Ppc

Hi Everyone, 

I had a CT Scan in January and my Doctor said that I had fluid which they had noticed before. I have had a full hysterectomy so I didn't really understand how this could be happening. They scheduled me for a follow up yesterday and now I am scheduled for a Tap....I guess to get the fluid out on Friday. I requested a C125 because a friend told me to. I am a little upset this was not suggested to me in January. 

I have never heard of this disease and am shocked without ovaries I could get this 5 years after my surgery. 

I am scared and do not know what to expect.  I have a follow up appointment with a oncologist on Tuesday. My stomach gets bigger each day, I don't have an appetite and am tired more and more. I keep reading all these sad emails. Does anyone have a happy ending? I am 53!

Appreciate any feedback or positives you may have. Thanks!!

Lori 

Hi Lori,

Since you have found this site, you are off to a good
start. This site is a good source for information. I'm assuming your
cancer diagnosis is primary peritoneal cancer. Your friend has
given you good advice for the CA-125. You don't mention your support
systems, i.e. spouse, family. Do you know any nurses or medical
people?  What exactly did the "doctor" say to you? Do you have more
than 1 doctor? Why did you have a total hysterectomy (I'm assuming you
had a total hysterectomy) in the first place? You reference that your
abdomen has been suspicious for fluid since before January. I'm
assuming your story begins with your primary care doctor who then sent
you to an oncologist. 

I am an ICU RN.  My spouse has been suffering with ovarian cancer since 1995. The last 3 years have been intense. Knowledge is power. Write
back and maybe you can find some needed assistance here.Yes, there are
happy endings but they don't just show up. It takes friends, family,
professionals and people from this site that can help you with your
positive ending.

Regards

JS

Unfortunately with cancer there is a lot of sad stories,but there is the also the real awesome ones too!!!! Im lucky,Im one of the awesome stories.In August04 I was given 3-6 months and now almost 4 years later here Iam!!!!! Im doing well, I wont lie and say things are just like before that August day, I have sideffects from the treatment but overall I lead a great life.I get to see my youngest daughter who is now 16 grow up and my grandbaby be born in October, if things keep going the way they are now.It is very important to be positve and keep your head up! I know how hard it really  is,believe me.When your having a bad day it is real important to surround yourself with people who know how to say the right things.I have lots of people who care about me,but some would always manage to something to make me sad.They didnt mean to.Know that its ok to have your down days,they too have there place.Just try not to dwell on the bad things,TAKE ONE DAY AT A TIME.I found when it was getting to hard,my husband an I would say,"ok,today we can do what we have to do to get through the day".Dont think about the next day until its here.Keep your head up!! THERE IS HAPPY STORIES OUT HERE AND IM ONE OF THEM!!!! I found this site just recently wish I had known of it back when I was going through all the "crap".Please use this site if only to vent,I find even now it helps to read others stories and talk of things only us who have gone through it can understand.There is a lot of good thoughts and advice here use it! GOOD LUCK AND GOD BLESS

 

On 4/11/2008 Sedonalady wrote:

Hi Lori,

Since you have found this site, you are off to a good
start. This site is a good source for information. I'm assuming your
cancer diagnosis is primary peritoneal cancer. Your friend has
given you good advice for the CA-125. You don't mention your support
systems, i.e. spouse, family. Do you know any nurses or medical
people?  What exactly did the "doctor" say to you? Do you have more
than 1 doctor? Why did you have a total hysterectomy (I'm assuming you
had a total hysterectomy) in the first place? You reference that your
abdomen has been suspicious for fluid since before January. I'm
assuming your story begins with your primary care doctor who then sent
you to an oncologist. 

I am an ICU RN.  My spouse has been suffering with ovarian cancer since 1995. The last 3 years have been intense. Knowledge is power. Write
back and maybe you can find some needed assistance here.Yes, there are
happy endings but they don't just show up. It takes friends, family,
professionals and people from this site that can help you with your
positive ending.

