Please tell us your story

Tina Brown

Sorry I've been away just lately but I am so pleased with the interest this board has had. So I would like to start a new thread where we can tell our stories and that way we can get to know each other.

Right, where to start.............

November 2009 I was struggling to breathe and ended up in hospital hoping for some sort of chest drain and a diagnosis of pnuenomia or something. BUT no, when they drained the fluid they found cancer cells. The doctors were puzzled because they didn't know where the primary cancer was. I had a CT scan and had to wait for about 2 weeks for the results. They eventually diagnosed PPC stage 4. They suspected Ovarian Cancer but my ovaries were healthy. All of my internal organs are healthy. They are unable to offer me surgery as my cancer resembles tiny seeds and are spread out all over the lining of my abdomen. I had a small amount of free fluid (ascites) in my abdomen and this passed over my diaphram and into the pleural cavity. The fluid there is called "plueral effusion" Because the fluid was classed as malignant I was diagnosed at stage 4.

November - December I underwent 3 chest drains just to help me breathe. My CA125 - 1119 and I started on carboplatin/taxol.

January 2010 needed another chest drain. The cancer cells weep fluid and block up the drainage points in the plueral spaces. Eventually the chemo will begins to work and will kill off the cells and unblocks the drainage point but it takes a while so I had to have another drain as I was struggling to breathe.

March 2010 chemo ends and my CA125 is down to 34 just under the normal range. This is great and I settle down and allow my body to repair itself and wait for my hair to grow back.

October 2010 I go for a check up and get results from a recent CT scan and CA125. My CT scan is good and shows stable disease however my numbers have jumped up to 1288. My oncologist responded to this (looking back it was like a knee jerk reaction) by putting me straight onto Doxil.

November 2010 I am admitted into hospital with a fever. They are worried I may have neutropenia. I am isolated andend up being quite ill with an infection of unknown origin. However whilst I am in there they discover I have fluid around my left lung again. So I have the pleasure of yet another chest drain. Because I have this fluid my doctor decides to take me off doxil (as it clearly wasn't working) and I went back on Carbo/taxol.

December 2010 Need to come to terms with losing my hair again. I am actually more upset this time around.

March 2011 After 6 rounds of chemo my CA125 is 95. My CT scan is shows a reduction in a soft tissue mass. All other organs clear including plueral cavity. Doctor is very pleased with results. This is good news for me.

NOW June 2011 Latest CA125 is only 11 points up at 116. Doctor smiles as he gives me my results and doesn't want to see me again until September.

THE PLAN FOR ME
The doctors have decided to leave me alone. They will monitor my CA125 but will only put me back on chemo if I feel unwell. There is nothing to be gained from going on chemo just because the numbers have gone up. SO I get to keep my 2cm hair and hopefully I can stay chemo free for longer than last year.

Tina

VickiReed

Here's my story
Last July 2010, I couldn't figure out why I was gaining weight and losing my energy. I went to the emergency room and they started running tests on a Tuesday. It wasn't til a week and a half later that they told me the diagnosis. Stage 4 high grade serous PPC. My CA-125 was 2204. I had never heard of it and wish to this day that I never would have.
I was full of ascites and had to have my abdomen(4x)and lungs(3x) drained until the chemo got rid of it. I wasn't one of lucky people as far as Taxol is concerned. I was hyper sensitive to it and it nearly killed me. One drop made my blood pressure drop and took all the oxygen out of my blood. It felt like a firestorm rushing through my veins and within a short period of time I passed out. (At this time I was sure I was dying!!)Next, they tried Taxotere and told me no one ever had a reaction to both of the drugs, well til me. Even after being premedicated I started having a reaction. My gyn oncologist decided to admit me to the hospital and desensitize me with 24 hours of steriods and then give Taxol at a reduced rate. All 6 rounds required a two night stay in the hospital. I had 3 rounds of Taxol/Carboplatin and a debulking surgery and another 3 rounds of Taxol/Carboplatin. I found out that during my first checkup I was platinum resistant. My CA-125 jumped from 7 up to 46. The scans showed numerous tumors, one on my diapraghm, some on my abdominal wall, one at my lung and also in my lymph nodes. I am currently in a clinical trial at MD Anderson in Houston, TX. The trial includes Doxil, Avastin and Torisel. I feel pretty good but not without plenty of side effects. Today I went and found out my CT scan results after the complete 2nd cycle. I take the first round of cycle 3 on tomorrow. A round consists of
Day 1-- Doxil, Avastin and Torisel
Day 8---Torisel
Day 15--Torisel
The doctor told me today that the tumors are shrinking and my CA-125 went from 115 down to 44. The side effects are scary, my cholesterol jumped over 100 points already and there is damage to my liver and my blood pressure is up (and now on meds). I am going to take two more cycles before the next scan and then decide what my course of action will be. I am having issues with hand-foot tenderness, a sore throat, some mouth sores, a rash from my bra and some headaches,and constantly staying on top of the constipation issue. I have to watch what I eat expecially carbonated drinks and acidy foods, I do the icing of hands and feet for the Doxil and try to do what they tell me. Thankfully I have always been a water drinker because this stuff dries you out so I drink, drink, drink!! I love my life and am not ready to leave it!! I am very blessed with a great husband and family and wonderful friends!! Also I went off work on short term disability for the Taxol/Carboplatin treatments and was able to go back (with neuropathy issues) 6 weeks after I finished treatment. I love my job but when I started the Doxil cocktail I went back off on short term again. I don't know how some of you are able to continue to work. I commend you for that! Just taking care of the house and go to appointments takes most of my time and energy. Anyone have any ideas on the next course of treatment???
XXXX
Vicki

birdwellv

VickiReed said:

