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PRIMARY PERITONEAL CANCER

chicagocx
Posts: 1
Joined: Aug 2009

Hi,

I am 33 years old and was recently diagnosed with stage 4 primary peritoneal cancer. I am looking for others who are in the same boat. I am BRCA1+. I do not mind talking to women who have or had ovarian cancer, however, there is a difference between the 2. It is discouraging to come on this website and not even see a drop down box with Primary Peritoneal on it. It's rare, it's treated like ovarian, but it would still be nice to raise awareness.

I did EVERYTHING right - I get tested with the CA125 blood draw every 6 months along with a transvaginal ultrasound & pelvic ultrasound. The only thing that picked it up was an elevated CA125.

Hope to hear from some of you soon. I am in a study and I'm on cisplatin and taxol.

take care,
chicagocx

Lisa13Q's picture
Lisa13Q
Posts: 683
Joined: Jul 2009

Hello Chicago,

My name is Lisa and I am brand new, so I certainly don't know very much. My mother was diagnosed last week with what they believe is 90% ovarian cancer. If not, she has peritoneal cancer. What I have learned in only the past week is it is very scary, but there are treatments that are promising for getting these horrible diseases to remiss. I also know that there are many many caring women on this site who will be so supportive. I couldn't have gotten through this week without them. For sure, get an oncologist you trust. If you don't have one, the Mayo Clinic in rochester, MN is fabulous. Anyway, I will say prayers for you tonight and I know there will be people who post as well who know so much about this.

As far as doing everything right, so did my mother. Unfortunately these cancers are "silent" and extremely hard to detect early. Often, they are linked genetically, so there isn't much you can do. It is NOT your fault. I am glad you are in a study and getting treatment. I am also sorry about your diagnosis. But there are wonderful women here who will be supportive. I have checked in 3 times a day every day this week and it really helps. I hope it helps for you.

Sincerely, Lisa Newbie

MichaelaMarie
Posts: 163
Joined: Aug 2005

Good to meet you, Chicagocx.

My "ovarian" cancer is actually primary peritoneal cancer also. But, all of my charts, the lab, the doctors and nurses, all refer to it as ovarian. I had five fist-sized tumors, and was staged 111C. That was just over five years ago. I've done many different chemo drugs, and was in a trial a couple of years ago with Doxil. That was probably the most difficult one for me. I am now on Cisplatin and Gemzar. My cancer was found via a pap smear, which I understand rarely shows up my type of cancer (so in that sense, I was very lucky). Apparently my insurance will not cover the BRCA1 test, so I don't know if I have the gene or not, but I would really like to know.

You are very young, and it seems like they are coming through with more and more chemotherapys in the last year, so hopefully that can aid in finding out more about this horrific disease.

There may be more ladies on this site such as myself that have the same cancer as you and me, but refer to it as ovarian, as I always have. So, stay on the site, and hopefully you will meet others.

This is a wonderful forum and I think you will benefit greatly from it. I'm sure I can speak for everyone and tell you that we are all hoping and praying for you! Luv and hugs, MM

mbbaxley
Posts: 1
Joined: Nov 2009

What is 111C? My mom has been battling this cancer since December of 2008. She went through extensive chemo for 6 months and is now taking an experimental drug A6. She receives a shot everyday. She was stage 3 in her initial diagnosis. So I am unfamiliar with 111C. I would love to know if anyone has undergone any radical diet changes. My mom is currently researching a macrobiotic cancer diet. Has anyone out there tried that and what were the results.

Thanks so much,

MB

Kellys569
Posts: 1
Joined: Feb 2013

The best way for its treatment to take the supporting for rays which are speical to eradicate this disease but it takes a lot time to cure this,medcien not ensure this one,

physical therapy practice

Christina_31
Posts: 2
Joined: Aug 2009

Hi Chicagocx, I can identify with you. I was diagnosed this past April with Serous Papillary Primary Peritoneal Carcinoma, Stage 3C @ age 31. It find it extremely fusterating when trying to information about this diease. As you said and many of us with ppc find out, yes it behaves as ovarian ca, but it is different. Currently I am on the GOG-0218 phase III trial with Carboplatin & Taxol -/+ bevacizimab (avastin). It is a blind study.

After my third treatment, my CT scan of the abdomen and pelvis did show some improvement. I would also like to mention that I was only have to have one fallopian tube and ovary removed during my surgery, not that total abdominal hysterectomy and omentectomy that was planned.

I have just completed cycle #6 and my CA-125 is going up. It is the scariest thing in the world. I feel that I am at a cross roads....and considering a second opinion. Currently I am being treated in the Chicago. So I guess my question would be to anyone reading this. Does anyone have any recommendations, as to who to seek out for a second opinion on this type of cancer? I did see that someone mentioned Mayo Clinic, Rochester, MN....and that is definately a medical center that I am considering.

Take Care,

Christina

MissBee's picture
MissBee
Posts: 8
Joined: May 2009

Hi Chicagocx

I also have PPC an i am participating in the same trial. I was dx in Dec 2008 and had optimal debulking surgery.I recieved Taxol and Carboplatin + avastin/placebo for 6 cycles. I an currently on avastin/placebo until next year. I hope you want become discourgaged. Ca-125 can rise for lots of reasons. This combo has worked well for me so far. My last CA-125 was 3. We just have to keep the Faith and hope for new drugs and treatments. Avastin has gotten good results so far. You are very young to go thru this. I will keep you in my prayers.

