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Primary peritoneal cancer

Karen9182
Posts: 62
Joined: May 2010

Hi I'm just starting out on this board but have been amazed at the support, advice, prayers and love that flows from these threads. I got my dx for ovarian cancer on December 23 2010. My husband, Bob had gone into the ER with numbness on the side of his face. He was diagnosed eith a brain tumor on dec 20 and underwent surgery to remove it on the 22nd. I had been in pain (belly) for a few weeks and we had two ultrasounds scheduled for mid Jan. After my husbands surgery I told my Dr because of our circumstances to just give me some antibiotics and push up the dates for the ultra sound. She said she would give me a CT. She called me on my cell while I was in the ICU with my husband to give me the news.
I have now gone through three cycles of IV taxol/carboplatnim with fantastic results. I had my debunking surgery on April 22nd--one week before my 50th birthday. It was at this time that the diagnosis was changed to primary paritoneal cancer. I meet with my gyn/onc on tues to schedule my IP chemo (taxol/cisplatnin) for 4 treatments. The only thing I hate more than the nulasta shots is not being able to be the mom I want to be to my 5 and 7 year old children. My husband is doing well. They got almost all of his (ependymoma) tumor and he has finished his 5 days a week/six week regimen of radiation and is back at work part time. There were days (especially Fridays after a full week of radiation and me 3 or 4 days out od chemothat were tough, but I think the worse is over. I worry about my children losing one or both of us, but so far it looks like we have a few years at the least--nice long many years if cards are played right. I am so grateful to all the women who make these supportive posts. Blessings on all of you.
Hugs from CA
Karen

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

Your story struck a cord with me. I was diagnosed with PPC Nov 09. It came right out of the blue after an extremely stressful and difficult year. I am secretly convinced it was triggered by the extreme stress I was under.

I am so sorry your husband is ill too, that must be so hard because neither of you were able to be strong for the other one. You have 2 young children so it must've been a really tough time.

Medicine today is fantastic and they are able to work miracles - particularly with chemo. I have just finished my regime and my oncologist said the results of my recent CT scan is very positive - cells have either shrunk or gone. Get my CA125 in June. Was on the same chemo as you Carbo/taxol. Didn't have surgery because my cells were too thinly spread out. I am actually posting on the OVARIAN cancer boards here because PPC is very similar to ovca. There are a lot of ladies there who give such support and some of them have the same cancer as us.

Keep posting so we know how you are doing. What is your CA 125?

Take care Tina xx

Karen9182
Posts: 62
Joined: May 2010

You're my first reply!!!! I'm about 4 weeks post-op and just beginning to feel "normal"-ish. My CA 125 was never high; 58 at it's highest. It is now at 6. My cancer was stage 3c--liver,colon and obviously (I guess) ovaries and the rest of the "girls" were involved. I have been reading posts on the ovca board as well--there sure are a lot of us out there... Thanks again for your support, Tina. You hang in too.

Marcia C
Posts: 1
Joined: Jul 2010

Hi Karen
My cousin is in Brazil and got diagnosed with cancer (colon, ovaries, liver) and now peritoneal, we are all devastated, she is only 35 and her doctor gave her only 6 month to live and 4 month have already passed, her CA keeps going up, 400 + right now, we just don't know what to do to help her, we refuse to believe that she may leave soon, I want to do something for her but don't even know how to begin...I'd love to hear more about you!

Thanks,

Marcia C.

helenek5
Posts: 2
Joined: May 2010

Marcia, I am sorry to hear about your cousin. i was diagnosed with stage 4 peritoneal cancer . It, too, had spread to other organs. Then I underwent chemotherapy. After that I had surgery at Mayo Clinic in Minnesota to remove the cancer after the tumors had been shrunk. Then I had chemo again after the surgery. The first oncologist I consulted was not very encouraging and so I switched to a different doctor who took a much more aggressive approach. I have been cancer free since Feb. 2010.

helenek5
Posts: 2
Joined: May 2010

Karen,
I, too, was diagnosed with stage 4 peritoneal cancer beginning in August, 2008, when I had an elevated CA125. I started chemo in Nov. 2008 and continued until April, 2009, when I also had debulking operation. That was followed by more chemotherapy and my last treatment was Feb.3, 2010. On that date I was declared cancer free. Your story has so many other issues that make it worth the fight - your husband, your two young children. Recovery is possible so please keep the faith and keep on believing that you will be well.

birdwellv
Posts: 13
Joined: Apr 2011

Helen,

How are you doing now. I was diagnosed Oct 2009 with ppc and had 6 rounds of carboplatin,taxol and went into remission for 6 months. Jan 2011 back on chemo,Doxil,have had 3 rounds.Just wondering if you have known anyone who has had ppc for any lengh of time.

caring friend
Posts: 1
Joined: Apr 2011

Hi all---I'm looking for support, information, and inspiration. I do believe I have found it here! My 51 year old, female friend was just told today that she has PPC. Her symptoms came on rather suddenly, although in retrospect, she believes she has just not felt well for a few months now. Normal physical/colonoscopy/pelvic exam/mammography all within the last year.

