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Joanee
Posts: 5
Joined: Jan 2012

I was diagnosed in October when cancer was found in fluid from a pleural effusion. I've had debulking surgery that removed the ovaries and fallopian tubes, a third of the colon, my spleen and all the omentum (uterus was already gone). At first they called it ovarian cancer, but after surgery the pathology report came back with Primary Peritoneal Cancer. Docs keep telling me that it's treated the same as ovarian cancer. Does anyone else know if that's true? The discussions here seem as though they center around peritoneal cancer that originated somewhere else rather than PPC. Can someone help clarify for me?
Thanks!

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: I have secondary peritoneal cancer but earlier discussions were mostly about primary peritoneal cancer. You may have to go back in time in the discussion threads. There are quite a few people on this site with PPC. As I understand from reading their submissions, PPC is treated similar to ovarian cancer. This is because in women at least the peritoneum tissue is like ovarian tissue (don't know what it is for men!). Most of the treatments have involved chemo using taxol and carboplatin I seem to recall after debulking. I'm sorry you were diagnosed with this terrible disease.
Cheryl

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

I am the same as you. I was diagnosed with PPC after the fluid from a pleural effusion was tested and they found the cancer cells. I have not had the debulking and wish it had been offered to me. It is treated the same as Ovarian. I was diagnosed in Nov 09 and I am still going strong :)

Tina xx

Joanee
Posts: 5
Joined: Jan 2012

Awesome news that you're still going strong! Personally, I felt that debulking surgery would've been better off if they had waited till chemo had reduced some of the bulk already.

Hang in there, woman!

TexanByChoice
Posts: 44
Joined: Oct 2011

Hi welcome to the group...wish we could have met under other conditions. You'll find the folks knowledgeable and supporting. I was diaggnosed in Aug 2009 with initially ovarian cancer, but like you after path reults was told I had PPC IIIC. As you already heard it is treated the same as ovarian as the tissues are virtually the same. I had debulking, complete hysterectomy, omentum removed, and a section of the bowel. Actually the cancer was outside the ovary and sticking outside the bowel. I was fortunate not to have in the lymh node or any other organs. I went thru 6 rnds of taxol/carbo and was in remission(NED) until February 2011 when my CA125 went up from 4.9to 40..then another 6 treatments. Was ok until January 2012 and the numbers jumped again from 6.3 to 13.4 Holding my breath for retest on Jan 31. If numbers continue o climb, I guess it is back to chemo...yuk. As PPC and ovarian are treated similarly, I also read and post on that board. I've learned alot from those gals too. Men are dx with PPC too. I've read that some of them started out with appendix cancer. Not really knowledgeable about the difference. Good Luck and my prayers are with you.

Shirley
TexanByChoice

MarisaUK54's picture
MarisaUK54
Posts: 41
Joined: Aug 2011

Hello Shirley

I was reading your post and your "history" sounds a lot like mine. Can I ask how long you were NED between completion of surgery/chemo to the next lot of chemo? Sounds like I am a year behind you if you get my point and I have my check with oncology this week and I'm getting a bit nervous. Remission is a funny thing 'coz no matter how much I want to enjoy it for as long as possible, my oncologist told me to be realistic about reoccurance. Seems, the longer I go NED the more jittery I become!

I'd be interested to hear your comments,

Thanks,
Marisa

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

I, too, have had a similar entry into this world of PPC!

I was diagnosed in December 2012 following a pleural effusion and testing of the fluid. I immediately had a pleurodesis ("gluing" the lung to the lining so fluid cannot accumulate again) which has so far been successful and started on 3 rounds of chemo (taxol/carboplatin) after which I will have surgery and follow that with 3 more rounds. Not sure what they can take in the surgery as I have already lost uterus, tubes etc and colon and rectum but guess there are a couple of other bits I can live without! Initially I was told I also had breast cancer but thankfully that has been cleared. Following the first round of chemo my CA125 dropped from 658 to 191 which was great. Next week I will find out what has happened in the second round! Fingers crossed!

There are primary and secondary versions of peritoneal cancer.

I have certainly found this site to be a great help and support and hope you do too.

I wish you good health, happiness and joy.

Julie

Joanee
Posts: 5
Joined: Jan 2012

Hope your news was good!

Joanee
Posts: 5
Joined: Jan 2012

Hope your news was good!

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

Hi Joanee

Thank you - my news was good with CA125 dropping again this time from 191 to 67 so I am very pleased with that!

