Concerned Bigsis/Primary Peritoneal Cancer

I found this website today at work and you can image my suprise when I found other people talking about PPC.  My 43 year sister was diagnosed with PPC Stage 3 with a CA125 count of 2129.  She admitted herself to emergency when she could no longer stand the pain and after 6 months of feeling like she was a hypocondriach and a medical doctor who just kept perscribing anti inflams and pain killers for what he told her was riadiating back pain from an old injury.  She began having difficulty with bowel movements in July 06 and he perscribed dietary fibre, her belly started swelling in August, and the pain continued.  By early November she was a mess, and feeling like she was crazy, her anxiety was causing panic attacks and the doctor perscribed Ativan more symptoms more drugs more of the doctor ignoring her symptoms.

She had partial hysterectomy in 2005 but was left with her ovaries.  In May 2006 she had a hemoragic cyst on one of her ovaries which was needle aspirated  and a CA125 was done which registered as 6.

She is now just had her 4th chemo treatment out of the 6 she is scheduled for.  She is unable to tolerate the Taxol so she can only take carboplatin.  She tolerates the chemo as well as can be expected and has her down and out period for for about 2 weeks of 4 and then back she goes for the next.  She has little or no appetite at the best of times and is disapearing before our eyes.  She is so brave mostly for her 10 and 11 year old children. On a more positive note, her CA125 is down below 500 now!

The oncologist is looking at 2 possible causes, genetics and exposure to asbestos.  There is genetic testing going on now and if they can rule that out the will look at the possibility of exposure to asbestos throughout her career for the past 19 years.

I guess I just need to vent for now.  I am trying to be strong, but I find it hard at times, its just her and I left, our Mom died in May 2005.

She has now been experiencing a bowel blockage and pain in her right side.  She is scheduled for a cat scan next week to see what is causing it.  We have fingers crossed that its nothing more that a simple blockage.

Well that's my vent for now, thanks for reading.  I would like to hear from anyone who has been going through the same frustrating and scary late diagnosis. 

Thanks, Bigsis from Canada 

Dear Bagis.

If that was my sister I would read all about what can be done for her in a food department.

I suggest to make a fresh wegetable and fruit juices especially carrot/beet juice once a day. I strongly disagree with chemo but that is your choice and your sisters.

Read books on "what they don't want you to know" and you will see what is going on in this industry.

Cancer centers should be named "Anticancer treatment centres" because they should help people to get rid off cancer permanently not only stir up havock in ones body and hope for the best.

Body created this disease body will destroy it. It take same amount of weeks and months as it took to live with the slight symptoms progressed into large trouble. Think about that.

I fight cancer on y own, because I don't trust conventional treatment.

They create the sense of urgency yes..it is scary but we should start believing in highier power of healing too. Good luck to you and your poor sister.

Help her before it's toolate.

On 3/10/2007 Bigsis wrote:

I found this website today at work and you can image my suprise when I found other people talking about PPC.  My 43 year sister was diagnosed with PPC Stage 3 with a CA125 count of 2129.  She admitted herself to emergency when she could no longer stand the pain and after 6 months of feeling like she was a hypocondriach and a medical doctor who just kept perscribing anti inflams and pain killers for what he told her was riadiating back pain from an old injury.  She began having difficulty with bowel movements in July 06 and he perscribed dietary fibre, her belly started swelling in August, and the pain continued.  By early November she was a mess, and feeling like she was crazy, her anxiety was causing panic attacks and the doctor perscribed Ativan more symptoms more drugs more of the doctor ignoring her symptoms.

She had partial hysterectomy in 2005 but was left with her ovaries.  In May 2006 she had a hemoragic cyst on one of her ovaries which was needle aspirated  and a CA125 was done which registered as 6.

She is now just had her 4th chemo treatment out of the 6 she is scheduled for.  She is unable to tolerate the Taxol so she can only take carboplatin.  She tolerates the chemo as well as can be expected and has her down and out period for for about 2 weeks of 4 and then back she goes for the next.  She has little or no appetite at the best of times and is disapearing before our eyes.  She is so brave mostly for her 10 and 11 year old children. On a more positive note, her CA125 is down below 500 now!