May God Bless You,

Bettye

rhondanna
Posts: 8
Joined: Oct 2010

I had a good experience getting a second opinion at Mayo Clinic a few years ago, but recommend M.D. Anderson in Houston - they confirmed my doctor's treatment of me with Tamoxifen and said that 10% of women are "low-grade" meaning the tumors are slower growing, that traditional chemo does not work, that if you have estrogen receptors in your tissues hormonal agents seem to be working. I have been stable on Tamoxifen for a year. If that stops working there are other hormonal agents. I was diagnosed Stage 4 in January 2006.

amco35
Posts: 1
Joined: Dec 2010

rhondanna - I'm a little confused that you said you've been on Tamoxifen for a year. I understand this drug (if it's the same one) is dangerous and can actually cause some cancers! http://www.all-natural.com/tamox.html Plus it was mainly used to treat breast cancer! My aunt has stage 3 primary peritoneal cancer and has had chemo and was in remission for about 6 months. She's recently been told that it's back and she has low level disease. She was intitially treated with Carboplatin and Taxol. I don't know what they'll be treating her with next. She's very depressed as she was told she the survival rates are about two years as this cancer will probably just keep coming back. She is 61 years old and lives in Wales, UK. Does anyone think she should travel to the Mayo Clinic?

Amco35

SylviaWin
Posts: 1
Joined: Apr 2011

Hi Rhondanna!
Thanks for the info. I've been recently diagnosed with PPC at Cedars Sinai in LA. I'm moving to Dallas in July and will look up MD Anderson. Is there a Dr. you're working with at Anderson that you would recommend?

Missy56
Posts: 1
Joined: Feb 2013

Christina,

I live in georgia but went to MD Anderson in Houston, Texas for my surgery. Great dr. I would recommend.

ChicagoRia
Posts: 2
Joined: Aug 2009

Hi Chicagocx,

My name is Maria, I'm 42 yrs old and just got diagnosed a few weeks ago with stage 3 peritoneal carcinoma (my doc didn't mention if I'm b or c so we'll have to check the pathology reports for that). I'm home recovering from the debulking surgery where they removed 80% of the cancer along with a lot of my large and small intestines and am scheduled for chemotherapy (Taxol + Carboplatin) this Thursday. I feel just as frustrated as you that everyone just lumps us in with ovarian cancer. That doesn't help when your looking for info, resources, support groups, etc.

Unfortunately, this is my second cancer. I had Hodgkins stage 4 when I was 23 yrs old and remember how awful that chemo treatment was. I'm still in remission and celebrated my 18th anniversary this year!

If you don't mind me asking, how is your recovery from chemo treatments? My oncologist tells me I should only be sick for about a day and I find that so hard to believe with my past experience. I would love to think that this time around I can still go to work and have some kind of quality of life.

Anything that you would like to share would be greatly appreciated.

Sending my good thoughts to you,
Maria

Karen1418
Posts: 48
Joined: Feb 2008

Hi Chicagocx,

Just wanted you to know I also have ppc, not ovarian. I refer to it as ovarian also, as no one knows what ppc is.

Karen

bigragu714
Posts: 4
Joined: Aug 2009

Hello everyone, my mom who is 59 yrs young was diagnoised with PPC in late april, had the surgury to remove everything in early may. They put a port in her body and gave her an aggressive type of chemo which seemed to be working really good. her ca 125 number went from a high of 125 (after surgery number) to 37. or something like that. unfortunately her body rejected the port. she had a total hysteretimy and the cancer that lined her peritoneum didnt get into any organs and all her lymph nodes were 100 percent clean.

I have tried looking for infomation on this horrific disease but i cant seem to find anything of substance. i find the same old same old "goes into remission and comes back within 5yrs or so....when i found this site and read some of your messages, it actually gave me some hope.

what i have learned over the past couple of months is that there is hope. more than i thought. after the chemo is over (hopefully sometime soon) she may go to another type of chemo or possibly a matience plan which would be a lower dose of some chemo once a month to keep it at bay. For those of you seeking a second opinion my mom raves about her doctor from winthrop hospital in Long island ny. i was against her going there but ultimately it was her descision and i am sure glad she went there as well. from what i understand she has one of the best doctors for this type of cancer.

my question for you is this. my mom was always over weight. with the chemo she is now getting, the side effects are minimal compared to the "port" chemo. the doctors told us she needed to have a special diet where she could not eat any left overs or eat anything like mustard or mayo ketchup unless it was from an individual packet. something about bacteria forming. things like OJ. she cant have that unless she has an individual one. foods high in protien....no anti oxidents....what kind of foods do you guys eat? what do u stay away from? i keep catching my mom eating stuff she isnt supposed to and i feel bad when i give her the 3rd degree. she got a list of food from the doctor but nothing too exact. any help on this would be appreciated.

