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I have just been diagnosed with PPC Stage 3C Grade 3 and have been told it is a rare cancer that they do not know much about. I am looking for anyone else diagnosed with same to talk to.
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Primary Peritoneal Carcinoma
- By VER
- Posted March 23, 2009 at 12:06 pm · 8 replies
- In Finding emotional support
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Explore topics in this discussion:
Cancer Taxol Surgery Hysterectomy Breast cancer Ovarian cancer Primary peritoneal carcinoma Pain
8 replies
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- By djwaz184
- Posted March 24, 2009 at 10:15 am
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That's my cancer. Sorry you're in the same group with me on this one.
I am Stage IIb. I do not dwell on the statistics out there. But I am glad that I haven't run across too many of those statistics being right. Old stuff out there for the most part, when there weren't the advancements in medicine we have today - which makes it rougher to try to figure out things.
I guess I don't mind being a sort of pioneer in gathering my own statistics and such on peritoneal cancer.
- By tje
- Posted April 3, 2009 at 12:01 am
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Yea, me too! I agree with djwaz184. DO NOT DWELL on the stats or info you read on internet. You are you and you are different. Stay posted to positive things and be around positive people. I'll be back to discuss more......late tonight
- By tex2step
- Posted June 19, 2009 at 11:40 am
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I am a PPC survivor of one year. I have completed the six rounds of Carbo/Taxol/Avastin in February '09, but was taken off of the COG218 clinical trial due to a blood clot.. I have never had a CT show any tumor, but cancer was found most of my abdomen - Staging IIIC.
How are you doing? Have you started Chemo and if so what are you taking. Chemo can be hard on you, but there is light at the end of the tunnel. I would say for me it took about six weeks to feel like my old self with a few extra side effects, but my self none the less.
I am certainly not an expert one year out, but we are here if you need someone or have questions.
In general, PPC patients are placed in the Ovarian Cancer bucket and not followed separately so it makes it difficult to find PPC specific information.
Do you know yet whether the CA125 blood test is valid for you?
Stacey
- By esjpedsrn
- Posted June 25, 2009 at 10:28 pm
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Hi I am new here, just found the site. I have been diagnosed with primary peritoneal carcinoma recently and have a cytoreduction surgery with heated intraperitoneal chemo scheduled for Aug. just wondering if any of you have gone through this or what treatments have you had.
Thanks for any response
- By VER
- Posted June 25, 2009 at 11:15 pm
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Hi esjpedsrn
Sorry to hear about your recent diagnosis --- what stage and grade have you been diagnosed. I have stage 3 grade C, I have recently completed my Carbo/Taxol chemo treatments, 8 in all with a complete hysterectomy etc. etc. My chemo has gone well and I am feeling well and looking forward to a long period of time in remission. I have heard alot about the heated intraperitoneal chemo however they do not offer it here in Canada where I live. Where do you live and what is the information you have received on this treatment and if you don't mind me asking how much does it cost in the US. All my best to you.
- By tje
- Posted June 26, 2009 at 11:19 am
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UPDATE - I went to dr to discuss my scans/blood report after my initial set of chemo treatments. It looked good and I was thrilled then I was confused. I ask him....I was diagnosed with this mysterious disease that no one seems to have heard about and was given all this bad info and statistics now I have a great scan and don't come back for 4 months. He said...this is the kicker and what I didn't know before...."they are good for this time"...."it won't always be that way"....."It will come back"...I don't know when but it is not a cureable disease like breast cancer when you can say you are in remission....you are just waiting until it shows up again and then we will do the chemo again (taxol, carboplatin)...I've been very disheartented by this news. I was looking toward a cure. or a long remission. He said there is so little known so funding is sparse. He said it will be back. I said maybe it won't, he said "it will". it's yours to keep. He was brutally honest and I didnt epect that. I'm just going to be waiting until it comes back. He said take one day at a time. Maybe I shouldn't post this but everything you read is sooooo vague. He was honest with me and I appreciate that. I have PPC Stage III. I have lots of pain in my upper stomach and neuropathy in feet that we are treating. Ask your doctor to be honest - it is now being called retro-peritoneum. Still confused about a lot of things. I have been reading about the heated chemo, but, if it's going to come back.....I don't know. Just be prepared in every way and we are all different.
All,take care - jan
- By esjpedsrn
- Posted June 26, 2009 at 11:54 am
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Ver
I live in Greensburg, IN and my surgery is going to take place at University of Cincinnati in Cincinnati,OH.
From the research I have done on heated chemo it is as close to a cure as you can get but no promises. some people who have done this have been disease free for years while others have recurrent disease. In order to get this type of treatment you have to be a good candidate what ever that means and it is done while in the O.R. after the cytoreduction surgery is complete. The heated chemo is supposed to take care of any cancer seed 1cm or less that was missed or left. I am going for it cause I am only 38 and feel like if this can give me a chance at long life I need to try. But I also know it is Gods hands and what his plan is for my life. A web site if you have not already checked it out is pmpawareness.org. It has a lot of info, although most people on there have pmp and not primary peritoneal carcinoma, the cyto/heated chemo treatment is the same.
God Bless and best wishes your way
- By esjpedsrn
- Posted June 26, 2009 at 11:59 am
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Ver
Forgot to tell you about staging. To be honest I really don't know. My pathology report come back stating low grade but my oncologist wouldn't give me a prognosis til after my surgery cause he wants to know what grade(stage) the tumors are. Sorry if that doen't make any sense but that is all I know.
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