Here's my story
Last July 2010, I couldn't figure out why I was gaining weight and losing my energy. I went to the emergency room and they started running tests on a Tuesday. It wasn't til a week and a half later that they told me the diagnosis. Stage 4 high grade serous PPC. My CA-125 was 2204. I had never heard of it and wish to this day that I never would have.
I was full of ascites and had to have my abdomen(4x)and lungs(3x) drained until the chemo got rid of it. I wasn't one of lucky people as far as Taxol is concerned. I was hyper sensitive to it and it nearly killed me. One drop made my blood pressure drop and took all the oxygen out of my blood. It felt like a firestorm rushing through my veins and within a short period of time I passed out. (At this time I was sure I was dying!!)Next, they tried Taxotere and told me no one ever had a reaction to both of the drugs, well til me. Even after being premedicated I started having a reaction. My gyn oncologist decided to admit me to the hospital and desensitize me with 24 hours of steriods and then give Taxol at a reduced rate. All 6 rounds required a two night stay in the hospital. I had 3 rounds of Taxol/Carboplatin and a debulking surgery and another 3 rounds of Taxol/Carboplatin. I found out that during my first checkup I was platinum resistant. My CA-125 jumped from 7 up to 46. The scans showed numerous tumors, one on my diapraghm, some on my abdominal wall, one at my lung and also in my lymph nodes. I am currently in a clinical trial at MD Anderson in Houston, TX. The trial includes Doxil, Avastin and Torisel. I feel pretty good but not without plenty of side effects. Today I went and found out my CT scan results after the complete 2nd cycle. I take the first round of cycle 3 on tomorrow. A round consists of
Day 1-- Doxil, Avastin and Torisel
Day 8---Torisel
Day 15--Torisel
The doctor told me today that the tumors are shrinking and my CA-125 went from 115 down to 44. The side effects are scary, my cholesterol jumped over 100 points already and there is damage to my liver and my blood pressure is up (and now on meds). I am going to take two more cycles before the next scan and then decide what my course of action will be. I am having issues with hand-foot tenderness, a sore throat, some mouth sores, a rash from my bra and some headaches,and constantly staying on top of the constipation issue. I have to watch what I eat expecially carbonated drinks and acidy foods, I do the icing of hands and feet for the Doxil and try to do what they tell me. Thankfully I have always been a water drinker because this stuff dries you out so I drink, drink, drink!! I love my life and am not ready to leave it!! I am very blessed with a great husband and family and wonderful friends!! Also I went off work on short term disability for the Taxol/Carboplatin treatments and was able to go back (with neuropathy issues) 6 weeks after I finished treatment. I love my job but when I started the Doxil cocktail I went back off on short term again. I don't know how some of you are able to continue to work. I commend you for that! Just taking care of the house and go to appointments takes most of my time and energy. Anyone have any ideas on the next course of treatment???
XXXX
Vicki

doxil
I was diagnosed in Oct 2009 with PPC and had surgery to remove ovaries, tumors,part of the omentum and 12 inches of intestine and some lymph nodes. I had 6 rounds of carbo/taxol and CA 125 went down to 15. After a 6 month remission numbers had climbed and was put on doxil. Have had 6 rounds of doxil and numbers down to 22 and holding steady. Doctor says I may get a vacation from chemo after round 7 in July.

Vicki, I am also a Vicki, but the red rash I had from doxil I was able to control by using vaseline on it. I also have the hand-foot tenderness. This year I did work while taking chemo treatments but it was hard.

Don't know what the next course of treatment would be for me. My doctor did give me a list of chemos that we could go through.

Vicki

wanttogetwellsoon

VickiReed said:

Here's my story
Last July 2010, I couldn't figure out why I was gaining weight and losing my energy. I went to the emergency room and they started running tests on a Tuesday. It wasn't til a week and a half later that they told me the diagnosis. Stage 4 high grade serous PPC. My CA-125 was 2204. I had never heard of it and wish to this day that I never would have.
I was full of ascites and had to have my abdomen(4x)and lungs(3x) drained until the chemo got rid of it. I wasn't one of lucky people as far as Taxol is concerned. I was hyper sensitive to it and it nearly killed me. One drop made my blood pressure drop and took all the oxygen out of my blood. It felt like a firestorm rushing through my veins and within a short period of time I passed out. (At this time I was sure I was dying!!)Next, they tried Taxotere and told me no one ever had a reaction to both of the drugs, well til me. Even after being premedicated I started having a reaction. My gyn oncologist decided to admit me to the hospital and desensitize me with 24 hours of steriods and then give Taxol at a reduced rate. All 6 rounds required a two night stay in the hospital. I had 3 rounds of Taxol/Carboplatin and a debulking surgery and another 3 rounds of Taxol/Carboplatin. I found out that during my first checkup I was platinum resistant. My CA-125 jumped from 7 up to 46. The scans showed numerous tumors, one on my diapraghm, some on my abdominal wall, one at my lung and also in my lymph nodes. I am currently in a clinical trial at MD Anderson in Houston, TX. The trial includes Doxil, Avastin and Torisel. I feel pretty good but not without plenty of side effects. Today I went and found out my CT scan results after the complete 2nd cycle. I take the first round of cycle 3 on tomorrow. A round consists of
Day 1-- Doxil, Avastin and Torisel
Day 8---Torisel
Day 15--Torisel
The doctor told me today that the tumors are shrinking and my CA-125 went from 115 down to 44. The side effects are scary, my cholesterol jumped over 100 points already and there is damage to my liver and my blood pressure is up (and now on meds). I am going to take two more cycles before the next scan and then decide what my course of action will be. I am having issues with hand-foot tenderness, a sore throat, some mouth sores, a rash from my bra and some headaches,and constantly staying on top of the constipation issue. I have to watch what I eat expecially carbonated drinks and acidy foods, I do the icing of hands and feet for the Doxil and try to do what they tell me. Thankfully I have always been a water drinker because this stuff dries you out so I drink, drink, drink!! I love my life and am not ready to leave it!! I am very blessed with a great husband and family and wonderful friends!! Also I went off work on short term disability for the Taxol/Carboplatin treatments and was able to go back (with neuropathy issues) 6 weeks after I finished treatment. I love my job but when I started the Doxil cocktail I went back off on short term again. I don't know how some of you are able to continue to work. I commend you for that! Just taking care of the house and go to appointments takes most of my time and energy. Anyone have any ideas on the next course of treatment???
XXXX
Vicki