Im just trying to do the right thing and we are all keeping her positive and even making her happy. My family has always been a sorta disfunctional family because of the relationship between myself my brother and father, but we have all done our best to put that all behind us and my mother hasnt been this happy in a long time, if that makes any sense. so with that we keep doing what we are doing and the faily has sorta mended....that i hope in itself will aid her in beating this disease. sorry for going on so long, there is so much i want to say but dont know how to get out.

thanks for any help anyone can give me such as websites or links.

Bambibino's picture
Bambibino
Posts: 3
Joined: Nov 2009

Hi everyone! I am also new here. My cancer was discovered during gall bladder surgery. They call it ovarian cancer, but all my "stuff" was removed over 25 years ago. It was explained to me like this: When you are forming in the womb, the peritoneal and ovarian tissues are the same. So the cancers are treated the same and regularly referred to as ovarian cancer. Seems insurance companies will more readily accept ovarian cancer over peritoneal cancer. Just terms, same cancer. I am stage 3C and currently have a small, slow growing tumor in the peritoneal area. I have been through debulking surgery and have been fighting this for 4 years (I am 58 now). I am also Type 1 diabetic. So the chemo's and steroids usually will push my sugar numbers into the upper 500's. But they get back to normalish within a couple of days. I am not on any special diet except for the diabetes.
You are doing the right thing in keeping your mom's attitude positive and happy. That, I know is a big job, but you are doing it! Hurrah! I have learned to wean all of the negative people out of my life and just surround myself with positive and caring people. It's my life and I choose to do this, for my own mental and physical health. Keep on helping your mom to be happy and positive. This will extend her life more than you know!

Part of HIS plan,
Terri

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I've just been reading everyone's blog and it is reassuring to hear of other ladies who have been diagnosed with this "beast" I call it that as it feels like my body has been taken over by something.

I was first diagnosed with fluid on my lungs. I thought I had a chest infection so when the doctors told me they had found "abnormal" cells in the fluid they had removed I was completely devastated as it was not something I was expecting. After loads of blood tests and a CT scan I was diagnosed with PPC where they say the fluid on my lungs are kinda classed as secondaries. On reading everyone's blogs, I do have some fluid on my stomach but it was the fluid on my lungs that was the most distressing as I was struggling to breathe.

I have just undergone 2 chest drains (not at the same time I hasten to add!!) and can now breath much more easily. I am meeting with an oncologist in a few days to discuss my treatment which I assume will be chemotherapy as surgery is not necessary as no tumours have been found.

I am 49 years old and consider myself to be fit and healthy as my hobby is running. I would like to keep in touch with people who are under going the same illness as me so we can keep each other going and share treatment stories.

Tina

saundra's picture
saundra
Posts: 1390
Joined: Mar 2007

The orgin of this is kind of old.l I suggest you start a new topic so we can respond just to you. From the Ovarian Discussion page you will find "Start a new topic" on the left hand side just before the list of topics.
You will get more response. I have never had a fluid problem but there are lots of ladies on this site that have. Mine is ovarian, but there are several "PPC's". And, YES, we all have experienced the feeling that something has taken over our lives and bodies. Schedules change, outlooks change, bodies change. You feel betrayed because you did everything right by regular check-ups, exercise, diet and WHAMMO this hits you between the eyes. Tina, two things got me through the first two months: a deep believe in God and I started a journal. The journal will help later when you are having trouble remembering these early test and what was said. You should also get copies of all the test that are done to refer back to. Take it one day at a time and know we are here for support whenever you want to post a worry or question. (((HUGS)))
Saundra

CH1836
Posts: 2
Joined: Jan 2010

I've been reading this blog for months, and I finally have the courage to join.
I was diagnosed in April 2009 with PPC. I had a hysterectomy 8 years ago at the age of 43 due to chronic pain during menstruation and enlarged fibroids.

I woke up one morning with a slight stain and made a gyn appt for the next day. The Dr said everything looked good, she couldn't find a source of staining and did a pap smear. The pap came back questionable, and the DR performed a colposcopic biopsy. She found a tiny pea size cauliflower lesion in the folds of my cervix, sent it off for evaluation, and the news came back 10 days later. The "C" had spread. I was diagnosed with Stage 3 PPC. I had a complicated debulking surgery a week later. I spent 2 weeks in the hospital and began chemo 2 weeks later. My last treatment was September 16th, my daughter's birthday. I'm not complaining about the surgery, or the chemo, or any of it. I still cannot bring myself to admit I have this. I felt fine before this and I feel physically fine now. I have a 3 month check up Feb 9, I'm praying everything will be ok. I've been in the ER twice with panic attacks, once for an asthma attack and the other for stomach pain, they did cat scans and everything was negative.

I find it hard not to think about the what ifs, but going to work and being busy helps

I find the most peace in being with family and doing the things I love, I hope that you all can do the same.

Blessings to all, Caryn

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

You have done so well and have come through so much you are a very brave lady. I am just about to have my third round of chemo this Friday and it still doesn't seem real to me that I have this life threatening illness because I actually feel so well. I don't have any pain or discomfort since I have had the chest drains. I think that I may be in denial, but maybe my brain is protecting me by not allowing me to think about the future.

Its true what everyone says about PPC being classed as Ovarian. When I was having my first chemo the chemo nurse asked me how long had I known I'd had ovarian cancer. I soon put her straight!!!

