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Peritoneal Cancer - Various Treatments

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi all: I am collecting, to have on hand for my oncologist (who is an amazingly intelligent man), the various treatments that folks with peritoneal cancer are getting or have had. I am interested in both primary and secondary peritoneal cancer treatments including surgery and various chemotherapy regimes. For example, I have not been approved for the peritoneum surgery/HIPEC. My chemotherapy started with cisplatin/gemcitibine at first but is now FOLFOXFIRI (oxaliplatin/irenotecan/5FU/leucovin) administered every 2nd week. I wear the 5FU pump for 42 hrs just after regular chemotherapy. My original cancer was gallbladder cancer that spread to the liver (surgery took out the gallbladder, its tumour, and part of the liver). Now it is secondary peritoneal cancer - I have about 6 nodules several mm in size. Because of the liver I can't have radiation.

I'd also like to know what side effects you have had and how you have managed them. For example, I manage the oxaliplatin neuropathy with L-Glutamine, Vit B6, and calcium/magnesium and have had few problems since the first disastrous treatment. For the serious diarrhea resulting from the irenotecan, I take lomotil and follow the BRAT diet. For the sweats associated with the irenotecan, I have an injection during chemo but hasn't done much. I don't have nausea. For mouth sores I have held them at bay with a rinse of club soda (or baking soda and salt).

Can you help me compile this list? There are so few cases of this cancer (except associated with ovarian cancer) here in Canada, it is an unknown field. Thanks!

Cheryl

daBeachBum's picture
daBeachBum
Posts: 164
Joined: Apr 2011

Hiya,

I was diagnosed 6 months ago with the classic adenocarinoma of unknown origin and since then they have settled on stage 4 colon cancer with lots of Osmental Caking of the peritoneum. No idea who came first. I was just about dead at U of Penn Hospital when they put in a colon stent and started me on FOLFOX. I responded miraculously and felt/feel awesome then and now. My first scan was amazing and my second is in a couple weeks. I have since had my regimen altered to swap Avastin for The Oxyplatin to mitigate the (rather mild) neoropathy symptoms I encountered. I am on biweekly chemo for life and am wearing my pump right now.

Thanks for putting this board together! There seems to be a lot more data on colon cancer than peritoneal cancer, so I'm sure this will be useful to me and others.

Strength and love to you all!

Ray

abrub's picture
abrub
Posts: 1543
Joined: Mar 2010

I was diagnosed 4 years ago with appendix cancer (mucinous adenocarcinoma), with mets to the ovary and omentum ,and lots of peritoneal seeding. My treatment was surgical debulking (appendectomy, omenectomy, TAH-BSO, triple bowel resection, parts of my peritoneum removed) followed by 5 cycles (out of 8 planned) of intraperitoneal chemo (IP Chemo) with FUDR, a 5-FU derivative. This was followed 7 of the 12 planned cycles of FolFox 6 + Avastin (5FU, Leucorin, Oxaliplatin + Avastin.) I have been NED since.

Side effects: the IP chemo was causing extreme pain (whereas most people just feel bloated.) My drs decided I was probably dealing with a chemical peritonitis from the chemo, and thus decided to discontinue chemo after the 5th cycle. (I was on high levels of narcotics for 5-7 days after each round of chemo.)

Regarding systemic chemo: I was told up front that they would never know if it was effective, and my drs were not in complete agreement about me undergoing systemic at that time. Thus when the side effects became too bad, I felt comfortable dropping it. Side effects included: neuropathy, cold sensitivity, first bite syndrome, darkening of and splitting of the skin on my hands and feet, severe Hand-Foot syndrome, and a hellishly painful anal fissure (other skin that split….) Eliminating the oxaliplatin for the 7th cycle didn’t help much – many of the side effects were from the 5FU (skin splitting, hand-foot syndrome.) I was advised to take B6 - 100 mg 3x/day for side effects; use "Udderly Smooth" cream on my hands and feet. I was given various meds to soothe the anal fissure. Nothing helped much. After chemo, I started AlphaLipoic Acid (600 mg twice/day) which was very helpful.

3 years post-chemo, I still have some residual neuropathy – tenderness in my feet (must be careful of my choice of shoes) and hands. I can’t take extreme pressure on my hands – use a sheepskin cover for my steering wheel in my car, otherwise my hands become unbearably painful.

