently her CA 125 more than doubled from 800+ to 1700+ since her last test.  Today she had a CT/PET scan and we are awaiting the results.

We know that she responded to chemo the first time and are optimistic that she will respond again.  The doctor says there are at least three new chemo therapies that have been developed since her last treatment.

I am sharing this in hopes that someone will take comfort in knowing that it is possible to go as long as six years between chemo and recurrence and that there are new drug therapies available.

My thoughts are with all of you dealing with this dreadful disease and those who have lost loved ones to it.

Holly

Hi Holly

Thankyou so much for your above message. I am a 30 year old sufferer of this terrible disease and I am appreciating any good feedback I can find, as any information at all is hard to come by.

I was diagnosed in December 2005 and am about to have my 5th chemo. I started on paxlitaxol and carboplatin but had side effects and was changed to doclitaxol and carboplatin. You said above about other chemo treatments there were now and I was wondering if you have found out what they are. I am in Australia and am wondering if treatment is different any where else.

I hope your mother has once again responded well to treatment and is back on the road to recovery !

My thoughts and wishes are with you

Kathy

On 1/19/2007 Too Young wrote:

Hi Survivor  I am a married 29 year old with a 4 month old baby and have just been diagnosed with PPC. I am about to start chemo this Tuesday and am wondering if you have any advice ? I had a pap smear after my little boy was born and this showed an abnormal smear which ended up to be cancerous cells on my cervix. They were all removed and when I was having my check up for that they found the tumour in my stomache. I had a radical hysterectomy, bilateral Salpingo Oopherectomy and omenectomy debulking. They say I am at stage 3 but wont explain much else. My oncologist seems quite positive about getting all the cancer but every where I read there doesnt seem to be a lot of hope. The cancer has spread to the lining of my liver, bowel, bladder and underneath my diaphram. What stage were you at when you started chemo ? any tips on handling the side effects of chemo ?? I want to prepare myself as much as possible !! Any advice would be great  

Hello. My name is Shannon..I am 31 years old and just recently I had an unusual Pap as well. Also was diagnosed with HPV..the strain that is known to cause cancer. I went in to my doctor initially because I had extreme bloating..lower back pain, frequent urination and heavy periods. I was DX with IBS some years back, but after the extreme bloating and heavy periods I decided to try to DX myself. I hit a survivor story message board for Ovarian cancer and read about their lives leading up to DX with OC. So I got scared and ran to the Docs. they did their ultra sounds and blood tests and called a week later and said nothing was wrong. But then 3 weeks later I get a call and they say I had an abnormal Pap and to follow up in 4-6 months. Well I asked what the exact test results said from the lab and they said CIN1. So I wasn't really worried. But then I did some more research and found that most people with CIN1 have HPV so I called my Doc back and had them run that test.  it was postive and the strain I have is the strain that causes Cancer.needless to say I go in for a Colposcopy this Friday, but I find myself not convinced that it is just CIN1 due to the symptoms that I have been having. Does this sound like what you went through. I have to prepar myself and so far I have been the one to push for tests to begin with. If I have no idea what I am getting into they will miss something. Looking back on my miserable feeling I have had for years...I know that This is something more. Please...if anyone has any info on what I need to do and ask my doc...let me know.

On 5/29/2007 Dragonfly2112 wrote:

 

On 1/19/2007 Too Young wrote:

Hi Survivor  I am a married 29 year old with a 4 month old baby and have just been diagnosed with PPC. I am about to start chemo this Tuesday and am wondering if you have any advice ? I had a pap smear after my little boy was born and this showed an abnormal smear which ended up to be cancerous cells on my cervix. They were all removed and when I was having my check up for that they found the tumour in my stomache. I had a radical hysterectomy, bilateral Salpingo Oopherectomy and omenectomy debulking. They say I am at stage 3 but wont explain much else. My oncologist seems quite positive about getting all the cancer but every where I read there doesnt seem to be a lot of hope. The cancer has spread to the lining of my liver, bowel, bladder and underneath my diaphram. What stage were you at when you started chemo ? any tips on handling the side effects of chemo ?? I want to prepare myself as much as possible !! Any advice would be great  