vicky ..
I'm sorry that I have no idea what course of treatment you could have next. I'm a virtual beginner where these drugs are concerned although I've just got through my second dose of carboplatin on the first cycle. Reading your history really moved me. You have done so well and have had the courage to see it all through. I can understand about the work thing. I had to give up not because of the cancer but because of the damage it has done to my abdomen. All of my organs, well, the ones I have left, are stuck to adhesions and also stuck together. The cells are throughout the abdomen and on the adhesions themselves too. I feel like I have a block of wood in the cavity which is moving upwards. I feel positive though and am hoping my ascites stays away during and after the treatment. I think that ascites whatever cavity it is in is so debilitating.

I'm hoping all of the very best to you and keeping every toe and finger crossed.

Love

Sue xx

Mum2bellaandwilliam

wanttogetwellsoon said:

vicky ..
I'm sorry that I have no idea what course of treatment you could have next. I'm a virtual beginner where these drugs are concerned although I've just got through my second dose of carboplatin on the first cycle. Reading your history really moved me. You have done so well and have had the courage to see it all through. I can understand about the work thing. I had to give up not because of the cancer but because of the damage it has done to my abdomen. All of my organs, well, the ones I have left, are stuck to adhesions and also stuck together. The cells are throughout the abdomen and on the adhesions themselves too. I feel like I have a block of wood in the cavity which is moving upwards. I feel positive though and am hoping my ascites stays away during and after the treatment. I think that ascites whatever cavity it is in is so debilitating.

I'm hoping all of the very best to you and keeping every toe and finger crossed.

Love

Sue xx

My mums story so far.
It all began May 2010, mum popped over to my house, she looked well , we were sat outside and I caught a side profile of her, she looked about 8 months pregnant, I sat there looking and thinking I cannot see any weight gain anywhere else , I was about to say something ,she beat me to it.I insisted we called a doctor immediately , I had no idea it was gong to be as serious as it turned out to be.
Mum had only had symptons for a couple of weeks and had been taking renne.
Doctors appointment that evening , he booked her straight in for a CT csan,and CA 125 about a week later she was given the diagnosis of ovarian cancer.Our world fell to pieces from that day onwards.
First line chemo was the gold standard carbo , taxol , she started with a CA125 in the 3000s She had to have her tummy drained 3-4 times before the chemo kicked in.
She had 3 infusions of the chemo before her surgery, her surgery was in September, it all went really well , the surgeon said he had removed all visible trace, we were so happy! We went to see her surgeon afterward and were then given the diagnosis of PPC, her ovaries were healthy. Mum then followed on with the last 3 chemos, we were all thinking great if there are any stray cells the chemo will mop them up! How wrong we were
After the last treatment about a month later she had a ct scan, the cancer had grown again.I was shocked but it didn't hit me as hard as the original diagnosis.I was hoping for her to have a break from all this ,I knew the likelyhood was it would back , I just didn't expect it to be as quick as it was.

So Feb mum moved on to Doxil, boy did it hit her badly, she was so poorly , couldn't even get dressed without stopping to rest, bless her , she said if this is my life I might as well give up, those words cut to the bone, but I could see her point. Mum then developed an infection and ended up in hospital they gave her steroids and she was well again , Yay happy days .She was still having to be drained every 3-4 weeks, but as least it wasn't weekly as it was before.She had 3 lots of Doxil.

3 weeks ago mum goes for a drain , they perforate her bowel, we were all petrified , she had peritonitis , she spent a week in hospital, nil by mouth on morphine and generally feeling awful, they don't want to operate it would be 'very challenging' given what else is going on in there. So they treat her heavily with IV antibiotics, she is allowed home a week later

Whle she was in hospital I notice her tummy is bloated , it had only been a week since the last drain , I knew the chemo was failing.
The day after mum came home I go and see her , she breaks the news I already kinda new, heartbroken , its one thing to think it another to hear it from the horses mouth.Gutted, I hoped we would get a few more rounds with the doxil.

Monday we have an appointment with her onc, because she is still not 100% she is still throwing up despite anti sickness , I have a feeling they won't give anymore treatment at the moment, but we will see, praying they will.

Sorry for the long post, there was loads more I could have added, but it would have ended being a book.

I just want to say anyone who is fighting this disease , you are truly amazing people , the strength and courage you need to keep on top of all this is huge. This is not a sprint it is a marathon.

For all the carers, we to are truly amazing, all the emotions that are attached to this are huge the fear, the upset , the frustration, the anger, the guilt, but also the laughter,the joy of spending time with our loved one,which before all this were taken for granted.

Best Friend

Hi
Sorry, but i am not in the mood anymore to type all about my mom's PPC. Maybe it is just the mood I am in. I don't know. She had first catscan yesterday after 3 chemos. They will decide if she's ready for surgery. I am at that point now where I have to go back to work and I feel helpless. I can't be there to keep her company anymore. This is sad. I have noe control of this anymore. I can't even be there when the doc tells her how the chemo worked and what the next route is.
I am just glad that this board was made because my mom does not have ovarian cancer. She has PPC. Alike, yet so very different.
God Bless everyone who is going through this cancer. Also, bless ur loved ones. It can be done, but sometimes you may wonder if it's worth it if you have to live like this. I guess it is a decision u make.