It is hard to get your head around the fact that this cancer is not curable. Why isn't it? Surely if they removed all of the cells as in other cancers, why do they grow back? However another part of me thinks the technology and advances with medicine today and people can live for years and years with cancer so long as they can tolerate the treatment.

Lets just "keep on going" and never give up - you never know whats round the corner.

Good luck Tina xxxxx

eward
Posts: 210
Joined: Feb 2010

Tina,
I am also curious to know what chemo and any other cancer meds they are using.
Eileen

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

Caryn,

Sorry to hear of your diagnosis. Once I started feeling better I too thought this all must be a big mistake. I don't think I joined until I completed my treatment too. I found this board way to scary....I still do. But I also find hope, understanding, support and stories of survival. I think most of us on here have issues with anxiety and fear of reoccurence. I too suffer from ongoing bowel issues and have been to the ER myself so I do understand!!

I have two young kids so I don't have time to sit around feeling sorry for myself. I too find so much to do all day I don't know how I worked full time before. It was absolute HEAVEN to be home with my kids all summer. I stopped working when I was diagnosed.

I wish you a lengthy remission!!!

Buffalo123
Posts: 4
Joined: May 2010

I am 38 and BRCA positive. MY PPC was found during gallbladder surgery in August of 2009. I went through 6 rounds of taxol and carboplatin. My CA125 went from 1800 prior to debulking to 6 rigth now. I am in a 12 month study recieving a low dose of Xyotol. So far so good. But I am scared and wasting valuable time crying. I have two little boys that are the light of my life. Relieved to find people that can relate to me.

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

I can relate but you have an advantage. I am 43 with 3 kids, my youngest two are 6 and 4. My kids are my life and my main concern since being diagnosed in Sept of 2008. Unfortunately I had a recurrence after 8months of being off chemo. I had 5 doses of a second chemo that didn't work. I am scheduled to have a PET/CT on Friday. I am desperate to find something to slow this growing cancer down. Enjoy the freedom you have. You truly never know if/when it will come back. I would love to be in your position.

BTW, how is xyotol? Also know tht BRCA positive have better outcomes then those of us who are not BRCA positive.

Buffalo123
Posts: 4
Joined: May 2010

Nancy,
I responded to you but it did not post, so I am not sure you got it. I want you to know you are in my prayers and remind you to always believe you will make it through the next obstacle. My doctor has assured me he has survivors from the 1970's with PPC. And your next remission can last decades. If Xyotol works, it is great! Almost no side effects. I have only had 2 rounds so far. I love my Doctor in Buffalo, he is world renound if you ever want a second opinion. Prayers for you and all of our sisters...
Colette

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

I am being treated at Memorial Sloan Kettering in NYC. Buffalo is very far from me. I wonder if Sloan is doing that clinical trial. Collette, did you join our facebook page? It was started by Nancy707. here is the link:
http://www.facebook.com/?ref=logo#!/group.php?gid=114755145226264&v=wall

KAlford
Posts: 2
Joined: Mar 2011

My mother was diagnosed with PPC and the treatment was so hard on her. Now she is having a very rough time with her bowels as well. We have had to take her to the emergency room on numerous occasions. We have gotten to the point where we have had to start researching life alert systems for seniors . She is so stubborn about this, but it is either something like this or putting her in a care facility. It is just so hard for everyone involved and its just relieving to read some of the other posts on here. It is scary! But, also nice to know others are going through what my mother and family are. You all are in my prayers and thoughts!

eward
Posts: 210
Joined: Feb 2010

Caryn,
My mom is 63 and was diagnosed with stage 4 PPC last April 2009, as you were. She had successful debulking surgery and 8 rounds of chemo. She just went for her 3 month follow up after chemo. Cat Scan is today. Her CA125 has climbed to 73 from 30 at the end of chemo. She also feels good. The emotional aspect and anxiety are the most difficult at this time, I think. She will find out what treatment they will proceed with in a week and a half - either some sort of pills or a different chemo, depending on the results of the cat scan.

The best of luck to you at your appointment next week.

Have you had replies from anyone else? We are in the Chicago area. Do you mind saying where you are from?

Eileen

lyla
Posts: 1
Joined: Feb 2010

I have recently been diagnosed with Stage IV Primary Serous Papillary Peritoneal Cancer and am scared out of my mind.

I felt fine until late December, 2009 when I went to the doctor for treatment for a urinary tract infection. I told him at the time that my stomach really hurt also and he informed me that something else was probably going on there. I got rid of the urinary tract infection but not the pain. My doctor ordered a CT scan of my stomach in mid-January, 2010 and I could have dropped dead in his office when he gave me the results. The report showed that I had cancer in my peritoneum, there were tiny spots on my liver, lungs, and heart, and some spots on my lymph nodes.

Since then, I have been to a medical oncologist, have had a colonoscopy done (all was well there), an endoscopy done (all was well there), and last Friday, February 12th, 2010, I had an MRI of my chest and liver area and an ultravaginal ultrasound. I don't have the results of either of those tests yet but fear for the worst.

