PPC vs OC w/ carcinomatosis

carolenk

Tina and anyone else interested

I was diagnosed w/ seropapillary w/ carcinomatosis at the end of August, 2010. I was not diagnosed with PPC because the pathology report found cancer in both ovaries. But since my diagnosis included "carcinomatois," I think the two conditions are very similar.

Both are the "epithelial" type of cancer. Which is supposedly one of the "bad ones" but not the worst possible. If I am wrong about this--PLEASE don't correct me because I want to believe that "it could have been worse."

I was told that I was stage IIIc grade 3 but I had pleural effusions in both lungs (not prior to surgery but after surgery when the ascites collected). So maybe I am stage IV and no one ever bothered to tell me...hahaha!

I was "kicked out" by the gyn/onc doctor who did my surgery for being non-compliant with his recommendation for chemo so I have lost my chance to talk about the operative condition any further. And I really don't understand if there is much of difference between the two conditions anyway.

I do know from the pathology report & CT scan that there were malignant implants found all over the pelvic and abdominal cavities--including on my diaphragm. Implants on the spleen & liver but not IN the spleen & liver. Stuff under my intestines, in the "gutters" around the intestines, stuff under the uterus but not in the uterus--generally a big nasty mess. The CT said something about "enhancement of the peritoneum" and the doctor wrote "carcinomatosis" on the CT scan report.

Only the peritoneum over my bladder was removed--nowhere else. The doctor called in another surgeon to do a bowel resection (4 inches of my transverse colon) and I think I bled like crazy because I needed 2 units of packed red blood cells in surgery. He said he removed "95% of the cancer" and I think they all like to say this--hahahah!

The surgeon took a picture of the omentum that was removed and gave the picture to me post-op because I was in big time denial before surgery that I even had cancer and he wanted to convince me that I REALLY DID have cancer. OK, I'm convinced now.

I bought the "Moss Report" (just google Moss Report to learn more about that) for PPC (because that seemed most appropriate for me) and can't say that it was very useful in a practical way because I ended up needed chemo anyway. However, the Moss Report gave me confidence that some of the natural treatments that I was doing had research to support it.

I think Ralph Moss has published a new book about integrative cancer treatments--using the best of both world and what science there is to support it. He is not a doctor but a researcher interested in integrative cancer treatment. I have Dr. Moss's book, Questioning Chemotherapy (1995) which is not up-to-date but was interesting nevertheless.

That's my story, what's your story?

Tina: Check your inbox for another message from me.

take care,

Carolen

Hissy_Fitz

Mine is on the "About Me"
Mine is on the "About Me" page. Just click on my photo and you can read all the details.

Carlene

carolenk

Hissy_Fitz said:

Mine is on the "About Me"
Mine is on the "About Me" page. Just click on my photo and you can read all the details.

Carlene

About Me
I didn't know I could do that.

thanks,

Carolen

Hissy_Fitz

Carolen...did you end up
Carolen...did you end up doing the same chemo regimen that you originally opted not to have? How long between your surgery and the start of your chemo? Did you have to change gyn/onc doctors?

I was so upset upon learning that my doctor had not placed an IP port during surgery and would not prescribe IP chemo for me, I seriously considered changing doctors.

Carlene

carolenk

Hissy_Fitz said:

Carolen...did you end up
Carolen...did you end up doing the same chemo regimen that you originally opted not to have? How long between your surgery and the start of your chemo? Did you have to change gyn/onc doctors?

I was so upset upon learning that my doctor had not placed an IP port during surgery and would not prescribe IP chemo for me, I seriously considered changing doctors.

Carlene

To port or not to port...
Carlene

I read your wonderful story--wonderful because it is a WONDER that you are doing so well after all that you've been through. That must say something for your fighting spirit.

I can understand why you were not offerred the IP--you had a LOT of innards removed that needed to heal for being hit with chemo! I under the impression that the IP has the most benefit from the FIRST treatment done in surgery. Although, now I am re-thinking that after reading the research about IP vs dose dense chemo...I think the dose dense chemo might be just as good as IP chemo.

