Primary Peritoneal Carcinoma

On 2/18/2008 movingforward wrote:

Dear Tish,

I was sorry to learn of your news-I am new to this sight and my mom was dx in june 07 with PPC stage 3 c.  What was your inital stage?  My mom is 77 and she had a full hysto, omentum removed along with her appendix.  Those organs were covered with the cancer.  She had 8 chemo treatments and is in remission since December 07.  2nd week in Feb. her ca125 is at 7.  If you can give me any information on what your stage was that would be helpful to me.  I hope that you are feeling good today and my prayers are with you.  Take care.  

Dear movingfwd;   I was staged PPC 3c in April of '06.   I am 60.  I think it is good news that your moms CA-125 is in the low range of normal.  Congrats to her!  This cancer can be beaten.  I have met online, people that have been in remission for anywhere from 8-15 yrs.!   Your mom is in my prayers.  I do believe in the power of prayer. 

 I am going through Chemo again.  Carboplaten and Gemzar, instead of Taxol, we didn't want the neuropathy of the feet to get worse.  The tx is going ok.  I had a pretty bad first tx, but I think it was my nerves as much as anything.  Txs are going much better now. I just had the CA-125 a couple of days ago.  I don't know if the number has gone down or not.   

I don't have a port yet.  The nurses are having a hard time finding a good vein to use for the drug infusion.  So, I am scheduled to have a chest port put in March 12.  I am nervous about that.  I have read about infections etc. with these.  I guess it will be better that being stuck anywhere from 2-4 different times to find a good working vein. 

I had a scare last night, Sunday.  Advice n;urse told me to go to lacal ER.  Spent most of the evening and past 1:00am before I was allowed to go home from the local ER room.  I have to give myself Neupogen shots in s series of three.  I had given myself only one on Saturday evening and Sunday midafternoon I was experiencing very bad stomach and abdominal pain with nausea and dry heaving..  This is one of the more serious side affects. 

I was scared. I was worried about a bowel obstruction.  X-ray was clear for obstruction, but showed I am constipated.   I have become pretty constipated with all the drugs and apparently this is part of the problem.  Yuck!  Not fun!

I am feeling much better today.  (Thank You God.)  I was in remission for about 16 months before a ct scan showed it back.  I am staying positive and strong and will fight every minute I am given to stay around and watch my grandchildren and great grandchildren grow up and have their kids.

Oh my goodness, I am sorry for going on and on.  I am putting an end to this novel.  Give your mom my love and blessings and keep some for yourself and your family. 

Tish-a co-warrior in this fight!

On 7/13/2007 Tishthedish wrote:

 

On 7/13/2007 Bear man wrote:

My wife was diagnosed with primary peritoneal cancer on June 1. She has had the debulking surgury where they removed 98% of the tumor and has started her first chemo series. Before she had the chemo she was retaining a lot of fluid. Three litres from her abdomen and twice have had 21/2 litre removed from around her lungs. She has a stage 4 cancer.Since her first chemo the fluid has stoped accumulating. Our Dr. has told us this type of cancer responds well to chemo but seems to always come back. I am interested in any information others might share with us. She seems improved after the first chemo but she is still weak and very tired. Will this get better with more treatments ? We appreciate any feedback we might recieve.    Bearman                                                                                               

Hi Bearman, I am so sorry you are having to ask for this kind of information.   My Prayers and Best Wishes and  Huge HUGS are being sent to your wife, you and family.  I do understand what you all are going through right now!

In April, '06 after exploratory surgery for possible inflammation, I was diagnosed with Stage 3c Primary Peritoneal Cancer.  I had extensive debulking and a hysterectomy of everything except the cervix.   I did not have any fluid buildup.  I went through 6 cycles of chemotherapy, a combo of Carboplaten and Taxol.  It was not as bad as I had heard it could be, thanks to the great anti-nausea drugs.  One of the worst things was the drug reaction I experienced around the 4th treatment, of burning pain at the infusion sites on both arms.  I wish I had been given the option to have a port put in before I started the treatments.  I did develop low white and red blood cells due to the chemo and I had to give myself injections for a few days after each treatment which did help.  But, believe me, it was one of the hardest things to do, to use a needle on myself!  I also have some minor neuropathy in both feet and in right hand.  It was hard to loose all hair, including eyebrows and eyelashes!   I had a couple of great wigs and many great scarves.  However, it was very nice not having to shave legs or underarms! hee   

Your wife will most likely experience fatigue and need to rest a lot.  I found I felt good the day or two after tx, but the third day I started to feel very tired and sometimes sick to my stomach.  The nurses always had good suggestions to make my feel better.  I would also experience some bone, muscle pain, especially when I started doing the injections.  The doctors and nurses are very good about pain management, so make sure your wife lets them know when and if she has any.  One thing to know, pain medication causes constipation big time!  Tell her to drink water, water and more water.  Stool softeners are good to take and I found drinking prune juice every other day helped me.  First and foremost, always check with the doctors and nurses.  They are there for her and you. 

Yes, this cancer can and probably will come back.  I am in "Remission" right now.  However, my CA-125 is "creeping" up.  If it doubles the "normal" number, we will look into my joining a phase 3 clinical trial of Thalidomide versus Tamoxafin.  I see my gyno/oncologist every 2 months.  It is very hard waiting for the results of all the exams and blood tests.  I feel like I have a bomb inside and I don't know if and when it will explode!  I am trying to use my mind to take control of my body and I am always telling my immune system to seek and destroy all cancer cells!  I visualize my "defender" cells shooting ray guns that vaporize "enemy" cells! 

I can't describe the feelings of intense fear, disbelief and anger and the question, what did I do to cause this!  I felt when I was given the diagnosis of the big C!  I always worried about Alzheimers (sp).  I never gave a thought to cancer.  No female family member that I know of, had been diagnosed with any kind of cancer.  I am the kind of person who needs to know all.  However, I have found my "researching" to be a "double-edged" sword!  I have read some horrifying and mind numbing facts and statistics regarding this disease.  I do know that I am not a statistic and I will be "the exception to the rule"!   I have found that I have deep reserves of strength and courage I didn't know was there.  I am very thankful that todays science and technology is helping the scientists and doctors to find new treatments that will hopefully cure or keep us in "Remission" for many years to come.  I am aiming at 25+ years myself!

Wow! I am sorry! I didn't mean to do such a book!   I do hope that something I have said is of some help to you all.  Please let me know how she is doing and I hope both she and I will find many more people to talk to about this relativley rare cancer.

sincerely, Tish