AussieMaddie

My story
Hi,

September 2010, after many years of binge eating, and having lost 42kg on a weight-loss drug (Reductil - now banned in Australia), the drug stopped working and, as usual, I put 32kg back on immediately. Something was different when I got that far. My stomach wasn't going down between binges and it had changed shape. Saw my GP who instantly saw my distended stomach and with some annoyance put it down to bingeing (why not?). I had a cough. "Chest is clear, an allergy cough".

The following week, still unhappy about the tightness in my stomach, I saw a different doctor, who advised me to have an ultrasound. That was Sunday. On the Tuesday, I went for the ultrasound. "Sit up!" "Why?" "Because you're carrying about 10kg of fluid in your abdomen and your lungs can't properly expand" (thus, the cough) "See your doctor immediately". Doctor not in. "Go to emergency". It was just across the road. Was admitted soon after.

They didn't know what was wrong. CT scans showed nothing except an enlarged lymph node alongside my liver, some scarring ("sclerosis") of the liver which he put down to "fatty liver" having been left untreated ("often a genetic thing, not necessarily to do with your overeating"), thickening of the omentum and of course fluid - lots of it. It took ages to get a sample of the fluid from my abdomen with the aid of an ultrasound. Even then, it took another week to get in results. I hadn't considered it beforehand, but by the time the doctor told me, I guessed. Cancer with primary of unkown origin (since the scans didn't show up anything) with mets to the peritoneum. I took it calmly. I know that's not a usual reaction, but I've lived a life filled with mental disturbance, so I feel tired by this time.

Was started on carbo/taxol which, again unusual, has caused me almost no side-effects. Just a few at the beginning, and hair loss (which didn't worry me). It's growing back. As well, my CA125 has been in free fall - from 1300+ down to 12 at last count. Only I'm starting now to feel more tired, and more depressed than is usual for me. Oncologist has decided it's time for me to have a PET scan (I can't have an MRI because I have a pacemaker, but I have yet to learn why one and not the other because I believe that the PET scan is more involved than an MRI - will ask). PET scan due in just over a week. Only available at two hospitals. Will have to travel to have it done. But hopefully it will show what's going on. Till then, I'm in the dark, but so much better off than others here because I really am keeping so well.

My biggest concern is not dying but losing the ability to live alone. Above all, I need space to myself. That was the hardest part about being an inpatient. If, as the oncologist suggests, surgery is an option further down the line, I'm scared that, if only because of my very large size, I will not recover so easily as to be able to stay alone in my own home.

I shouldn't complain too much about that however when I think of the pain that others here have endured and of which, till now at least, I've been mercifully free.

AussieMaddie

westie66

AussieMaddie said:

My story
Hi,

September 2010, after many years of binge eating, and having lost 42kg on a weight-loss drug (Reductil - now banned in Australia), the drug stopped working and, as usual, I put 32kg back on immediately. Something was different when I got that far. My stomach wasn't going down between binges and it had changed shape. Saw my GP who instantly saw my distended stomach and with some annoyance put it down to bingeing (why not?). I had a cough. "Chest is clear, an allergy cough".

The following week, still unhappy about the tightness in my stomach, I saw a different doctor, who advised me to have an ultrasound. That was Sunday. On the Tuesday, I went for the ultrasound. "Sit up!" "Why?" "Because you're carrying about 10kg of fluid in your abdomen and your lungs can't properly expand" (thus, the cough) "See your doctor immediately". Doctor not in. "Go to emergency". It was just across the road. Was admitted soon after.

They didn't know what was wrong. CT scans showed nothing except an enlarged lymph node alongside my liver, some scarring ("sclerosis") of the liver which he put down to "fatty liver" having been left untreated ("often a genetic thing, not necessarily to do with your overeating"), thickening of the omentum and of course fluid - lots of it. It took ages to get a sample of the fluid from my abdomen with the aid of an ultrasound. Even then, it took another week to get in results. I hadn't considered it beforehand, but by the time the doctor told me, I guessed. Cancer with primary of unkown origin (since the scans didn't show up anything) with mets to the peritoneum. I took it calmly. I know that's not a usual reaction, but I've lived a life filled with mental disturbance, so I feel tired by this time.

Was started on carbo/taxol which, again unusual, has caused me almost no side-effects. Just a few at the beginning, and hair loss (which didn't worry me). It's growing back. As well, my CA125 has been in free fall - from 1300+ down to 12 at last count. Only I'm starting now to feel more tired, and more depressed than is usual for me. Oncologist has decided it's time for me to have a PET scan (I can't have an MRI because I have a pacemaker, but I have yet to learn why one and not the other because I believe that the PET scan is more involved than an MRI - will ask). PET scan due in just over a week. Only available at two hospitals. Will have to travel to have it done. But hopefully it will show what's going on. Till then, I'm in the dark, but so much better off than others here because I really am keeping so well.

My biggest concern is not dying but losing the ability to live alone. Above all, I need space to myself. That was the hardest part about being an inpatient. If, as the oncologist suggests, surgery is an option further down the line, I'm scared that, if only because of my very large size, I will not recover so easily as to be able to stay alone in my own home.

I shouldn't complain too much about that however when I think of the pain that others here have endured and of which, till now at least, I've been mercifully free.

AussieMaddie

Thank you
...for your story, Aussie Maddie. I understand completely how scary and frustrating this disease and its various treatments can be, especially where it is not common (I suspect Australia? very rarein Canada too). I too live alone and worry that something will happen while I am alone but don't want to give up my independence. So far, it is OK. It's when the bad news hits ...
Complain away - that is what we are all here for! To listen and to help where we can.
Cheryl

westie66

Best Friend said:

Hi
Sorry, but i am not in the mood anymore to type all about my mom's PPC. Maybe it is just the mood I am in. I don't know. She had first catscan yesterday after 3 chemos. They will decide if she's ready for surgery. I am at that point now where I have to go back to work and I feel helpless. I can't be there to keep her company anymore. This is sad. I have noe control of this anymore. I can't even be there when the doc tells her how the chemo worked and what the next route is.
I am just glad that this board was made because my mom does not have ovarian cancer. She has PPC. Alike, yet so very different.
God Bless everyone who is going through this cancer. Also, bless ur loved ones. It can be done, but sometimes you may wonder if it's worth it if you have to live like this. I guess it is a decision u make.