Regards

JS

 Thank you so much for responding. I cannot tell you enough how much I appreciate it.

I got married for the first time seven and a half years ago, no children. I had the hysterectomy because I had been having issues with fibroids. They took everything and then I had a scan and they say fluid in 2002 or 3 the follow to that was negative and for some reason we never enter that again until this last January when I told my OBGYN at my annual that I was still not feeling like myself. She then ordered the CT and the oncologist saw fluid but not much. His response was to wait three/four months and check again. No CA-125 was ordered at that time. This Tuesday I had the Scan and lots of fluid. Yesterday I had 3 1/2 liters of fluid to drain. They are testing it and on Tuesday I have  an appointment with the oncologist that I saw in 2003. After my CT Scan and phone call from my OB I asked for a CA-125 and did that on Wednesday. I am sure they have the results. I am upset that this was not watched closer and a little upset with the Oncologist. I spoke to my OB yesterday late afternoon and told her I wanted a second opinion. My primary doctor has not been involved with this but I have copied him in.

We just bought a new house and my next door neighbor is a retired oncology nurse. I have asked her to join my husband and I for our appointment on Tuesday and she has agreed. For that I feel blessed.  

I am so sorry that your spouse is going through this. I don't know what to expect but it doesn't sound pleasant. She is lucky to have you in her corner. My husband is paralyzed at this point.

I agree with you about Knowledge is Power. I think right now I am at the shocked stage! Any advise you can give me is welcomed.    

 Thank you so much!

Lori 

 

 

 

On 4/11/2008 Heidirose wrote:

Unfortunately with cancer there is a lot of sad stories,but there is the also the real awesome ones too!!!! Im lucky,Im one of the awesome stories.In August04 I was given 3-6 months and now almost 4 years later here Iam!!!!! Im doing well, I wont lie and say things are just like before that August day, I have sideffects from the treatment but overall I lead a great life.I get to see my youngest daughter who is now 16 grow up and my grandbaby be born in October, if things keep going the way they are now.It is very important to be positve and keep your head up! I know how hard it really  is,believe me.When your having a bad day it is real important to surround yourself with people who know how to say the right things.I have lots of people who care about me,but some would always manage to something to make me sad.They didnt mean to.Know that its ok to have your down days,they too have there place.Just try not to dwell on the bad things,TAKE ONE DAY AT A TIME.I found when it was getting to hard,my husband an I would say,"ok,today we can do what we have to do to get through the day".Dont think about the next day until its here.Keep your head up!! THERE IS HAPPY STORIES OUT HERE AND IM ONE OF THEM!!!! I found this site just recently wish I had known of it back when I was going through all the "crap".Please use this site if only to vent,I find even now it helps to read others stories and talk of things only us who have gone through it can understand.There is a lot of good thoughts and advice here use it! GOOD LUCK AND GOD BLESS

 

Thank you for the positive email. I do not want to own this cancer and I want to be a fighter as well. I need badly to hear happy stories and you have lifted me. Thank you so much. I do not know what is a head. I had 3 1/2 liters drained yesterday and will go to the oncologist Tuesday. Did you have surgery and chemo if you don't mind me asking. I will understand if you choose not to reply..

I am terrified but I guess we all are at this point. Thank you for your bright note. I hope to join you on the success list!

Appreciated,

Lori 

Hi Lori,

Lets talk about the good things.  Your husband, as
like me with my wife, is being your advocate.  As like me, he probably
holds a full time job. It's not easy but he needs to get on line and
start learning the vocabulary of the new world you have entered. Use
GOOGLE to search your cancer and choose only sites from "well known
places". If your run across a word you don't understand, google it.
Keep lots of ink in your printer and print up the pages you find. Your
neighbor can assist in that learning curve. Run your findings by her,
wow, what a blessing. As to your "instincts" TRUST THEM!!! You were
right all along. When you all visit the docs, start your conversation
by giving the healthcare providers unequivocal permission to speak to
your advocates and request your advocates to talk to the healthcare
providers. Prior to you visit, make a list of questions, it may be a
very long list. Under NO CIRCUMSTANCES should the healthcare provider
not clearly answer your questions. Under NO CIRCUMSTANCES should the
healthcare provider make you feel rushed or intimidated. This will be
the hardest part for you and your husband but this is where your husband and
neighbor can be of immeasurable assistance. This is also why
you/husband need to be educated in the vocabulary and potential
treatment plans. Trust your "BS" meter. The healthcare providers have
the responsibility to make YOU feel comfortable. If you already have a "feeling" that this provider will not be as you expect, have a
plan B. Start looking for a second opinion NOW! get it lined up. 

