Primary Peritoneal Cancer

wendymoo

I was recently diagnosed with this type of cancer in October 2002. I have been told that it is a form of ovarian cancer. I can not find much information about this cancer. I am being treated the same way as ovarian cancer is treated. Can anyone tell me more about this cancer? I had a full hysterectomy in October 2002 because my periods were bad, not because I thought I had cancer. Four weeks after my surgery my surgeon came to my house and told my husband and I that the pathologist saw something but was not sure exactly what it was. They sent my pathology to Harvard University. They sent it back and said they thought it was possibly primary peritoneal cancer. My surgeon told me not to be concerned because whatever it was they saw it was minimal and was probably taken care of with the hysterectomy. But, just in case I probably should see an oncologist if I wanted to. He told me not worry about it. He asked me to have a CA-125 test done. I agreed. It came back normal and I also had a cat scan done of the chest,stomach and pelvis. All tests came back normal in November. I felt relieved. I went ahead and saw a surgical oncologist, a friend of our family who took my case to a tumor board. I was shocked when I went to see her because she thought I should have another surgery to take a look and see. Thank god she did. She found more cancer in my abdomen. She could actually see it on my Omentum, which was completely removed and it was also in other areas of my pelvis. Needless to say it was quite a shock to me and to my family. I would like to hear anything, from anyone who is familiar with this diagnosis. I am now undergoing chemotherapy every three weeks, with carboplatin and taxol. I have to have six treatments all together. Let me hear from anyone about this cancer. I have been told that it just recently in the past ten years got it's own name. Let me know what you know. I would really appreciate it. Obviously I am really new to this site so I hope I am doing this right. Thanks so much and I look forward to hearing from you.

phoenix39

Dear Wendymoo,
This is my very first time in a chat room and I am really ignorant on how to do it...but here goes. I have never heard of your cancer, but mine was throughout my abdomen, all of my abdominal lymph glands, a large patch around and in my ovaries and a small patch near my abdominal floor. During the first surgery they took out what they could and I had five months of chemo (gemzar and carbo). After that my CA125 dropped down to 39.5 from 5,108.0. Then it started climbing again. Monday (Feb. 24) was my second surgery. The chemo had shrunk my cancer and loosened it, and supposedly all the rest has been removed. I will have more chemo to pick up the stray cells. My surgeon is talking about submitting me for screening for the cancer gene vaccine. I had never heard of it. Wendymoo, I was absolutely filled with cancer and now I am being told I might be eligible for this vaccine. You have to have completely beaten your cancer to be eligible. Whether or not I qualify, it makes me feel pretty good to know my surgeon thinks I do. Whether I know the name of it or not, you and I have a very treatable cancer. Keep your chin up Wendymoo.

ciswell

Wendymoo,
Not sure I'm doing this right. Did you get my reply this morning? ciswell.

skjogi

Hello Wendymoo my name is skjogi and I have ovarian cancer. I was diagnosed December 2001 as I was fininshing my degree in nursing, I was 29. I have been treated with carbo, taxol and gemzar. I have had two surgeries, the first mainly exploratory and the second which removed most of the primary tumor in my pelvis, a complete hysterectomy, and a bowel resection. I have completed my cycles of chemo and responded very well to therapy but, my ca 125 has climbed a bit and my physician has suggested a study I thought you may find of interest. I am being treated by Gregory Sutton, MD who specializes in gynecologic oncology at St. Vincents hospital in Indianapolis, Indiana. The protocol title is a phase II evaluation of Bevacizumab(rhuMAB VEGF)in the treatment of persistent or recurrent ovarian and primary peritoneal carcinoma. Bevacizumab is an investigational drug. It is an antibody which affects the growth of new blood vessels in the body. It is the hope that it will stop the growth and spread of the tumor itself. I myself do not have much information regarding primary peritoneal cancer but have found my physician and his staff to be extremely knowledgable and are excellent resources. (I should note that I do not live in Indiana, but travel to see him so that he may direct my care that I receive in my home state.) It also sounds like you are in capable hands but I just wanted to pass along some information. This is the first time I have visited this website or written a reply so I hope this reaches you. Chemo isn't fun, but you will get through it and be OK. (I found an injection of Zofran after my chemo really helped my nausea and stopped my vomiting copletely. They frequently offer it in pill form but it is not nearly as effective.) You are in my thoughts.

