GOOD NEWS for PPC warriors: Low-Grade Serous PPC Original Research Article, Mar. 2011

lindaprocopio

Low-Grade Serous Primary Peritoneal Carcinoma Original Research Article
Gynecol Oncol. 2011 Mar 11;[Epub Ahead of Print], KM Schmeler, CC Sun, A Malpica, MT Deavers, DC Bodurka, DM Gershenson

This retrospective study showed that women with low-grade serous primary peritoneal cancer have long overall survival despite persistent disease upon completion of primary treatment.

TAKE-HOME MESSAGE
This retrospective study showed that women with low-grade serous primary peritoneal cancer have long overall survival despite persistent disease upon completion of primary treatment.

Abstract
Objective: 10% of women with serous ovarian cancer have low-grade carcinomas. These patients are diagnosed at a younger age, have a longer overall survival and a lower response rate to platinum-based chemotherapy compared with women who have high-grade serous ovarian carcinoma. It remains unclear if these features are similar in women with low-grade primary peritoneal cancer (PPC). To further explore this issue, a retrospective analysis of the clinical and pathologic characteristics of women with low-grade serous PPC was performed.
Methods: A retrospective study of 53 patients with low-grade serous PPC evaluated at a single institution from 1986 to 2009 was performed. All cases were reviewed by a gynecologic pathologist to confirm low-grade serous PPC.

Results: Median age at diagnosis was 51.7 years (range 27.1–82.4). 46 patients (86.8%) underwent primary surgery, with optimal tumor reduction achieved in 30 patients (65.2%). 48 patients (90.6%) received chemotherapy as part of their initial treatment. At the completion of primary treatment, 66.7% of patients were noted to have persistent or progressive disease. With a median follow-up of 66.1 months, the 5-year PFS was 16%, yet the 5-year OS was 69%.
Conclusion: To our knowledge, this is the first report of women with low-grade serous PPC.

Similar to low-grade serous ovarian carcinoma, patients with low-grade serous PPC have high rates of persistent disease at the completion of primary treatment yet a long overall survival. Further study focusing specifically on low-grade serous ovarian and primary peritoneal carcinomas is needed to determine the optimal treatment of these diseases.

Mum2bellaandwilliam

Wow that's
Wow that's positive!
Unfortunately mums is high grade
But what a Ray of hope for the low graders, thanks for sharing it with us Linda.

Tasgirl

Thanks for posting that
Thanks for posting that Linda. I do not know if I am/was high or low grade - only know I was diagnosed with stage 3. Will try and remember to ask my oncologist at my next appointment.
Jenny

kayandok

Linda,
is yours low grade? I have several friends, since passed on that were low grade serous and lived more than 10 years. They all had several surgeries, several long remissions and although they did have some chemo, it was not that effective. Unfortunatley mine is grade 3.
k

lindaprocopio

kayandok said:

Linda,
is yours low grade? I have several friends, since passed on that were low grade serous and lived more than 10 years. They all had several surgeries, several long remissions and although they did have some chemo, it was not that effective. Unfortunatley mine is grade 3.
k

Mine is high grade (Grade 3) also.
My cancer is Grade 3 and seems to be just about un-killable. I had my 6th round of Avastin yesterday and am now allowed to start taking Cytoxin again with it now that my WBC and RBC have come up some, but I have to take the Cytoxin now at a tiny 25 ml dose daily. My CA125 was 1500 before I started this avastin/cytoxin regime 2 months ago and is 1600 now (with no results yet from my pre-chemo lab draw yesterday), so they are trying to schedule a CT/PET for me in the next couple of weeks to see if I have further disease progression and we need to move on from cytoxin/avastin to something new. No idea new drug WHAT yet; I've run through a string of ineffective chemos. So if I'm even stable since my last scan, I'd love to stay on avastin/cytoxin since it's almost like being on a chemo break how good I feel on it.

But, with this new research, I was happy to have possibly found some good news for someone else! I like to think that this Discussion Board is the "go-to" place for the newly diagnosed, so I post all the most recent studies and research I find here.

kayandok

lindaprocopio said:

Mine is high grade (Grade 3) also.
My cancer is Grade 3 and seems to be just about un-killable. I had my 6th round of Avastin yesterday and am now allowed to start taking Cytoxin again with it now that my WBC and RBC have come up some, but I have to take the Cytoxin now at a tiny 25 ml dose daily. My CA125 was 1500 before I started this avastin/cytoxin regime 2 months ago and is 1600 now (with no results yet from my pre-chemo lab draw yesterday), so they are trying to schedule a CT/PET for me in the next couple of weeks to see if I have further disease progression and we need to move on from cytoxin/avastin to something new. No idea new drug WHAT yet; I've run through a string of ineffective chemos. So if I'm even stable since my last scan, I'd love to stay on avastin/cytoxin since it's almost like being on a chemo break how good I feel on it.