I didn't get a port either and I just think that everything works out for the best so if I was meant to get a port, I would have gotten one. I decided I don't need one and that's it.

The first doctor told me that I would do carbo/taxol every 3 weeks for 6 cycles. I was going to do insulin-potentiated chemo but opted for other IV therapies instead (curcumin, ascorbic acid, fever therapy & DCA) for 3 weeks. There was 7 weeks between the surgery and the first chemo--new tumors grew back so I knew I had no option but chemo.

The doctor who is currently treating me was my "first opinion" doctor who couldn't get me onto the surgery schedule for 3 weeks. So I opted for the "second opinion" doctor who got me into surgery in one week.

When I went back to see the first opinion doctor, it was a big emotional event. Two of my sisters were there and we were ALL crying! I told the doc I was more afraid of chemo than I was of cancer and he said that there was an 80-90% chance that I would be able to be in remission after chemo. He never promised that I would stay in remission.

The second doc had me do the carbo every 3 weeks with taxol weekly but that was too much for me and now I am only on carbo alone. Preparing to do #5 next week. The CA-125 in early February was 13.2.

My daughter is here now so I must go.

Carolen

Tina Brown

carolenk said:

To port or not to port...
Carlene

I read your wonderful story--wonderful because it is a WONDER that you are doing so well after all that you've been through. That must say something for your fighting spirit.

I can understand why you were not offerred the IP--you had a LOT of innards removed that needed to heal for being hit with chemo! I under the impression that the IP has the most benefit from the FIRST treatment done in surgery. Although, now I am re-thinking that after reading the research about IP vs dose dense chemo...I think the dose dense chemo might be just as good as IP chemo.

I didn't get a port either and I just think that everything works out for the best so if I was meant to get a port, I would have gotten one. I decided I don't need one and that's it.

The first doctor told me that I would do carbo/taxol every 3 weeks for 6 cycles. I was going to do insulin-potentiated chemo but opted for other IV therapies instead (curcumin, ascorbic acid, fever therapy & DCA) for 3 weeks. There was 7 weeks between the surgery and the first chemo--new tumors grew back so I knew I had no option but chemo.

The doctor who is currently treating me was my "first opinion" doctor who couldn't get me onto the surgery schedule for 3 weeks. So I opted for the "second opinion" doctor who got me into surgery in one week.

When I went back to see the first opinion doctor, it was a big emotional event. Two of my sisters were there and we were ALL crying! I told the doc I was more afraid of chemo than I was of cancer and he said that there was an 80-90% chance that I would be able to be in remission after chemo. He never promised that I would stay in remission.

The second doc had me do the carbo every 3 weeks with taxol weekly but that was too much for me and now I am only on carbo alone. Preparing to do #5 next week. The CA-125 in early February was 13.2.

My daughter is here now so I must go.

Carolen

Hi Carolen
Hi Carolen

You can find my story on my profile too. However I will give you a snap shot account as we have similarities.

I was diagnosed Nov 2009 after I had plueral effusion in both lungs the same as you and they found malignant cancer cells in the fluid. My doctors didn't really know where the primary cancer was and it was a long 2 week wait after I had a CT scan to discover that not only did I have a rare cancer but that it can't be cured.

Because I had malignant cells in the plueral space I am stage IV. However my cells are so tiny and so widely spread my oncologist said that surgery "would be futile" and my best chance is chemotherapy. My CA 125 was 1119 so I had the 6 carbo/taxol treatments that eventually brought my numbers down to 34 in April 2010.

But by September 2010 my numbers shot up to 1280 and I was put back onto to chemo. They tried doxil but it made me so so sick and I ended up in hospital. So I went back on carbo/taxol and after 3 treatments my numbers were 161.

I am due to have treatment #5 this week.

