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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

moria
Posts: 2
Joined: Jun 2010

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

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

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

musicgang
Posts: 2
Joined: Apr 2010

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

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

I bumped this up to the top of the thread.

Afroditi
Posts: 3
Joined: Jan 2011

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.

CH1836
Posts: 2
Joined: Jan 2010

Hello Everyone,

It's been a few weeks since I last visited the site, I had my 3 month check in February,
everything was fine, my CA125 was 6.

Some women do not have an elevated CA125 with PPC, my CA125 prior to surgery was 17, so for me there has to be other diagnostics to determine disease.

My GYNO is wonderful, very compassionate and caring, I trust him, but there's only so much that can be done.

This becomes a wait and see, and in the meantime you make the best of each and every day. I've read the posts, having an gyn oncologist is best, they know how the disease works, some physicians know very little about PPC, other than you treat it as ovarian. The more I learn, the more I see that PPC is being treated as a chronic condition.

Keep yourself as healthy as possible, eat well, rest and surround yourselves with loving family and friends.

If your blood counts are at a good level prior to treatment, you're able to tolerate them better.

During my chemo sessions, I did notice that the women who were very frail seemed to be under weight. I know how hard it is to have an appetite at this time, but my family forced me to eat and when I couldn't, I drank ensure suppliments. For me it helped me tolerate the treatments, and although it took about 7 days for me to regain my strength, my blood counts were normal prior to the next round.

I wish you all strength and courage, and hugs and kisses to your family and friends who rally with you in support

All be well, Caryn

beth1
Posts: 1
Joined: Feb 2009

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

blue802's picture
blue802
Posts: 17
Joined: Aug 2010

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

Geeko
Posts: 5
Joined: Apr 2010

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).

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

Sorry, double post.

McE
Posts: 3
Joined: Apr 2010

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

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

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

cannycaz
Posts: 5
Joined: Mar 2013

Hello I have been reding your stories on here, very similar to my lovely mum who was diagnosed a few weeks ago. I would love to talk to you

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.

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.

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

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
Posts: 2
Joined: Jun 2010

HI THERE,
I AM CONCERNED FOR MY 57 YR OLD SISTER.WE WILL FIND OUT IF SHE HAS PPC FRI. I HAVE BEEN READING ABOUT YOUR CONCERNS WITH THE BREAST CANCER GENE. NINCI, YOU ASKED FOR ANY OTHER INFO REGARDING ANY OTHER CAUSES.
WELL HERE GOES.

MY MOTHER DIED OF COLON CA AT AGE 36. HER FATHER,(OUR GRANDFATHER) DIED OF COLON CANCER AT AGE 44. MY MOTHER'S SISTERS HAD AN ASSORTMENT OF SM. BOWEL CA,STOMACH(GASTRIC) CA,AND RENAL CA. WHEN MY SISTER HAD A MALIGNANT COLON POLYP 5 YRS AGO AT AGE 52 AND TOLD HER SURGEON HER FAMILY HISTORY HE SAID SHE NEEDED TO BE TESTED FOR LYNCH SYNDROME. SHE WAS POSITIVE FOR THIS. IT IS CONSIDERED THE "COLON CA GENE". SHE THEN HAD TO HAVE HER ENTIRE COLON REMOVED (SM. BOWEL HOOKED UP TO RECTUM) AND A COMPLETE HYSTERECTOMY.LYNCH SYNDROME IS RARE AND INVOLVES MANY CANCERS-THE GREATEST RISK BEING COLON CA ,THEN UTERINE,BRAIN,OVARIAN,RENAL,SM. BOWEL,PANCREAS AND PERITONEAL!!!!ALL OF US SISTERS WERE THEN TESTED. TWO OF US 5 SISTERS HAVE LYNCH SYNDROME. I DO NOT.

READING THESE ENTRIES I HAVE HEARD MENTION OF COLON CA AND UTERINE CA IN YOUR FAMILIES OR YOURSELVES. IF YOU HAVE THIS CANCER,PPC, AT A YOUNG AGE YOU NEED TO LOOK INTO LYNCH SYNDROME.IF YOU DO HAVE IT YOUR CHILDREN HAVE A 50 PERCENT CHANCE OF HAVING IT. LUCKILY I DO NOT HAVE IT SO MY GIRLS CAN NOT HAVE IT. A LOT OF DOCTORS ARE NOT EVEN AWARE OF THIS SYNDROME, OR WHAT ALL THE OTHER CANCERS ARE THAT YOU CAN GET.

I AM SURE MY SISTERS CA WILL BE LYNCH RELATED.

SHE COMPLAINED OF DIARRHEA AND CONT. BLOATING OVER 6 WEEKS. HER CT SCAN SHOWED ALOT OF ASCITES AND A LARGE PELVIC MASS. SHE HAS CAKING IN THE OMENTUM. SHE HAD A COMPLETE HYST. 5 YRS AGO. I HAVE A FEELING HER CA 125 WILL BE VERY HIGH.

PLEASE LOOK INTO THIS LYNCH SYNDROME-ESPECIALLY FOR YOUR KIDS TOO.!

DID ANYONE HAVE CHEMO FIRST, AND THEN SURGERY?

THANKS-I WILL KEEP YOU POSTED ON MY SISTERS DIAGNOSIS.
MORIA/MILWAUKEE WI

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

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

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

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.

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

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

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

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

cappyjo
Posts: 1
Joined: May 2010

chicagocx - I couldn't agree more. I always refer to it as Primary Peritoneal Cancer and then, of course, have to go into the whole explanation of how its treated like ovarian but its not ovarian... When/if the subject does come up I try to make people aware of PPC as an entity unto itself! And, yea, I was as disappointed as you when I scrolled down only to find discussions on ovarian and not specifically PPC!

