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My wife is diagnosed with Peritoneal Cancer Stage III - we are scared

Max5
Posts: 7
Joined: Jun 2012

Hi all,

My wife, age 49, was diagnosed with Peritoneal Cancer Stage III three weeks ago. She had bloating and swelled abdomen, went to family physician for checkup. Physician sends her to ER and after CT scan news was revealed to us. We have four girls and younger is 12 years old. Then she went for surgery for remove her ovaries and colostomy. She went into sepsis two days after first surgery due to rupture in stomach. Again two more surgeries and after 21 days in hospital she is back home now. She is on six week of IV antibiotics with home case assistance.
Yesterday I spoke to our family physician and he scared us more revealing biopsies test came up with 5 out 0f 18 lymph nodes affected with microscopic cancer cells. Physician thinks if she will be able to take chemo she may not survive more than a year. I called yesterday MD Anderson cancer center for 2nd opinion and to start her chemo.

We need your support and any advice will be of great help. Please keep our family in your prayers.

stella65
Posts: 150
Joined: Feb 2011

Hi, well there is not much I can say to you except I totally understand your fears and your anguish, I hope you get a better 2nd opinion and your wife can start her chemo, my thoughts are with your family, please let us know how things are going.

Much love, SueX

Max5
Posts: 7
Joined: Jun 2012

Thanks for your reply. I registered online for appointment with MD Anderson in Houston. Hoping I will get a call on Monday and we can visit the regional office.

jt25741
Posts: 23
Joined: Apr 2012

Hello Max5,

Not an easy path you have led. I have a wife of similar age, with Stage IV peritoneal. She was diagnosed back on April '10. She has not had a break from treatment, but she is around, active. We just go one day at a time....hang in there. I would recommend a naturopath in your area to assist in building up immunity and strength to help with the fight.

Best

Jim

Max5
Posts: 7
Joined: Jun 2012

Thanks for your reply back. Its so encouraging to hear survival stories.

PatsieD
Posts: 100
Joined: Jun 2012

Hi Max...
I was really sorry to hear what you've all been through. I was diagnosed in 2011 and was given a pretty gloomy outcome. However, I am still here as are lots of people who were given the difficult news years before me. The one thing I wish I hadn't done was to look at statistics. This disease is different for everyone and the outcome very much depends on how the cancer is affecting each individual's body and how that body responds to treatment. No two cases are alike I suspect. Intravenous chemotherapy goes to the disease throughout the body so any treatment will not just target the abdomen. It's a hard time for you isn't it. This too has been the greatest challenge in my life so far. I was in hospital for 19 days last year and I was at a very low point. When I got out of hospital, I was weak and despondent to say the least. This was followed by 6 rounds of carboplatin which I had a partial response to. I'm not in the best of places but I could never have imagined feeling this good again when I was diagnosed. So there is hope. My thoughts are very much with you. :)

Max5
Posts: 7
Joined: Jun 2012

Hi Patsie,

I am so thankful for your reply and words of encouragement. As you said, I shouldn't have look at the statistics, and finding so many of survivors for years on this discussion board gives hope. I am hoping to get a call from MD Anderson tomorrow and have my wife an appointment. Currently she is very tired from surgeries and slowly learning to get up from bed. All this happened so suddenly that we all are in shock. Right now I just want her come out of post surgery phase and hope there will no further complications. Only thing which is keeping us up and running is faith on God.

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I am similar to Patsy and Jim's wife. I was diagnosed Nov 09 with stage IV PPC. I had mets to the lining of my lungs and struggled with fluid around my lungs which made breathing difficult. However, after alot of chest drains etc I have been free from fluid for 18 months now.

I have been on and off chemo since diagnosis and am able to tolerate it quitre well. I have up and down trends and the down trends take me into hospital. But I am so lucky because the treatment makes me well again and I am able to live my live.

I am in the middle of chemo now and I am tolerating it quite well. (I don't have any other choice really) I still go to work (3 days a week) I am a college teacher and I love my job. My colleagues are so supportive. I used to be a runner and I am able to go to my club and do some running.

This is my life now. It does no use going on goggle - it only scares you. I was told that the average life expectancy for PPC stage IV was 8 - 18 months. Well its been over 2 1/2 years for me and I am still going strong.

