I was diagnosed, with what they thought was OVC Stage 3C Cancer in October of 2008. After 4 chemo treatments and recent debulking surgery this past week they have discovered it is in fact "Primary Peritoneal Cancer". I can't find a lot of information on it in the internet and was wondering if any of you wonderful, inspiring women have any stories, ideas, survival stories, CURES.............. The cancer is responding to chemo well going from over 2400 in October to 30 in January. After my recent surgery it went to 37 but the surgeon is saying that is not uncommon after surgery etc. and expects it to go down again. From the little information I have gathered on the internet it sounds worse than OVC. Wonderful..... just when I was starting to cope with the first diagnosis, hehehe
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Primary Peritonial Carcenoma
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37 replies
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- By Dee09
- Posted February 26, 2009 at 12:32 am
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My tumor was in my abdomen and they didn't know where exactly it came from - told me it could be ovarian or peritoneal but that it didn't make any difference. The diagnosis is ovarian and they treat it as such. So, my understanding from my surgeon and oncologist is that the cell type for the most common form of ovca (the name escapes me at the moment) can occur in one of 4 places - ovaries, peritoneum, fallopian tubes or (sorry - chemo brain) - endometrium (I think is the 4th). I go to a well known cancer center so they see a lot of cases. Peritoneal is uncommon and I couldn't find much info on it either, but as far as I know it is not worse than ovca. Sometimes I find it's not a good idea to read too much random stuff on the internet. What did your oncologist say about the difference?
- By zircons
- Posted February 26, 2009 at 3:04 pm
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I was diagnosed with primary peritoneal also. It is considered ovarian cancer and that is how they treat it. It is spread over more areas including the peritoneum. Had carbo/taxol also two and a half years ago. So far so good.
Had a bit of neuropathy in my feet. I still have it, but I ignore it. It is more apparent for me when I wear shoes or sneakers that have cloth linings or if I am wearing socks, not stockings or pantyhose.
- By Dee09
- Posted February 26, 2009 at 5:39 pm
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djwaz and ver:
Have either of you been told by your doctors that there's a difference between ovca and ppc (other than the insurance issue - I mean in medical terms)? I'm wondering since my information is like zircons - that it's essentially ovca.
Thanks.
- By 1knocR
- Posted February 26, 2009 at 7:30 pm
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Count me in too...PPC was my diagnosis. Same as everyone has said, it acts and is treated like OVCA so that is how they classify it. The stats are grim when you look it up in the Internet. I should be dead now according to their statistics. Made my 4 year survivor mark this past December. And I fully intend on celebrating my 5 years this December. Because there is not much information, you can't really get everything about it. Best thing to do is ask your doctor or nurse. My dr has explained it to me before but I couldn't tell you now what the diff is. I've had 3 recurrences and the platinum drugs have worked every time. Now that I know about cranberry juice, they will continue to work if I need to go thru it again.
- By JC1945
- Posted February 26, 2009 at 10:03 pm
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I was diagnosed with PPC in 6/06, 6 rounds IV/IP cisplatin and taxol. With the help of tamoxifen, was able to stay off major chemo until this January, 2009. I am now taking Carbo/taxotere. After one round, CA125 was cut in half. I have been told that PPC cells look like OVCA cells and are treated the same. I don't buy into statistics. Each individual reacts in their own way to the chemo. I, too, intend to be around for many years.
Judy
- By djwaz184
- Posted February 27, 2009 at 9:40 am
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He really did give me a good explaination at the time - about the differences, but as you all know, chemo brain prevents me from remembering word for word what he said about it. I'll have to ask Carol, she went with me to just about all my appointments and was my extra ears to hear what I didn't. (Carol is my boyfriend's mom). I only remember him saying that it is treated basically the same, but that peritoneal normally doesn't require a stomach IV. I don't know, I've read some different things from women that have had peritoneal and they went through the stomach too, so it baffles me. Maybe because it didn't effect the lymph nodes I didn't have the stomach therapy?
All I know is this. The doctor told me what I had at my consultation, told me what he was going to treat it with and then told me we'd be back in his office in 5 years to celebrate the continued success. He also told me NOT to base my future on old statistics - sage advice as well. Funny how that first meeting put me at complete ease and I've trusted him ever since.