However, I’m here to tell my tale. Overall, I’m healthy and living what would be considered a normal life (between cancer checkups.) Long term prognosis is excellent.

wanttogetwellsoon
Posts: 147
Joined: Apr 2011

Hi Cheryl,
It's good to hear from you. I was diagnosed in March although I have a long history of abdominal surgeries and bowel cancer. It's primary peritoneal cancer which has the same cell changes as some epithelial cancers of the ovary so its treated in the same way as ovarian cancer though it is a cancer in its own right. I think the full name is serous papillary primary peritoneal cancer. Anyway, I had my second cycle of carboplatin yesterday which went well although after the scan after my third treatment, Taxol might be added which will guarantee hair loss. I'm not looking forward to that, but each time I meet other people with cancer at the hospital, it gets easier for me to face that. I'm not a candidate for heated chemo in the abdomen as I have so many adhesions and there are lots of pockets.

There are so many people on here who have helped me by writing their stories. I don't feel alone and know that there are others out there who have the same issues as me. It encourages me to hear about how they are coping themselves and what treatments they're having.

I wish you well Cheryl...
Love
Sue

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

...and keep the reports coming. I am finding this extremely interesting and useful. Now I too don't feel so alone out there. I get my MRI scan on Wednesday and hopefully results on the following MOnday (after 4 treatments of FOLFOXFIRI) - here's hoping! I'll keep this discussion thread going for awhile to get as many treatment/side effects stories as I can.
Thanks all!
Hugs!
Cheryl

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Hi Cheryl,

so far, smooth sailing with carbo/taxol. Just starting to feel more tired, so PET scan due in about a week. Will let you know what other treatments follow..

AussieMaddie

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Great Aussie Maddie: My treatments are so different as I started from gallbladder cancer so it is all information I am going to pass on to the Cancer Centre here with all of these cancers are pretty rare.
Thanks!
Cheryl

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

I was diagnosed in Aug. 2010 with stage 111c PPC epithial serous. Was facing extensive surgery at time of diagnosis including a colostomy and it was decided to try carbo first. They thought taxol would have been too hard on the intestine at this time. After 4 doses of carbo I had robotic surgery for the debulking. Did not have HIPEC as I did not have a big enough incision. Dr says we can use it later if I have a big surgery. Could not do IP as I have too many adhesions. Robotic surgery allowed me to get back to chemo quickly and I did 6 rounds of carbo/taxol. I am now in remission.

Linda

wanttogetwellsoon
Posts: 147
Joined: Apr 2011

That's my problem too Linda.. the adhesions I mean.

Good luck. :) Sue

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Cheryl, you'll be a wealth of information for the Cancer Centre.
Good luck with the different treatments :)
AussieMaddie

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Thanks, AussieMaddie. I hope so as any kind of peritoneum cancer here in Canada is kind of rare, except maybe from ovarian cancer. I'm seeing two major treatment options here - taxol/carb for those with ovarian cancer and PPT, and FOLFOX and FOLFOXFIRI for those whose peritoneum cancer has arisen from gastro-intestinal sources like the colon, gallbladder, or appendix. There seem to be new or different treatments out there too or should I say additions? The one major difference I also see is that those with ovarian cancer or PPT seem to automatically get the debulking surgery. As I've said several times elsewhere, that doesn't happen here and especially for non-ovarian/non PPT cancer. Don't know why.
But hopefully more stories/treatments will come my way to summarize and post.
Cheryl

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Hi Cheryl

What does PPT stand for?

Tina

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Sorry, Tina, my sweaty fingers slipped from the C to the T! It is so hot and humid here and I'm dripping (5FU adds to it!).
Cheryl

wanttogetwellsoon
Posts: 147
Joined: Apr 2011

Cheryl...

Primary peritoneal cancer is a cancer in its own right. Doctors check the ovaries and fallopian tubes for disease and if they are clear or if they are absent, and the cancer is on the peritoneum, then they say its PPC. However, the cancer can begin on the peritoneum and move to the ovaries. It's hard for them to judge. When doctors say its primary Peritoneal cancer 'of ovarian' origin, they mean that it's epithelial which is the same type of tissue which covers the ovaries. They don't mean that the cancer comes from the ovaries, but it is why they are treated in much the same way.

That is why this board is such a good thing. If the cancer begins on the peritoneum, it's not just women who can get it. Also, having cancer on the peritoneum has implications for close relatives and how they are monitored if they have symptoms.

I didn't have debulking surgery because I have had many previous operations and there are so many adhesions in my abdomen. I'm not convinced that routine debulking is always effective for some types of cancers anyway.

My doctors did say that in the future, they might contemplate surgery to strip my peritoneum and release the adhesions but I know more adhesions will form in their places.

It'd be good to hear from people who have had peritoneal stripping.

Good luck with your treatment Cheryl. x

zambezi
Posts: 1
Joined: Jul 2011

Hi Cheryl,

Having only recently been diagnosed, I am so pleased to have found this site and people like you!