I also presented with ascites (fluid in my abdomen that made me look 8 months pregnant). This was determined by the medical oncologist on my initial visit with him. Thereafter, a procedure was performed where they drew off 6 litres of fluid. I lost 12 pounds. They sent samples in for staining in order to see where the cancer originated. They say it's the ovaries but it actually began in the peritoneum. I now am filling up with fluid again.

I was encouraged by my medical oncologist to get a second opinion and am doing so this coming Tuesday. I will be consulting with a gynocologist/oncologist who is reputed to be excellent in this field.

The fear of the unknown has me in its grip! One minute I think I'm going to fight this awful disease with all my might and the next minute I think I'll just have them keep me comfortable with pain meds and save everyone around me a lot of grief.

I spent 8 years taking care of my husband who had colon cancer that eventually metasticized to his liver and then to his bile ducts. We buried him in August, 2008. At the same time, I have been running our business and helping take care of our 93 year old father. I will be 65 years old in April of this year. I do want to live and see my wonderful son graduate from college this May but I am soooo scared!

I will continue to update here as I receive the medical information.

Lyla

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I am so sorry to read about your diagnosis. I too have PPC and was diagnosed last Nov. I had a CT scan that confirmed the diagnosis and thankfully had no tumours anywhere else. I did have some ascites but my biggest problem was fluid around my lungs as the cancer cells had gone into the pleura.

I have had 4 chest drains so far which has been such a relief to be able to breathe again.

I haven't been offered surgery but I know alot of ladies with PPC have surgery. This seems to be very successful from what I read. My treatment is chemo - carboplatin & taxol and so far i have had 4 rounds with 2 more to go. The treatment is not so bad - I have 4-5 days after treatment where I am tired but it is bearable. The good news is that it is working. My CA125 began at 1119 and is now 156. A recent CT scan showed that the lining in my peritoneum has shrunk which my oncologist is really pleased about. Once the chemo kicks in the fluid should drain away naturally as the cancer cells are "zapped"

I am 49 and too want to live to see my children married and maybe enjoy grandchildren. I am sure that the chemo will manage this disease and help extend lifexxxxxxxxxxx Take care Tina x

eward
Posts: 210
Joined: Feb 2010

I am searching for information because my mom was diagnosed with Stage 4 PPC last April. She is 63 and this was such a shock for our family, too. I am wondering where you live. It seems that getting a doctor/team of doctors who are the best in their field is important. My mom had ascites and plural effusion at the time of diagnosis. Since then she has had debulking surgery and 8 rounds of chemo. At her recent 3 month check up her CA125 was going up again, so she will begin treatment again soon. There is a trial with a non-chemo drug they might attempt or she will start a new chemo. They say they treat this as a chronic condition, which is somewhat reassuring.

I wish you the best. My mom has seen a gyno/oncologist who is said to be best in his field, too. Her new oncologist seems great too. We are in the Chicago area.

I have such hope for you and everyone on this board.

Eileen

musicgang
Posts: 2
Joined: Apr 2010

Hi Eileen and everyone else on this discussion board. I am 60 years old, and I have been having symptoms for several days, and when I entered them in the Mayo Clinic's Symptom Checker, Primary Peritoneal Cancer came up as a possibility. I had never heard of it so I started researching it and found your website. That being said, I know this might all be premature, but I figured there are no better people to ask some questions of than people who have it, or have a relative who has it. It is scary to think about. I am a firm believer though, that you have to educate yourself and be your own advocate or you might get blown off for precious months before someone finally listens to you. I am plagued with; abdominal pain; pelvic pain and pressure; unexplained weight gain; huge belly (look like I'm pregnant); I have hardly any appetite but make myself eat and feel full after eating very little; I urinate a lot; feel a bit nauseous; feel almost constipated but when I do go it's loose; I already have a diagnosis of COPD and have dealt with it well for years, but suddenly I am extremely short of breath.

Those are my symptoms. I called my pulmonologist in March when it was just the new shortness of breath. I can't get in to see him until June. I had a hysterectomy when I was 26 because of early stage uterine cancer (didn't take ovaries out). I never had to have chemo or radiation. I also have had 2 malignant melanomas removed. I live in Lafayette, Indiana and I will talk to my primary care physician tomorrow. But, if I need to see a gyno/oncologist there is no one here in Lafayette. I see you are in the Chicago area Eileen, and I am wondering if you have any recommendations? I know I may be putting the cart before the horse, but I want to be prepared. I also want to be able to react quickly if I'm told, "Oh you just have a little gas." or some other dismissive comment. Everything I have read says THE most important thing you can do right from the start is have a great gyno/oncologist.

Anything any of you can offer by in the way of advice or recommendations would be appreciated! How do my symptoms compare to what some of you have experienced? God bless all of you and thanks for your time.

Donna

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I have just been reading your post titled "Afraid I have this" and I am sorry to say that you have exactly the same symptoms I had. I was diagnosed with PPC last November. My stomach was bloated and I thought I had constant "gas" as it was very hard and I couldn't suck it in. I thought I had just put on weight. I got full very quickly and needed to open my bowels after each meal but only did a small amount. I did urinate frequently also. This was a symptom of fluid in the abdominal area. However (I didn't realise this at the time) but I also had fluid around my lungs which made breathing extremely difficult.