I am a nurse and have agreed to be a medical advocate for her. She does not want to know stage, prognosis, or statistics. She is very spiritual, care-free, humorous, and loving. Her circle of friends have really lifted her over the past two weeks as she was going through all the diagnostics one must endure to achieve a diagnosis. I am doing all the research and interpretation for her and her job is to heal.

As I have begun my research of this dreadful disease, I am led to believe that there is a very poor prognosis associated with it. It seems what I am seeing is that the treatment trajectory her physician is recommending is right on (taxol/carboplatin) and she is scheduled for her first chemo infusion on Friday. The plan is for debulking surgery after her second chemo treatment, although we haven't heard that from the surgeon himself---the oncologist was interpreting his consult note in her chart.

I am asking for advice and information about what we can do in the alternative/complementary arena to improve her outcome. Nutrition, relaxation, laughter, meditation, hypnosis.....anything. What is anyone else doing to enhance and complement the chemo/surgery regimen? Please throw all your ideas to me. Nothing is too strange for this group!

We have already started prayer circles and she has friends/family in Michigan, Hawaii, North Carolina, Florida, Massachusetts, and Washington chanting every Monday evening at 7pm EST sending her healing energy and light.

Thank you in advance for any advice and support you can give.

A Caring Friend

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

I reposted this from another thread in case you have not seen it yet:

The book (The Anticancer: A New Way of Life) written by David Servan-Schreiber, MD has a comprehensive plan for improving the chances of long-term survival after cancer as well as cancer prevention for any kind of cancer.

The doctor himself had brain cancer that was treated conventionally but the tumor came back. He's been cancer free for about 17 years now after searching the scientific research and creating his own plan to keep himself cancer free.

Check him out on YouTube: http://www.youtube.com/watch?v=XaDt3AJQ98c

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

I can add to LaundryQueen's book recommendation. It is a book very worthwhile buying as it has all sorts of nutrition tips to try. I'm taking most of the herbs recommended and avoiding dairy products and sugars (when I can! I have a sweet tooth). My oncologist also told me that surviving is 75% positive attitude. I would not dwell on the statistics - they are outdated and too negative. I have gallbladder cancer (tumour removed during a liver resection in April 2010) with cancerous nodules on the peritoneum (another set of chemo treatments coming up). I was refused debulking surgery (only one surgeon in Canada does this). But I feel great and didn't have many problems with the first rounds of chemo.
Cheryl

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

You say:
"The only thing I hate more than the nulasta shots is not being able to be the mom I want to be to my 5 and 7 year old children."

That's the one thing that would have made my diagnosis much harder for me, if I would have had children to leave behind. I will keep you in my thoughts very much, and of course your husband too. You say he is doing well. I'm so glad :)

Take good care,

AussieMaddie

Best Friend
Posts: 222
Joined: May 2011

My mom has stageIV PPC. Welcome. This is a great place to come for any questions. I go to the ovarian cancer board because that is where most women's starts from even though they don't necessarily have any in their ovaries. It's just an odd cancer. My mom is on carbo/taxol. She is doing the whole neoadjuvant chemo. Four chemo, than debulking, than more chemo. She is horrified for her surgery.
She had a neulasta shot her first chemo and it put her outta commision. Know it's important but her doc told her unless her white blood cell count is low before the next chemos, she doesn't have to have it. This past chemo she didn't get it and it was a lot smoother. She wasn't doing cartwheels but she didn't not have that intense bone pain.
Just know that you are not alone and it can be done. I was hopeless and than i came on this website and finally got words of support and hope. Take care!

