Primary Peritoneal Carcinoma

off2parisfrance@yahoo.com · December 2009

dustygal1030 said:
3 Yr Survivor
I wish i had found this website when i was going thru treatment. This is awesome, because i couldn't find anything on Primary Pereteneal Carcenoma when i was diagnosed in Aug 2005. I went thru 6 treatments of Taxol/Carboplatin. I had a hysterectomy in 2001, so i didn't even have ovaries to start with. The cancer had already started to spread when i was diagnosed. I had a 9cm(about the size of an eggplant) tumor in my omentum(removed)(looked like i was 6 months pregnant), spots on diaphram(removed the spots), spots on lymph nodes beside ovary area(removed lymph nodes), 2 spots on my colon(removed 12 inches of lower colon). My CA-125 was 1500 before surgery. AND NOW.................stays between 10 and 14. YIPEEE I went every 3 mo for check-ups and now am going every 6 mo, since my 2 yr anniversary. Congratulations to all of you!
I go to UNC Chapel Hill in Chapel Hill, NC. I would recommend everyone with this type of cancer to go there, they are just great!

Thank you
Dustygal1030 every day I look for another small sign of Hope. You were my sign for today!. I was just diagnosed November 9th, 2009. I had a tumor all twisted up in my intestines pressing against my rectum that was about the size of a softball. I too had some spots of cancer on my diagphram, lymph nodes and omentum. I had a colon re-section and my debulking surgery on Nov 12. I was so VERY HAPPY to read your post and look at the DATE of your post!!!!!! I will start chemo on Jan 5th and be part of the clinical trial currently be conducted at: UNC Chapel Hill!!!!!! Yes! Another reason to be oh so happy!!!!! I am a survivor of breast cancer too. I was diagnosed Feb 17th 1999 with a stage I, one centimeter tumor, 4 rounds of chemo, modified radical mastectomy and prophylactic mastectomy on left side... and here I am.
Once again thank you so much, I'm checking back every day!

cehjames · December 2009

overin6 said:
Definitely an inspiration!
I was just diagnosed in August of this year and am 7 weeks post surgery and about to have my second chemo treament this week. Like so many of you, I was shocked to get this diagnosis as I had my ovaries removed 4 years ago after my second bout with breast cancer and learning I am BRCA1 positive. No one ever discussed this risk and that I should continue to have CA125 tests run each year. My CA 125 prior to surgery was 3600! It was down to 119 after surgery .
Hearing survivor stories makes me feel so much better - thank you for posting your stories.

My chemo consists of 2 IV taxol/cisplatin and then 4 combo IV/cis and IP carbo - is that the same protocol you had? Any advice on how to get thru it - I understand it leaves you very fatigued.

chemo protocols for PPC
hi there, i live in London in the UK and my mum was diagnosed late October with primary peritoneal cancer. her NHS oncologist started her straight away on carboplatin, 6 treatments each 3 weeks apart. we went to a private oncologist (highly recommended at the London Oncology Clinic in Harley Street) for a second opinion because we also have private medical insurance.

The private oncologist said that he agreed with carboplatin as the best treatment, but that as PPC is a diagnosis of exclusion she should have had tests done to exclude the primary site being elsewhere (bowel, stomach or breast). i asked him about the IP chemo and the use of taxol in addition to carboplatin and he said that the IP chemo is not proven to be effective and if the carboplatin does not get rid of it then they will try taxol next. BUT on all the american sites where people have posted comments i have been onto trying to research this disease people seem to talk a lot about these two things:

Combination therapy with taxol and a platinum chemo either carbo or cisplatin as a first line therapy seems to be the standard in the US
AND
A combination of IV and IP for either/both of these drugs.

SO -My question for any of you amazing ladies on this site is: why do you think the standard first line treatment is different in the UK and the US? i cannot understand why it should be different here. Also, they said that as my mum is stage 3a, there is not really any point in surgery because the bits of cancer are too small. i am hoping this is a good thing!

we are all keeping positive and i am making sure that she does not just sit at home and fret. a puppy is my next idea...

thank you for any thoughts you may have that can help me get the very best treatment for my wonderful young mum who is just 59.