I too first presented with a very distended abdomen and extreme discomfort. A sonar showed a 10cm mass, ascites and a pleural effusion. By the time I had the CT Scan a few weeks later, the mass had grown to 14.6cm. Many doctors and tests later I had the following:
Cytology of Peritoneal fluid - Metastatic Adenocarcinoma
CA125 - 1020 and was told this indicated Ovarian Cancer - except that my ovaries and uterus had been removed 2 years ago, and the histology was clear.
One dr diagnosed Ovarian Cancer with Peritoneal Mets and wasnt very hopeful (or helpful).
The next oncologist was certain that I had Primary Peritoneal Ca (of retroperitoneum, peritoneum, omentum and mesentery) and that it was treatable.

I have had 3 chemo treatments thusfar - Carboplatin and Paclitaxel.
14 days after my first chemo I felt enormous abdominal relief and found that my abd girth had decreased by 6cm! I felt way better than I had before starting Chemo.
Treatments 2 and 3 went even better and I experienced very little in the way of side effects.
Debulking has been suggested after treatment 4.

I have to add that I am convinced that my radical change in diet has been the reason the chemo treatments have been so easy for me.
An Alkaline diet eating and drinking mainly raw veg seems to have worked wonders in helping my body cope with the chemo. A book called The pH Miracle by Robert O Young was my inspiration to try and get my body to heal itself.

I know that I have a long road ahead of me, but have every confidence that this disease can be beaten by us all.
Best wishes
Gail

menang
Posts: 35
Joined: May 2011

My 30 year old brother was diagnosed with PPC. The pathology did not indicate colon cancer (CK7 and CK20 positive), and the cancer was so wide spread that debulking is not an option. He is on the FOLFOX treatment as well, and after the first infusion felt better. He is still losing weight, but the Onc says that's due to the decrease of fluid in his abdomen. He is doing the treatment as pallative care, because surgery wouldn't be an option even if it shrunk the cancer enough due to left over scar tissue. He will have scans at the end of this month - and hopefully the chemo is doing it's job to give him some more time. I was really dissapointed in even the clinical trials out there (other than HIPEC) for this type of cancer - my husband who has malignant melanoma just advanced to Stage IV, and we can't decide which treatment to start with. I wish there were more options for my brother.

Best wishes to all of you, and again, thank you for realizing that this type of cancer deserves it's own board -

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: Only 30 years old with this thing. But because he is young he can fight it with all he's got. Surgery isn't an option for me either, not yet at least, probably because of my age and only one team of doctors do this surgery in Canada so lots ahead of me.

One major difference I forgot to mention between the PPC and ovarian type and the gastro-intestinal types is ascites buildup. I don't think (but please let me know if I'm wrong) that the purely gastro-derived peritoneum cancer like colon and gallbladder (except for appendix) doesn't result in this buildup. Which may be too bad because at least that is a noticeable symptom! I have none.
Cheryl

abrub's picture
abrub
Posts: 1543
Joined: Mar 2010

Lots of Appendix cancer people have ascites. Pseudomyxoma Peritonei is a peritoneal buildup of mucin and ascites - a common problem among appendix cancer patients. You'll see about it if you look up PMP. I didn't have ascites, but several of my appendix cancer friends did - looked 9 months pregnant, and had to be drained numerous times.

The tumors manifest differently, but it is all various forms of peritoneal cancer, whether primary or secondary (as in my case.)

Alice

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: Only 30 years old with this thing. But because he is young he can fight it with all he's got. Surgery isn't an option for me either, not yet at least, probably because of my age and only one team of doctors do this surgery in Canada so lots ahead of me.

One major difference I forgot to mention between the PPC and ovarian type and the gastro-intestinal types is ascites buildup. I don't think (but please let me know if I'm wrong) that the purely gastro-derived peritoneum cancer like colon and gallbladder (except for appendix) doesn't result in this buildup. Which may be too bad because at least that is a noticeable symptom! I have none.
Cheryl

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: Only 30 years old with this thing. But because he is young he can fight it with all he's got. Surgery isn't an option for me either, not yet at least, probably because of my age and only one team of doctors do this surgery in Canada so lots ahead of me.

One major difference I forgot to mention between the PPC and ovarian type and the gastro-intestinal types is ascites buildup. I don't think (but please let me know if I'm wrong) that the purely gastro-derived peritoneum cancer like colon and gallbladder (except for appendix) doesn't result in this buildup. Which may be too bad because at least that is a noticeable symptom! I have none.
Cheryl

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: Only 30 years old with this thing. But because he is young he can fight it with all he's got. Surgery isn't an option for me either, not yet at least, probably because of my age and only one team of doctors do this surgery in Canada so lots ahead of me.