Hi Best Friend
HI: I know it is tough - this is not a good cancer to have because the treatments can result in bad side effects and with PPT anyways, the little nodules usually come back after treatment. But life is worth it, no matter how bad the treatments are with good people like you to help.
Cheryl

AussieMaddie

westie66 said:

Thank you
...for your story, Aussie Maddie. I understand completely how scary and frustrating this disease and its various treatments can be, especially where it is not common (I suspect Australia? very rarein Canada too). I too live alone and worry that something will happen while I am alone but don't want to give up my independence. So far, it is OK. It's when the bad news hits ...
Complain away - that is what we are all here for! To listen and to help where we can.
Cheryl

"Complain away"
Thanks, will do

lulu1010

westie66 said:

Thank you
...for your story, Aussie Maddie. I understand completely how scary and frustrating this disease and its various treatments can be, especially where it is not common (I suspect Australia? very rarein Canada too). I too live alone and worry that something will happen while I am alone but don't want to give up my independence. So far, it is OK. It's when the bad news hits ...
Complain away - that is what we are all here for! To listen and to help where we can.
Cheryl

My story
I was diagnosed Aug 2010 after 14 months of constipation and abdominal discomfort. I saw many doctors and had many tests but it was finally discovered by a special CT scan at Cleveland Clinic. We decided to try chemo first as they were planning extensive surgery for me including a colostomy. I had 4 months of carbo (they thought Taxol would be too hard on the intestine at this time) and then robotic debulking surgery. After surgery I was able to get right back to chemo and took another 6 months of carbo/taxol. I was a stage 111c serous epethelial. They feel it may have started with an ovary cell but the ovaries were cancer free. Confusing, huh? I am now in remission and hoping to get into a clinical vaccine trial. Should hear about that next week.
I am a nurse but was not able to work during chemo. I ended up loosing my job but work per diem. The problem is I have not been needed lately and I really dont want to start a job somewhere else so I am just trying to enjoy the summer and hope things pick up in the fall.
I have 3 grown children in their late 20's and early 30's but none are married. My youngest quit her job and moved home to be closer (didnt love her job anyway!) My husband has been a tremendous support but it is fun to have her home also for the summer.
I am sorry we all have to meet here on this board but I am so glad I am not alone in this journey. I appreciate getting to know all of you and your stories also.

eward

Best Friend said:

Hi
Sorry, but i am not in the mood anymore to type all about my mom's PPC. Maybe it is just the mood I am in. I don't know. She had first catscan yesterday after 3 chemos. They will decide if she's ready for surgery. I am at that point now where I have to go back to work and I feel helpless. I can't be there to keep her company anymore. This is sad. I have noe control of this anymore. I can't even be there when the doc tells her how the chemo worked and what the next route is.
I am just glad that this board was made because my mom does not have ovarian cancer. She has PPC. Alike, yet so very different.
God Bless everyone who is going through this cancer. Also, bless ur loved ones. It can be done, but sometimes you may wonder if it's worth it if you have to live like this. I guess it is a decision u make.

sometimes I am not in the mood to tell the story
But this time in life is filled with ups and downs. One minute you are telling the WHOLE story, the next minute you are quiet. That is ok. My mom has PPC(stage 4), too, and we have been on a roller coaster ride for over two years now. I am tremendously thankful for this time. Sad that it is tempered with the "C" word, but thankful that we don't take as much for granted anymore and we say "I love you" and we know we care so deeply for each other. I am thankful that my mom's gyno-oncologist has not given up on her and tried a new chemo and all signs say it is working!!

So honor your highs and lows, best friend, but know that just when you don't know if you have a moment of hope left..............you might get reassuring news and have renewed hope. Life is precious and way too short for some. Enjoy each moment if at all possible.

habber

Why surgery?
Hi All,

Was just diagnosed May of 2011 with Stage IV--Ovarian at the time. Like so many, I began with a pleural effusion, pathology of fluid showed malignancy and my CA 125 was 3500. GYN / ONC dx ovarian based on a pelvic exam where he said he felt a 2" mass, but nothing showed on the ct except omental fat stranding. I got started on carbo / Taxol in late May. Was told it was an easy chemo and I should not have any bad side effects. But a really bad initial dose--lots of abdominal pain, nausea, diarrhea, joint pain. Second dose wasn't too bad at all with the anti-nausea meds. Due for another next Tuesday.

Went for a second opinion at MD Anderson. Doc there felt no mass on the three second pelvic exam and said I had primary peritoneal based on this and reading of the prior CT. CA 125 is only down to 2800 after two doses chemo. DANG!

Both doc recommended debulking surgery but the one at MDA didn't advocate IP chemo after surgery as it was too dangerous and they could always use it if I relapsed, they recommended just IV chemo. First doc said " we will probably get in a find no tumor" I didn't ask them--then why do surgery. But will. It seems all meeting with doctors have been unsatisfactory in terms of time spent, questions answered and general attitude. I read this in many women's stories and it really p----es me off.

My story also includes this board and another where the strength, wisdom and support of so many inspiring women has forever changed my perception. Thank you, all of you. Thanks especially to you,Tina for persistence in getting the board started.

daBeachBum

My Deal...
Hey all!

My story is a little different since I am a guy. My doctor says that the signifigant peritoneal caking they found was likely mets from colon cancer, but there is a small chance its the other way around.

I started feeling hella sick in the fall of last year and decided it might be about time for my once a decade doctor visit. I saw a GP down here who referred me to a gastroenterology practice in the area. This quack didn't put together my wildly bloated belly, weight loss, pain, vomiting and night sweats as anything serious and only reluctantly agreed to set me up for a colonoscopy at my insistence.