Clare

ccarney · January 2010

cehjames said:
chemo protocols for PPC
hi there, i live in London in the UK and my mum was diagnosed late October with primary peritoneal cancer. her NHS oncologist started her straight away on carboplatin, 6 treatments each 3 weeks apart. we went to a private oncologist (highly recommended at the London Oncology Clinic in Harley Street) for a second opinion because we also have private medical insurance.

The private oncologist said that he agreed with carboplatin as the best treatment, but that as PPC is a diagnosis of exclusion she should have had tests done to exclude the primary site being elsewhere (bowel, stomach or breast). i asked him about the IP chemo and the use of taxol in addition to carboplatin and he said that the IP chemo is not proven to be effective and if the carboplatin does not get rid of it then they will try taxol next. BUT on all the american sites where people have posted comments i have been onto trying to research this disease people seem to talk a lot about these two things:

Combination therapy with taxol and a platinum chemo either carbo or cisplatin as a first line therapy seems to be the standard in the US
AND
A combination of IV and IP for either/both of these drugs.

SO -My question for any of you amazing ladies on this site is: why do you think the standard first line treatment is different in the UK and the US? i cannot understand why it should be different here. Also, they said that as my mum is stage 3a, there is not really any point in surgery because the bits of cancer are too small. i am hoping this is a good thing!

we are all keeping positive and i am making sure that she does not just sit at home and fret. a puppy is my next idea...

thank you for any thoughts you may have that can help me get the very best treatment for my wonderful young mum who is just 59.

Clare

Stand Firm
Clare,

I was diagnoised with PPC in Jan. 09. I had my first debulking surgery in Feb. Then I had 6 cycles of carbo and taxol and two more of just taxol. Then in Oct. 09. The doctor for more cancer. I had a hystorectomy then. I will be see if I will be making it into the clinical trial EC145 on Jan 12, 10. The reason for the second round of chemo is that I am plactium restiant.

I realy think that you need to get a second option. My doctor is one of the top five in MN and he is having me to both surgery and both chemos.

I wish you the best.

Cassie

Milsdaughter · January 2010

bb88 said:
similar situation
Hi, I have a similar situation. My mom is 61 and has just been diagnosed with peritoneal. They also have not found a tumor and are theorizing its peritoneal. She also lives in Florida and is being treated at the Moffit center which seems to be an amazing hospital that is just a cancer hospital. We just found out about this three weeks ago. She went to a lung doctor when she was shortness of breath only to find out she had malignant pleural effusion. That is cancer cells in fluid filling the lungs. My mother has never smoked and is in good health. I have been in a state of shock and its hard to be informed that this cancer is genetic. She also has fluid in her abdomen. I live in New York and have a job that makes it difficult for me to leave NY for a period of time. You feel helpless so far away. She is my mother and I would do anything to help which is why I joined this site. Its nice to know your not alone and people are feeling and going through the same situation. The moffit center in Tampa Florida has been very informative and caring. I dont know where in Fl you mom is but you should check them out. Keep positive is sthe best advise I can give you and let your mom know you love her and are fighting for her, we are miles away but only a second to call and say I love you.....
Best...

your mom...my mom
Our moms are very close in age...mine is 63 but you would think she was in her early 50's

She was diagnosed a little over 3 years ago...right after I had my fist child was born
She was experiencing nausea which made her think something was not right
Sure enough she was diagnosed with PPC…she went through chemo and debulking which rid her of the PPC she was carrying. However shortly after it came back. We were told this is a reoccurring cancer and even if they rid her body of it most likely it will grow back
We did not realize it would grow back that fast.
She did a Clinical study that left her feet and mouth riddled with soars….at this point she was also having kidney issues which caused a major infection to take over her body…this fall she spent some time in the hospital to rid her body of the infection and was not able to have chemo while doing so – her CA count rose to 900…..we found this out the day I delivered my son….
She was able to start a new program involving Gemzar one week and then Carbo and Taxol the next week – with 14 days off in between.
Within a month her count went down to 200….
She had a reaction to the carbo drip so now she has to be admitted to the hospital over night when she has the Carbo/Taxol cocktail.
Her energy level is mostly gone at this point – she had a transfusion last week to see if it would help her but it did not have the effect that is has in the past and she is still so tired….I am just praying that she can keep it up and get her counts down so she can be on a maintance schedule and give her body a brake….
It has been a long road since she was diagnosed and I don’t know where it is going to take us….
I do remember when she was first diagnosed we were not sure if we would have her for more then a year….look at us now  she has seen my first son go to preschool and was in the room for the birth of my second son this fall!
You have to have faith and follow your moms lead….

