New to this

Primary Peritoneal Cancer
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

Welcome to the board -- I too have PPC
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

Joanee said:

Thanks to all
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.

Hi Joanee
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

TexanByChoice said:

Welcome to the board -- I too have PPC
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

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 said:

Hi Joanee
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

Hi juliel
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.

Dianna9 said:

via pleural effusion
via pleural effusion can someone tell me what this is?

Pleural effusion
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

JulieL said:

Pleural effusion
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

Dear JulieL
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

JulieL said:

Pleural effusion
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

Praying for you on 19th
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