Things
to do. Get a definitive diagnosis, not a guess from the doctor. Western
medicine really shines in diagnosing. Ask for the pathology report from
your previous surgery. Ask for the pathology report from your
paracentesis (abdominal fluid tap). Pathology reports/slides are the
holy grail of your treatment plan. Understand EXACTLY what cancer cell
you have. This correct info will drive your treatment plan. Insist on a
PET/CT scan immediately.

Watch you blood lab results.
Particularly you red and white blood count. Watch you "liver enzymes"
(google it), watch your protein counts (albumin, total protein). Watch
your kidney function tests "creatinine" Drink plenty of fluids and keep
well hydrated. Use this site

http://www.intmed.mcw.edu/clincalc/creatinine.html " target="_blank" rel="nofollow">http://www.intmed.mcw.edu/clincalc/creatinine.html

to
monitor your kidney function. The "calculation" should be greater than
60. Drug dosing is dependent on how well your kidneys are working.
Doctors always assume they are functioning well. Make sure you KNOW
they are functioning well. 

PPC is very similar to ovarian
cancer and the treatments are similar. My research suggests that the first line
of treatment is intraperitoneal chemotherapy. (Google it). See what
options your providers offer.

Nutrition and supplements are important and very often overlooked. This site has great info in that regard. 

3
years ago, when our journey began in earnest, I ran across a person
Francine Milano, online, who had PPC and received treatment and
recovered. I haven't written to her in awhile and I'm not sure that the
address remains active but she was of enormous strength to me during
our "dark times". Try writing to her.

milano@electrobytes.net

Although you may have been delayed and misdirected by doctors, wife has been misdirected and mistreated by many "doctors". The time to act is now, don't allow them to delay your treatment, period!!!! We too were
angry. You will both feel overwhelmed and angry. Recognize it for what
it is and use that energy to meet your goal of tackling this cancer and
"kicking its butt". It is doable.

Although it is your journey and it is down
right frightening, there is an enormous community here to help you. Use
all of your resources and courage.

As for us, another leg of our journey starts tomorrow, Sunday.
We are traveling from our home in Sedona AZ to MD Anderson in Houston
Tx for another opinion and probable treatment. My wife of 26 years has
had 7 different chemo's and 2 major surgeries. She is an incredible
person and my best friend.

Please write as our discussion is therapeutic for me as well. 

I included some links that I found helpful to me. Hopefully they will help you too. 

Regards

Jim S

http://www.mnovarian.org/faq_recurrent_disease_treatment.htm

http://www.intmed.mcw.edu/clincalc/creatinine.html " target="_blank" rel="nofollow">http://www.intmed.mcw.edu/clincalc/creatinine.html

 http://www.hipectreatment.org/documents/hipec.php

http://www.cancer.gov/cancertopics 

http://www.cancer.gov/newscenter/pressreleases/Ipchemotherap

Heidirose,

I went back to read your email this afternoon because I needed a lift. I had the debunk Friday but feel very winded today. I am tired and my tummy hurts. I keep going to a dark place but when I went back and read your email it helped. Thank you for your optimism. Anything you feel like sharing whenever you get a chance is welcomed. Right now I am so scared and tomorrow is my oncology appointment. I have everyone I have shared this with praying for me so I am blessed in that regard.

Your success gives me hope, so again, thank you! You, your children will stay in my prayers as well.