When the time came for the test a few weeks later at the local hospital/storm door company, I was in really bad shape. The prep had been hell and when they did my vitals my bottom pressure number was at 130. They hustled me into the ER and gave me meds to bring it down. When they were able to do the procedure, he couldn't insert the camera beyond 40cms. After I woke up they gave me a CT scan and he told me I had "advanced cancer" or "end stage liver failure", he "wasn't sure which". I stayed in the hospital a couple of days and got a paracentesis (4.7 liters!). This was the first of 6 in total.

The kicker is that after I was discharged, I called this guy's office and they graciously set up another appointment.... in 3 freakin' weeks! I not-so-politely declined and hauled butt up to the University of Pennsylvania and went to the ER. I didn't leave the hospital for 29 nights. I hooked up with an excellent oncologist there. At Penn they starved, poked and prodded me, but only ever ended up putting in a colon stent to open things up, punch holes to drain me and decide on what chemo regimen to use.

I was just about dead when they started FOLFOX and have been doing great ever since. I regained 40 of the 60 pounds I lost. Since I never thought I would go outside or eat again, every day has been a bonus! since then. My family is closer than ever and I reconnected with my longtime girlfriend who has been awesome. After recuperating at my sister's place for a month, I moved back to the beach with my nephew in tow(a newly graduated nurse). He digs the beach and got a job here and is a great drinking buddy lol. Been doing a lot of traveling and spending some of my retirement money early. SSDI quickly declared me disabled under their "Compassionate Allowances" program, so I just may be permanently retired at 47 - or at least until summer is over ;-)

Anyway, I am sorry that you have found yourselves needing to be here, but am glad we have each other for support. I'm humbled to be in the company of so many strong and beautiful women.

Strength and love to you all!

Ray

Best Friend

eward said:

sometimes I am not in the mood to tell the story
But this time in life is filled with ups and downs. One minute you are telling the WHOLE story, the next minute you are quiet. That is ok. My mom has PPC(stage 4), too, and we have been on a roller coaster ride for over two years now. I am tremendously thankful for this time. Sad that it is tempered with the "C" word, but thankful that we don't take as much for granted anymore and we say "I love you" and we know we care so deeply for each other. I am thankful that my mom's gyno-oncologist has not given up on her and tried a new chemo and all signs say it is working!!

So honor your highs and lows, best friend, but know that just when you don't know if you have a moment of hope left..............you might get reassuring news and have renewed hope. Life is precious and way too short for some. Enjoy each moment if at all possible.

Trust me. I have changed so
Trust me. I have changed so much. I am 33 yrs. old and i am at the point in my life where i know what is important now. I say I love you everynight and whenever i feel like saying it. I appreciate my daughter more because i realize she is eventually going to be the one left with me. Not that I am expecting the worst case but I just know she needs me to be strong so when she gets older we are strong. I want to spend every moment with my mom. I went out last night and I wanted to go home. I haven't been out in months.
I do appreciate my life.There is just times when I am on a low and the reason for that is I want to be there with her for the good and bad and with me working full time I am not going to be there anymore. It's very upsetting to me. Thanks for listening though. It always makes me feel better to come on here and vent.

Best Friend

eward said:

sometimes I am not in the mood to tell the story
But this time in life is filled with ups and downs. One minute you are telling the WHOLE story, the next minute you are quiet. That is ok. My mom has PPC(stage 4), too, and we have been on a roller coaster ride for over two years now. I am tremendously thankful for this time. Sad that it is tempered with the "C" word, but thankful that we don't take as much for granted anymore and we say "I love you" and we know we care so deeply for each other. I am thankful that my mom's gyno-oncologist has not given up on her and tried a new chemo and all signs say it is working!!

So honor your highs and lows, best friend, but know that just when you don't know if you have a moment of hope left..............you might get reassuring news and have renewed hope. Life is precious and way too short for some. Enjoy each moment if at all possible.

I know
Trust me. I have changed so much. I am 33 yrs. old and i am at the point in my life where i know what is important now. I say I love you everynight and whenever i feel like saying it. I appreciate my daughter more because i realize she is eventually going to be the one left with me. Not that I am expecting the worst case but I just know she needs me to be strong so when she gets older we are strong. I want to spend every moment with my mom. I went out last night and I wanted to go home. I haven't been out in months.
I do appreciate my life.There is just times when I am on a low and the reason for that is I want to be there with her for the good and bad and with me working full time I am not going to be there anymore. It's very upsetting to me. Thanks for listening though. It always makes me feel better to come on here and vent.

lulu1010

habber said:

Why surgery?
Hi All,

Was just diagnosed May of 2011 with Stage IV--Ovarian at the time. Like so many, I began with a pleural effusion, pathology of fluid showed malignancy and my CA 125 was 3500. GYN / ONC dx ovarian based on a pelvic exam where he said he felt a 2" mass, but nothing showed on the ct except omental fat stranding. I got started on carbo / Taxol in late May. Was told it was an easy chemo and I should not have any bad side effects. But a really bad initial dose--lots of abdominal pain, nausea, diarrhea, joint pain. Second dose wasn't too bad at all with the anti-nausea meds. Due for another next Tuesday.

Went for a second opinion at MD Anderson. Doc there felt no mass on the three second pelvic exam and said I had primary peritoneal based on this and reading of the prior CT. CA 125 is only down to 2800 after two doses chemo. DANG!

Both doc recommended debulking surgery but the one at MDA didn't advocate IP chemo after surgery as it was too dangerous and they could always use it if I relapsed, they recommended just IV chemo. First doc said " we will probably get in a find no tumor" I didn't ask them--then why do surgery. But will. It seems all meeting with doctors have been unsatisfactory in terms of time spent, questions answered and general attitude. I read this in many women's stories and it really p----es me off.