cehjames · January 2010

ccarney said:
Stand Firm
Clare,

I was diagnoised with PPC in Jan. 09. I had my first debulking surgery in Feb. Then I had 6 cycles of carbo and taxol and two more of just taxol. Then in Oct. 09. The doctor for more cancer. I had a hystorectomy then. I will be see if I will be making it into the clinical trial EC145 on Jan 12, 10. The reason for the second round of chemo is that I am plactium restiant.

I realy think that you need to get a second option. My doctor is one of the top five in MN and he is having me to both surgery and both chemos.

I wish you the best.

Cassie

chemo protocols
hi Cassie, thanks for your comments. basically mthe two best doctors i could find in my region of the UK said the same thing, carboplatin....my mum is having a hysterectomy, her omentum and appendix removed tomorrow, then after 4 weeks will start the remaining three carboplatin treatments. we are all hoping that the scans were correct and she has no great big tumour anywhere...anyway first thing is getting over a big operation, and then we will see.

good luck to you, & thanks

Clare

MInurse26 · January 2010

so you are still in
so you are still in remission? I am 26 and was diagnosed in June 2009, I feel alone.. the only other peritoneal survivor I knew just passed away last week

I had a hysterectomy in June and have had 6 rounds of carbo/taxol and so far all of my scans look good with the exception of a few lymphoceles.. I could really use some inspiration.. All I wanted in life is children.. newly married to top everything off..

Tina Brown · January 2010

MInurse26 said:
so you are still in
so you are still in remission? I am 26 and was diagnosed in June 2009, I feel alone.. the only other peritoneal survivor I knew just passed away last week I had a hysterectomy in June and have had 6 rounds of carbo/taxol and so far all of my scans look good with the exception of a few lymphoceles.. I could really use some inspiration.. All I wanted in life is children.. newly married to top everything off..

Hello Mlnurse
You are not
Hello Mlnurse

You are not alone. I was diagnosed in Nov 2009 with PPC. I am a little older than you at 49. I have had 2 rounds of chemo The 3rd one this week) - Carboplatin/taxol and I try to have a positive outlook. I am nearly half way through and will be having a scan soon. I have met a lady who also had PPC 18 months ago and her CA125 is something like 18. So don't despair, my friend Teresa is in remission and whenever she has a scan & CA125 the cancer hasn't come back. She is my inspirtation & she could be yours.

Don't give up Tina xxx

ccarney · January 2010

cehjames said:
chemo protocols
hi Cassie, thanks for your comments. basically mthe two best doctors i could find in my region of the UK said the same thing, carboplatin....my mum is having a hysterectomy, her omentum and appendix removed tomorrow, then after 4 weeks will start the remaining three carboplatin treatments. we are all hoping that the scans were correct and she has no great big tumour anywhere...anyway first thing is getting over a big operation, and then we will see.

good luck to you, & thanks

Clare

After Surgery
Clare,

I hope that your mother is doing well after her surgery. What did they find?

I have had a PET/CT and a CT scan. Both came put that I did not have any more cancer. I have heard this before. Because of the good news I have been taken Tamoxifen. This block the product of estragen in the body. I hope that this works for me.

Have the doctor do a test to see what drugs will not work for your mother. My doctor told me that all doctors that the carbo route because that is the way they were trained. But if they use this test then they can use a drug that really work on eradicating the cancer.

I hope that this helps.

Thanks
Cassie

ccarney · January 2010

MInurse26 said:
so you are still in
so you are still in remission? I am 26 and was diagnosed in June 2009, I feel alone.. the only other peritoneal survivor I knew just passed away last week I had a hysterectomy in June and have had 6 rounds of carbo/taxol and so far all of my scans look good with the exception of a few lymphoceles.. I could really use some inspiration.. All I wanted in life is children.. newly married to top everything off..

Keep you head up HIGH
Minurse26,

I was 38 when I was diagnoised. The OB found it when doing a laprascopic procedure to find out why I could not have childern. I understand how it feels to be alone. My doctor introduced to me a women who is about 10 years older than me and did not want childern so she really does not understand how I was feeling. I do understand I am older than you, but marriage and childern were what I want.

