Primary Peritoneal Carcinoma

I totally agree with you in that telling patient to "think positive" is not the answer for someone dealing with a terminal illness!! They DO need to talk and vent, and find a forum to deal with this "end of life" stuff that no class or family teaches you on how to deal with. This is HUGE STUFF HERE!! If the family and friends close to the patient can't handle it, then it's not the burden of the patient...it's their burden, and they need to find a healthy outlet to get help in expressing their pain and suffering too (there are wonderful support groups for this, and everyone should join). It's hard for EVERYONE...but please don't put the burden back on the one suffering the disease. They often try to "hide" most things from direct family because they know how painful it is, and that they are not prepared to deal with it. Take this time and deal with it for what it is...something unique and different, and not meant to be handled the way you always handle everyday crisis and things. Also prayer works miracles..pray with the family.

I wrote earlier, my mom has been battling since being diagnosed in early August at the age of 79. Soon after the biopsy the fluid started, they drained a couple of liters with a needle, it came back in a week or so and they inserted a chest tube, she spent the next 10 days in the hospital and was discharged to a rehab factility. In two days she was back in the emergency room with fluid building up again and extreme trouble breathing. They inserted a 2nd chest tube and she spent the next two weeks in the hospital until the fluid stopped. Her first chemo treatment with Cysplatin & Taxol did not work and they put her on a different type of chemo treating her once a week two weeks in a row and with a week off then repeating the cycle. Unfortunately the Cysplatin & Taxol made her hair fall out did not work. The new chemo has allowed her to keep what hair remained. I am happy to report the fluid has not returned for at least 5 weeks, but she has lost alot of strength and has good days and bad days in a rehab facility.

My mother was diagnosed in July 2000 and passed away in February 2003. She responded well to chemo and had a good quality of life until she was rushed to the hospital with weakness in her limbs,etc. Her cancer metastized to her spine(cervical)which I've been told isn't typical. She underwent radiation and died 4 weeks after being admitted to the hospital. It's been over 3 years since she died but it's obviously still very much on my mind -- the obvious reason is that it can be 'inherited' and even though I've been tested and don't have the common BRCA 1 or 2 there are probably many more genetic markers still out there. I had had my ovaries removed (unrelated)right before my mom's diagnosis and it was really a hard hit to find out that there was something 'worse' then ovarian out there. I wish you all well and keep in mind that 'miracles' do happen.

my mom was just diagnosed 3 days ago with this disease. She had surgery and is supposed to start chemo. I am trying to find out if there are any specialists in this area, or should she stick with the doctors recommended at her hospital. We are in the New York area. Good luck and best wishes

My mother has PPC and has just finished chemo after primary debulking (surgery). To the person who posted immediately before me, you live near one of the very finest cancer treatment centers in the world - if it were me I'd go to Sloan Kettering.

 

On 7/22/2006 Poodlecamper wrote:

Hi--I'm 55, and was diagnosed November 2004 with primary peritoneal cancer with metastasis to bowel and ovaries. Had uterus,etc. and omentum removed, and 6 monthes of carboplatin and taxol chemo. I have now been "clear" for 14 monthes, ca125 3, good CT scans. Yes, this is a mean cancer, hard to see on CT scans, so I still worry no matter what.Please, please, don't tell your Moms to "think positive"---let them talk and talk and express everything--pretending to be positive to make other people feel better only adds to the cancer patient's stress level. I'm lucky my husband just let me talk and talk about my fears and anger and whatever I needed to say. Be a good pair of ears and of course, show your love. Carol in CT PS I'm a stage 3B

 

My mom was recently diagnosed with peritoneal cancer.  She had surgery for breast cancer in Sept.06 and routine ct scan after showed 2 small tumors in the peritoneal cavity of left upper quadrant.  The biopsy confirmed peritoneal cancer.  What a whirlwind of emotions, she has felt no symptoms leading up to this diagnosis, so we hope our time with her is long.  Next week we will be meeting with her oncologist and then gynecologic oncologist, it is of comfort to find others who are experiencing this.  I will pray for all.  My mother is already telling us that we need to be srong for her and that she has some legal issues that she needs to take care of. We will take your advice and let her talk about her grief and anger as she feels and not smother her in positivity that we are unsure of.  We will just continue to smother her with all of our love.  thanks for listening.

 

On 11/5/2006 Bellabb wrote:

my mom was just diagnosed 3 days ago with this disease. She had surgery and is supposed to start chemo. I am trying to find out if there are any specialists in this area, or should she stick with the doctors recommended at her hospital. We are in the New York area. Good luck and best wishes

 

Hi!  My mom has just had surgery for the same cancer.  She starts chemo this week.  I tried to get my mom to get a second opinion but she hasn't.  I am also in the NY area and was wondering how things were going for you. 

Hi,

 My mother had problems with fluid in her abdomen.  I believe they were draining 5 L.  After her exploratory surgery she had intraperitoneal chemo (cisplatin) and so far the fluid has not returned.  They put the drug into her abdomen via a port and kept it there for 4 hours (she rolled into different postions every 30 min.) then after 4 hours they begain removing it via gravity drain.  She was draied once after this treatment and since then the fluid has not returned -- its almost been 3 months.  Prior to this she was being drained about every week. 

I'm not sure if this works for everyone and I don't know if her results will last.  But I hope this gives you some more info.

hi, my name is lestine, stine for short, i just read your message, i'm new to this ppc, as of yesterday, was told i had ovarian cancer, now he, {doc} says he "never" told us that! i am so happy to have found this page today, i really need to  talk with someone other than my family and paster, anyway, i found a site that suggest herbal meds. that help "heal" cancer, right now i'm drinking oloe vera gel for the stomach, only been taking for a week, i know ole vera is good for "everything " that bothers you, it is a natural herbal product. now i'm gonna try this "cellular zeolite, found it on line this morning, can't remember the site, just look up the word!

you should get some information from there. good luck, if i find it again, i'll let you know where to look, good luck and god bless. stine

hello, i'm new here, today i just found this site, yesterday i just found ou about this cancer, i was told i had ovarian cancer, now he, {doc} claims he never told us i had ovarian cancer, yet i had my ovaries removed in 2005, somebody told us this. well i'm happy to know i have found someone to talk with, it's really been a problem to deal with, he's now telling me my chances are running out, but i have faith in "god", and that's how i've been making it. i'm gonna try some hebals now, have found some that is suppose to really help, i'm drinkig aloe gel now, which i know is good for everything! god bless and hope your mom feel ok, stine, please write back!