My story also includes this board and another where the strength, wisdom and support of so many inspiring women has forever changed my perception. Thank you, all of you. Thanks especially to you,Tina for persistence in getting the board started.

Need for surgery
They almost always do what they call debulking surgery for this type of cancer. They remove as much visible cancer as they can and things that might be a problem area in the future and do biopsies. If there were any obstructions etc. they would fix that. I had no tumors either but extensive seeding. My omentum was also pretty well gone. They did robotic surgery because it was the least intrusive with quicker healing,less pain etc..
They removed my ovaries and did biopsies of lymphnodes and other things. That is how they get the staging. I was able to get back on chemo very fast which was good because it was working well. Wishing you the best of luck.

westie66

daBeachBum said:

My Deal...
Hey all!

My story is a little different since I am a guy. My doctor says that the signifigant peritoneal caking they found was likely mets from colon cancer, but there is a small chance its the other way around.

I started feeling hella sick in the fall of last year and decided it might be about time for my once a decade doctor visit. I saw a GP down here who referred me to a gastroenterology practice in the area. This quack didn't put together my wildly bloated belly, weight loss, pain, vomiting and night sweats as anything serious and only reluctantly agreed to set me up for a colonoscopy at my insistence.

When the time came for the test a few weeks later at the local hospital/storm door company, I was in really bad shape. The prep had been hell and when they did my vitals my bottom pressure number was at 130. They hustled me into the ER and gave me meds to bring it down. When they were able to do the procedure, he couldn't insert the camera beyond 40cms. After I woke up they gave me a CT scan and he told me I had "advanced cancer" or "end stage liver failure", he "wasn't sure which". I stayed in the hospital a couple of days and got a paracentesis (4.7 liters!). This was the first of 6 in total.

The kicker is that after I was discharged, I called this guy's office and they graciously set up another appointment.... in 3 freakin' weeks! I not-so-politely declined and hauled butt up to the University of Pennsylvania and went to the ER. I didn't leave the hospital for 29 nights. I hooked up with an excellent oncologist there. At Penn they starved, poked and prodded me, but only ever ended up putting in a colon stent to open things up, punch holes to drain me and decide on what chemo regimen to use.

I was just about dead when they started FOLFOX and have been doing great ever since. I regained 40 of the 60 pounds I lost. Since I never thought I would go outside or eat again, every day has been a bonus! since then. My family is closer than ever and I reconnected with my longtime girlfriend who has been awesome. After recuperating at my sister's place for a month, I moved back to the beach with my nephew in tow(a newly graduated nurse). He digs the beach and got a job here and is a great drinking buddy lol. Been doing a lot of traveling and spending some of my retirement money early. SSDI quickly declared me disabled under their "Compassionate Allowances" program, so I just may be permanently retired at 47 - or at least until summer is over ;-)

Anyway, I am sorry that you have found yourselves needing to be here, but am glad we have each other for support. I'm humbled to be in the company of so many strong and beautiful women.

Strength and love to you all!

Ray

My Deal
Hi Ray and welcome as one of the few males on this discussion board. Your story is closer to mine as I don't have primary peritoneum cancer, nor do I have ovarian cancer, but rather secondary peritoneum cancer from an original gallbladder cancer. I am on a similar chemo treatment as you with one more chemical, irenotecan (called FOLFOXFIRI). So, you don't mention what has happened with the peritoneum seeding/caking? Did the FOLFOX treatment get rid of it? I am very curious to know this because that hasn't been a very common result of the chemo. I'm just hoping! I have finished my 4th treatment (with a lot of more or less surviveable side effects) and have an MRI on Wednesday to see what is/has happening/happened. Can you share what has happened to those nasty peritoneum nodules? Thanks, Ray, and Happy INdependence Day!
Cheryl

gailtrap

VickiReed said:

Here's my story
Last July 2010, I couldn't figure out why I was gaining weight and losing my energy. I went to the emergency room and they started running tests on a Tuesday. It wasn't til a week and a half later that they told me the diagnosis. Stage 4 high grade serous PPC. My CA-125 was 2204. I had never heard of it and wish to this day that I never would have.
I was full of ascites and had to have my abdomen(4x)and lungs(3x) drained until the chemo got rid of it. I wasn't one of lucky people as far as Taxol is concerned. I was hyper sensitive to it and it nearly killed me. One drop made my blood pressure drop and took all the oxygen out of my blood. It felt like a firestorm rushing through my veins and within a short period of time I passed out. (At this time I was sure I was dying!!)Next, they tried Taxotere and told me no one ever had a reaction to both of the drugs, well til me. Even after being premedicated I started having a reaction. My gyn oncologist decided to admit me to the hospital and desensitize me with 24 hours of steriods and then give Taxol at a reduced rate. All 6 rounds required a two night stay in the hospital. I had 3 rounds of Taxol/Carboplatin and a debulking surgery and another 3 rounds of Taxol/Carboplatin. I found out that during my first checkup I was platinum resistant. My CA-125 jumped from 7 up to 46. The scans showed numerous tumors, one on my diapraghm, some on my abdominal wall, one at my lung and also in my lymph nodes. I am currently in a clinical trial at MD Anderson in Houston, TX. The trial includes Doxil, Avastin and Torisel. I feel pretty good but not without plenty of side effects. Today I went and found out my CT scan results after the complete 2nd cycle. I take the first round of cycle 3 on tomorrow. A round consists of
Day 1-- Doxil, Avastin and Torisel
Day 8---Torisel
Day 15--Torisel
The doctor told me today that the tumors are shrinking and my CA-125 went from 115 down to 44. The side effects are scary, my cholesterol jumped over 100 points already and there is damage to my liver and my blood pressure is up (and now on meds). I am going to take two more cycles before the next scan and then decide what my course of action will be. I am having issues with hand-foot tenderness, a sore throat, some mouth sores, a rash from my bra and some headaches,and constantly staying on top of the constipation issue. I have to watch what I eat expecially carbonated drinks and acidy foods, I do the icing of hands and feet for the Doxil and try to do what they tell me. Thankfully I have always been a water drinker because this stuff dries you out so I drink, drink, drink!! I love my life and am not ready to leave it!! I am very blessed with a great husband and family and wonderful friends!! Also I went off work on short term disability for the Taxol/Carboplatin treatments and was able to go back (with neuropathy issues) 6 weeks after I finished treatment. I love my job but when I started the Doxil cocktail I went back off on short term again. I don't know how some of you are able to continue to work. I commend you for that! Just taking care of the house and go to appointments takes most of my time and energy. Anyone have any ideas on the next course of treatment???
XXXX
Vicki