But, with this new research, I was happy to have possibly found some good news for someone else! I like to think that this Discussion Board is the "go-to" place for the newly diagnosed, so I post all the most recent studies and research I find here.

Linda,
thanks for always giving us the latest research it is helpful! I love reading it.

When I viisited my doc in Seattle a few weeks ago, this is the list he gave me that I could still try, if I could not get the avastin. He thought that if I were in the States and/or some how could get the avastin it would be NICE, but admitted that he didn't think it would be approved for ovca by the FDA, as the results had not been as encouraging as hoped.

1. Topotecan or irinotecan
2. Alimpta
4 cytoxan
5. venblastine
6. abraxan
7. taxotere for down the road

I will be starting irinotecan after this break. I will get a scan first, to see how long of a break I can have.

k

lindaprocopio

kayandok said:

Linda,
thanks for always giving us the latest research it is helpful! I love reading it.

When I viisited my doc in Seattle a few weeks ago, this is the list he gave me that I could still try, if I could not get the avastin. He thought that if I were in the States and/or some how could get the avastin it would be NICE, but admitted that he didn't think it would be approved for ovca by the FDA, as the results had not been as encouraging as hoped.

1. Topotecan or irinotecan
2. Alimpta
4 cytoxan
5. venblastine
6. abraxan
7. taxotere for down the road

I will be starting irinotecan after this break. I will get a scan first, to see how long of a break I can have.

k

Just got yesterday's labs: CA125 now up to 2099.
Looks like my Avastin/Cytoxin days are over. My CA125 went up from 1600 two weeks ago to 2099 with my labs drawn on Tuesday. I did 6 infusions of Avastin over 10 weeks, coupled with oral Cytoxin initially at 50 mg daily, then various lesser amounts as my WBT and RBC got too low. It was a great chemo as far as how GOOD I felt all the time I was on this combo. But it didn't work at holding back the beast. Nothing seems to be able to catch this runaway train. To date taxol, doxil, carboplatin, avastin/cytoxin have all let me down.

Thanks so much for the list of drug options; I copied them to my notes for my next oncology visit. They are trying to schedule a CT/PET for me and then come together to get a new treatment plan. I am guessing we'll try topotecan next, too, although gemzar might still be an option. In either case I've already been told I'll need to get either one at 80% strength to start since my bone marrow is so lousy anymore and my platelets and RBC and WBC tank so quickly. I feel like I'm losing this battle and the pace is picking up. So WIERD since I still feel so good: still eating, sleeping, pooping, and LIVING normally! Still no sleeping pills or anxiety pills or pain pills or ANYTHING but a calcium chew and multivitamin daily.

Meanwhile we're under construction here, installing a huge new heated inground pool! I plan to have a WONDERFUL summer, and keep living large as long as I can! You ladies all do the same! (((hugs)))

Tasgirl

lindaprocopio said:

Just got yesterday's labs: CA125 now up to 2099.
Looks like my Avastin/Cytoxin days are over. My CA125 went up from 1600 two weeks ago to 2099 with my labs drawn on Tuesday. I did 6 infusions of Avastin over 10 weeks, coupled with oral Cytoxin initially at 50 mg daily, then various lesser amounts as my WBT and RBC got too low. It was a great chemo as far as how GOOD I felt all the time I was on this combo. But it didn't work at holding back the beast. Nothing seems to be able to catch this runaway train. To date taxol, doxil, carboplatin, avastin/cytoxin have all let me down.

Thanks so much for the list of drug options; I copied them to my notes for my next oncology visit. They are trying to schedule a CT/PET for me and then come together to get a new treatment plan. I am guessing we'll try topotecan next, too, although gemzar might still be an option. In either case I've already been told I'll need to get either one at 80% strength to start since my bone marrow is so lousy anymore and my platelets and RBC and WBC tank so quickly. I feel like I'm losing this battle and the pace is picking up. So WIERD since I still feel so good: still eating, sleeping, pooping, and LIVING normally! Still no sleeping pills or anxiety pills or pain pills or ANYTHING but a calcium chew and multivitamin daily.