I went to my GP (primary care doctor) who sent me for an x-ray. The x-ray showed up fluid around both lungs. I was referred to the hospital where they did a chest drain (plueral effusion) and drained off 3 litres of fluid from my right lung. They didn't know where it had come from or why the fluid was there. When they tested it they found cancer cells in it. I had a CT scan and that showed up tiny cancer cells in the lining of my peritoneuum (stomach!!!)

I was referred to a great gynae ocologist and have just finished a course of chemo.

I really hope you can get to the bottom of this and wish you all the luck in the world. Please post again soon and let us know how you are.

Take Care Tina xxxxxxxxxxxxxxxx

Ann-PPC
Posts: 3
Joined: Feb 2010

My mother was diagnosed with PPC back in 2000 when she was 62 years old. Reading your post took me back to those initial days of trying to process the information and being so afraid. I just wanted to say how sorry I am that you are having to deal with this.

I hope that your treatment is as successful as my mothers. She went through surgery to remove the cancer, it wasn't a tumor but more like a web of tissue in her peritoneal cavity. I remember when they first told my mother that she had ovarian cancer. She asked how it was possible when she didn't have any ovaries. They had been removed years earlier.

After surgery she went through a tough regimen of chemo and was cancer free for over 5 years. Unfortunately, they did find a small tumor about 6 years after her initial diagnosis. They couldn't remove the tumor because of its location but were able to eliminate it with more chemo. She still gets nervous every time she has to go in for testing to make sure the cancer hasn't returned. However, she is living her life to the fullest.

Best wishes.

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Your story about your mum really inspired me. Your mum has been in remission for 5 years - wow. I was told by my oncologist that PPC is not curable. This conjured horrible "doom" filled images for me. i felt like "that was it" However your mum's story gives me hope. It is true PPC is a collection of cancer cells and not a tumour. I don't think many people really understand that there isn't a "tumour" to be surgically removed.

Good wishes to your mum xxxxx

dooder0420
Posts: 3
Joined: Mar 2010

Hi Lyla,
I just found this page when I was searching for recurrent primary peritoneal on google. I hope you have seen the GYN/ONC by this time. I am a 3+year survivor, dx with stage 3C PPC when I was 46. I was optimally debulked and then completed 2 rounds of carbo/taxol IV then 8 rounds of taxol/cisplatin IP(intra peritoneal)chemo. I have the best GYN/ONC down here in San Antonio that use the IP treatment on me when other docs were pooh poohing it. There are several of my other chemo buddies that were also treated with the same protocal and they are still in remission also. There is certain criteria for getting IP treatment and several things have changed with treatments since I was diagnosed. Please make sure that you are proactive in your search for information about this disease, not just from the doctor but get second opinions and a third if needed. I did so just to make sure I was receiving the best treatment. Please let us know how you are doing. Take care, Dee

dolive
Posts: 1
Joined: Nov 2011

Hi Dee,

I, too, am in San Antonio and was interested in the name of the GYN/ONC you speak so highly of here in town. My Mom had peritoneal cancer and I am currently "exploring" a breast mass that I found with my current GYN. I am hoping I do not need the reference but good to have just the same....Thanks!

eward
Posts: 210
Joined: Feb 2010

Dear Tina,
My mom was first diagnosed with fluid around her lungs, too. If you see the post below to Caryn, you can see where she is at. How are you doing? Have you changed your diet at all? Are you able to exercise since you said your hobby is running? My mom has really researched an anti cancer diet and walks daily on her treadmill. She started learning about meditation at a local cancer support center.

I hope today finds you and all on this board well.

Eileen

family123
Posts: 1
Joined: Apr 2013

Hi Bigragu714,

I hope things are ok for you and your family.  I'm referring to a post you made in Aug 2009, and i hope the years since then have been kind to you.  I was wondering if you can tell me the name of the doctor you referenced from Winthrop hospital on Long Island.  My mom was diagnosed with PPC just about a year ago and has been undergoing chemo which was working up until recently.  Her tumors are now growing again, and i think we need a second opinion now.  Her doctor suggested debulking surgery, but my mom is scared to undergoe that surgery and is resistent to it.  Trying to figure out all our options - quickly.

Thanks for any guidance you, or anyone else, can provide. 

Alexandra's picture
Alexandra
Posts: 1198
Joined: Jul 2012

It's a very old thread. Bigragu714 last logged on to this site in 2011. You are more likely to receive replies if you start a new topic on Ovarian Cancer or Peritoneal Cancer boards.

Best wishes to your mom.

cdwright
Posts: 2
Joined: Jan 2010

First, I wanted to thank you all for sharing your stories. I don't understand how this type of cancer is so unknown...there's not even a topic for it on these boards.

http://www.caringbridge.org/visit/sinnes

My mother was diagnosed in October of 2007. I've included a link to her caring bridge site above, in which she's journaled about her treatments.
I live a few hours away, have a full time job and two children so I can't be there as often as I'd like but I did go up last week after she was admitted into the ICU. She's been having fluid accumuliation around the lungs for a few months and had undergone a few thoracentisis (thoracentisi?) procedures. She finally was so frusterated by the breathing issues that she elected to have pluradisis done...All I have to say is that when I arrived last Tuesday, I didn't expect she would live until Wednesday. It was terrifying to be quite honest. She pulled through and will (hopefully) be released from the hospital soon thank goodness.