I was dx June of '08 with Stage IIIC. Since then I've had 2 surgeries and am presently getting chemo, again. The first time, after surgery, I was able to have taxol/carboplatin 2 weeks after surgery. I also got into the GOG 218 study w/Avastin. After completing the 1-year study, they unblinded my part in it and I did, in fact, get the drug and not the placebo. I think it gave me some extra time because about 2 months after the Avastin was over, my CA125 started going up again. After my 2nd surgery, this past Feb. 2010, I didn't do as well. My chemo had to be delayed and then my doc could only put me on a lower-dose of carboplatin w/o the taxol 'cause I was too weak and my blood levels were too low to do both drugs at once. I get my 6th round of carbo this week and then I'll start on either taxol or gemzar (sp?). for another 6 months.

It's at the end of the next 6 months that makes me worry. I'm afraid the meds are just holding this at bay. My CA 125 went up slightly DURING my present chemo treatment and even though its still within normal limits, it worries me. Just got my blood drawn today for chemo this week so I'm a little nervous waiting for the results.

By the way, one doc I had started me on Doxil and I felt like I was sent to hell! I started bleeding rectally and nasally. I thought I was going to die just from the treatment! My daughter, who is in med school found my present doc that I am very happy with! He found 2 masses that 2 other docs totally missed! He's the director of the division of gyn/onc for the University of Miami. He also told me there is no cure for this, but is a chronic condition to be managed.

Sorry this is so long-winded. Just glad to find a place to vent and learn from others.

Thanks all for your blogs!

Sharon-NC
Posts: 1
Joined: Aug 2010

Hi. I sure wish I had known about this forum in December of 2008 when I was diagnosed with PPC. I woke up one night with extreme pain in my lower abdomen and got my period later that night, so thought I'd better see my GYN. I did, and he did an internal sonogram, blood work, and three biopsies. When I went in to get the results, he said, Good news, no cancer. I asked him why my abdomen was so bloated then, and he said maybe I had appendicitis and sent me to the ER for a scan.

After 10 hours and many tests, the ER doc came in and very flippantly told me, "Well, the good news is you don't have appendicitis; the bad news is the fluid on your abdomen is indicative of cancer." I told him that can't be right, my GYN just told me I don't have cancer. Then I kind of went into shock, my head floated up to the ceiling and I was looking down at myself sitting there trying to listen to the doc. Anyway, saw the GYN oncologist and he told me it was either ovarian or PPC. I'd never heard of PPC and was hoping it was that rather than ovarian, because my 51-year old cousin had just died of ovarian. Well, then I looked up PPC and was hoping it WAS ovarian. I had the fluid drained off my abdomen the next day - 4 liters, then 6 liters a couple days later, and 5 more a week after that - 41 pounds of fluid total. The fluid was full of cancer cells.

I started chemo (paclitaxol and carboplatin) and had three rounds before my surgery. The CT scan 3 days before my surgery wasn't good. Doc said it looked like a dandelion exploded inside of me and I had small tumors "everywhere." But surgery went well. After my surgery my doctor finally staged me at late 3/early 4. Surgery was followed by 4 more months of chemo, and my CT scan is now showing me to be a NERD (No Evidence of Recurring Disease) and my CA-125 level, which started at 660 (normal is 30) is now in the single digits!

14 months after chemo ended, I've never felt better in my life. Seriously. CA-125 is still in single digits. There IS HOPE. Please feel free to email me if you'd like. I wish I had known someone wih PPC when I was dealing with it, or even had this forum to "vent" on.

Sharon
sharon2468@yahoo.com
Charlotte, NC

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

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

McE
Posts: 3
Joined: Apr 2010

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

onewonwan
Posts: 3
Joined: Aug 2010

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

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

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

onewonwan
Posts: 3
Joined: Aug 2010

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.

Gayle.Rocks
Posts: 1
Joined: Sep 2010

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

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

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

confuzzled
Posts: 21
Joined: Sep 2010

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

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

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

ConfusedPPC
Posts: 3
Joined: Sep 2010

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

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

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

ConfusedPPC
Posts: 3
Joined: Sep 2010

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

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

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

ginacook
Posts: 6
Joined: Oct 2010

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

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

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

ginacook
Posts: 6
Joined: Oct 2010

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

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

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

ginacook
Posts: 6
Joined: Oct 2010

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

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

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

Michelle E
Posts: 1
Joined: Oct 2010

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

Cafewoman53's picture
Cafewoman53
Posts: 732
Joined: Jul 2010

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

starbaby62
Posts: 5
Joined: Oct 2010

I also was just diagnosed with peritoneal cancer. Told it is stage 3 today. They said nothing about ovarian cancer to me. I will ask tomorrow.

starbaby62
Posts: 5
Joined: Oct 2010

I also was just diagnosed with peritoneal cancer. Told it is stage 3 today. They said nothing about ovarian cancer to me. I will ask tomorrow.

jinni28
Posts: 3
Joined: Aug 2010

Hi,
My name is Jinni, I was diagnosed in July 2010 with stage 3c. I did everything right too. So scary. I'm on cisplatin and taxol also. Do you have the port? How often do you get chemo? I was 120 pounds when this started, and now I'm down to 101.... trying to gain weight, but the stomach pains, gas, bloating make it hard to eat. Can't eat dairy, and my anxiety level is off the charts. They gave me ativan, seems to help, but I'm up to over 2 mg throughout the day.... are you in any kind of pain? Not too many people to talk to about this.
Take care,
jinni

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