So far, it's worked, my CA125 number remains low and I'm in remission. I sure would like to stay that way for a very long time. When that 5 year mark does come, I do plan to make a cake for that appointment! LOL
- By VER
- Posted February 27, 2009 at 12:19 pm
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Thanks for your reply and help. My Onc. basically told me that the cancer starts in the peritonial lining and spreads from there. Unlike OVC (although PPC is graded and treated the same as OVC) it does not spread through the blood and/or lympth nodes, typically. Left untreated it would spread to the bowels etc. She said the "stats" are typically not as good as OVC but then with her hands on experience she has seen it go either way -- just like everything else. She is very encouraged by my CA125 count, and having just had another treatment yesterday I am hoping that will go down further. She is planning on another 3-4 treatments of the carbo/taxel --- I am hoping for the same results as you amazing women here. The stats on the internet are not very good but hearing from everyone here on this website I am VERY encouraged. I am taking these stats lightly as there is very little information and even the stats are 3 - 9 years old.
- By VER
- Posted February 27, 2009 at 12:25 pm
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This is fantastic to hear from a few that experiencing this first hand and to have such great results. I feel so much better having read your stories than anything I found on the internet. It is amazing how little information there is about this cancer -- even our local cancer clinic's bookstore (as vast as it is) didn't have much if at all information on this cancer. What I don't understand is that if they treat and grade this cancer the same as OVC then why are the statistics worse. I mean there must be some "difference" -- I am curious and will ask my Onc. even more directly next time.
- By VER
- Posted February 27, 2009 at 12:30 pm
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My Onc. this last visit mentioned her concern about neuropathy in my feet and hands. Through chemo I did get some tingling in the tips of both and it seems to subside if not disappear altogether, although I think there is still a "tad" remaining in my toes. She has a concern with this in relation to the dosage of carbo/taxel and wants to keep a check on that as another patient of hers has permanent damage as a result. I don't know how "bad" this can get - like I said I have had tingling but nothing that stops me from doing anything -- I don't think I have noticed it with shoes and socks. I know it can be it's worst for me about day 4 - 5 of chemo but then seems to subside like I said with perhaps a little remaining now in my toes. Can you give me more information on what I should look out for with the neurpathy.
- By VER
- Posted February 27, 2009 at 12:33 pm
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Congrats "1knoc4" on your almost 5 year mark. That is fantastic. I am going to post all these replies on my bathroom mirror so that I can look at them everyday, and I am going to stay away from the internet for the time being. hehehehe
- By Dee09
- Posted February 27, 2009 at 1:06 pm
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Thanks for all the info everyone. Even though I'm not sure what I actually have (ovca or ppc), I've been trying to get information about ppc and this is the first time I've talked to people who know anything about it. (Now I'm thinking that the dx is ovca because that's clearer for insurance?) That's what I love about this site - knowing you're not alone.
Ver, if you do ask your oncologist about the statistics issue, please let us know what she says. Although my surgeon told me "statistics are for doctors" and not to worry about them, and I agree with everyone here who's recognized that we can't obsess about these stats, esp old ones - I'm still curious why, when ovca and ppc are the same, the stats would be different.
As for the neuropathy, I had a very slight amount in my toes during chemo but had a delayed effect where it got worse in my toes and started in my fingers about a month after finishing chemo. That's lasted for the past two months but it's tolerable and my onc says it should go away. Ask your onc precisely what to watch for, but I think as long as it's basically what you describe - a little annoying but not so bad it inhibits your activities - it will probably go away.
- By mymotherisamazing
- Posted February 27, 2009 at 1:33 pm
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I would like to suggest some vitamins for anyone suffering from mouth sores. I know there is a mouth wash that can be used but from what I understand it does not make the sores go away...
My mother has been taking these for a few weeks now and her sores are going away - there is less pain...it is worth a try if anyone else is suffering
Biotin 5000 - 1 twice daily
Calendula - 2 daily
Embryo - Wheat embryo 2 daily
- By zircons
- Posted February 27, 2009 at 2:43 pm
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After the surgery was over my surgeon said I would die from old age many years from now and not from cancer. I prefer to believe her. I hate it when doctors give dire results or statistics. Everyone is different as we can see from this site. Just keep positive and keep pushing on.
- By djwaz184
- Posted February 27, 2009 at 3:18 pm
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On the neuropathy, mine remains after nearly 4 months off of chemo. It has diminished somewhat through the use of 300 mg of neurontin, 3 x day.
Doc was pretty concerned about the numbing/tingling that I experienced. It is also why he chose not to do a "just because" chemo treatment after my surgery. He felt that by doing so, it may push me into a wheelchair. I didn't realize it could get that bad. Right now, I have no problem other than when I get out of bed and that too has diminished through the use of magnesium supplements.