Meanwhile we're under construction here, installing a huge new heated inground pool! I plan to have a WONDERFUL summer, and keep living large as long as I can! You ladies all do the same! (((hugs)))

Hi Linda
So sorry to hear
Hi Linda
So sorry to hear that nothing seems to be working. It is great that you are feeling so well and have decided to keep living 'large'.
All the best Jenny

pstur1

Hello Linda, nice to meet you....
I have low grade invasive serous ovarian and I too have read this and other similar articles. I assume you have low grade? Nice to meet others, we seem to be a minority. Always good to connect with like cancer peeps. Be well and thank you for the post.

Kelley

Tina Brown

Thanks Linda
Thanks for posting your latest research. It was reassuring to read the results. I'm not sure what grade mine is (will ask next doctor visit) but the fact that eventhough the cancer is chronic we can still live longer than we were originally told at diagnosis. My doctor told me that survival for PPC is 8 - 18 months. Well I am at 16 months since diagnosis and I am going NOWHERE!!!!! I have just finished my second line treatment and feel really well.

I am sorry to read about your own struggle with this beast but I have faith that the doctors will always come up with a care plan to help you. Take care love Tina xxxx

Mum2bellaandwilliam

Tina Brown said:

Thanks Linda
Thanks for posting your latest research. It was reassuring to read the results. I'm not sure what grade mine is (will ask next doctor visit) but the fact that eventhough the cancer is chronic we can still live longer than we were originally told at diagnosis. My doctor told me that survival for PPC is 8 - 18 months. Well I am at 16 months since diagnosis and I am going NOWHERE!!!!! I have just finished my second line treatment and feel really well.

I am sorry to read about your own struggle with this beast but I have faith that the doctors will always come up with a care plan to help you. Take care love Tina xxxx

Bump
I have bumbled this for our new lady best friend xxxx

Unknown

Tasgirl said:

Thanks for posting that
Thanks for posting that Linda. I do not know if I am/was high or low grade - only know I was diagnosed with stage 3. Will try and remember to ask my oncologist at my next appointment.
Jenny

This comment has been removed by the Moderator

Mwee

lindaprocopio said:

Just got yesterday's labs: CA125 now up to 2099.
Looks like my Avastin/Cytoxin days are over. My CA125 went up from 1600 two weeks ago to 2099 with my labs drawn on Tuesday. I did 6 infusions of Avastin over 10 weeks, coupled with oral Cytoxin initially at 50 mg daily, then various lesser amounts as my WBT and RBC got too low. It was a great chemo as far as how GOOD I felt all the time I was on this combo. But it didn't work at holding back the beast. Nothing seems to be able to catch this runaway train. To date taxol, doxil, carboplatin, avastin/cytoxin have all let me down.

Thanks so much for the list of drug options; I copied them to my notes for my next oncology visit. They are trying to schedule a CT/PET for me and then come together to get a new treatment plan. I am guessing we'll try topotecan next, too, although gemzar might still be an option. In either case I've already been told I'll need to get either one at 80% strength to start since my bone marrow is so lousy anymore and my platelets and RBC and WBC tank so quickly. I feel like I'm losing this battle and the pace is picking up. So WIERD since I still feel so good: still eating, sleeping, pooping, and LIVING normally! Still no sleeping pills or anxiety pills or pain pills or ANYTHING but a calcium chew and multivitamin daily.

Meanwhile we're under construction here, installing a huge new heated inground pool! I plan to have a WONDERFUL summer, and keep living large as long as I can! You ladies all do the same! (((hugs)))

still feel so good..
gotta say alot that you feel so well! I love to hear that you're having a swimming pool installed. I picture you "living large" and floating in your new pool. Gemzar along with a companion drug has worked well for keeping me stable over the past 8 months... here's to a new drug for you that your platelet count can handle.
(((HUGS))) Maria

pattysoo

Study
Low grade survivors can have their tissue samples sent to Dr. Gershenson's clinical trial and help further the research his team is doing. It's an easy process to initiate and I believe that the more samples they receive, the better and quicker their conclusions.

clk_1257

PPC vs Papillary Serous

I am 58 yrs old, have an extensive history of severe endometriosis, resulting in a complete histerectomy in my late 20's, and was diagnosed with Primary Peritoneal Carcinoma, grade 3C. My gynecology oncologist requested and received the samples and slides from the hospital where the diagnosis occurred. After review the diagnosis changed to low grade papillary serous. I will see my oncologist in a week for a full explanation and determination of my course treatment. I will say, this is confusing, making me question the entire diagnostic process. 

Everything I have read states that low grade papillary serous is a chronic disease which does not necessarily result in mortality. Whereas, PPC does not have overall long term survival and the chemotherapy treatment is different. Can anyone with more current information respond with their experiences and status? Isn't it fun to have a rare cancer?