The hardest thing is the beginning bit as it is a shock and a new way of living to get used to. But eventually you come to terms with this new life and I am actually quite a happy person as I am always glad to be alive. I try really hard not to dwell on my mortality. It doesn't always work and I do get scared (particulary when I go to the hospital for check ups) but I can push it to the back of my mind and I go home and cuddle my 9 month old grandson. I am 52 and still got a lot more living to do.

I hope you both can come to terms with this and find a way to enjoy life.

Tina xxx

Max5
Posts: 7
Joined: Jun 2012

Hi Tina,

We are so glad to have your reply to our post. When first my wife was diagnosed, we were on this site and reading all of your postings. Your given information and words of hope really help us in this process.

We have a appointment with MD Anderson for Aug 13th and representative told us we will be on waiting list if any earlier cancellations will happen. We are not sure if its a normal process to start chemo after this long period, after debulking surgery. Please let us know if you have any insight to this.

Max and Ruby

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

It does seem a long time to wait until August 13th. However, if your wife is having debulking surgery then you do have to wait a while before you start chemo. I never had surgery - I think my cancer was too tiny and too spread out.

Good luck with everything, Tina xxxxx

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

Hi Max & Ruby

My thoughts with you both. I was diagnosed Stage 4 Dec 2011 and have just finished 7 rounds of chemo (carboplatin and taxol) and had two surgeries - pleurodosis on lung (prior to commencing chemo) and debulking surgery (between rounds 4 and 5). I had a 6 week break between the debulking surgery and continuing with chemo.

Like others here the initial shock and fear particularly after google research was hideous until I found this site and so much positivity and support.

I have started having acupuncture to assist in building up my immune system and have great confidence that this will also be of benefit.

Thankfully my CA125 numbers have reduced down to "normal" level of 21 now and I was given the wonderful news last week that I am in remission. Feeling good and heading to Europe on holiday in 2 weeks (I am an Australian).

Best wishes for the 2nd opinion and, no matter what, stay positive and enjoy every day to the maximum.

JulieL

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

to the group no one wants to join! But here we are! I am 59 and was diagnosed PPC in Aug of 2010 after being symptomatic for 14 months and tons of tests and no one could find it. Anyway I had chemo and surgery and more chemo and then finally was in remission. I tried a vaccine trial that is supposed to have great promise but I unfortunately had a reoccurance after 9 months of remission. I am now taking a chemo. As Tina said you just have to find a way to incorporate your life around the treatment. We took 4 pretty big trips while I was on my first set of chemo. There is no worse feeling in the world than recieving that first diagnosis but as she feels better and gets on with her life you gain a fightig spirit. They are working on lots of new drugs. It is becoming a chronic disease. One that may not be curable but they can keep beating back. There are cases where it has not reoccured. Differences in genetics and health history all make an impact on the course of the disease. I often like to read survival stories on Inspire.com .. Please feel free to come back and share your story and to ask questions when ever you want.
Hugs!
Linda

Nflinchum
Posts: 73
Joined: Jun 2012

Hi max,
I was diagnosed in dec. 2011 with ppc stage I'V I was in perfect health at 58 years old. It was a shock to me also. I had major surgery for 5 1/2 hours. My dr. Took me to the point of death because I was so healthy. He got it all but 10%. I went for a second opinion also for at first I was told it was ovarian then when the full path report came back it was uterine cancer. My dr encouraged me to get a second opinion. He wanted me to go right away because my cancer was so aggressive. I flew to md Anderson only 3 weeks after my surgery. I was diagnosed there wit ppc an she wanted me to get in a clinical trial which was going on in my home town. I tried to get in but since I had two different path reports I couldn't get in. My sister would not give up an got me in another city. I went and did all the paperwork. My dr then had my tissue sent for testin to find out for sure and it came back a high Ppc. Ii started my chemotherapy the following week. I received taxol and carboplatin and was on a three week deal. When I went for my second cycle I received the trial drug avastin I had three cycles and then had a ct scan. I was responding. After six cycles I had another scan and what was left had reduced to half the size. The problem then was the trial only would allow six cycles so I was kicked out of the study and could not receive the trial drug avastin. The dr wanted to do three more cycles which was a total of nine treatments. I just had a scan this past thurs. the dr called me Friday to tell me that the place on my sacrum is stable and she could see no signs of anymore cancer. It came back negative. Great news for me. She is sending me back to my hometown to my dr that did my surgery so he can treat me from here on out. Once I see him I will let you know what he says. Md Anderson is wonderful and well worth your time. Hang in there and good luck.

