Primary Peritoneal Carcinoma

My mom was diagnosed with ppc.I do have to tell you all that thinking positive is what helps them get through this. Yes let them cry on your shoulder and be there to lend an ear and listen to everything they have to say. No matter how small or how big listen that is what will help. Not judging them or giving them false hope but being there and being supportive.It has been proven that a patient that has a good outlook on their condition and thinks positive lives longer and has a better outcome. They feel better as well. From what I understand there have not been any survivors. The out come is grim. But they are coming up with new treatments all the time. Enjoy the time and pray with them but keep them positive and feeling as good and as positive about their situation as you can. My mom is a fighter and is determined to prove the doctors wrong and make history. This is the attitude that helps her. There is slim information on this issue. Because it is so rare the sites that do have information on this issue all report pretty much the same thing. Looking up just peritoneal cancer usually brings up quite a few links. Also calling a cancer center helps too.

Yes I agree that something needs to be done so that research is funded for this certain area of cancer. I know that you can personally start up a foundation yourself. I would like to help so if you come up with any ideas let me know and we can talk further. My mom was just diagnosed as well and has just had surgery and will be starting her chemotherapy in 5 days. So please let me know. I am very sorry to hear about your loss. Just know that you are in the thoughts and prayers of a lot of people that share this same hardship and that you are not alone.

 

Hi, I am Shanna's mom. I was diagnosed with PPC Nov. 2006.The beginning of stage 4.I had the weight loss,the fatigue and the constipation. I had radical surgery Jan. 2007 they also took out 6" of my colon.I am a fast healer normally but this time it took longer to to heal. Now that I know what is wrong with me I  am noticing the symptoms and can monitor what is going on The only reason I was diagnosed when I was, was because I had to have my gallbladder removed. Otherwise I would not have known. I am going to fight this with everything I've got. I'm even going into an experimental study. If the study doesn't help me, I am hoping it will help somebody else. The doctors gave me 2 years to live, so to me that means I have at least twenty years!!!! All I can say to those who have PPC or those who are on the sidelines. The doctors don't know everything. How you think and how you deal with it is most of the battle..  .    

 

 

 

On 2/12/2007 Kellbell529 wrote:

Wendy,

Thank you for your nice message.  I just feel I need to do more for this disease.  I am so happy though that you are a four year survivor...that is wonderful!!!!  What were your symptoms, etc.?  Where are you from? Are you cancer free as of now?  What did they do for you after you were diagnosed?

I wish that I had the money to start a foundation for PPC...it's a shame that it is just not looked at as much, especially since it is becoming more common.

 My sister and I are going on Monday to see a hematologist/oncologist, because from what research I have seen, I have learned that there are 2 genes in your body that may put you at greater risk for developing PPC or ovarian cancer.  We are meeting with this doctor to get further information and for his input on my mom's death/diagnosis. 

 I am so grateful that there are people like you who can lift spirits when needed......I am still so angry though and feel so cheated.  I had a wonderful relationship with my mom (probably better than most mothers/daughters).....she was my life...and we had so much fun together.  It's hard to accept it at all and it seems like each day is getting harder and not easier.  I am on medication and see a therapist to help and that does...but it's hard to come to the realization that my mom is dead. 

Thank you again! 

Kelly

 

Hi Kelly,

I am so sorry for your sadness.  I still just can't imagine what your life must be like right now without your mom.  It sounds as though you both loved each other very, very much.  I know you are angry as you should be.  Please make sure you get the genetic tests.  I need to get them done as well for the sake of my own children.  Let me know what your outcome is from those tests. 

Stay with the therapist as long as he/she is helping you.  Death of a parent is so hard especially when you are young.  Please try and get up everyday and think of something that your mom did for you that made you happy.  She would want that for you.  You absolutely must go through the grieving process but in the mean time, try to think of the good and happy times that you had with your mom.  She will always be with you in spirit honey and will always be looking out for you in her own way.  I truly believe that.

If you would like to email me, please feel free to do so honey.  My email is wendyleemoo@yahoo.com.  I look at my emails everyday and if you just need to blow off some steam, I will be here for you,

By the way, I live in Maryland right now.  I am 47 years old and I am a flight attendant for Southwest Airlines.  I have two kids, a girl that is 25 and a son that is 23.  They are my life and they have had to go through this with me as well.  It was extremely hard for my son.  He was in constant denial.  Sometimes I think he still is.  However, my daughter and I talk about this subject a lot.  She was my biggest advocate through this whole process.  She, like you, was very upset by the lack of information on this disease.  She and I have always been very close and I believe that this brought us closer together.  I am sure she will tell you that she was also very scared.  I lost my marriage over this as my husband could not cope or deal with a sick wife.  But in the long run, it was a bad marriage anyway and I am so lucky to have a second chance at life.  I have learned that you must live everyday like it is your last....just like Tim McGraw says ha ha.....

Where are you from Kelly?  tell me a little about yourself and your family.  I would love to hear about your mom so feel free to write me and tell me anything you like.  Keep her spirit alive Kelly!!!!