WOW--you have really been
WOW--you have really been through it! I was just diagnosed with PPC and have had two chemo treatments, both of which went well. Am taking the neulasta shot after each treatment==no problem with the shot after the first treatment, but had major pain with the shot after the second treatment. I have a qestion about your debulking surgery--how did that go? Any problems? Did you have positive/improvements from having had it? Would you do it again? Did they build the body up in any way before the surgery?

Good luck to you and best wishes.

Gail

daBeachBum

westie66 said:

My Deal
Hi Ray and welcome as one of the few males on this discussion board. Your story is closer to mine as I don't have primary peritoneum cancer, nor do I have ovarian cancer, but rather secondary peritoneum cancer from an original gallbladder cancer. I am on a similar chemo treatment as you with one more chemical, irenotecan (called FOLFOXFIRI). So, you don't mention what has happened with the peritoneum seeding/caking? Did the FOLFOX treatment get rid of it? I am very curious to know this because that hasn't been a very common result of the chemo. I'm just hoping! I have finished my 4th treatment (with a lot of more or less surviveable side effects) and have an MRI on Wednesday to see what is/has happening/happened. Can you share what has happened to those nasty peritoneum nodules? Thanks, Ray, and Happy INdependence Day!
Cheryl

Hi Cheryl
Hi Cheryl,

I have had one CT scan thus far and will get another in the next two weeks. My doctor told me from the get-go that my cancer was "treatable but not curable". I am on chemo-for-life every two weeks at Penn. I started chemo in February.

The first scan was great as we expected from the way I was looking and feeling. There was signifigant shrinkage of the large tumor that had blocked my colon and my Osmental Caking was much less pronounced than before, and there were no new mets. My take is that the cells in both places (three if you include lymph nodes) are colon cancer since they responded so well to the regimen.

I started on FOLFOX and later my doc swapped out Avastin for Oxaliplatin to relieve the mild neuropathy symptoms I had. She is super pleased with my progress and I feel like a million bucks. Other than nappin' and crappin' much more than I ever did, my life is fairly normal.

In a way it was good for me to have had such a dire stage 4 prognosis. I was deemed inoperable and will probably stay that way. A lot of folks with lesser staging have had some ugly invasive surgeries and had yards of intestine removed. My only procedures were a colon stent to open up my blocked bowel and a bunch or paraceteses. It was three days of embarassment since I messed my bed a bunch of times, but it sure beats a colostomy bag...

So in a nutshell, we are trying to manage and shrink what I have and delay it spreading to lungs, liver or *gulp* pancreas. So far so good! I am living it up and have traveled to Miami and Chicago. I am going to Europe in September with my sisters and brother. Luckily I have great insurance, after tax LTD coverage and some savings.

I send good thoughts your way for your MRI results! I hope you get great news :-)

Take care,

Ray

westie66

daBeachBum said:

Hi Cheryl
Hi Cheryl,

I have had one CT scan thus far and will get another in the next two weeks. My doctor told me from the get-go that my cancer was "treatable but not curable". I am on chemo-for-life every two weeks at Penn. I started chemo in February.

The first scan was great as we expected from the way I was looking and feeling. There was signifigant shrinkage of the large tumor that had blocked my colon and my Osmental Caking was much less pronounced than before, and there were no new mets. My take is that the cells in both places (three if you include lymph nodes) are colon cancer since they responded so well to the regimen.

I started on FOLFOX and later my doc swapped out Avastin for Oxaliplatin to relieve the mild neuropathy symptoms I had. She is super pleased with my progress and I feel like a million bucks. Other than nappin' and crappin' much more than I ever did, my life is fairly normal.

In a way it was good for me to have had such a dire stage 4 prognosis. I was deemed inoperable and will probably stay that way. A lot of folks with lesser staging have had some ugly invasive surgeries and had yards of intestine removed. My only procedures were a colon stent to open up my blocked bowel and a bunch or paraceteses. It was three days of embarassment since I messed my bed a bunch of times, but it sure beats a colostomy bag...

So in a nutshell, we are trying to manage and shrink what I have and delay it spreading to lungs, liver or *gulp* pancreas. So far so good! I am living it up and have traveled to Miami and Chicago. I am going to Europe in September with my sisters and brother. Luckily I have great insurance, after tax LTD coverage and some savings.

I send good thoughts your way for your MRI results! I hope you get great news :-)

Take care,

Ray

Very Promising
Hi Ray: Very promising results for the rest of us non-curable but hopefully long-term treatable types! Did you FOLFOX include 5FU (as a 42 hr pump)? I'm not sure which one of the chemicals (oxaliplatin, irenotecan, 5FU) is causing me so much "nap and crap" (love that!) right now. I don't have the neuropathy problem very much because of the L-Glutamine I'm taking (5 grams/day) and reduced dosage but I'd like to get rid of the other! Wow! Europe! Can you still get your treatments every 2 weeks there or are you going be tween treatments?
Thanks for the "good MRI" wishes - me too re your scan and have some wonderful trips!
Cheryl