Nflinchum
Posts: 73
Joined: Jun 2012

Hi max,
I was diagnosed in dec. 2011 with ppc stage I'V I was in perfect health at 58 years old. It was a shock to me also. I had major surgery for 5 1/2 hours. My dr. Took me to the point of death because I was so healthy. He got it all but 10%. I went for a second opinion also for at first I was told it was ovarian then when the full path report came back it was uterine cancer. My dr encouraged me to get a second opinion. He wanted me to go right away because my cancer was so aggressive. I flew to md Anderson only 3 weeks after my surgery. I was diagnosed there wit ppc an she wanted me to get in a clinical trial which was going on in my home town. I tried to get in but since I had two different path reports I couldn't get in. My sister would not give up an got me in another city. I went and did all the paperwork. My dr then had my tissue sent for testin to find out for sure and it came back a high Ppc. Ii started my chemotherapy the following week. I received taxol and carboplatin and was on a three week deal. When I went for my second cycle I received the trial drug avastin I had three cycles and then had a ct scan. I was responding. After six cycles I had another scan and what was left had reduced to half the size. The problem then was the trial only would allow six cycles so I was kicked out of the study and could not receive the trial drug avastin. The dr wanted to do three more cycles which was a total of nine treatments. I just had a scan this past thurs. the dr called me Friday to tell me that the place on my sacrum is stable and she could see no signs of anymore cancer. It came back negative. Great news for me. She is sending me back to my hometown to my dr that did my surgery so he can treat me from here on out. Once I see him I will let you know what he says. Md Anderson is wonderful and well worth your time. Hang in there and good luck.

Nuyawker
Posts: 1
Joined: Aug 2012

My heart goes out to you. My wife was diagnosed with PPC 5 years ago. Her CA125 count was in the 800 range. After debulking surgery and 8 rounds of IV and IP chemo she had 2 perfect years. Then she had a recurrence last year and had 6 rounds of Chemo. She is my inspiration and the love of my life. Next week will be her 70th birthday and next June will be our 50th anniversary.
I just called her doctor. She had a CA125 test done last week. Before the test her CA count was 8, today it is 19. I am so nervous and worried. I don't know how she is going to handle this. I love her so much and I'm so worried.
Hope you have many good years left. It's a tough battle but you can do it.

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I am so pleased to read of your love for your wife. It is a great story that your wife has been free from cancer for 2 years :) Regarding her CA125 - 19 is still a fantastic number. Anything under 35 is considered to be normal. My sister does not have PPC but had the test done because of our family history. Her CA125 was 17 and she doesn't have cancer. So 19 is a great number.

Hope things go well for you both, Tina xxx

dorothymarion's picture
dorothymarion
Posts: 28
Joined: Apr 2012

Hello Max,

Like you and your wife, I was devastated in Feb. 2011 when I learned that I had Stage IV PPC. (No previous symptoms other than a very distended abdomen.)

Those of us who post here have all been diagnosed with PPC, and yet our stories are so very different. I think that the most important thing to do following your initial diagnosis is to find a doctor/oncologist who is experienced in the treatment of this rare form of cancer. Yes, sometimes the prognosis given seems bleak, but so many of us here on this forum are testament to the fact that with the right treatment we can continue on with our lives, albeit with perhaps some adjustments.

My gynecological oncologist opted to put me on chemo first. I had 7 rounds of carboplatin and taxotere (once every three weeks). My CA125 levels dropped down to 69 at which point he surgically removed my ovaries and my omentum. After a brief rest following surgery, I went back on chemo, which was Gemzar. However, when my blood counts dipped dangerously low and my CA125 levels continued to rise, I was put on a course of Avastin (two weeks on, one week off) along with a daily oral chemotherapy. Once again my CA125 levels continued to rise, so my team of doctors decided to put me on a course of Doxil (doxorubicin) once a month. It has not yet shown a decrease in my CA125 levels (they are currently at a staggering 8,000!!) but overall I feel so much better. I can enjoy my food again, and I have energy to do the every day things that make life enjoyable, like gardening and trips to the park with the grandchildren.

Like so many other members here, I am just grateful to be able to climb out of bed each day and say "Good Morning World!".

Wishing you and your wife all the very best.

Dorothy

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