Cancer Survivors Network

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

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

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.

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

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?

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

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

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

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

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

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

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!!!

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.

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.

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

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

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!

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

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

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

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

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

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

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.

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

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

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!

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

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

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???

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

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.

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.

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

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

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.

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.

NICNOL-SEE MY POSTING-I A NOT SURE IF I SPELLED YOUR NAME RT THE FIRST TIME.SHE NEEDS TO BE CHECKED FOR LYNCH SYNDROME!!!! GOOGLE IT AND RESEARCH IT. ITS IMPORTANT FOR YOU AND YOUR CHILDREN.

MORIA

I have PPC & I guess I am quite lucky as there is no evidence of cancer in any of my other internal organs but I did have cancer cells around my lungs so my oncologists aren't sure whether I am grade 3c or 4. I must get that sorted out next time I go to hospital.

I have just finished carbo/taxol and they have decided not do do any surgery on me because the cells are thinly spread out like a sheet. I think they said the cells are too small to remove surgically.

The way they found my cancer was by a CT scan & the way they knew it wasn't ovarian was that my ovaries are healthy & clear of cancer. My CA125 has dropped from 1119 to 70 and I still have another reading to go. So I am keeping everything crossed in the hope that it continues falling.

My oncologist is a great guy and tells it as it is. Its amazing how you put yourself in someone else's hands and trust them with your life.

Best wishes Tina xxxx

Forgive me, I'm new to your site and I just posted a message, but it ended up way back in the chain of messages. I'm afraid it won't get read, or do you all go back and look for new messages that were linked to older ones? My other post was titled "I'm afraid I have it". Sorry if I didn't do it right.

Donna

I bumped this up to the top of the thread.

Everything started 2006 September on my birthday when they told me that I had cancer and 6-8months to live. My husband has a contract in australia and I came back home in Houston TX to visit MD Anderson when they thought both countries that I had breast cancer. after 26rounds of chemo the cancer came back for 3rd time, and now they said is peritoneal primary
carcinoma and I have a new carcinomatosis with some fluid in my tummy. I am back on chemo with Doxil and Carbo the first round and I am hoping this time to work. I am very fit and strong and for the first 4days I had very hard times but now is getting better, but my depression is unreal and my anxiety for the unknown. I am praying to Lord tokeep alive and give me strength to face my new torture in my life, and I would like to know if there is any hope out there. I have a lady friend who achieves 4years in rem mission (after 4times the cancer to come back on a different type of cancer and that gives me some courage, but there are times which I am thinking my world is gone. I have 3kids and they are devostated
and special my little one who is engaged, she is trying to keep me alive to see her wedding
next year. I found hard that disease to kill me, as I am a strong character (builder) by
trade, but I am facing the chemo alone as all the family is in Australia and Greece and
I don't know if I have to ask second opinion, for my treatment sofar. I am 65years old and extremely fit, but my anxiety is killing me at the moment.

I was diagnosed in July 2007. It's been a long road. I have learned to live in the moment. My Ca 125 was never elevated. It's not a good test me me either. Dr Warshal at Cooper University Hospital is my Gyn/Onc. He added a HE4 test which may or may not help diagnose a recurrence. I am scheduled for a CT scan of the chest, abdomen and pelvis next week. It's been a year since my last one. I go for internal exams every 3 months. It's really a pain in the butt. Lol. I try to keep healthy and exercise. I gained weight on chemo because of he steroids. They raised my blood sugar.
I just went back to work part-time. I am still tired and I have some neuropathy in my hands and feet. Some days are worse than others. I also had 12 rounds of taxotere for consolidation every 4 weeks. Hang in there.
keep in touch
Beth

Dear Beth, My Name is Mary and i know what you are going though,At the time i was diagnose I felt all alone,I could not find one person with PPC,even the cancer foundation could not find someone to talk to that had the same cancer as myself.I was diagnose with PPC in Aug.2007 and had my surgery with DR Warshal at cooper hospital and my chemo therapy also with Dr. Warshal.I am still in remission.In 2009 i had colon cancer and went though chemo therapy again but it was not as hard as my first.I wish you luck on your cat scan and i will keep all of you in my prays.We all have been though hell and back,but were hear now,I no longer look at what kind of cancer i have because we all are fighting for our life and we are all scared and we all want the same thing to keep living,We all no what it feels like to be told that we have cancer and we all suffer.I love you all please keep in touch because i need you all.I am new at this,I found this web sight last week and i am so great full Love Mary also blue802@aol.com God Bless You All Mary PPC stage 111C also colon cancer stage 3