I ride a motorcycle and having the ability to feel/move my feet is pretty darn important to me so I'm doing what I can do get things more closer to "pre-chemo" status! LOL I'll do fine as it is now. I did take a ride just before my last chemo and I had no problems with shifting/braking, so I should be all set for riding season coming up around the corner.
I can't wait to get on the seat to my Harley. It's the one and only place that I feel disease free and have no thougths of the disease whatsoever.
The saying "Freedom isn't free" certainly applies to the freedoms we enjoy as a citizen of the USA, but it applies to every cancer patient. We all give up something to become free of cancer.... For me personally, I've given up being shy with doctors, I've been poked and prodded in every aspect. I've given up the feelings in my fingers and toes. I'm NOT trying to diminish the sacrifices of our soldiers, I'm just applying the saying to my life is all.
Thank you to all our Troops, you're an amazing group of individuals.
- By 1knocR
- Posted February 27, 2009 at 3:42 pm
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I never had the tingling or burning with neuropathy, but I sure had it and didn't realize how much until one of the other doctor's filled in for my vacationing dr. He asked me about it and I said I don't think I have it. So he takes this metal rod about width of a pencil and length of a ruler. He hits it on his hand so it is vibrating. He touches my leg with it. I can feel it vibrating and it is a bit cold. He repeats this scenario, only he touches it against my arm. I REALLY felt it vibrate and REALLY felt how cold it was. I had the numbness and didn't realize it. My hands were OK. Something really hot bothered them but not cold. Amazing.
- By JC1945
- Posted March 1, 2009 at 5:30 pm
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PPC starts in the tissue outside of the ovaries and spreads to other tissue/organs/nodes. (You could have a complete hysterectomy and still get PPC. ) I had a sizable spot on my bladder, cul-de-sac, and diaphram. Some were cut away and others that were very small were left to the chemo. There are some vague thoughts on how it begins .. don't think they have a clear cut answer.
I had some minor neuropathy the first round of chemo. All that remained is a teeny bit on the outside of my left little finger that I barely feel and that has been since 11/06. Currently, taxotere/carbo and no neuropathy. Everyone reacts differently.
Judy
- By Gia
- Posted March 2, 2009 at 11:54 am
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Ladies, My mother had OvCa 25 years ago and die only a year after diagnosis. I elected to have a hystrectomy when I was 45 years old. I was diagnosed with PPC 3 years later. The ovaries are covered with the same lining that covers the peritoneum---the protective lining for our abdominal organs including the omentum. The symptoms usually present the same with bloating, distention, some pain, and if left to long untreated ascites (fluid in the abdominal cavity). Treatment is the same for OVCa and PPC.
Best Gia
I am 5 years out this Jan. Currently on Avastin/Cytoxan.
- By Shelter
- Posted March 2, 2009 at 11:31 pm
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Hi Ver
I was diagnosed with PPC in OCtober /08
and now on CHemo had 3rd Treatment
I ahve a ton of info, from when I was first diagnsoed.... after my Radical hysterectomy,... Oct 29 th...
I began to serach out info on my recent diganosis....
Primary Peritoneal Papillary Serous Adenocarcinoma
I can send you some info if you'd like ?
Grade 1 stage 3a PPC for me
I ahve many links to great information
here are a few to start off with....
http://www.cancerhelp.org.uk/help/default.asp?page=6029
http://www.cancerbackup.org.uk/Cancertype/Ovary/Relatedcancers/Primaryperit onealcancer
http://www.dana-farber.org/pat/adult/gynecologic-cancer/diseases-treated/pr imary-peritoneal-cancer.html
I have a late night ramble again, seems the steriods post chemo really keeps me up and even though I am "tired" my body wont shut off...
using a magic bag for some heat... and I will take my lorazapm in a few minutes
MD Anderson had published an article stating that.,... each type needs to have a its own treatment..
and that low grade like I ahve needs to be readdressed as to teh type of chemo used....
I wish you the Best...
adn yes. I agree
some tiems we can read tooo much & its negative.. or jsut we get OVERLOAD of information
ENJOY the days...
Learn to REST ( like I am trying too)
and... know......
you are not alone in this journey,,,,
we are here with you
Blessings
-MA
Im going to try to do some relaxing heere in a bit...
- By quiltmaker
- Posted March 3, 2009 at 10:07 am
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if ppc is so rare then why do we all have it and why is their not more info on it??????????????
- By quiltmaker
- Posted March 3, 2009 at 10:08 am
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could you please tell me about cranberry juice?
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