Oby

Hi, Wendy. I just got on this site this morning, so I am also 'new.'
I read your email and although I didn't have the same diagnosis as yours, I can certainly understand where you're 'coming from,' since my original diagnosis of Intra-Abdominal Papillary Carcinoma was also termed a 'new and rare' form of cancer, which was treated as Stage III ovarian cancer.
I, too, had my omentum removed -- along with my uterus and both ovaries. They also removed my appendix for good measure, since, as my oncologist told me, with my 'new and rare' form of cancer they have found that it can later on move to the appendix.
The omentum? I had no idea what it was, until about 8 months ago, I picked up a medical book in my doctor's office and saw a picture of it. It looks like a wide rope that is attached to the bottom of our rib cage, and hanging from that 'wide rope' are a lot of other pieces of wide rope than hang down and covered our abdomens. Got the picture?
I, too, first went on a series of 6 chemo treatments of carboplactin/taxol the first time around. After a year of feeling MARVELOUS, my cancer came back in January 2001, and I went back on another round of carboplactin/taxol -- until the 2nd treatment when I had an allegic reaction to it. After that, we changed to cisplatin/taxol (cisplatin is in the same 'family' as carboplactin, that's why my oncologist used it).
I completed my 2nd round of chemo the beginning of May and had 3 months of feeling MARVELOUS!
In August my cancer came back again, and because I had begun to develop neuropathy in my hands and feet my oncologist told me that we could not use cisplatin/taxol again, so he gave me several other choices, and I chose Topotecan, which is given on a 3 week cycle.
So far, the Topotecan has been keeping my cancer under control, and I continue to use it.
If you ever want to 'chat,' you can reply to me on this site.
Love you, kiddo!
Oby Thomas
Naperville, IL

tahoemema

Oby said:

Hi, Wendy. I just got on this site this morning, so I am also 'new.'
I read your email and although I didn't have the same diagnosis as yours, I can certainly understand where you're 'coming from,' since my original diagnosis of Intra-Abdominal Papillary Carcinoma was also termed a 'new and rare' form of cancer, which was treated as Stage III ovarian cancer.
I, too, had my omentum removed -- along with my uterus and both ovaries. They also removed my appendix for good measure, since, as my oncologist told me, with my 'new and rare' form of cancer they have found that it can later on move to the appendix.
The omentum? I had no idea what it was, until about 8 months ago, I picked up a medical book in my doctor's office and saw a picture of it. It looks like a wide rope that is attached to the bottom of our rib cage, and hanging from that 'wide rope' are a lot of other pieces of wide rope than hang down and covered our abdomens. Got the picture?
I, too, first went on a series of 6 chemo treatments of carboplactin/taxol the first time around. After a year of feeling MARVELOUS, my cancer came back in January 2001, and I went back on another round of carboplactin/taxol -- until the 2nd treatment when I had an allegic reaction to it. After that, we changed to cisplatin/taxol (cisplatin is in the same 'family' as carboplactin, that's why my oncologist used it).
I completed my 2nd round of chemo the beginning of May and had 3 months of feeling MARVELOUS!
In August my cancer came back again, and because I had begun to develop neuropathy in my hands and feet my oncologist told me that we could not use cisplatin/taxol again, so he gave me several other choices, and I chose Topotecan, which is given on a 3 week cycle.
So far, the Topotecan has been keeping my cancer under control, and I continue to use it.
If you ever want to 'chat,' you can reply to me on this site.
Love you, kiddo!
Oby Thomas
Naperville, IL

I have been looking on the web to find a chat room that will help me with my Overian Cancer and the treatment that is in store for me. I also had cancer in the overies (size of a football) and both my "Omentum's" were removed. There was no cancer in the limph nodes and I am thankful for that. I was introduced to a trian. The trial is called: Phase III Randomized Trian of Induction Chemotheraphy with Gencitabine and Caborplatin followed by Paclitaxel Consolidation Versus Paclitaxel andCarboplatin followed by Paclitaxel. This is for patients with Advanced Primary Epithelial Overian or Primary Peritoneal Cancer. I am really confused. The test results came back showing microscopic cancer cells and I need to do the treatment. You mentioned that your hands and feel were numb, that was one of the side effects of this treatment. Does the feeling come back? I need to find someone to talk to who is going through this or who has gone through this. They say is I have Chemotheraphy alone and it does not work, I can't use the other drugs listed above. Thank you all for listening to me. Margie from Minden Nevada