The oncologist is looking at 2 possible causes, genetics and exposure to asbestos.  There is genetic testing going on now and if they can rule that out the will look at the possibility of exposure to asbestos throughout her career for the past 19 years.

I guess I just need to vent for now.  I am trying to be strong, but I find it hard at times, its just her and I left, our Mom died in May 2005.

She has now been experiencing a bowel blockage and pain in her right side.  She is scheduled for a cat scan next week to see what is causing it.  We have fingers crossed that its nothing more that a simple blockage.

Well that's my vent for now, thanks for reading.  I would like to hear from anyone who has been going through the same frustrating and scary late diagnosis. 

Thanks, Bigsis from Canada 

I'm so sorry for what you and your family are going through. How is your sister now? I just found this site today after doing a search for info about a variety of symptoms I have been having. I will be making an appt with my ob/gyn tomorrow since everything I read today about PPC explains what I have been experiencing.

I am 52 yo and had a complete hysterectomy 11 years ago. You wanted to hear from people who have had frustrating times with diagnosis - over the last 2 years, I have been checked for colorectal problems, heart, and allergies because I noticed changes in my body. Everything looked normal outside of some food allergies and elevated triglycerides. I wondered if it was just aging, and maybe depression related because my dad passed away from kidney cancer in 2005.

 I had annual mammogram and pap test this January, but have noticed increased symptoms since then.  I just haven't felt like myself - am very fatigued, have gained weight and suddenly have an abdomen that is like I'm 6 months pregnant. Very unlike me. Now the newest thing is very shortness of breath and wheeziness on exertion. I wonder if I just am out of shape, cause I don't walk everyday like I used to, or if something really is wrong...

Thanks for your replies, Bonitak, I hope that you are seeking medical attention for your symptoms.  Don't give up, and make the doctor listen.  My Sisters General Practice Doctor did miss her symptoms, and just kept going back to a previous back injury to explain her pain, and as for the swelling in her belly he told her it was becuase she was not getting enough exersize because of her pain.  I should explain though that her General Practice Doctor is a Doctor hired by the military as my sister is in the armed forces, and he does not have all the credentials that a Main Stream Medical doctor would have.  The Military Personnel are told they do, but they don't.

My sister Gyno/Oncologist beleives that her PPC is caused by one of 3 situations.  1. Genetics, as it is linked to a type of Breast Cancer, which is present in either side of your family. 2. Exposure to Aspestos.  3. Or she has somehow contracted a very rare form of Cancer.

Her docotor is doing a Gene study to understand how this happened and to help her daughter and for myself and my daughters for the future.

Her cancer count stalled so the doctors have introduced another type of chemo drug go hopefully get it decreasing again.  This drug is very hard on her, and is causing hair loss, depression, anxiety, mouth sores, and a few other nasties.  She has to take this drug along with the carboplatin as well as 2 additional treatments of the new drug. 

She is still quite positive, or at least she is working hard to create this picture for me.  I am just so scared inside, I don't let her see that side of me and I let her take the lead in converstations for now.  She talking about her funeral and wills, trustees, and executors and I let her, but inside I am freaking out.  But I will do whatever she wants, be the shoulder when she needs it and laugh with her about morbid things when she needs it as well. 

Thanks for listening one more time. 

Bigsis,

Thank you for replying to me. I will follow through with my doctor. I'm waiting now for my insurance to approve the CT Scan the dr ordered. Don' cha love it?

My heart breaks for you and your sister and family. It's so hard to understand why this has to be happening to her. It sounds as though you are the most supportive, wonderful person she could have ever wished to have in her life.

Someone just emailed me the complete serenity prayer because of a situation he is facing. I hope I won't offend you or anyone else if I paste it here - most everyone is familiar with it, but it's nice to see a refresher sometimes.(I'm not familiar with the rules of the site, so I hope this doesn't break any.)

With warm thoughts,

BonitaK

The Serenity Prayer

“God grant me the serenity to accept the things I cannot change,

The courage to change the things I can,

And the wisdom to know the difference.

