Primary Peritoneal Carcinoma

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                                                                                               

 

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

i can ditto all u have said: i was dx'ed in june '06 w/ ov ca 3c: what do u mean by your ca125 is "creeping" up? so is mine! i take it u haven't received any follow-up medication either? that's the hard part! not having anything to keep the disease at bay! wish u both good health & keep up the fight! harriet

 

On 7/15/2007 Harrietg. wrote:

i can ditto all u have said: i was dx'ed in june '06 w/ ov ca 3c: what do u mean by your ca125 is "creeping" up? so is mine! i take it u haven't received any follow-up medication either? that's the hard part! not having anything to keep the disease at bay! wish u both good health & keep up the fight! harriet

Hi Harriet,  I thought I had messaged you back already, but I guess not.  I think I am experiencing "chemo brain" big time! hee.  The cancer I have, "Primary Peritoneal" which is very similar to Ovarian, I have been told, is a "slow-growing" cancer.  Over the past 6 months my CA-125 has been going up from the 12 it went down to after the chemo to 27 at the last Dr. appt.  The normal high I have been told is 35.  My next appt. is in August.  My doctor said if the number goes 2x the normal high, We will talk about my joining a clinical trial, "Thalidomide Versus Tamoxifen"  being run at my hospital.  Have you ever heard of this trial?  Or know of anyone who does?

I was not given the option to do maintenance txs after the initial 6 cycles of chemo were completed.  It was like ok bye, you are done with treatment, you are in remission, see you in a couple of months for your checkup!  I hope it is not because of the HMO I am with.  Most of the time I feel like all the medical proffessionals care about is the bottom dollar! 

This August, it will be one year since the chemo tx was completed.  I am feeling pretty good, some of the same symptoms as before surgery, such as feeling bloated and feeling full after eating only a small amount.  !#$%*##, I hate this stuff!  (That was my version of swearing! hee).  Well, that's enough of my rambling and ranting!  How are you doing?  What is your CA-125 now?  What does your doc say?  I would like to keep in touch.  I hope to hear from you soon. PS please forgive, if I have told all this before.

Tish, your co-warrior

i am still in the low digits: went down to 5 then 6, 8 so am a bit worried! only finished my chemo end october. dont know anyone taking the thalidomide, someone must be tho, ask around! my cancer is not hormonodependent so i dont know where that leaves me; i dont think i have any symptoms yet altho i could complain about something every day of the week: the worst is a cyst i have on a lymph node that pushes on a nerve in my thigh & gives me terrible cramps! they cant drain it lest they pierce my intestines! on this cheerful note i shall leave you & love you! keep in touch, harriet

 

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

 

Dear Tish, Thank You for responding to my message.My wife has just had her third Chemo and is getting stronger every day. I am taking that as a good sign. I am confused about this ca125 test. People write about number like 35. My wife has a number of 2000, down from 2500. I will ask the Doctor at our next visit or if you can explain this high of a number. Does it need to be divided by 100.Our Dr. was encouraged because her number droped 25%. Again thank you for the info. Bearman

I was dx with primary peritoneal cancer in 2003,I had a "strange pap smear", test after test could not find anything. ca-125 normal, CT Scan-NORMAL, no symptoms at all. I was sent to a wonderful gyn/onco thank goodness she wanted to do surgery. Stage 3 PPC. Had huge surgery and chemo taxol & carboplatin.
Here we are 3 years later, had all the symptoms, bloating, G.I. problems, pain and ca-125 normal, CT Scan-NORMAL. went to doctor to doctor. Had another CT Scan (last one 2 months) tumors, here there and all over the place. Ca-125 only went up to 45.
Had 6 treatments of taxatere & Carbo. sucked. Rechecked CT Scan not in remission yet, I did another 3 treatments. Now I am in remission!! I am doing Maintanence taxol q 3 weeks. And just holding steady at this point.
You do what you have to do. These are the cards I was delt, so now I have to do something with them. This is my life, you make it work.
DAG

 

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                                                                                               

 

Dear Bearman,

I am so sorry to hear about your wife and what she has been through.  I just joined this message board and I am sorry I did not learn about it earlier.  My mom, 76 yrs, was diagnosed with stage 3c primary peritoneal cancer June 1, 2007.  She had surgery immediately and had the following removed(after having 2 liters of ascites removed)...full hysterectomy, it went to her appendix-removed, hit her omentum-removed and then she was left with cancer on top of(peritoneal layer) her colon.  Her CA125 was 4025 before surgery and after surgery 2012.  She has since had 8 treatments of chemo.  This of course leaves you week and constipated and my mom has neuropathy as well in her feet and legs.  Her legs will be weak for a while and it will take a lot of good eating to keep her strong as well as positive thinking.  It is amazing what the mind can do.  My mom is now in remmission and her ca125 is at 8.  She sees her doc every 6 weeks to get her blood test for her ca125 number.  My mom beat this and she was diagnosed at stage 3c.  Although this type of cancer tends to come back to a large degree, your wife can still have many years ahead.  Once you are staged originally at stage 3c your cancer remains at that level.  Lots of fruits and veggies to keep her strong and no processed foods.  I am sure by now that you know that she will go through bouts of anger and memory loss,  but that shall pass.  As you probably already know this is a rare cancer---1 in 70 women get it.  There are too many people getting cancer these days.  Too many unknowns in our food, milk, soda ETC!  Make sure your wife drinks pleanty of water after she is in remission because this will help flush all the medicines out.  Keep a good eye on her and if she wants to do something that made her happy before like going out to dinner, etc. take her out,make life as normal as possible for her.  She has excepted this by now and she probable just wants to feel normal(that is what my mom is going through now).  The websites on this cancer are very helpful so read on.  Knowledge is power and I pray for your wife and you as well.  Take Care...

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.