Hi,
Thank you for your comments...my mother's had fallopian tube cancer that spread to the peritoneal area. She underwent surgery and chemo and was in remission for two years. Now she is considered a stage 4, however, her ca-125 is 25 and has never been elevated. What other ways has your doctor been monitoring you? Also, is there anyone who can recommend what chemo they have been on. Are some chemo's more successful than others or does it end up being the same. My mother was first treated with taxol and carboplatin. the doctor mentioned gemzar or doxil with carboplatin. they are saying the nodules on the peritoneal lining may be too small to biopsy so depending on what the tumor board comes up with tommorrow, she may start chemo next week. my mother is not symptomatic right now so doctor said she could wait, because whether she starts treatment now or later the outlook would be the same (didn't know what she meant by that, but I did not want to ask in front of my mother). Needless to say other doctors have told me to start treating asap and my mother seemed like she wanted to start treatment now. i am frustrated with her doctor, because she is so wishy washy, however, my mother's lymphoma doctor (she has hodgekins lymphoma also, that is in remission) is awesome and has always looked out for both cancers. she is followed up every 3 months by both doctors and every 6 months gets a catscan (that's how they discovered the cancer). i have always had to keep on top of the gyn onco and at this point the chemo will do what it has to do, so i don't think it's worth uprooting my mom and delaying things by going to someone else. what upset me more is that she told me my mother does not qualify for clinical trials, because she has lymphoma, but I wanted to see if she could be treated with avastin. does anyone know if avastin is still a clinical trial and if it is helpful. i am willing to pay for whatever insurance won't cover. i am overwhelmed and appreciate any comments. Also, has anyone been treated with avastin or anything, while in remission (to prevent cancer from returning).

Hi all

I'm just coming through my first (and prayerfully) my only round of surgery and intensive chemo for PPC. I was really just going right through it like a warrior and then right after the chemo ended and I got my first all-clear CT scan, I'm like "what the hell!!!!" What just happened to my life? What is the possibility I'm going to continue to live to 97 like in my plans? What do I need to do before I go? Is there a plan for me?

I'm focusing on life on a day to day basis and getting the most enjoyment out of everyday but there's definitely a haunting and sometimes tearing (or as I like to call in "inappropriate eye leakage) which happens at the most inexplicable moments. Like just be happy as hell to sit in a movie theater with my girls.

At the last visit, my doc said that the Avastin (which I'm on for the next year) is really demonstrating a strong positive result...providing longer remissions. So I'm hopeful, grateful, believe in the Great Spirit, and after all that, still have a sadness that is always easily accessible and right under the surface.

Thanks for all you guys being out there and sharing your stuff. McE

I too have PPC & was diagnosed Nov 2009. I do feel like you some time, as I think "what on earth has happened to me?" However I have a girlfriend who I met just before I was diagnosed who had also had PPC. She was diagnosed this time 3 years ago and finished her chemo Sept 2007. She is alive and really well - living life to the full and is my inspiration. She is now on 6 monthly check ups and her latest CA 125 this Monday was 7. How great is that. My last one was 65 as I finished chemo March 26th. I will get my baseline reading in June.

Having PPC is not a death sentence as my friend Teresa proves. She doean't think about it until the day of her check up. So we can all beat this the same as my friend.

Take care & good luck. Tina x

I am scared too. My children are grown up but I love them dearly and I am still their mom. My CA 125 was 119 at diagnosis and is now 65 after 6 rounds of carbo/taxol. I am not happy about this as I know under 35 is what is considered cured but that is what I have and have to come to terms with it.

Xyotol - I've not heard of it. Is this a second line treatment for PPC? This maybe something I might be offered.

I so can relate to you. I am 50 years old and am no way ready to leave this world. Please keep posting and we can support each other. Much love Tina xxxx

Moria....Lynch Snydrome as it relates to OVCA is a recently discovered connection. I spoke to my Gastroenterologist about it today. He is moving my colonoscopy up from 11/2011 to this next month because I have some early familial cancer (not much, though) and a history of colon polyps. I have never had a colonoscopy that did not show polyps, though they have always been non-malignant. I went from being scoped every year to every 3 years.......now I have to go back to having it done every year.

The genetic testing was going to cost me $750.00 (my co-pay), so I decided not to have it done. They don't remove your colon as a preventative measure unless they find evidence of malignancy, so having mine checked every year seems the best/safest bet at this stage.

Any pattern of early (before age 50) cancer in a family should be looked at as being possibly connected via Lynch Snydrome. Another red flag are the colon polyps. If you have a total of 20 or more polyps over your lifetime and a diagnosis of cancer, you are considered at risk for Lynch Syndrome. I have had 4 colonoscopies and a total of 16 polyps. That, combined with the OVCA, makes my gastro doc a bit nervous.