Living one day at a time

Enjoying one moment at a time

Accepting hardship as the pathway to peace

Taking, as Jesus did, this sinful world as it is not as I would have it

Trusting that You, God, will make all things right if I surrender to Your will

So that I may be reasonably happy in this life

And supremely happy with You forever in the next. 

Amen.

Hi again, thanks for the Serenity Prayer, I am fine with it. 

That's awful that you have to wait for your Insurance Co. to approve the costs for your CT Scan.  After they approve the cost how long does it take to get one?  Unless its an emergency here, it takes 3 - 6 months to get one.  My sister got her's the day she went into emergency doubled over in pain.

She has to go through Chemo next Monday and then the Following Monday again, and we are hoping for a remission.  It is usually short lived because the cancer counts start climbing as soon as the treatments stop.

I have been talking to my own doctor, for advise as to what I should expect, and he tells me that she will work hard to stay alive, but there is not a lengthly life expectancy and she will fight the entire time.  My sister is a tough women, I just don't know if I am.

I try and have only good thoughts, but still go back to the awful ones becuase of the unknown.  I think its my way of preparing myself little by little, and if in the meantime she gets better I will have prepared for nothing which would be such a wonderful thing.

She talks about her funeral arrangements, and what she wants done with her Will and estate, and although it freaks me out, its her way to control things and I listen and promise. 

Our father is still living but our mother died 2 years ago, not cancer related, so sometimes I feel like I have to look after him as well.  He is pretty tough as well, but melts down at the thought of losing his baby. 

Thanks for listening.  And I hope the CT scan happens for you soon so that you can rule out this awful desease.  I hope it all works out for you, I really do.

I 

hi! i went thru all this last year, with many of the same symptoms as your sister: i was treated for urinary infections & didnt even know i was sick, no pain at all only frequent urination & big tummy! when i was tested i had a ca of 3200! did the chemo & now i feel fine, with low ca counts: was it ovarian cancer in your sister? where r u in canada? maybe she should be in a clinical trial w/ some new medication? i think they're trying new things at mcgill in montreal. its normal to think of death, believe me, especially when u're feeling rotten from the chemo! i got all my friends to send me jokes on the internet! try & stay positive, both of u, & dont ask her how she feels every day! there were actually times when i could forget i was sick, only to be reminded by well-intentioned questions!

feel free to e-mail if u want!

regards, harriet

Hello Bigsis,

You are probabably doing more for your sister's support than you will ever realize. She's lucky you are willing to let her say what she needs or wants to say, and yet continue to be positive and upbeat about her recovery too. We all need that kind of honest loving relationship! How is everything going?

I just got the letter Friday from my insurance company that denied the ct scan until I have had an ultrasound that indicates a problem. I'll talk to the doctor next week.

take care,

Bonitak 

Thanks again for your kind words.  I am heading for my sisters place for the next 2 Monday's to attend chemo with her.  She lives 3 hours away from me, but its a nice trip, a little me time.  The drugs they give her before the chemo make her pretty woozy and incapable of driving so I get her home have dinner and head home in the evening, its nice to have time with her, even its not the best time.  We laugh and giggle about stupid weird stuff like sisters do.  We hold hands when necessary and cry when we need to as well. 

The nurses and helpers in the cancer clinic are a special breed of people, they are so nuturing and lovely.  It takes very special person to due their jobs.  They give hope and strengh every time you go. They know everyone by name and they give graduation certificates when your round of treatments is over.  They also tell you in a very loving way that they do not want to see you again!

So here's my message to you, I hope that your ultra sound turns up nothing and I hope you do not have to go through any of this.  I hope that your condition is something very minor, and I hope that you don't need the CT scan. Hope this helps. 

Thanks again. 

Hello Bigsis,

I hope your sister's condition is improving. Is she tolerating the chemo pretty well? I have thought about you guys often and kept you in my prayers.

I had an ultrasound Friday and it picked up something on my liver, so am having a ct scan this week. Odds are it is a cyst, so we'll see.

Take care,

BonitaK