On 4/2/2008
bobbiesbabygirl wrote:
On 3/12/2008
Too Young wrote:
On 1/13/2008
Perri Lyn wrote:
I feel for everyone on this discussion board and my thoughts and prayers go out to all of you! My mom pased away Oct 21 2007 from PPC. She fought a long hard 21 month battle with this horrible cancer. Stay positive and spend as much time as you can with your mom. I am so glad I did.
Best wishes,
Lyn
Dear Lyn,
I am a 31 year old women with a 18 month old little boy. I was diagnosed with this horrible cancer a few months after my son was born. The doctors have tried all treatments with me and nothing has been able to cure this cancer. I am now on a chemo that will only delay the envitable. I know this is a horrible thing to ask but please understand I need some answers. What were the signs of your mum going downhill ? I am still feeling ok apart from the horrid side effects of chemo but I need to know the signs for when things start to deteriorate. Unfortunately all the doctors will give me is text book answers and just keep saying I will die from this. I am making every day count and am trying to leave behind as many memories as possible for my son so he may have an idea of who his mum was. Sorry to ask such a sad question and I totally understand if you don't answer.
Kathy Seiffert
Dear Kathy
My Mom passed away October 11,2006 with PPC - she went into the hospital on 9/11 and 30 days later she was gone. Her diagnosis came 10 days after she went into the hospital - and before she could have her 2nd treatment of chemo she slipped into a coma and passed away 11 days later. She was in End Stage 4 of the disease. The problem is there is so little information on the disease - her symptoms included a large bump in her stomach, a total loss of appetite and fatigue. She could barely walk, or even lift her head from the bed - and all came out of nowhere. She had no known symptoms prior to entering the hospital. The bigger issue was she saw her doctor almost weekly due to her thyroid removal some 20 years before and her diabetes. None of the doctors took a CA125 test ever!
For your own sake - keep checking your CA125 and also get SEVERAL opinions! I am so sorry to hear of your diagnosis - but if I can help someone else fight through this horrible disease then I know my Mom is smiling! The hardest part is knowing you have a little one who needs you - my daughter is now 10 and cries almost everyday about her "Bubbie" - she misses her so very much and wants another hug from her... keep fighting and reaching for the cure!
Elissa
Dear Kathy,
My heart went out to you when I read of the difficulties you are having. I hope this e-mail will be one to bring you hope and maybe some ideas. I am a 78 years old great-grandmother. My mother had both ovarian cancer and breast cancer. She died 30 years at age 75 after a five year battle with cancer. In spite of three surgeries (one time was both abdominal and breast surgery) chemotherapy and radiation, she managed to live five years. More of that time was "good" time than bad and Mother got a lot of joy out of those years.
My own story is even better. I had been having a CA125 once a year and a pelvic ultrasound once a year for about 15 years as a sceening tools. I alternated them every six months. I had a normal untrasound in July of 2002. I would have had the next CA125 in January of 2003, but in December 2002 with no other symptoms, I noticed that when going up and down stairs I was getting unusually short of breath. X-rays showed that I had a pleural effusion. After 9 days in the hospital during when I had a thoracentesis twice to drain fluid from my chest, numerous CT scans and many blood tests, analysis of the fluid showed that I had adenocarcioma with an unknown primary site. They knew it hadn't started in my chest, although there were cancer cells in the fluid showing it had spread to the pleural cavity.
I had blood drawn for a CA125 once they knew it could be ovarian cancer or PPC because those cancers are forms of adenocarcinoma. That blood was drawn just before I left the hospital, and the results were to be given to me by an oncologist whom I would see in his office in a few days. When I saw him and his associate, they told me my CA125 was normal. Both had looked at the date wrong! My last routine CA125 had been done January 3, 2002; the blood in the hospital was drawn January 3, 2003 before I went home. THEY WERE LOOKING AT THE TEST THAT HAD BEEN DONE THE YEAR BEFORE AND WAS NORMAL AT 12! It was three more months before I knew that though. Never since have I ever accepted anyone's word for anything. I always get a copy of all lab reports and scans and read them myself.
Although there would be nothing curative about it, I was readmitted to the hospital a week later to have a pleuradesis to help my breathing. This was done by thoracic surgeon who went into the pleural cavity and sealed the walls of the pleural cavity so that fluid could not collect there. It restored me almost to normal breathing.
In March I was still seeing the same two oncologists. They thought it might be breast cancer, but didn't understand why they couldn't find it. I did test positive for breast cancer blood markers, so back in January they had me on Armidex which inhibits the production of estrogen that can fuel breast cancer. When some blood tests were being done again in March, I asked that they do a CA125 again. The main oncologist called and told me that there was a surprise in my CA125, it was 1740.
He did do one thing that was very right, I'll give him credit for that. He referred me to the gynecologic oncologist/surgeon who saved my life. Spots of cancer in my abdomen showed up now on a CT scan. She operated and there were at least a dozen tumors scattered around on the peritoneum and on the surface of organs. My ovaries were normal. I had a total hysterectomy and abdominal debulking to remove just about anything one can live without and on which the cancer would like to grow.
I insisted that that tissue removed be examined by pathologists at two major medical centers. The pathology reports were in agreement with each other. I had primary peritoneal carcinoma stage 4, grade 3. Everyone know what stage 4 is, grade 3 meant it was the fastest growing of three possible grades.
Eight days later I embarked upon the rest of the fight for my life. It consisted of 53 weeks of chemotherapy-- a week more than a year. First I had 8 treatments of Paclitaxel and Carboplatin, these were given every three weeks. Next I had seven months of a lower dose of Paclitaxel alone. These treatments were given every week for three weeks in a row, and then I'd have one week to rest before starting the next three weeks of treatment.
Along the way it was suggested that "I could stop if I wanted to and see what would happen", "I could stop to have as much good time as possible", etc. I guess I inherited Mom's strong will to live, and surgery and treatment were better than when she was diagnosed. No way was I going to stop.
This January 2008 I had chest, abdomen and pelvic untrasounds. Everything is stable. My CA125 was 9. Next week I'll have another CA125 done. I get it done every three months and will for the rest of my life. If the cancer comes back, back for surgery and treatment I'll go.
Kathy, did you have a good gynecologic oncologist/surgeon? She both did my surgery and ordered my chemotherapy (Although it was her male associates who seemed to wonder if I'd want to quit treatment from time to time.) She still sees me twice a year now and orders the every three month CA125 tests. Have they ever said anything more could be done for you surgically? I think they don't do the three week on and one week off treatments of paclitaxel everywere, but it certainly worked for me.
Don't let anyone tell you death from this is inevitable. My specialist was quite annoyed when she heard that other doctors had told me that and even given me an estimate about how long I might live.
I hope you are feeling well enough to let those of us at this site know how you are now. If you have any questions that I might be able to answer, please don't hesitate to ask.
With empathy,
Marge