Julie

Dianna9
Posts: 11
Joined: Feb 2012

Hi Julie i was diagnosed Jan 10 2012. this was after my Regular Doctor told me 2 months before after my vacation that it looked like I had gained a gross amount of weight.I looked 18 months pregnant at the age of 54 but I was wearing a size 6 pants. Needless to say I have a new doctor. I had 14 pounds of fluid pumped off my abdomen the first time hurt like ____ But my belly went down. my ascities had no cancer cells in the fluid my ca125 was 1102.4 on Jan 10th before the debulking. it was 178.5 the day before my first chemo. taxotere 1 hour carboplatin half hour and all of the steroids before.
this is my first day after chemo. doing alright little shaky but not nauseated little headache from steroids. I have 5 more chemo scheduled every 3 weeks till towards the end of June.

can anyone tell me if this ca125 results are good or bad?
before surgery 1102.4 day before chemo 178.5??????????

I am glad i finally found a site that covered Peritoneum cancer.
I thought I had a new type of cancer LOL
Just frustrated still.
I am finding a lot of info on this site that I have not found anywhere else.

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

Hope all going well for you after your first round of chemo. My PPC was diagnosed December 2011 and I have just had my 4th round of carboplatin/paxitaxol (3 weekly all day affair) and handling it all pretty well. Going in for debulking surgery on March 19th so looking forward to that, specially after reading posts re advantages of aggressive surgery! Any reduction in CA125 must be good and your drop massive! Mine has dropped with each round - 653 to 191 to 67 to 38.

Yes I think the feeling of loneliness with this rather rare cancer is one that has struck many of us and the relief of finding this site for knowledge, information, support, friendship and love is a wonderful thing!

My mantra is "Stay strong - stay positive".

JulieL, Australia

Dianna9
Posts: 11
Joined: Feb 2012

Thanks
I am having my next chemo the 15 of March.
They called me today to tell me my WBC count is below normal.
going to the grocery store to pick up some more good food.
Hopefully the second one goes as well as the first no nausea only everything tasted odd.
finally after almost a week the food taste a lot better.
I am glad to see that yours ca125 is almost normal 35 is what they tell me but another friend of mine got hers down to 9 now and in remission she did her last chemo 2 weeks ago.
So I am sure after your debulking yours will almost be gone if not gone already.
Dianna

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

All the best for March 15th and hope it all goes well for you. I found the strange taste only happened in the first round so hope it is for you too. Keep up the good food and lots of rest to help the WBC. Having your taste buds back to normal will help too. So glad you haven't had nausea. I have another CA125 test this week prior to my surgery so hoping I might dip below 30!
Cheers, Julie.

Dianna9
Posts: 11
Joined: Feb 2012

2nd round done.
I had to have the Neulasta for the WBC count being down. They told me to take Claritin 20 mg. a day for the side effects of the bones hurting it works so far I only hurt really bad in my ribs the first night. I still hate being sick hair almost all gone. I don't even let my husband see me with out a wig anymore.Im pretty bummed about it.
The good side is I did not get nauseated at all only shakes in the morning. My hands are red and raw, I thought I was washing them too much, but I had my nails done and she put my hands under ultraviolet light to dry them BOY WAS THAT A MISTAKE, now my hands are really red and burned I call the DR and they said they thought they told me not to get my nails done. HUM even my husband told me that they did not cover it. Is there anything else I should not do that is so simple. I really dont know anymore. I will be so glad when this is all over. my CA125 wend down to 1102. to 178 to 159.
If I had something to wish for it would be 10 on the next test. I GOTTA WISH BIG.

Dianna9
Posts: 11
Joined: Feb 2012

2nd round done.
I had to have the Neulasta for the WBC count being down. They told me to take Claritin 20 mg. a day for the side effects of the bones hurting it works so far I only hurt really bad in my ribs the first night. I still hate being sick hair almost all gone. I don't even let my husband see me with out a wig anymore.Im pretty bummed about it.
The good side is I did not get nauseated at all only shakes in the morning. My hands are red and raw, I thought I was washing them too much, but I had my nails done and she put my hands under ultraviolet light to dry them BOY WAS THAT A MISTAKE, now my hands are really red and burned I call the DR and they said they thought they told me not to get my nails done. HUM even my husband told me that they did not cover it. Is there anything else I should not do that is so simple. I really dont know anymore. I will be so glad when this is all over. my CA125 wend down to 1102. to 178 to 159.
If I had something to wish for it would be 10 on the next test. I GOTTA WISH BIG.