Carlene

I am sorry to read about your family having such a bad time with cancer. You must feel "its not fair"

I have PPC (was 49 at diagnosis), my Mum had bowel cancer, so did her brother & their mother had pancreatic cancer. So your post on Lynch is really interesting and I will go look at the web site. My mother also had breast cancer (that was cured in 1981) & I was tested for the mutant BRCA gene. I was tested positive form BRCA2. Is it possible to also have this Lynch syndrome????? I will look into it.

I have 2 children, a sister with children and cousins so this is important. Thanks.

Tina....were the cancers in your family diagnosed before age 50? That seems to be the key that makes Lynch Snydrome a strong possibility.

Carlene

No Carlene. My mum's breast cancer was diagnosed at aged 48 but all of the others were in their 70's. My mum's brca was cured and she went on to live until 75.

Tina xx

Thank-you for posting your story on here, it has given me hope. I have PPC & was graded 4 as the fluid had gone into the lining of my lungs as well as having the ascites. I had my lungs drained 4 times but never needed my abdomen draining as when I started chemo it went on its own.

My CA 125 was 1119 at diagnosis and is now 34 after finishing chemo 4 months ago. It is great to hear success stories like yours, I hope you continue to be well.

Love Tina xx

Thanks Sharon.

More hope on this front too. I'm three months post chemo and 7 months post DX/surgery and my CA-125 is in the single digits, too. Am participating in an Avastin clinical trial which goes until next year. Am really trying to eat well, exercise several times a week, do a daily meditation and hold the holiness of life.

I'm very aware of my new companion, my own mortality, and so make different decisions about how to live, what I'm choosing to do with each day. I did take my whole family to the beach for two weeks, something which I have so longed to do for so many years, and knowing that I am well and feeling well at the moment told me I needed to do it now.

I have many friends who are in remission and many friends who are in a treatable but not curable stage of cancer. We are all just trying to remember that our lives, our stories are not about our illness, but about the moments of love, joy, and hope. That is the best we can do for those who love us and for ourselves, regardless of our illness.

I am a believer that we are simply on a journey and our lives are all about the emotional/spiritual quality we choose to live with. That is the choice we get to make regardless of our physical circumstances. I am hopeful that I can hold that perspective and face any challenges that come my way.

I support you all on your journey, and the adventure of living.

McE

Love this website.
Very hopeful these stories. Thanks for posting.

My mom has PPC, stage 4. We found out a few weeks ago after she had trouble breathing bc of fluid in her lungs. She's had two thoracenteses.

Neither of us is really impressed w her doctor now bc of some info he's left out or glossing over of procedures.
He also seemed really weary and closed to experimental treatments while 2 other doctors we've seen have mentioned them. We are in Baltimore.

I'm interested in diets and treatments that ppl have tried. She just started chemo, I think carboplatin and taxol.

Her doctor said Avastin has lots of bad side effects (like high blood pressure, bowel perforation, etc) and a higher response rate but no cure rate and has recommended against it (well more like blew it off). Our doctors haven't told us that this is incurable---while still unsure if it was ovarian or PPC, they said there's about a 16 to 20% cure rate.

Is this true about Avastin? What are some other ppl's experiences w it?

Also, two other doctors suggested this GOG Protocol 252, I think the drug is called Bevacizumab if I'm reading this protocol right. Any thoughts or knowledge about this?

I appreciate this site and any comments. Since we're on the fence about this doctor, I'm hoping for some good insight from people who might know more than this guy, he's really frustrating.(Or even suggestions for docs around Maryland).

Thanks
Alex

This comment has been removed by the Moderator

Firstly welcome to these boards. I am sorry to read about your mum but WOW it is the exact same as me. I am stage 4 PPC and was diagnosed with fluid around both lungs. Had 4 chest drains and 1 plueradesis. My CA 125 was 1119 and I was put onto carboplatin/taxol the same as your mum. I had 6 rounds and my CA 125 came right down to 34 at its lowest.

The reason the fluid was on the lungs is that the cells that are attached to the peritoneum would've somehow migrated to the lining of the lungs. Once in the lungs they weep fluid and block the drainage points. That is why the fluid stays in there. Once the chemo kicks in the body re-absorbs the fluid and your mum will be able to breathe again. I have been fluid free since Jan 10. Did your mum have fluid in her abdomen? What is her Ca 125?

I am in the UK & I don't think we use avastin. The othjer ladies on here may be able to advise you on this drug.

I am sorry your doctor hasn't been open with you - you must feel very scared and let down.