I know that this is hard to go though. My husband and I really wanted childern and still do. So I am hoping to adopt a child in the near future. This too can be you. Keep you head up. You are a survivor for a reason. Please email me anytime. I would love to talk to you more.

sports_massage@hotmail.com

Keep your head up HIGH!
Cassie

PS I live in Minneapolis, MN.

cehjames · February 2010

ccarney said:
After Surgery
Clare,

I hope that your mother is doing well after her surgery. What did they find?

I have had a PET/CT and a CT scan. Both came put that I did not have any more cancer. I have heard this before. Because of the good news I have been taken Tamoxifen. This block the product of estragen in the body. I hope that this works for me.

Have the doctor do a test to see what drugs will not work for your mother. My doctor told me that all doctors that the carbo route because that is the way they were trained. But if they use this test then they can use a drug that really work on eradicating the cancer.

I hope that this helps.

Thanks
Cassie

after hysterectomy
Hi Cassie,

They found a little bit of cancer on one ovary, but nothing else and said the carboplatin chemo had worked very well and there is no visible cancer inside her now. she will have 3 more carboplatin treatments and then will be technically in remission. the surgeon and oncologist have said that it could not have gone more smoothly...i am really over the moon but a part of me is scared that it will come back soon, though i dont know why other than a lot of blog posts seem to think this is a cancer that will not go away.

i will mention the idea of tamoxifen to her so she can ask the oncologist the next time she goes. is there any other follow up treatment or lifestyle things she could consider?

Great to hear that you are clear! thank you very much for your help.

Clare

AyJay · April 2010

coder59 said:
Help for fluid buid up
Dear TnTClark- My mom was dx with stage 4 metastatic breast cancer 3 years ago this December. Even though it had been 24 years since her last recurrence of breast cancer, she was now being told that the cancer had metastized as peritoneal cancer. Like your mother, she was also having problems with significant fluid build-up around the abdomen and into her back requiring continuous trips to the ER. In January 2009 at the Cancer of America in Philly, she had surgery for placement of a Pleurx catheter. This has made her life so much easier. We now can take the fluid off of her at home and we do so every couple of days. She is able to do this herself but prefers someone to help with this. It is extremeley easy to hook this up and takes less than 5 minutes to perform. Since mom's fluid continues to build up daily, this has been a life saver for her not having to go to the hospital every couple of days. And since the tubing is placed under her skin, there is no need to continually puncture her stomach with painful needles. Hope this information helps your mom.

CTCA
I had never heard of Cancer Treatment Centers of America until your posting, and I am so grateful. I just found out there is one in Philly which is only an hour away! What a marvelous place...filled with so much hope for body, mind and spirit. And nutrition counseling is a part of the treatment. I had some questions, so chatted with a rep online and she was wonderful..she answered all my questions and concerns, and even checked to see if my insurance would be accepted. THANK YOU coder59 for mentioning the CTCA. {{{}}}}}} <-- e-hugs

galaxygirl · April 2010

dustygal1030 said:
3 Yr Survivor
I wish i had found this website when i was going thru treatment. This is awesome, because i couldn't find anything on Primary Pereteneal Carcenoma when i was diagnosed in Aug 2005. I went thru 6 treatments of Taxol/Carboplatin. I had a hysterectomy in 2001, so i didn't even have ovaries to start with. The cancer had already started to spread when i was diagnosed. I had a 9cm(about the size of an eggplant) tumor in my omentum(removed)(looked like i was 6 months pregnant), spots on diaphram(removed the spots), spots on lymph nodes beside ovary area(removed lymph nodes), 2 spots on my colon(removed 12 inches of lower colon). My CA-125 was 1500 before surgery. AND NOW.................stays between 10 and 14. YIPEEE I went every 3 mo for check-ups and now am going every 6 mo, since my 2 yr anniversary. Congratulations to all of you!
I go to UNC Chapel Hill in Chapel Hill, NC. I would recommend everyone with this type of cancer to go there, they are just great!

ppc
Hi Dustygal1030
Hoping this finds you in good health. It's been a year since you posted and I was wondering how you are doing. I am in my second year of this frustrating disease. After so many ct scans and finding nothing except that my CA 125 was out of the norm. It never was higher than 250 so the drs. never seemed that concerned. I did look pregnant and had other symptoms. Finally drs. agreed to do exploratory surgery and found stage 3 PPC. Treating it as though it was ovarian. I was in a short remission for about 5 months and then back on chemo ever since. My CA 125 is again starting to rise and my current ct. scan came back ok. I've been through so many chemos,so how can one not be frustrated.