I have just begun to accept that my life is forever changed and I have to find a NEW way to be, to live. I used to long for my "old self" back but it will never be. It has taken me 16 months to come top terms with that and I think I will be OK as long as the chemo keeps on working.

It is nice to find someone else with PPC as it is so rare. Take care Tina xx

Hissy_Fitz

C.....
I read in your
C.....

I read in your profile that your tumors grew back after surgery! Does this mean you have had a recurrence already? I'm hoping I misread it, or that you meant something else entirely. That is scary stuff!

Carlene

carolenk

Hissy_Fitz said:

C.....
I read in your
C.....

I read in your profile that your tumors grew back after surgery! Does this mean you have had a recurrence already? I'm hoping I misread it, or that you meant something else entirely. That is scary stuff!

Carlene

Tumors grew back FAST
Carlene

I don't know what to call my situation besides downright scary. I don't think it would count as a recurrence because I had not done chemo for seven weeks post op. I was terrified of chemo but ended up embracing it. So far, it seems to be working.

I took ANOTHER seven weeks off after the second cycle of carbo/taxol (bad, bad reaction from taxol) and the tumors did NOT grow back during that time. Now I am only on carbo.

Not scared anymore.

C

Hissy_Fitz

carolenk said:

Tumors grew back FAST
Carlene

I don't know what to call my situation besides downright scary. I don't think it would count as a recurrence because I had not done chemo for seven weeks post op. I was terrified of chemo but ended up embracing it. So far, it seems to be working.

I took ANOTHER seven weeks off after the second cycle of carbo/taxol (bad, bad reaction from taxol) and the tumors did NOT grow back during that time. Now I am only on carbo.

Not scared anymore.

C

I was just the opposite -
I was just the opposite - they couldn't hook me up to the bug juice fast enough, as far as I was concerned.

I had a terrible reaction to my first infusion, but after that they got easier and easier. I would have stayed on maintenance Taxol forever, if only my doctor would let me. I even tried to talk him into just 6 more months, but he wouldn't go for it.

I wish I could say I'm not scared. Being totally off chemo feels, to me, like someone pulled my safety net out from under me.

Carlene

Tina Brown

Hissy_Fitz said:

I was just the opposite -
I was just the opposite - they couldn't hook me up to the bug juice fast enough, as far as I was concerned.

I had a terrible reaction to my first infusion, but after that they got easier and easier. I would have stayed on maintenance Taxol forever, if only my doctor would let me. I even tried to talk him into just 6 more months, but he wouldn't go for it.

I wish I could say I'm not scared. Being totally off chemo feels, to me, like someone pulled my safety net out from under me.

Carlene

I know what you both mean
When my numbers shot sky high my oncologist registrar used the words agressive and when I think about it it makes sense. I only had a partial response from the chemo as the lowest my numbers went were 34. But I am rsponding really well to the chemo so I don't fel so scared any more.

Being off chemo and waiting to see what your numbers are doing is very frightening as it is all "wait and see" ans you have no control over anything. But this ism life now and we have to learn to cope somehow.

Tina xx

LaundryQueen

Tina Brown said:

I know what you both mean
When my numbers shot sky high my oncologist registrar used the words agressive and when I think about it it makes sense. I only had a partial response from the chemo as the lowest my numbers went were 34. But I am rsponding really well to the chemo so I don't fel so scared any more.

Being off chemo and waiting to see what your numbers are doing is very frightening as it is all "wait and see" ans you have no control over anything. But this ism life now and we have to learn to cope somehow.

Tina xx

Oral vitamin C
Tina & Carlene

Any thoughts on taking oral vitamin C dosed to bowel tolerance?
Bowel tolerance is where one gram (1000mg) vitamin C is taken every hour until you have diarrhea. Vitamin C is pretty inexpensive.

lulu1010

Tina Brown said:

Hi Carolen
Hi Carolen

You can find my story on my profile too. However I will give you a snap shot account as we have similarities.