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi all: I have secondary peritoneal cancer (originated from gallbladder cancer apparently). I am still confused about the different chemo regimes given for PPC and secondary peritoenum cancer and ovarian cancer. So, PPC and ovarian cancer with movement to the peritoneum get carbo/taxol but if the cancer originated from the gastro-intestinal system, then the treatment is similar to say colon cancer - in my case, folfoxfiri (oxaliplatin/irenotecan/5FU/Leucovin). I am confused because I don't understand why the treatments should be different if the bed of the tumours is the peritoneum. Are the tumours so different if they originate from somewhere else? Does anyone know? Even my oncologist could not answer my question. I am not eligible for debulking because of the origin in the gallbladder apparently. Cheryl

Best Friend
Posts: 222
Joined: May 2011

I don't know why exactly but they say my mom has ovarian cancer when she goes for chemo. However, she has ppc. The doctor says her ovaries were slightly swollen and even though she didn't have cancer there, the cancer started there somehow. I think this is why it is so rare. I don't quite understand why they wouldn't treat your cancer the same. I guess they have proof it did not start in ur ovary. If it did they use the ovarian chemo for PPC. I will probably never understand it. I don't get why they cannot operate on you. Did they remover ur gallbladder? I mean my mom has it all over and they are still gonna go in and try and get what they can. I just find it hard to believe they can't do the same for you. Have you talked to more than one doctor? Sometimes some docs just do not want to put you through too much but we got the same opinion from our hospital and the University of Penn. Good Luck!

Best Friend
Posts: 222
Joined: May 2011

I don't know why exactly but they say my mom has ovarian cancer when she goes for chemo. However, she has ppc. The doctor says her ovaries were slightly swollen and even though she didn't have cancer there, the cancer started there somehow. I think this is why it is so rare. I don't quite understand why they wouldn't treat your cancer the same. I guess they have proof it did not start in ur ovary. If it did they use the ovarian chemo for PPC. I will probably never understand it. I don't get why they cannot operate on you. Did they remover ur gallbladder? I mean my mom has it all over and they are still gonna go in and try and get what they can. I just find it hard to believe they can't do the same for you. Have you talked to more than one doctor? Sometimes some docs just do not want to put you through too much but we got the same opinion from our hospital and the University of Penn. Good Luck!

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Best Friend: They know it originated in the gallbladder as that is the only place I had a tumour (went through the gallbladder wall into the liver). They cut out the gallbladder, its tumour, and part of the liver but didn't do the few nodules on the peritoneum as they were worried about microscopic nodules. My oncologist and I questioned that but got nowhere. Anyways, here in Canada there is just one surgical team that does the debulking and HIPEC procedure and they are in Calgary, Alberta (I'm in Ontario). Ontario does have an exchange program with them for this surgery. But they are very very fussy about who they operate on. So far, the only successes have been ovarian cancer origin nodules and appendix cancer metatatis to the peritoneum. The two gallbladder cancer patients didn't do well (read "died"). My age would be part of it but mostly I think it was the lack of success on the gallbladder patiens. My oncologist wants to use the folfoxfiri treatment to see if it will reduce the nodules or better yet kill them to see if that would make the difference. In Calgary, the surgery isi 10-17 hours long, 3weeks in the hospital, 3 weeks in recover, then months and months for full recovery. We can't go to the States for treatment unless we pay for it because it is offered in Calgary. So I'll keep you posted on this one.
Cheryl

Best Friend
Posts: 222
Joined: May 2011

It's like you already are ill and yet they try and also drive you crazy. There are too many worries. I understand the surgery being long and expensive. I just don't know why everyplace doesn't offer the same treatments. Here in Pennsylvania they don't offer HIPEC. I am sure the cancer treatment centers of america may have it but even with insurance it adds up. Is it true that in Canada there is free healthcare? I always wondered about that! I guess that would explain why there is only one spot to get this type of surgery. It still doesn't see right. It should be your choice whether to have surgery.
I am not looking forward to my mom's surgery. We won't know about it until atleast another month. She has chemo again next week. It changes the way you feel about life. You realize the good and you REALLY realize the bad. Anyways, my friend Ed that i work with is in Canada this week. He met a woman online and they are gonna get married soon. They just visit eachother often. He loves it there so he is gonna move to her. I will have to ask where he will live.
Good Luck to you. Keep me posted!

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: Yes, in general health care is free in Canada to a point. In Ontario, what is called OHIP, is free because it is paid by one's employer and when you are over 65, it is free regardless. In other provinces there is a monthly charge for health care (in Alberta, for example, about $2500/year for a couple over 65). Most good companies, like my university, have excellent private plans too for things like dentist, glasses, orthotics, physio, private rooms, some drugs not covered by the provincial health plans (mine goes until I die). That is free for me not for the employer. However, some things are just not covered like my oxaliplatin treatments so I pay for that and get it back from my taxes. Health care is Canada is mostly administered provincially. So, there are lots of plusses (you won't die if you don't have any money) but some negatives (long waits for some things like hip replacements but not for cancer care). Most of the hot shot surgeons go to the States unfortunately as they can make more money. The HIPEC debulking surgery is rare here. The 2 surgeons in Calgary were actually trained here in London, ON but left for better monies I guess (Calgary is our oil town). Our problem is a low population (only 35 million) and a big country! In some circumstances, one can get rare surgeries done in the States or elsewhere and paid for by one's province but you have to prove it is not done anywhere else in Canada. Hope this helps!