Tina Brown · April 2010

galaxygirl said:
ppc
Hi Dustygal1030
Hoping this finds you in good health. It's been a year since you posted and I was wondering how you are doing. I am in my second year of this frustrating disease. After so many ct scans and finding nothing except that my CA 125 was out of the norm. It never was higher than 250 so the drs. never seemed that concerned. I did look pregnant and had other symptoms. Finally drs. agreed to do exploratory surgery and found stage 3 PPC. Treating it as though it was ovarian. I was in a short remission for about 5 months and then back on chemo ever since. My CA 125 is again starting to rise and my current ct. scan came back ok. I've been through so many chemos,so how can one not be frustrated.

Hi galaxygirl
I was diagnosed with PPC last November and have just finished chemo - carbo/taxol. I didn't have surgery but a CT found the cancer. My CA 125 is down from 1119 to 65 so i am now waiting to see how it behaves off the chemo. However I have a friend who was diagnosed Sept 07 and she is still well and in remission.

Keep in touch, I go on the ovca boards and chat to ladies on there.

Tina x

tes55 · June 2010

ccarney said:
Keep you head up HIGH
Minurse26,

I was 38 when I was diagnoised. The OB found it when doing a laprascopic procedure to find out why I could not have childern. I understand how it feels to be alone. My doctor introduced to me a women who is about 10 years older than me and did not want childern so she really does not understand how I was feeling. I do understand I am older than you, but marriage and childern were what I want.

I know that this is hard to go though. My husband and I really wanted childern and still do. So I am hoping to adopt a child in the near future. This too can be you. Keep you head up. You are a survivor for a reason. Please email me anytime. I would love to talk to you more.

sports_massage@hotmail.com

Keep your head up HIGH!
Cassie

PS I live in Minneapolis, MN.

primary peritoneal cancer
My 35 year old daughter was diagnosed with adencarcinoma of the mullarian origin then after a complete hysterectomy the new term is peritoneal cancer. She just had a son 8 months ago while she had this cancer. So I consider my grandson a real blessing. I wanted to know if everybody survives this cancer? Thanks Mom (caregiver)

Tina Brown · June 2010

tes55 said:
primary peritoneal cancer
My 35 year old daughter was diagnosed with adencarcinoma of the mullarian origin then after a complete hysterectomy the new term is peritoneal cancer. She just had a son 8 months ago while she had this cancer. So I consider my grandson a real blessing. I wanted to know if everybody survives this cancer? Thanks Mom (caregiver)

Dear Tes55
I have Peritoneal cancer and it is classed as a chronic cancer. They can't offer a cure but they can manage it with treatment. I have read that ladies can be in remission years before a recurrance. You need to check out the Ovarian Cancer board as there are a few ladies on there with this cancer and there advice is great.

Peritoneal cancer consists on tiny cancer cells that are on the outer lining of the abdominal cavity. The chemo that they treat this with aims to shrink them or kill them off. Sometimes they can offer sugery - it depends how it is spread and how large the cells are. Mine were quite small so I didn't have surgery. I had 6 rounds of chemo Carbopatin / Taxol infusion. I finished March 26th and my CT scans shows a great success. I have a blood test next week and then an appointment with my oncologist to find out my prognosis and long term treatment options.

I am 50 years old and this cancer is rare. I have a friend who also had this cancer and she is still cancer free after 3 years. The longer you go without having to have a second round of chemo the better your long term chances of being cancer free are.

Love Tina xxx

Michele Schwarz · June 2010

Tina Brown said:
Dear Tes55
I have Peritoneal cancer and it is classed as a chronic cancer. They can't offer a cure but they can manage it with treatment. I have read that ladies can be in remission years before a recurrance. You need to check out the Ovarian Cancer board as there are a few ladies on there with this cancer and there advice is great.