I was diagnosed Nov 2009 after I had plueral effusion in both lungs the same as you and they found malignant cancer cells in the fluid. My doctors didn't really know where the primary cancer was and it was a long 2 week wait after I had a CT scan to discover that not only did I have a rare cancer but that it can't be cured.

Because I had malignant cells in the plueral space I am stage IV. However my cells are so tiny and so widely spread my oncologist said that surgery "would be futile" and my best chance is chemotherapy. My CA 125 was 1119 so I had the 6 carbo/taxol treatments that eventually brought my numbers down to 34 in April 2010.

But by September 2010 my numbers shot up to 1280 and I was put back onto to chemo. They tried doxil but it made me so so sick and I ended up in hospital. So I went back on carbo/taxol and after 3 treatments my numbers were 161.

I am due to have treatment #5 this week.

I have just begun to accept that my life is forever changed and I have to find a NEW way to be, to live. I used to long for my "old self" back but it will never be. It has taken me 16 months to come top terms with that and I think I will be OK as long as the chemo keeps on working.

It is nice to find someone else with PPC as it is so rare. Take care Tina xx

misery loves company
First let me say I am truly sorry that you all have PPC. I have it too and I must say I am glad I found you all. It can be a very lonely place to be. No one else really understands.
Here's to a good long term recovery for all of us!

LaundryQueen

Tina Brown said:

I know what you both mean
When my numbers shot sky high my oncologist registrar used the words agressive and when I think about it it makes sense. I only had a partial response from the chemo as the lowest my numbers went were 34. But I am rsponding really well to the chemo so I don't fel so scared any more.

Being off chemo and waiting to see what your numbers are doing is very frightening as it is all "wait and see" ans you have no control over anything. But this ism life now and we have to learn to cope somehow.

Tina xx

Powdered vitamin C
Just another thought: people who have cancer can tolerate a whole lot more vitamin C than people who don't have cancer. 10-12 grams sounds like a lot but that is not uncommon. The old fashioned thinking is to stop antioxidents while on chemo but now there is evidence that anti-oxidents help reduce side effects while on chemo.

I would look for it in powdered form because it would be even cheaper if you can buy powdered ascorbic acid and just put it into a fruit drink.

There is the possibility that it might help so see what your doctor thinks of it.

Hissy_Fitz

LaundryQueen said:

Powdered vitamin C
Just another thought: people who have cancer can tolerate a whole lot more vitamin C than people who don't have cancer. 10-12 grams sounds like a lot but that is not uncommon. The old fashioned thinking is to stop antioxidents while on chemo but now there is evidence that anti-oxidents help reduce side effects while on chemo.

I would look for it in powdered form because it would be even cheaper if you can buy powdered ascorbic acid and just put it into a fruit drink.

There is the possibility that it might help so see what your doctor thinks of it.

Clinical trials (Mayo
Clinical trials (Mayo Clinic, for one) have shown that oral Vit C, even at high doses, is ineffective in treating Cancer.

Carlene

carolenk

Hissy_Fitz said:

Clinical trials (Mayo
Clinical trials (Mayo Clinic, for one) have shown that oral Vit C, even at high doses, is ineffective in treating Cancer.

Carlene

Mayo Clinic clinical trial on ascorbic acid for cancer patients
FROM: Alternative Medicine Review 1998 (Jun);3(3):174–186

In a personal interview with Dr. Ewan Cameron, he said of the Mayo study:

"They give a drug in tolerable doses for a particular period of time and then suddenly stop it. If they don't see significant results they go to the next drug and so on. That's not how to test vitamin C. We're talking about a totally different therapy. We're talking about something that supports the patient for the rest of his life, not for ten weeks, which was what the Mayo clinic did. Then they stopped it abruptly and gave them 5FU."

Here is the link to more information: http://www.chiro.org/nutrition/ABSTRACTS/Ascorbic_Acid_in_the_Prevention.shtml

Clinical trials are tricky to evaluate and extremely expensive. You would be shocked at how data can be manipulated to favor the intended outcome. It happens all the time.