Lori 

 

On 4/11/2008 Heidirose wrote:

Unfortunately with cancer there is a lot of sad stories,but there is the also the real awesome ones too!!!! Im lucky,Im one of the awesome stories.In August04 I was given 3-6 months and now almost 4 years later here Iam!!!!! Im doing well, I wont lie and say things are just like before that August day, I have sideffects from the treatment but overall I lead a great life.I get to see my youngest daughter who is now 16 grow up and my grandbaby be born in October, if things keep going the way they are now.It is very important to be positve and keep your head up! I know how hard it really  is,believe me.When your having a bad day it is real important to surround yourself with people who know how to say the right things.I have lots of people who care about me,but some would always manage to something to make me sad.They didnt mean to.Know that its ok to have your down days,they too have there place.Just try not to dwell on the bad things,TAKE ONE DAY AT A TIME.I found when it was getting to hard,my husband an I would say,"ok,today we can do what we have to do to get through the day".Dont think about the next day until its here.Keep your head up!! THERE IS HAPPY STORIES OUT HERE AND IM ONE OF THEM!!!! I found this site just recently wish I had known of it back when I was going through all the "crap".Please use this site if only to vent,I find even now it helps to read others stories and talk of things only us who have gone through it can understand.There is a lot of good thoughts and advice here use it! GOOD LUCK AND GOD BLESS

 

Hi Lori.

 How are you? I hope you are doing well.

My mom also had full hysterectomy 9 years ago but since 2005 she kept losing her weight and on October 2006 she suddenly felt sick, vomiting and diarrhea. It lasted for one month, we didn't know what to do that time the doctors had her CT-SCAN and saw little fluids on her stomach but did not give it much attention that time.  Starting January 2007, she always felt hard time peeing and did not have the appetite to eat.  Later on she suddenly felt having a hard time breathing.  Not until October 2007 when she experience diarrhea this week then constipation the next week and vice versa.  We hurriedly went to see an Oncologist and scheduled her for CT-SCAN, Blood Tests, X-Ray.  They saw water on her lungs so we have it removed and test the fluids, she also had exploratory surgery... which we all found out later on was bad news... the doctors said she has an Ovarian Ca. 

She started her Chemo last November 2007 but the first medicine did not do anything so we change her chemo med, the good news is she is getting better from this 2nd medicine and we are still on-going with her chemo. 

I am sorry but I hope I am not scaring you, I just want you to know my mom's experience. I know you are shocked right now, but just have faith in God and everything will be alright.  Sometimes you are really going to be depress, emotionally drained and all but don't lose hope.  Find family and friends who are always there to talk to you, this is really important.  I know how hard it is for you right now coz my I can also see it through my mom how hard she is going through right now... All I know is you have to me TOUGH, ready to fight, and the most important thing have FAITH in God.  Always talk and pray to him.  He will be always there to listen and help you.

 

Pie 

Thank you so much Pie,

I had a tap last Friday and they took 8 pounds of fluid off me. I found out on Tuesday it was cancer and yesterday they started Chemo. I will do 2-3 rounds to try and dry up the fluid before they can go in and do surgery. I am very scared but my husband, friends and faith will get me through this along with the encouraging notes from people like you. This is all happening so quickly.

I pray your Mom keeps doing better and that we all learn and teach from the experience's we are going through. She has you in her corner so she is already a head of the game.

My best to all of you and thank you again for reaching out!

Lori 

how did your mother get ovarian cancer after having a hysterectomy. i am thinking of having a hysterectomy because my mom did of ovarian cancer on febuary 8th of this year. biggest loss of my life. hers was actually called primary peritoneal cancer/ovarian cancer always very confusing to me. anyway she lived for 7 years after diagnosis and had good success with avastin which is not a chemo. but it is an iv medication that cuts the blood supply from the tumor. it is experimental and insurance or most will not pay but we did it and payed out of pocket. my prayers are with you and your family as i sure know what you are going thru. carole