Peritoneal cancer consists on tiny cancer cells that are on the outer lining of the abdominal cavity. The chemo that they treat this with aims to shrink them or kill them off. Sometimes they can offer sugery - it depends how it is spread and how large the cells are. Mine were quite small so I didn't have surgery. I had 6 rounds of chemo Carbopatin / Taxol infusion. I finished March 26th and my CT scans shows a great success. I have a blood test next week and then an appointment with my oncologist to find out my prognosis and long term treatment options.

I am 50 years old and this cancer is rare. I have a friend who also had this cancer and she is still cancer free after 3 years. The longer you go without having to have a second round of chemo the better your long term chances of being cancer free are.

Love Tina xxx

Tina -
Your post was
Tina -
Your post was inspiring!

After a couple years of not being able to get pregnant and problem menstrual periods, a July 2009 laproscopy removed lots of scar tissue that encased my entire reproductive system. I felt better for little while. The last week of October 2009 I gained 18 pounds and was bigger than I was when I was pregnant! I went to Genesys Hospital in Michigan for a hysterectomy in Nov 2009. They recognized cancer fluid in my peritoneum, a tumor attached to my colon, several spots on my omentum/paritoneum and debulked/removed them all for biopsy. I left the hospital without any chance of more biological children, a colostomy and a diagnosis of PPC just after my 40th birthday. I had 6 rounds of Carboplatin/Taxol and my CA-125 was at 12.8. I had my colostomy reversed on June 3, 2010 and during surgery 6 "suspicious spots" were removed and sent for biopsy, 3 of them being PPC - however my CA-125 was only at 20. I see my oncologist this Tuesday, June 29, 2010 and think he will suggest more chemo. I am very nervous about the thought of more chemo and losing the eyelashes, eyebrows and tiny bit of hair that has returned. I am also worried about the affects on my family, especially my 9 year old son, Tyler who had a hard time while I was sick thru the first chemo treatments as well as struggling with his 3rd grade multiplication.

I know I can handle more treatment if that's what is suggested, I'm scared of the survival rate of this disease and wonder if I'm making the best choice her in mid-Michigan or if I should travel to a Cancer Treatment Center of America, leaving my husband and son at a delicate time.

Thanks for listening!

Tina Brown · June 2010

Michele Schwarz said:
Tina -
Your post was
Tina -
Your post was inspiring!

After a couple years of not being able to get pregnant and problem menstrual periods, a July 2009 laproscopy removed lots of scar tissue that encased my entire reproductive system. I felt better for little while. The last week of October 2009 I gained 18 pounds and was bigger than I was when I was pregnant! I went to Genesys Hospital in Michigan for a hysterectomy in Nov 2009. They recognized cancer fluid in my peritoneum, a tumor attached to my colon, several spots on my omentum/paritoneum and debulked/removed them all for biopsy. I left the hospital without any chance of more biological children, a colostomy and a diagnosis of PPC just after my 40th birthday. I had 6 rounds of Carboplatin/Taxol and my CA-125 was at 12.8. I had my colostomy reversed on June 3, 2010 and during surgery 6 "suspicious spots" were removed and sent for biopsy, 3 of them being PPC - however my CA-125 was only at 20. I see my oncologist this Tuesday, June 29, 2010 and think he will suggest more chemo. I am very nervous about the thought of more chemo and losing the eyelashes, eyebrows and tiny bit of hair that has returned. I am also worried about the affects on my family, especially my 9 year old son, Tyler who had a hard time while I was sick thru the first chemo treatments as well as struggling with his 3rd grade multiplication.

I know I can handle more treatment if that's what is suggested, I'm scared of the survival rate of this disease and wonder if I'm making the best choice her in mid-Michigan or if I should travel to a Cancer Treatment Center of America, leaving my husband and son at a delicate time.

Thanks for listening!

Hello Michele
I am sorry to hear about your awful cancer experiences. However your CA125 is really low which is fantastic as anything between 0 -35 is consisdered in the normal range. I am sorry that you are unable to have more children but you are blessed with a 9 year old son - how wonderful.

Chemo is tough but bearable. It is horrid to lose your hair but it is also a nice feeling when you finish treatment to know it will grow back - a bit like an extra bonus!!!! The survival rate is questionable - that is how I look at it, but as they are able to offer treatment then I am hopeful I can stick around. You have to do what is necessary to beat this thing. Your husband and son will be alright and they will be so pleased that you are being offered treatment - so don't worry about them. The best thing you can do for them is to take what ever treatment you are offered and be their as a family to support each other. Children are amazing and they can handle a lot more than you realise!!!