PPC is rare, and the statistics are often doom and gloom because of this. I guess the ladies on here will advise you about changing your doctor and choose one who is a gynae oncologist.

Please feel free to ask me anything. Love Tina xx

Hi thank you both for the responses, I definitely have been using these bits of info to further educated myself and research more.

Update is my mom responded overwhelmingly well to her first few rounds of chemo and we're all hopeful. So far the biggest snags are the sickness after chemo (mostly bc of the shot they have to give give to get her white blood cells going again the day after chemo) and not having hair--she's not really sure how to do a headscarf or wig and feel good about it.

Thanks so much for the feedback and support. I hope things continue to go well with you and with my mom.

My mother has been suffering with abdominal pain for months and her PCP gave her medication for heartburn. Finally, after draining 4 liters of fluid from her abdomen and finding cancer cells, going through a battery of tests, finally getting a PET/CT, she was diagnosed with PPC yesterday.
We are in the midst of getting a referral to a GYN Oncologist and getting our first appointment and treatment plan.
I am so grateful that in my investigation of this disease, I found this site. What a godsend you all are for me. This is so scary – Maybe you can help me.
I plan go accompany my mother and father to her first few appointments as they have a tendency not to ask questions and forget what they were told. I know that they think I’m treating them like children, but secretly, I think my mother is glad that I’m coming along.
I wanted to ask your advice. What questions should I be asking? I’m hearing lingo on this site that I don’t understand. For example: What is Ca-125? I need to be prepared because I know that I’m being relied on and I don’t want to let my mother down.
Mom was 79 last month – I see on this site that many of you are younger than I am – Can I hold out hope that my mother will survive this? Is this genetic? How should my sister and I watch out for this cancer?
I appreciate anything that you can do to help us.
XOXOXO
Gayle

Firstly I am sorry that your mum has been diagnosed with PPC. As you may have read, I too was diagnosed with PPC Nov 09.

CA 125 - is the tumour marker. The cancer cells give off a protein (I think) that goes into the blood system. The normal range for someone without PPC is between 0 - 35. Mine was 1119 at dianosis & sometimes I have read of other ladies being much higher than that. As your mum has treatment the numbers will fall & the doctors will use this as a guide to see how well your mum responds to the treatment.

I am 50 and yes I am afraid this cancer can be genetic. It is linked to ovarian and breast cancer and some ladies have the gene mutation BRCA 1 or BRCA 2. Your mum can be tested for this and if she is positive you & your sister can also get tested.

Some advice that was told to me "The beginning bit is the scariest" It must all seem like a bad dream for you all because as soon as someone is diagnosed with cancer everything happens at top speed. Try to come on here and post questions as that will help you to come to terms with what is happening.

It is good you are going with your parents to the hospital. Everything will be strange and your mum or dad may forget things. My son's girlfriend came with me once and took notes because there was so much information I couldn't take it all in.

I wish you all well. Please keep posting so we know how you all are.

Tina xx

Hi everyone I too have been diagnosed with PPC. I have recently found out that I am platinum resistant, which means that the carbo/toxil mix did not work for me. I just received this diagnosis 2 weeks ago. I have never been so depressed in my entire life! I was told by a gyn oncologist that I was a perfect candidate for a new clinical trial only to find out that I wasn't because they will not perform the debulking surgery due to fluid and nodules in my lungs. To say that I am terrified is an understatement. I have an appointment tomorrow, with my regular oncologist, to discuss the Doxcil treatments that they are going to start me on next. I hope that this next round of treatments will finally start to reduce the cancer. I am getting married next June and I hope to be able to celebrate not only my marriage to a wonderful man but also my life.

Thanks for listening.

Jane

I think I have replied to you on facebook? :) I too have PPC & had fluid around my lungs when I was first diagnosed. I think I had very small nodules also but since I finished chemo (carbo/taxol) the fluid has kept away. Did you have to have a chest drain? I wish you loads of luck. Please start a new thread that will be easier for people to find and reply to you. Please don't be too terrified, this cancer is scary cos it can't be cured but it can be kept under control. I have a friend with this cancer who is 3 years into remission. She had 1round of chemo and has not had any reccurance since.

Take care Tina xx

Dear All

My mum is 71 and has just been diagnosed with PPC. Two of her sisters have died from breast cancer a few years back. My mum kept doing mammograms to ensure that she also didn't suffer from breast cancer and it was always clear. Until last week when she felt pain in her stomach and was bloated. She was taken to hospital and a CT scan showed that she had a moderate to intermediate PPC with a couple of cancer cells on her liver. She has been drained from the fluids 3 times in the last week. 5 litres altogether now. Her CA125 was 178.