Hope to hear from you soon.  Keep that chin of yours up.......

Wendy

My 84 year old mother was diagnosed with ppc four years ago.  She was stage three when the cancer was found and had surgery.  She has had one summer without chemo.  Otherwise she has been going from one drug therapy to the next until her numbers start going up again.  She is being treated by a gynocological oncologist which I would recommend. 

I just came across a March 16, 2007 article in the New Zealand Herald (nzherald.co.nz) covering new research published in two peer-reviewed journals, The Journal of Leukocyte Biology and Free Radical Biology and Medicine, about the role of vitamin c  in controlling cell activity throughout the body, namely cancer cells behave like normal cells that are deficienct in vitamin c.  They are studying  to see if vitamin c might make a difference in outcomes.

 My mother's latest chemo has stopped working and her numbers have doubled in a month--3950--so I am on my way home.  She'll be drinking all the organic orange juice I can get her to take. 

 From what I've read, having your ovaries removed does not protect a woman from ppc.

Paulabeth

 

On 3/21/2007 Paulabeth wrote:

My 84 year old mother was diagnosed with ppc four years ago.  She was stage three when the cancer was found and had surgery.  She has had one summer without chemo.  Otherwise she has been going from one drug therapy to the next until her numbers start going up again.  She is being treated by a gynocological oncologist which I would recommend. 

I just came across a March 16, 2007 article in the New Zealand Herald (nzherald.co.nz) covering new research published in two peer-reviewed journals, The Journal of Leukocyte Biology and Free Radical Biology and Medicine, about the role of vitamin c  in controlling cell activity throughout the body, namely cancer cells behave like normal cells that are deficienct in vitamin c.  They are studying  to see if vitamin c might make a difference in outcomes.

 My mother's latest chemo has stopped working and her numbers have doubled in a month--3950--so I am on my way home.  She'll be drinking all the organic orange juice I can get her to take. 

 From what I've read, having your ovaries removed does not protect a woman from ppc.

Paulabeth

 

I just want to add that you should consult with your doctor before taking any supplements as they can interfere with drug therapies; for example, blood thinners and vitamin c can be a problem.  Some nutritional supplements interfere with certain chemotherapies.   So, again, check with your doctor. 

Paulabeth

 

On 10/3/2006 Soxfanjan wrote:

I was originally DX 8/1/05 with OC Stage IV. Turned out to be PPC. Had 6 chemo sessions prior to 1/23/06 surgery and 4 more after surgery. In May we saw no signs of cancer so I assumed I was in remission. Had a great summer celebrating my new life, new hair, new attitude, etc., etc. Last month began having that old bloating feeling again, just around the time I had a colonoscopy (clean!). Called my Doc who I absolutely adore, and was advised to get a CA125, pronto. Numbers came in at 161 (damn!) so I'll be having a CT asap to see what's going on. Anyway, I've been really down in the dumps and pretty scared, too. I have been a fighter throughout the ordeal; everyone told me my positive attitude has been one of the the strongest they've ever seen. The problem is, I want to see/read/hear more about survivors of PPC. I never thought that would be so difficult as I didn't realize how rare a cancer this is. I'm somewhat relieved to find other sisters who share my pain and I truly hope to hear more stories of survival.

Just curious as to how you were doing and feeling.  My mom was diagnosed with ppc stage 3c.  The doctors were unable to remove the tumor under her transverse colon, but did do a hysterectomy and he stated her abdominal area was full of cancer cells.  She starts chemo this week with Taxol and Carboplatinum.  We are just hoping for some good time after this chemo course.  Keep up your positive attitude, I am trying to help my mom find hers. 

Hi

I am new to the site.have primary peritoneal cancer.Just finished Chemo and except traces of activity in ascar area PET scan was clean.

I have a question- does anybody knows how long the scars are painful? I can not help being scared when I have similar pain in a similar place after PET scan. Nexttme doctor wants to see me is 3 month. Is it too long to wait?

How was it with you?

I am a 49 year old female who was diagnosed with primary peritoneal carcinoma last September and have had 7 chemos with 1 more to go.  I also had surgery in January to remove my omentum, ovaries and uterus etc.  My CA 125 started at 3400 and is now 18 after the 6th chemo (results not back from the 7th yet).  My CA 125 jumped after my surgery and my oncologist said this was very normal that it normally jumps after surgery.  It went right back down after the next chemo.

Linda W

My Mom was diagnosed 3 weeks ago and had surgery, removal of spleen, she had a historectomy 25+ years ago, and also has a illiostomy.  She is been determined to have PPC and is a stage 4.  What stage was yours classified as?  If you have any insight for me please let me know.  I am 300 miles away from her and I hate not being there all the time.  Luckily my father is taking good care of her.  Any specific questions you would recommend me asking her doctors to gather more information?

 

Thanks and I will keep you and your family in my prayers.

 

Keith G

I was diagnosed with stage 3.  The chemo mix I was given was carboplatin and paclitaxel.  I was also given dexamethazone and ondansetron (for nausea after).  I hope your mom is not feeling any pain and can get chemo started soon.