Joanee
Posts: 5
Joined: Jan 2012

I really appreciated the responses I received since posting my comment. I'm amazed to hear that others were diagnosed the same way--via pleural effusion. I had no idea that such effusions were so diagnostic. BTW, I'm stage IV, but I gather that doesn't mean much these days, except that I'll probably be on chemo for the rest of my life. Just had my first Neulasta shot to increase white blood cells. Ouch! I am really tired of bone pain.

SOPHIE333
Posts: 92
Joined: May 2011

I just want to welcome you to this forum even though we all rather be well and not in need for it.. I live in Europe and for me its valuable to be able to compare treatments over the world. My mum is 62 and diagnosed with PPC stage IV since february 2011. She has done 8 rounds of carbo/taxol and no debulking yet, not sure she will get one either, no one talks about it here in Sweden but we will get a second opinion at a university hospital this month meeting and surgeon (gyn onc). Mum is only on hormones at the moment, vacationing in Thailand (!) and will have an check-up in mid feb. Hope she will stay with hormones only:-) If not, she will be on Gemzar next. It was worst for mum in the beginning as many also have told here on this forum, and things are actually getting better by time. I hope this is true for you too.

Love,
Sophie

Dianna9
Posts: 11
Joined: Feb 2012

via pleural effusion can someone tell me what this is?

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

I had a collapsed lung (shown by difficulty in breathing) caused by build up of fluid between the lung and the lining. The pressure of the fluid collapses the lung. As I understand it the fluid has come up from the peritoneal cavity and carried the cancer cells with it.

Just had excellent further CA125 result now down to 38 after 3rd round of chemo. Now having debulking surgery March 19th and then further two rounds of chemo. Also had PET/CT scan last week which showed wonderfully no cancer on the outside of the lung so believe the chemo has worked its magic there.

Julie

Dianna9
Posts: 11
Joined: Feb 2012

Thank you
Now I know .
they found mine through ascities.
same thing but lower in abdomen.
Dianna

You are giving me hope after 3 treatments and you are are almost normal on your CA125.
i already had the debulking Jan 27th but he left a lot of the smaller ones that he could not get out but they are 1 t0 2 cm. he said I have a 70% chance of kicking it, and he also told me I was healthier than most of his patients so he is expecting a good outcome.
But everyday I pray for strenth.
This is my second day after chemo, so far a little shaky but no nausea.
Thank God.
Dianna

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

Your circumstances are similar are mine as I was diagnosed via a plueral effusion. I had my last chest drain Dec 2010 followed by chemo. I am pleased to say that I have been fluid free ever since which is wonderful.

Tina xxx

Anxious Kathy
Posts: 21
Joined: Dec 2009

We'll be praying for you! My husband is tentatively scheduled for same on 26th...5 rds of chemo did virtually nothing, but his is secondary from appendix, so it is probably very different. So glad you had a good response! We'll all just keep on fighting!!! I've circled the 19th on the calendar...good luck!
Kathy

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

Yes we must all stay strong and positive! Wish your husband well for his surgery too. Sorry to hear 5 rounds of chemo have not helped - will he be having more after surgery or perhaps will the Drs change the type of chemo? Guess it will depend what shows up in the surgery. Good luck!
JulieL

wanttogetwellsoon
Posts: 147
Joined: Apr 2011

Hi Joanee...
Just read your post. Sorry for missing it in Janaury. First, like others here, I'd just like to welcome you here. When I first came to this site, there was no message board for peritoneal specifically so I had to rely on the ovarian one which, but whilst very informative, left me feeling that my cancer was not really being recognised in its own right. I wrote immediately to the owners but didn't get a reply at first because of staff holidays. The campaign gathered momentum and others began writing. My argument was that if peritoneal disease wasn't being acknowledged in its own right, information about the causes of this particular illness would be limited. I also thought that men would not really want to post on the ovarian board and they would effectively be excluded. Eventually, it was agreed that we could have this board so long as people used it. It's become very popular in its short time here and certainly it's given me a lot of comfort. I hope it helps you too. )

niccimarie
Posts: 2
Joined: Mar 2012

Hi I'm nicci I'm 32and just got diagnosed march 5 2012 i am so scared i have doctors that do explain but i still don't get it and what worriese the most is that i also have lupus a double whammy I'm just looking for ppl i cam really talk to that can explain things to me i didn't start any need yet I'm getting the port on the 12 and them the 20th i meet with a kemo doctor to figure out what kind i don't even know if there is different kinds well i don't know but thanks for letting me use am ear

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