Anyway, I just wanted to share her story and I hope to be able to report on a full recovery and at least a few more pain free months with my mom. -Cary

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Hi Cary
Just been reading your message about your mum. I too have had this procedure done as well as 3 previous chest drains. It is quite un common so it is nice to find someone else who had fluid around the lungs. I am on chemo and have been told that the chemo will prevent the cancer cells accumulating in the pluera so will stop the fluid build up. The first time it happened to me I was really scared because I could not breath unless I was sitting still and up right. It is amazing how much better you feel once the fluid has been drained off.
I will look at your mom's story via the web site you have posted. Take care Tina xx

HD1947
Posts: 1
Joined: Feb 2010

My sister-in-law has just been diagnosed. We live on long Island and are very interested in
doctors that have had good results in treating this terrible disease.
She means the world to our family, and we want to get her the best help available.
If you could just give me the name of the doctor, that your mom has seen, I would be very
grateful.

lillin20
Posts: 8
Joined: Mar 2010

Hi everyone. I know I am not the "personal" cancer patient here...but my grandma is and she is like a mother to me. She is not computer savvy so I promised her I would come here for her.
Her story
She was diagnosed with Primary Peritoneal Cancer stage IIIc in November 2005. From the beginning we were feeling hopeless because the first doctor we saw told us that she had a less than 20% chance at survival past 5 years. I immediately jumped online and started researching. I found that this information wasnt correct nor was it accurate, and the info was from the 70s!!! Needless to say we found a new and better doctor! My grandma completed Taxol and Carboplatin- but it was VERY tough on her...she lost her hair (not a big deal to her), but immune system was horrible. Her blood counts continued to stay and remain awful for quite some time AFTER the chemo too. About 2 years later in 2008 she was told she relapsed and needed to begin Carboplatin again. They didn't want to do the Taxol for her the second time because it gave her such horrible neuropathy and that was miserable for her. She seemed to tolerate the Carbo MUCH better the second time around.
Now
Here we are again...it's only 10 months since her second round of chemo was done she has relapsed yet again. This time they told her she cannot have taxol or carbo b/c it is a 2 time max. I dunno. Anyways she had a MUGA procedure to check the status of her heart and today they started her first of 4 rounds of Doxil. They have told her that Doxil is EASY to tolerate and she won't have any issues with it except for the hand and foot syndrome. But from what I am reading this isn't necessarily accurate.

So....I am wondering if you ladies have any advice or suggestions for us. I know that my grandma wants to keep fighting and we do too. Could any of you provide some good resources for us...or just your thoughts and words of wisdom??
Thanks!
LILLIN20
*also- my grandma's mom had stage 4 ovarian cancer and lived 25 years after that diagnosis.....my concern is...is this hereditary???

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Your grandmother should be tested for the BRAC gene mutation. If she is on Medicare, they will pay 100% of the cost, because she has such a strong family history of ovarian cancer. Then you can be tested, using her data, and it will be much less expensive.

Also, women who test positive for BRAC 1 and/or 2 have an 87% chance of developing Breast Cancer.

I have not had Doxil but I understand it works well for many people and is indeed easier to tolerate than Carbo or Taxol.

Carlene

lillin20
Posts: 8
Joined: Mar 2010

Thanks for the info. My grandma was tested and she doesn't have the gene...but they told us that just because she doesn't have the gene doesn't mean my mother or myself do not have it...because my great grandmother had ovarian cancer and wasn't tested for the gene so we dont know about that. *sigh*

My grandma completed her 1st round of Doxil. She said her side effects (thus far) have been extreme fatigue and nausea. She said it's way easier to tolerate then the carbo/taxol mixture. She refused to do Taxol the second time around because she suffered SEVERE neuropathy with it...and it was miserable.

Here is what she has done

1st time- Carbo/Taxol combo- horrible immune system issues, low blood counts, nausea/vomiting, neuropaty

2nd time- Carbo- low blood counts and immune system issue

3rd time- Doxil- so far nausea and fatigue.

Im interested in hearing more about this interperitoneal chemo...I might do some research on that.

Im frustrated right now w/ the doctor because I feel like she crushed my grandma's spirit. My grandma asked her this last time if this was going to keep happening (relapsing)....the doctor said "yes as long as you choose to deal with it"

I understand that the facts are that most likely she will continue to relapse...but the doctor could have worded it in a better way. It was like she was condescending and told her to "give up" in not so many words.

eward
Posts: 210
Joined: Feb 2010

I am in a similar boat as you are. I am not the PPC patient, my mom is. Maybe we can communicate and share information.

bigragu714
Posts: 4
Joined: Aug 2009

So sorry i havent been on this site in almost a year. I saw your post regarding winthrop hospital. the Dr my mom is in love with is dr Venenella (spelling is off but sound it out) this doctor has taken such good care of my mom along with the doctors that do the chemo which are in stony brook hospital. The doctor that works with my mom for chemo is Dr Kedelka another very nice man. I know that you probably have doctors now being that your post was in Feb. but if you are not happy with your current doc and want another avenue to explore those are the 2 docs i HIGHLY rec.