Hello. My name is Shannon..I am 31 years old and just recently I had an unusual Pap as well. Also was diagnosed with HPV..the strain that is known to cause cancer. I went in to my doctor initially because I had extreme bloating..lower back pain, frequent urination and heavy periods. I was DX with IBS some years back, but after the extreme bloating and heavy periods I decided to try to DX myself. I hit a survivor story message board for Ovarian cancer and read about their lives leading up to DX with OC. So I got scared and ran to the Docs. they did their ultra sounds and blood tests and called a week later and said nothing was wrong. But then 3 weeks later I get a call and they say I had an abnormal Pap and to follow up in 4-6 months. Well I asked what the exact test results said from the lab and they said CIN1. So I wasn't really worried. But then I did some more research and found that most people with CIN1 have HPV so I called my Doc back and had them run that test.  it was postive and the strain I have is the strain that causes Cancer.needless to say I go in for a Colposcopy this Friday, but I find myself not convinced that it is just CIN1 due to the symptoms that I have been having. Does this sound like what you went through. I have to prepar myself and so far I have been the one to push for tests to begin with. If I have no idea what I am getting into they will miss something. Looking back on my miserable feeling I have had for years...I know that This is something more. Please...if anyone has any info on what I need to do and ask my doc...let me know.

Hi Shannon

My only advice to you is to trust your gut feeling and keep pushing doctors to do the tests. They found I had a large tumour in my stomach but then waited another three weeks to operate. After having 6 lots of chemo they have told me there is nothing else they can do for me .... dont you love doctors ! so now i am seeing every chinese herbalist and naturopath possible and hoping that one gives me a miracle. There is unfortunately not that much information on this horrible disease so do as I said I get back to the doctors and push for more tests. If they wont do it go see some one else. I wish I had been a bit more pushy and hadnt just sat back thinking the doctors knew best as I may not be in the situation I am in now. Thinking of you Shannon and wishing all the best. Please let me know how you get on

Kathy  

On 6/16/2007 Too Young wrote:

 

On 5/29/2007 Dragonfly2112 wrote:

 

On 1/19/2007 Too Young wrote:

Hi Survivor  I am a married 29 year old with a 4 month old baby and have just been diagnosed with PPC. I am about to start chemo this Tuesday and am wondering if you have any advice ? I had a pap smear after my little boy was born and this showed an abnormal smear which ended up to be cancerous cells on my cervix. They were all removed and when I was having my check up for that they found the tumour in my stomache. I had a radical hysterectomy, bilateral Salpingo Oopherectomy and omenectomy debulking. They say I am at stage 3 but wont explain much else. My oncologist seems quite positive about getting all the cancer but every where I read there doesnt seem to be a lot of hope. The cancer has spread to the lining of my liver, bowel, bladder and underneath my diaphram. What stage were you at when you started chemo ? any tips on handling the side effects of chemo ?? I want to prepare myself as much as possible !! Any advice would be great  

Hello. My name is Shannon..I am 31 years old and just recently I had an unusual Pap as well. Also was diagnosed with HPV..the strain that is known to cause cancer. I went in to my doctor initially because I had extreme bloating..lower back pain, frequent urination and heavy periods. I was DX with IBS some years back, but after the extreme bloating and heavy periods I decided to try to DX myself. I hit a survivor story message board for Ovarian cancer and read about their lives leading up to DX with OC. So I got scared and ran to the Docs. they did their ultra sounds and blood tests and called a week later and said nothing was wrong. But then 3 weeks later I get a call and they say I had an abnormal Pap and to follow up in 4-6 months. Well I asked what the exact test results said from the lab and they said CIN1. So I wasn't really worried. But then I did some more research and found that most people with CIN1 have HPV so I called my Doc back and had them run that test.  it was postive and the strain I have is the strain that causes Cancer.needless to say I go in for a Colposcopy this Friday, but I find myself not convinced that it is just CIN1 due to the symptoms that I have been having. Does this sound like what you went through. I have to prepar myself and so far I have been the one to push for tests to begin with. If I have no idea what I am getting into they will miss something. Looking back on my miserable feeling I have had for years...I know that This is something more. Please...if anyone has any info on what I need to do and ask my doc...let me know.