Cheryl

abrub's picture
abrub
Posts: 1591
Joined: Mar 2010

Cheryl,
Ovarian/gyn tumors respond to different chemo than do colorectal tumors. Tumors can spread anywhere - you can have a met from a colorectal tumor in your lung. It would be treated as colorectal cancer, not lung cancer. Similarly, tumors in the peritoneum are treated based on their cell type of origin. Hence some people receive chemo for ovarian cancer, and you and I received chemo for colo-rectal/GI cancers.

Best,
Alice

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Thanks, Alice. That is the clearest that anyone has told me, even my oncologist!!!!! Now to find out which gets cured better. Here, ovarian type peritoneum cancer is viewed as chronic (I don't know about primary) but colorectal/GI is viewed as terminal, a word I don't accept.
Cheryl

abrub's picture
abrub
Posts: 1591
Joined: Mar 2010

not terminal. To quote my onc "this cancer won't kill you." However, we may have to treat it again.

Glad I could clarify why the different treatments for cancers in the same locations. It gets complex explaining that you have colon cancer in your lungs or breast cancer in your eye (a friend's breast cancer metastasized to her eye.) Regardless, the treatment is for the type of cancer, not the location.

And I start "scanxiety" - my first scan in 14 months will be on July 7.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

...and that is how I'm going to view it too!!!!!! Thanks for that. I have "scanxiety" too - my first MRi since starting on the oxaliplatin and irenotecan is July 6 (10 pm). It will take weeks to hear the results maybe. Good luck to you, good luck to me!
Cheryl

Jewlie
Posts: 9
Joined: Jun 2011

We got the news June 10th and she was admitted to the hospital June 14. She has had her debulking surgery June 21st!!!! This has all happened so fast that my head is spinning. Next week she will start her first round of chemo! Her surgeon has informed her that if chemo doesn't work then there is nothing else they can do for her. I'm finding this hard to believe!!!!! My parents were here visiting us when she became very ill! She had lapband surgery 3 years ago and we all thought she was having complications from that. After being admitted to the hospital in my town for the second time she had fluids removed from her abdomen and test came back possitive for cancer. After her debulking surgery her surgeon informed us it was PPC. I have never heard of this type of cancer!
At this time I'm cleaning my room and getting it ready for her! When they visit us they stay in their camper that is set up in my back yard. My mom just retired a year ago in March and was so excited to start enjoying life without work!
I don't know what to tell her except to keep possitive!!!!!!! I think that is what will help her the most right now!!!!!

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: Wow! How wonderful she got through everything so fast!!!! Here in Canada there is only one place that does that surgery (In Calgary) but you are in hospital for 3 weeks, convalescing at home for 3 weeks, and then more convalescing for months and months! Your mom must be a wonderfully healthy strong woman - good for her! I have secondary PPC (from gallbladder) so can't comment on the prognosis but as far as I know from ladies on the ovarian site (see Tina Brown's posts), PPC is viewed as chronic with periodic removal of the fluid (ascites) and periodic chemotherapy. See my first discussion under Rare and Other Cancers to see that we may be starting a separate discussion board for this type of cancer.
With her recovery so quickly, it will be easier to stay positive! My thoughts go out to you and your mom.
Cheryl

abrub's picture
abrub
Posts: 1591
Joined: Mar 2010

Jewlie,
Please be sure that your mother sees an expert in PPC. There are options including intra-peritoneal chemo (IP chemo) and HIPEC - Heated IP Chemo - that may be available to her. Her chemo will be dependent on the origin of the cancer.

Mine was not Primary Peritoneal Cancer; mine was metastases from the Appendix, but I had IP chemo. I go to Memorial Sloan Kettering Cancer Center in NYC.

Most important is that she sees an expert.

Wishing you the best,
Alice

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Hi,

have posted earlier to this thread and now browsing through similar threads that occur around the forums in order to point out, for anyone not aware of it yet, that a new board, specifically for those of us with peritoneal cancer has started up. Will be good to share our mutual experiences in the same place.

Love to all,

AussieMaddie

xxxooo

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