She started chemo treatment (not sure what the exact medicine is called, I shall find out) on Tuesday. She was ok during treatment, but when she went home, she experienced high temperature and infection in her urine. She has been also going to the toilet frequently and has pain whilst passing her stools. The doctors subscribed her antibiotics for her urine infection and cream and pain killers for her behind. She's also having pain in her knees.

Are these side-affects normal? Will she get better? Her next chemo is in 3 weeks' time. Is that typical? What other side-affects will she experience? hairloss? I am very worried about her and finding difficult to cope, any advise is much appreciated. People are saying different things about life expectancy with this illness. Is there a typical median for this? Also, will chemo improve her life, or is it less painful to carry on living without treatment?

Many thanks to you all. All the best.
Hannah

Sorry to hear of your mum's illness. I guess she is on carboplatin and maybe taxol? Her CA125 is quite low which is a positive sign. I too have PPC & my CA125 was 1119 when I was diagnosed. The chemo is like a poison so I guess her body will react to that. Let the nurses and doctors know all about her symtoms and they should be able to do something about it. I had anti-sickness meds. Chemo sometimes causes diarhoea so I am sure the nurses can give her something for that. My chemo was every 3 weeks too and I had 6 lots altogether. If your mum is on taxol then yes she will loose her hair. It will start to come out 3 weeks after the first chemo.

Unfortunately PPC can't be cured but the chemo can control it. I have a friend with PPC who has been in remission for 3 years. With me, I felt ill a few days after my chemo. After about 3-4 days I was my old self again and was able to get on with my normal life. However, the chemo is accumulative so with each one you feel a little more ill. By the time my sixth one came around I felt pretty ill (just felt poorly but not sick or anything) and used to stay in bed when I felt ill. The thing with me was the fatigue & I used to give in to it and go to bed or lie on the sofa.

I wouldn't choose NOT TO HAVE CHEMO. The chemo is not so bad and do not dread the thought of having to have it again. It is bearable.

I hope this has helped. Please post again so we know how your mum is doing.

Tina xx

Many thanks Tina for the valuable info you've posted.

I checked and you're right, she is on carboplatin 550mg and taxol 330mg. Does this sound right? She's also been given sickness tablet, so that's better now. But she hasn't been eating, so she was admitted to hospital again to check her immune system, apparently chemo affects white blood cells too? she's now on a drip, so she's a bit better.

does chemo cause any permanent side affects? such as not being able to walk etc?

She also, has a couple of small areas on her liver, guessing that it has spread from her peritonea to her liver? would chemo treat all areas?

Thanks so much for your help. So how long have you been on remission now? and would you be needing more chemo? how often do you have to go for checkups? I am guessing that's blood tests and ct scans?

hope you get well soon.

regards

I am going to reply to you using a new thread as there are over 70 messages here and it is hard to find things.

Tina

Hi Tina
I am new at this. My Mom was just diagnosed Sept. 2010 and has had one treatment of carboplatin. Can I share her history?
86 yr old female in really good health
no previous medical problems except HBP and COPD and a slight heart murmur
began feeling "full' toward the end of July. Had some Shortness of breath just prior to that. Went to see family pract on the 28th of July and on the 7th of Sept. Her family doc thought she was just obstructed but decided to do CT scan anyway which showed ascites(Sept 9)
Parasynthesis performed and 3.5 liters of fluid drawn off (Sept 10)
CA-125 was 1100 other lab was generally normal
Fluid cytology was positive for adeno-carcinoma cells--origin could not be traced. No masses found on CT
Diagnosed as Possibly ovarian or primary peritoneal carcinoma ---Dr. at West Clinic-Memphis,is treating her for Primary Peritoneal since he thinks that is what she has, but does not know 100% for sure
Had a good EF about 68%
Had her first chemo (carboplatin) on the 17th and has lost 23-25 lbs of fluid since then. Is feeling relatively well. Goes for 2nd treatment on the 8th.
Dr. Tillmanns (gyn/onc) at West clinic has suggested that she also be given taxotere at the next treatment and has mentioned debulking surgery.
Our question is how would she do with just treatments? Could that one treatment send her into remission? What is the normal course? Has anyone on this blog not had the debulking surgery and how are you?
thanks for listening Also, What is a new thread and how is that done? Can I go to the facebook page?
Gina

At the top left hand corner of the Ovarian Cancer Discussion page there is a link to click that says "Post a new topic. Clic on that and enter subject and have a go. That will put you at the top of the list.