Hi Shannon

My only advice to you is to trust your gut feeling and keep pushing doctors to do the tests. They found I had a large tumour in my stomach but then waited another three weeks to operate. After having 6 lots of chemo they have told me there is nothing else they can do for me .... dont you love doctors ! so now i am seeing every chinese herbalist and naturopath possible and hoping that one gives me a miracle. There is unfortunately not that much information on this horrible disease so do as I said I get back to the doctors and push for more tests. If they wont do it go see some one else. I wish I had been a bit more pushy and hadnt just sat back thinking the doctors knew best as I may not be in the situation I am in now. Thinking of you Shannon and wishing all the best. Please let me know how you get on

Kathy  

 

 

Hi Kathy, Thanks for replying. I am doing my best to push doctors. At least this time I am dealing with my Doctor's PA instead of my actual doctor. He told me I has stress and to go to a spa or message therapist. Now at least I have a direction to follow and the PA is young and has more knowledge of the symptoms and takes people seriously. What caused you to go to the DR.s?. Did you have an abmormal pap as well? So far I am not finding anyone with symptoms that has HPV or Dysplasia. I do however suffer from alot of symptoms as I stated in my first message and I am very curious about all that. Why do I have symptoms at all. It is driving me crazy. If you have some time, please tell me your story.  I am very sorry to hear you are going through what you are going through. It is a hard thing to cope with. You are iim my prayers and if you need to chat I am here. Shannon

Hi all,  I am also new to this site and found some helpful info. My mom was diagnosed with PPC in June 05. She was having abdm pain and was brought to hospital to have a bowel obst removed. Her doc didn't remove the obstruction, just closed her up and told us she had PPC and had a week to live. Here we are two yrs later and she is still fighting. She had chemo and few months of remission but in Jan she was having pain again and CT showed fluid surrounding the liver, but not in it. She had it removed and is is cancer cells. She had to go back and have it drained again about six weeks later. They have increased her chemo drugs but some of fluid is still there. Here is the problem though, her CA125 has never been high. The highest it has been is 130, currently it is 18. Her doc is stumped and admits it. (we like her doc, he gave us lots of hope when we need it and he is the best in our area) he is bringing her case to the docs in his cancer clinic and has suggested she has surgery to remove part of the liver that he thinks could be producing the fluid. I am in the medical field and I am worried that once they open her up and expose the cancer to air it will accelerate it, like you hear so often. I hate this cancer! She was healthy and active before this. She is only 57, I am terrified of the thought of losing my mom. There is so little out there regarding this info, I feel so alone. Any insight to this would be great. Thanks!

L isa

Dear Lisa,

I am glad you found this list and shared your mom's history with PPC. My heart goes out to you and your mom. The posts here are such a gift, a wonderful source of support. I hope you will find some comfort as you continue to read the messages and share your journey with us.

You mentioned that exposure to oxygen can make cancer cells spread. I'd never heard this before. Can you please explain?

Just this morning, I was reading about some alternative cancer therapy that brings oxygen to the cells (I think). The website also warned that alternative and conventional therapy should not be mixed because they often contradict each other. One really needs to be careful when deciding what is best with so much conflicting information out there. It is nearly a full time job trying to find reliable information.

Wow, Lisa, what an example your mom is of rising above the odds and surviving in spite of what others said. Yes, it is really challenging to know what steps are best and how to help your loved one maintain some quality of life with all the fighting this cancer entails. I know how difficult it is to find information, then determine what is trustworthy, balancing options of conventional and alternative therapy. All I can say is do your best and please remember to take great care of yourself while you are supporting your mom. I hope you find the answers you need to help your mom decide what route to take.

My mother was diagnosed with PPC at the end of March 2007 after not feeling well (and many tests and doctor visits) since the previous fall. She had surgery ten days later, and completed chemo #5 yesterday. As you know, it's been quite a whirlwind for my family. The hardest part for my mother is that she is used to living a very busy, active life, with lots of travel, attending meetings all over the country. Right now, she must do whatever is necessary to fight this cancer. It's been hard for her not being able to "plan" for the future.

We love her gynecologic oncologist and are so grateful for the care she is receiving. I know not everyone is so fortunate. However, my mother is  beginning to realize the chemo is hard on her body. This is making her somewhat depressed, worrying about what's ahead, as well as reminding me of the reality of this disease.

I'm doing my best to eat healthy food and start to go on short walks with my mother because I believe lifestyle factors play a role in boosting the immune system and fighting the cancer, along with positive thinking, minimizing stress (easier said than done!), and releasing emotions. I recently started some therapy myself because of the role I'm playing as a caregiver trying to balance my own needs with those of my mother (and others).

I'd love to hear advice from others in terms of lifestyle factors that seem to help during chemo as well as once a person goes into remission, which I hope my mother will enter soon.

Hugs to all of you,

Kristi

Hi!

 Regarding the air causing cancer to spread, as I said in my message, you hear so often that once someone has surgery the cells seem to spread quickly. As far as I know there is no proven results about this. Lets keep in touch?!

Take care,

Lisa