One major difference I forgot to mention between the PPC and ovarian type and the gastro-intestinal types is ascites buildup. I don't think (but please let me know if I'm wrong) that the purely gastro-derived peritoneum cancer like colon and gallbladder (except for appendix) doesn't result in this buildup. Which may be too bad because at least that is a noticeable symptom! I have none.
Cheryl

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Hi Gail,

we have followed a very similar regime. Carb/Taxol has worked very well for me as well. Very few side effects and my CA125 has come down constantly from an initial 1300+ to 12 at last count after my 10th cycle.

Only obvious difference is our diet.

I'm an enormously compulsive eater, and I eat *everything*, and I'd have to say that my progress hasn't been the worse for it. I've also responded to the chemo very well. Having started out with "10kg of fluid in my abdomen" and, later "1.2litres in my lung" - both now drained - the chemo has kept both at bay. If a good diet helps you that's fine, but I will be grateful if I can stop eating long enough just to reflect on it. Not that I'm advocating an unhealthy diet. For many other people (perhaps who have weaker constitutions) my diet would be the worse thing they could possibly do. I'm just saying that it seems nothing is written in stone.

AussieMaddie

graymidday
Posts: 3
Joined: Nov 2010

Hi Cheryl, responding regarding my mother, we are in the US though, not Canada. She was dx Oct. 2010 as PPC. Unoperable.Mass was seen in the peritoneam, in the uterus, cervix and possibly ovaries. She did 6 rounds of carbo/taxol, finishing in Feb 2011. The next scan showed decrease in disease and her CA125 had dropped from 3600 had dx to within normal after the 6 chemos. They did debulking surgery in March 2011, followed by 3 more rounds of cabo/taxol but on more of a dose dense schedule after surgery. The pathology at surgery showed 3 places of postive cells still, including near the colon. The surgeon also said that there was alot of scar tissue on the ovaries so they are not sure where the cancer even originally came from. Could be USPC (uterine serous papillay carconma), ovarian with spread to the peritoneam, or truly PPC. It is VERY frustrating to not have a primary because some of the treatments ARE indeed different! I see many with PPC are on folfox yet that drug has never been mentioned to us by her doctors. I also know with USPC, radiation is almost always given. Radiation was never mentioned to us either. So, they are indeed treating her as ovarian, yet dx as PPC. Just thought I would share. Very complicated.

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

My pathology said it was ovarian but my ovaries were fine and tested negative. The doctor said it is PPC with ovarian origin even if the ovaries were negative. I guess the original cell came from the ovary and grew in the peritoneam. It is confusing.

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

My pathology said it was ovarian but my ovaries were fine and tested negative. The doctor said it is PPC with ovarian origin even if the ovaries were negative. I guess the original cell came from the ovary and grew in the peritoneam. It is confusing.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

It sure is! As I understand it, the peritoneum (in women only?) is composed of tissue like the ovaries. And so PPC and ovarian cancer peritoneum cancer are treated similarly. Whereas tumours on the peritoneum from another source that is gastro-intestinal (like gallbladder, colon, appendix) are treated as they would be at the source, no matter the bed. So the first type gets taxol/carb... or something similar while the gastro-intestinal folks gets FOLFOX or FOLFOXFIRI treatments. Guess it doesn't matter in the latter that the bed is not the same.
Cheryl

graymidday
Posts: 3
Joined: Nov 2010

Cheryl- do they do the different chemo treaments because the cell type is different then I am assuming? mom is serous papillary and I would guess other types of PPC steming from the gallblader, colon, etc. would not be that same cell type?

abrub's picture
abrub
Posts: 1543
Joined: Mar 2010

Yes. The chemo is chosen based on the cell type. That's why I had Folfox - a chemo that is used for colo-rectal cancers, for my appendix cancer with peritoneal spread. I also had intraperitoneal chemo of FUDR, which is another form of 5FU, the primary colo-rectal chemo drug.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

HI: I asked that very question of my oncologist when I was reading the ovarian cancer discussion threads and wondered why they were getting different chemicals than I was for peritoneum invasion. Exactly what he said - my nodules and those of abrub and others where the tumours on the peritoneum were invaded by cancer cells from other cancers like appendix, gallbladder, colon, are of different cell structure than those that originate on the peritoneum itself or from ovarian cancer. So they get taxol/carbo.... and we get FOLFOX or FOLFOXFIRI (i.e. treatments for colon cancer and other gastro-intestinal cancers). Would the treatment for ovarian/peritoneum cancer work on the gastro-intestinal derived cancers? Probably not but who knows!
My treatment is oxaliplatin/irenotecan/5FU by pump. 5Fu is also used for breast cancer.
It also appears that the surgeries are different too.
Cheryl

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