I have had two debulking surgeries... one in July, 2007 at age 68 and this year (obsructed bowel plus debulking) at age 71. The second one was much harder on me than the first. So, I think age has a part. It is a difficult surgery and requires getting up and moving. It would depend on your mother's physical condition, I would think. I did take 4 doses of carbo/taxol prior to surgery that shrunk the many tumors by half and was not too hard on the body. I would try that before the surgery.
Saundra

Hi Saundra and thanks so much for responding. The caregiver role has overwhelmed me this week, so sorry for the delay in getting back to you. I have never posted on any site except maybe 4 times a year on Facebook. I was really unsure as to how this all works, but I imagine I will get the hang of it. My Mom went today for a Neulasta injection and I was really worried all night about side affects. It is hard to look up information sometimes since many people tend to post negative comments. After much thought and talking to friends and relatives, we went to get the injection, and so far so good. While we were there, I got her CA 125 results and it had dropped 900 since her first treatment. Is that normal? Her Dr. has not given her the taxol because her WBC counts were down with the carbo alone. I am not sure about the debulking surgery. She is healthy for an 86 yr. old, but she is still 86. We will see
I hope you are feeling better since your surgery. It is always rough when you are in the recovery phase. I am sending healthy hugs your way.
Thanks again and stay strong
Gina

Your mum sounds like she is in good hands. Yes she can just have treatments. I never had surgery because my cells were spread too wide and it would've been a very invasive procedure. So I had 6 rounds of carboplatin and Taxol every 3 weeks. My CA 125 was similar to your mums at 1119 and by the end of my treatment is was 34. So chemo alone can work. It is just over 6 months since my chemo stopped and I am feeling really well. However I am a little younger than your mum - I am 50 and was very fit and active that was why they gave me taxol as well (taxol is the one that caused your hair to fall out)

My CA125 went up to 71 last visit so I am waiting for the next one to see what the doctors wan to do with me.

Hope your mum does ok, Tina xx

Hi Tina and thanks for getting back to me. I am relieved to hear that you had treatment only since it was the "very invasive " part that scared me. As it was described, and from what I read, it would not be an easy surgery on an 86 yr. old, and it cannot be performed laproscopically or robotically. My Mom has had two treatments so far. After the first her Ca-125 dropped from 1100 to 200. Is that a normal response? I imagine the normal value (less than 35)is harder to achieve and to keep with such a difficult cancer to treat. Her WBC count was low so she had a Neulasta injection today. Her CA 15-3 is elevated as well. It is a strange marker that can mean a number of things. Her Dr. is only giving her the carbo alone without taxol since she is older and since her WBC's were decreased. He told me that she got a 6 tier dose the first time, but reduced it last Friday to a 5 Tier dose. I hope the carbo alone will work for her. She felt miserable for several days after treatment, but is on the mend now...she will feel better just in time (I am sure) for the next treatment.
When do you have your next visit? I understand how anxious you must feel. I had NHLymphoma, and every visit I was afraid of what might turn up next. Thankfully, I have been in remission for over 10 years now. It is a fight every day. Stay healthy and strong, and be well. I'll check back with you soon. Thanks again for responding. It is nice just to talk to someone who understands. Not much info on PPC around. Gina

Firstly a drop in the the CA125 from 1100 to 200 is fantastic and a really good sign that the treatment is working. You are right in saying that (in the UK) the normal range is 0 - 35 and I was lucky enough to reach 34 2 check ups after my treatment fininshed.

My next visit is next week 18th October. It was 25th but I have been so anxious that they have moved it forward. I think I'll be able to cope with whatever thr outcome - it is the waiting and thinking that is so hard.

I am so pleased to see you are a 10 year survivor from NHLymphoma. Please ask me anything and because this is such a massive thread of 84 messages why not start a new one and it will be easier for people to find the messages.

Take care to you and your mum

Tina xx

Hi Hannah and to everyone else on line,

My mum is 66 and was diagnosed withh PPC about 8 weeks ago. She had a hysterectomy last year however ovaries were left in. Mum had her surgery aroung 5 weeks ago where they removed her ovaries and her omentum. Pre the surgery we new that there was cancer in the omentum also and that it would be removed. The surgery also revealed that it had started to grow where the womb used to be and had started to go to the ovaries however did not start there, more than likely started in her tubes as it was there also. So overall very scary as now confirmed in 5 different places.