My children are all grown up now and live away from home but they have been brilliant with me and have continued as normal - which I am pleased about.

Take care of you and your family will benefit from that

Love Tina xx

CousinErin · July 2010

Michele Schwarz said:
Tina -
Your post was
Tina -
Your post was inspiring!

After a couple years of not being able to get pregnant and problem menstrual periods, a July 2009 laproscopy removed lots of scar tissue that encased my entire reproductive system. I felt better for little while. The last week of October 2009 I gained 18 pounds and was bigger than I was when I was pregnant! I went to Genesys Hospital in Michigan for a hysterectomy in Nov 2009. They recognized cancer fluid in my peritoneum, a tumor attached to my colon, several spots on my omentum/paritoneum and debulked/removed them all for biopsy. I left the hospital without any chance of more biological children, a colostomy and a diagnosis of PPC just after my 40th birthday. I had 6 rounds of Carboplatin/Taxol and my CA-125 was at 12.8. I had my colostomy reversed on June 3, 2010 and during surgery 6 "suspicious spots" were removed and sent for biopsy, 3 of them being PPC - however my CA-125 was only at 20. I see my oncologist this Tuesday, June 29, 2010 and think he will suggest more chemo. I am very nervous about the thought of more chemo and losing the eyelashes, eyebrows and tiny bit of hair that has returned. I am also worried about the affects on my family, especially my 9 year old son, Tyler who had a hard time while I was sick thru the first chemo treatments as well as struggling with his 3rd grade multiplication.

I know I can handle more treatment if that's what is suggested, I'm scared of the survival rate of this disease and wonder if I'm making the best choice her in mid-Michigan or if I should travel to a Cancer Treatment Center of America, leaving my husband and son at a delicate time.

Thanks for listening!

Hi Michele,
I have a cousin
Hi Michele,

I have a cousin named Michelle that was recently diagnosec with PPC. She lives in IN. I would love to speak with you more if you have a chance. Please email me at waycoolbmwfan@yahoo.com if possible. Thank you!

sally budesa · July 2010

Tina Brown said:
Hello Michele
I am sorry to hear about your awful cancer experiences. However your CA125 is really low which is fantastic as anything between 0 -35 is consisdered in the normal range. I am sorry that you are unable to have more children but you are blessed with a 9 year old son - how wonderful.

Chemo is tough but bearable. It is horrid to lose your hair but it is also a nice feeling when you finish treatment to know it will grow back - a bit like an extra bonus!!!! The survival rate is questionable - that is how I look at it, but as they are able to offer treatment then I am hopeful I can stick around. You have to do what is necessary to beat this thing. Your husband and son will be alright and they will be so pleased that you are being offered treatment - so don't worry about them. The best thing you can do for them is to take what ever treatment you are offered and be their as a family to support each other. Children are amazing and they can handle a lot more than you realise!!!

My children are all grown up now and live away from home but they have been brilliant with me and have continued as normal - which I am pleased about.

Take care of you and your family will benefit from that

Love Tina xx

Tina
I too find you very inspiring,my first onc appt is tomorrow so
I don't have alot to tell at this point other than I have been dx with peritoneal cancer, I had a complete hysterectomy in 2003 due to uterine cancer but they said my ovaries were benign but removed them due to they were covered in tumors. I would really like to chat with you.

blue802 · September 2010

32mouthsSurvivor
My name is Mary,I am 53 years old.I was diagnosed in Aug.2007,Also had my surgery that day.On Jan.16th 2011 with the help of God I will have 3 years,I had 5 masses and I was a stage 111C.In 2009 I was diagnose with stage 3 colon cancer unrelated to my PPC.I was also tested and found out I am Lynch positive,Please hang in there please,There is hope,We all have to agree on that,BE four I found this sight all i could do is feel sorry for myself and waiting to die,I don't feel like that now,I feel so great full that I am here,and I now no why,To extend my hand and reach out and help some one like you and to tell you that there is hope no matter how much time we have.We have to give each other support and be our own best friends.My name is Mary and I am a very great full cancer survivor,God Bless You All.

Primary Peritoneal Carcinoma

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