linn9

Hello everyone, I'm Linn9. Although, I'm not new to this site, this is the first time I've ever written a reply. I'm a daughter of a breast cancer survivor. My mother (who is now 59 yrs old) has been fighting cancer since the age of 41! To make a long story short, she had a recurrence in the same area after the initial tumor, and was treated again with chemo. After the second bout with cancer , her doctors put her on Tamoxifen for about 4yrs. Less than a year later (2001) she started showing symptoms of endometrial cancer. In Feb. (on Valentines Day) she had a total hysterectomy surgery. No chemo given, thank God. Exactly a year later, she was complaining about pain in her abdomen. She was terribly constipated and felt awfully bloated. There were days she couldn't walk around because of the pain. Doctor's diagnosed her with irritable bowel syndrome. Months later and after a CT scan and an exploratory surgery, they found tumors and fluid in her abdomen. She was diagnosed with primary peritoneal cancer. What a blow! If my mother hasn't been through enough already!!! Yes, she's been treated with taxol, topetecan (?spelling), hycamtin, and NOW they're trying DOXIL. All of this in the course of a year and a half. I'm terrified of the effects of the chemo treatments she's received over the years! But I'm praying that she gets through as she did with the others. This reply is not to frighten you or any others, I just want you you to know that I can relate to you, not as a fellow patient, but someone who is dear to me is going through the same situation. I'm learning as she goes along fighting this dis-ease. Most of it has been a mental battle for her. If you can stay positive throughout, half the battle is won. I don't know if I've helped, but I can try to answer particular questions or share with you my personal experiences being exposed to this type of cancer (of course through my mother). God Bless.

divrelev

Dear Wendy
Hi, I just read message and am in a similar situation. I had a mass detected on my annual exam which required a total hysterectomy. My gyn/onc doctor felt it was most likely benign and low and behold it was primary peritoneal cancer. I was put in the GOG study which comprised of 8 rounds of chemo. The first involved Topetecan and Carboplatin and the last four Taxol and Carboplatin. My CA-125 before the surgery was 112 and is now 10. My surgery was in Aug of 2002 and I finished treatment in Feb. 2003. I am now "cancer free". My Doctor is Thomas Rutherford at Yale and is wonderful. He explained that peritoneal is very similar to ovarian but because of the placement of the tumor is called Peritoneal. I know that is simplistic, but it was a good explanation for me. The strange thing for me was that my sister was diagnosed with Ovarian cancer in Feb of 2002. Our treatments overlapped. Talk about strange. We are both doing well and our hair is growing back nicely. I am in a hurry, but was compelled to write when I saw your note. I would love to hear how you are doing and chat somemore. Debra in Conn.

donnaz

divrelev said:

Dear Wendy
Hi, I just read message and am in a similar situation. I had a mass detected on my annual exam which required a total hysterectomy. My gyn/onc doctor felt it was most likely benign and low and behold it was primary peritoneal cancer. I was put in the GOG study which comprised of 8 rounds of chemo. The first involved Topetecan and Carboplatin and the last four Taxol and Carboplatin. My CA-125 before the surgery was 112 and is now 10. My surgery was in Aug of 2002 and I finished treatment in Feb. 2003. I am now "cancer free". My Doctor is Thomas Rutherford at Yale and is wonderful. He explained that peritoneal is very similar to ovarian but because of the placement of the tumor is called Peritoneal. I know that is simplistic, but it was a good explanation for me. The strange thing for me was that my sister was diagnosed with Ovarian cancer in Feb of 2002. Our treatments overlapped. Talk about strange. We are both doing well and our hair is growing back nicely. I am in a hurry, but was compelled to write when I saw your note. I would love to hear how you are doing and chat somemore. Debra in Conn.

My mother was just dignosed with primary peritoneal cancer. We are now trying to choose a dr and place to do the chemo. I am curious about the different types since not everyone does the same kind. Whats the difference between cisplatin and carboplatin? Some people dont do taxol at all?
Debra, my mother went to stamford hospital.. any chance you were there too? We have to decide if we should do it there or go to manhatten.