Her oncologist explained that the surgery is really about exploring futher and removing what they can to better assist the chemo as the chemo is the only real cure for this. Mum's chemo was last thursday (6 days ago). She was told the first 3 days are the worst however it has just gotten worse every day. Her symtoms started on day 2 with severe stomach pain, leading on to nausea, constpation which has then lead onto severe dehydration from vomiting, back in hospital yesterday on a drip, given enima which has brought on sever diarrhea. Overall she is in excrutiating pain and cannot keep any food down and does not want to even continue with the chemo if it continues like this. She called the cancer help line and they put her in contact with a breast cancer survivor who couldn't relate to her chemo reaction as she didn't have any. So mum is feeling quite hopeless about the whole thing and really wants to know from otheres if this gets better as we are now at the end of day 6 with no light in sight. Her other concern is that if she reacts so severely that they may not be able continue the treatent anyway (she ended up back in on a drip 9 days after the surgery also dehydrated ect).

So overall like you I am looking for some responses on the chemo side of it all as I have read all of the postings and most people don't refer to their chemo experiences as being horrific, or maybe they were and the memory has just faded. Hannah in answer to some of your specific questions in your last paragraph,my mum's cycle is to have 6 treatments overall every third thursday. Her oncologist told her she will lose her hair. Side effects are aches in knees and joints and if the feet and hands experience too much numbness and tingling it may mean slowing down treatments as this can result in not being able to walk.

Many thanks to all of you brave ladies for sharing your stories and helping those of us that are trying to help our mums through this.

Michelle

I'm sure you will get more responces to your questions but you should start a new topic to make sure people read your posts.
Chemo is different for everyone mine was not bad til the third treatment then it was awful but not as bad as your Moms then my forth has not been too bad so far. I have read of some people having a horrible first treatment then getting progressively better or some
staying the same.
Do call your chemo nurse as they want to know what is happening and can help with medication for everything.Usually a week after the chemo you start to feel better, I hope your Mom is starting to get stronger and I hope her next treatment goes easier for her.
Good Luck
Colleen

I started posting a different thread on our friend, Gerri. She was recently diagnosed with stage 4 PPC. She has seen four gynecological oncologists. Three of the four say chemo, surgery, more chemo. One doctor thinks that because the lung is the area that lights up the pet scan, she should have a lung biopsy before starting chemo. She has signs and symptoms that point to PPC. Gerri is accepting of the chemo, but is rejecting the surgical treatment. She is asking me to find out if others have been treated successfully with chemo only. She is aware her prognosis, per the books, is approx 3 years with all treatment. Would her prognosis be the same without surgery? She is willing to fly anywhere for additional opinions. I am fearing she is seeking an answer that doesn't exist. I know if it were me, I'd be anxious to have the surgery and have them get out as much of the cancer as they can. I am checking out MD Anderson in Houston, Bringham and Women's in Boston, Sloan Nettering in New York and Mayo Clinic in Rochester. Again, she has seen a couple of the best so far, going to Rush in Chicago and Dr. Doran in Park Ridge. Please, any comments, direction is so appreciated and needed. Thanks.

I have PPC stage 4 that has mets to the lining of my lungs. I live in the UK and surgery is not an option for me because my cancer cells are too tiny to even consider any kind of surgery. I was diagnosed Nov 09 and had chemotherapy only. Carboplatin / taxol. 6 infusions every 3 weeks. My CA125 was 1119 and came right down to 34 while I was on this chemo. I had 7 months remission before it unfortunately reared its ugly head. But my oncologist has put me back on carb/taxol as we know it works for me. I have resigned myself to live my life on chemo as it is my hope of keeping this disease stable.

I have had both lungs drained of the fluid accululation which gives me a good quality of life. I too am aware of the "text book" prognosis but we are not TEXT BOOKS ............... we are people who will defy the odds and will out live the TEXT book odds.

Chemo is a good way of keeping our disease stable and as long as you can tolerate it grab it with both hands and enjoy your life.

Much love Tina xx

Thanks, Tina. Like you, Gerri's tumors are undetectable via pet or cat scans. The doctors describe her tumors as "sand like". With that said, what do you think is "too tiny" for a surgery? I'm wondering if medical practice is different in the UK? This is all so confusing as you seem to have great initial results from chemo only. The surgery is a serious one, with surgeons telling Gerri it would be a 6-8 week recovery period. Carbo and taxol are the drugs recommended for Gerri as well. There are a few surgeons here to seem to be using a heated chemo approach delivered direct to the perineum after debulking surgery. Anybody have any knowledge or experience with this treatment? Thanks to all -- Donna

Hi Donna
Sorry to hear about your friend. I was diagnosed with PPC3 in October 2008. I am in Australia and my gyn/onc said surgery and then chemo. I underwent the surgery as I had ascites in the abdomen and the caking had spread to my omentum/overies/fallopian tubes and appendix which were all taken during debulking surgery. The only thing that showed on my CT scan (as far as I am aware) was the ascites and my CA125 was just under 4000. I had the carbo/taxol which worked for me but 14 months after chemo I now have enlarged lymph nodes and several small nodules. Holding off on chemo as long as possible.
If Gerri is fit and healthy she shouldn't have too much trouble with the surgery.
Regards Jenny