My mom was diagonosed in May 2009. she went through the debunking and 6 months of chemo. CA125 levels have been between 3 and 7 as she gets a test every month. for the last 7 months she has been on a maintence chemo (low dose 1 time every 4-5 weeks) because there was a "hot" spot still on the PET scan she got after the first 6 chemos were done. All in all right now she is doing okay. she is living her life, we have gone away on a couple of family vacations, lots of quality time and going to resturants for lunch or dinner, just enjoying all the time we can possibly enjoy. She is nervous as all hell about Nov which is her last chemo on the maintence and wonders what will be after that as we all are but none of us say it.....hope some of this info helps. and best of luck with your situation, keep the prayers and outlook growing. and most important keep her spirits up

bigragu714@aol.com

spa
Posts: 1
Joined: Apr 2010

HI,
I was diagnosed in December, 2009 with metastatic ovarian cancer. I had a right pleural effusion that got me to the hospital. Until then, I had vague symptoms but suspected my upper abdomen looked fatter and different. This has been a fear for quite some time in all honesty. I am 55 and a nurse, so I've passed the vague symptoms off as being due to post menopause and aging.
I received my first round of chemo while in the hospital in December to prevent the fluid from coming back around my lung. The CT scans showed caking in the omentum, but minimal disease if any in the pelvis. That's when PPC was mentioned. In January I saw a surgical oncologist who agreed with local physicians about waiting to do surgery until I had 3-4 rounds of taxol and carbonplatin. This did not bring peace to my mind, so I traveled out of state to see a surgical gyn oncologist recommended to me by a dear friend. He concurred with the care that I had received, ordered another CT scan and advised immediate expoloratory laporotomy to remove all that he could of the cancer.
I had surgery 2/2/10 and praise the lord it did go better than expected with the majority of the cancer being in the omentum, which was removed, along with my spleen, ovaries, tubes and uterus. Two lymph nodes were removed as well. All were positive for low grade serous cells on the surface. I have just completed my 5th round of taxol/carboplatin and am contemplating Intraperitoneal chemotherapy.
Unfortunately, there is a difference in opinions between the surgical oncologist and the medical oncologist and I am in the middle wanting desparately to do everything possible to live a long life. I believe that God has been with me through this all and will continue to guide me in seeking the best options. Most of the time I am happy and optomistic regardless of what the internet and research shows statistically. I feel great and find it so hard to believe that this disease is in my body. I hope that you all will continue to research and share what you find on this network. There is hope. New research is coming out everyday and we know that good nutrition, exercise and above all faith, is the best treatment of all.
Dr. David McIntosh at the University of Mississippi is one of the most caring, progressive and expert GYN, surgical oncologist in the nation. I believe that I did see a comment of someone asking about a physician. It is critical that anyone facing this disease seek expert care from an oncologist specializing in this area.
Begin each day knowing that today is a good day and there is hope. Be aggressive in seeking the best of care possible. We can beat this. God Bless.

nicnol
Posts: 1
Joined: Apr 2010

Hello, my mom was diagnosed with PPC last February after her surgeon found masses on her omentum, colon, ovary during surgery to remove her gall bladder. She had symptoms of IBS for a whole year before the nurse practitioner she had been seeing for "her nervous stomach" finally sent her to a gastroenterologist because she had tried everything from Prozac to Immodium and couldn't get rid of her symptoms! She is Stage III, she had 9 rounds of chemo, debulking surgery and 9 more rounds of chemo which ended in Oct. 2009. She has had her CA125 levels checked twice since then and so far so good. My question is, did any of your mom's also have other cancers earlier in their life? My mom had colon cancer at 53 (20 years ago). She had 18 inches of her colon removed, no chemo, all was well. I am just wondering if there is a connection. Also, if the cells of PPC are the same as ovarian cancer cells, how do they know its PPC????

Anyway, I feel like a ticking time bomb. She has not had genetic testing as far as she knows. She doesn't ask very many questions about what she has, what they are doing to her, etc. she's from that generation where you don't questions doctors! Drives me nuts!!!

Lisa in Michigan

lillin20
Posts: 8
Joined: Mar 2010

many times PPC is diagnosed in women who do not even have ovaries anymore (from ovary removal). From what I understand PPC IS ovarian cancer...the only difference is- it is found elsewhere (Mainly and most often- the omentum and colon)
The bummer thing is that the Omentum is an "organ" that regrows...so simply removing it doesn't mean the omentum is gone...it will re-grow and thus PPC has the opportunity to come back...it stinks!

My grandma was diagnosed the SAME way as your mom...she went into the hospital w/ pain in her side and they did an ultrasound and decided she needed to have her gall bladder removed- after the gall bladder was examined in pathology they noted PPC on it...then our journey began.

My grandmother never had any other cancers in her life- and neither did my great grandma...just this one.

lillin20
Posts: 8
Joined: Mar 2010

Hi everyone. I dont know where else to post this....but I wanted to update. My grandma has chosen to not continue with any further treatment. This is her 3rd relapse and the chemo the second time around was terrible for her. She is expected to pass before Thanksgiving. Please keep our family in your thoughts and prayers.

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