Geri went and had a repeat of the scans last week. She was just told that a 3cm tumor is now seen on her right side. She is scheduled for debulking surgery on Monday. Biopsies will be obtained and chemo started soon after. How soon after debulking will she be strong enough for chemo? The plan is to remove the tumor, omentum, any lymph nodes and organs involved. My god. She has a large amount of fluid in the abdomen. Her lungs are clear now. Do they put a port in for drainage during the debulking surgery or is that put in after? So many questions.... so much is happening so quick.

Everyone is different and recovers at a different pace. I was ready (and eager) for chemo 4 weeks after surgery. I worked really hard at recovery: ate carefully, began walking right away - even if it was just half a block to begin, and rested a lot too. I had no port for drainage, the ascites were removed during surgery and then subsequent chemo prevents them from reforming (I think). Good luck.

Gerris surgery lasted an hour longer than predicted. Even though she had a clean colonoscopy last month, cancer was detected on the outside of her colon. 12 inches of her small intestine and 6 inches of her large intestine were removed and stitched back together. Her remaining left ovary was cancer coated and removed. Her omentum was removed as was 2.5 liters of fluid. The tumor was also removed. Doctors said they removed all large masses of cancer. Pattysoo, what do you mean by ate carefully? Did you altar your diet in any way? Did your cancer metastisize to other organs? Colon? Has anybody else had part of their colon removed? Thanks for any answers..

Hi Colette,
I am also from Buffalo and wondering if you are going to Roswell. I am BRCA1 and so is my sis. She has had breast , fallopian and now probably PPT. Hope we can talk soon. I would like to know your docs and advice you have gotten. Thanks
Kathryn

I tried to focus on foods that would really build me up after surgery. I usually eat very well, but surgery and recovery caused me to lose quite a few pounds and I was pretty weak (for me). So I tried to make every calorie count. I ate lots of high quality protein - animal and vegetable, leafy greens daily, some fruit, whole grains...you get the idea. I usually enjoy some kind of dessert each day, especially since I love to bake, but for the recovery time I eliminated most sweets in favor of more wholesome calories. My cancer stayed within my abdomen and was found on the serosa of several organs, but not metastasized yet. I didn't have any intestine removed - that sounds rough!

After surgery and completing 6 rounds of carboplatin and taxol and 1 year of maintenance with taxol, my CT indicates a problem near my liver. I am seeing a surgeon tomorrow. Didn't know if more chemo was an option but if you have it it more than once I am hopeful that I will too and it will work like it did the first time. Thanks for the inspiration.

Hi Daniel
I am from Australia and we do not do HIPEC there. I had the usual treatment of iv carbo/taxol after debulking surgery. After chemo there is no medication that I am aware of that you can take. A lot of people take supplements which seem to help some people. There are so many alternative treatments out there but whether they work who knows. There are also several books that you could buy in regards to alternative treatment.
Wishing you and your mum all the best. Jenny

Thank you, Jenny. All the best to you!

You might want to re-type your message under a new post.

My mom is looking for trials just like you.

I also have PPC, stage 4, and I am platinum resistant. I entered a trial that includes
Doxil, Avastin and Torisel. I have only had one complete round so far.
Day 1 --All three drugs
Day 8 --Torisel
Day 15 --Torisel
This Friday I start the second round. Alot of times I believe the trials for peritoneal and ovarian are done the same way, they just call it ovarian. Keep us posted on how you make out in your surgery. Sending prayers for you.
Vicki

I could have written the second and third paragraph of your post myself!!!!
Mum is stage 3 ppc, and this is exactly what I was doing , until I realised it was getting me no where, what will be will be , we cannot control the outcome of this disease.
I enjoy time with my mum so much now, every second is precious.
oh to happy days with mums xxxxx
Liz xxx

I was diagnosed in August 2010 by my GYN as having PPC. I had never heard of such a thing and found as many here that many in the health care profession just lump it under ovarian cancer. There is always hope and as we go on this journey we are not statistics. I am very excited to have found this...
When I was first diagnosed the next thing out of my GYN's mouth was not to google... He put me in touch with an outstanding GYN Oncologist who also performed my debaulking surgery with my GYN. I started a blog to try and get more information out there and am sharing the link. I look forward to joining the conversation. Right now I have to run...

http://peritonealcancerdiagnosisjourney.blogspot.com/