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Looking for advice please! :)

julesio
Posts: 24
Joined: Jun 2011

Hi Everyone. I'm new to the site. My partner was diagnosed with colon cancer in february he is 40, he had a bowel obstruction and was rushed in for emergency surgery where they found some tumors in his bowel along with this peritoneal studding which they didn't remove. He has now had chemo every fortnight for the last 14 weeks and then he had a scan yesterday where they have said that the chemo was working on the tumors but not on the peritoneum. Does anyone know anything about this and why might it not work when other people on here seem to be doing quite well with the condition. It is really scary and am just looking for help and to see if anyone knows how long you can last with this condition, from what I have read online the prognosis is terrible. I have read about the HIPEC treatment and hope we can get him onto this. Thanks everyone.

stella65
Posts: 150
Joined: Feb 2011

Sorry to find you here but just wanted to say Hi to you, I can't really help with advice as such but I know how scared you feel and the info on the internet about this cancer is not exactly encouraging, just remember that everyone is an individual case and try to be positive, as they have said that the chemo has not worked on the peritoneum are they going to try something else? Make sure you get as much info as you can, I have found you have to ask or you don't get told much. Lots of love to you and your partner X

julesio
Posts: 24
Joined: Jun 2011

Hi Stella, thank you for your kind reply. They are going to try a new chemo on it now to see if that works. I just feel really worried all the time. It feels like there is nothing I can do to help :(

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

directly into the peritoneum. I had that at Memorial Sloan Kettering for appendix cancer that had spread to the peritoneum, after a complete tumor debulking from the peritoneum, as well as wherever else I had tumor. I also had systemic chemo (Folfox), but the drs weren't convinced it would do me any good. Mine was a low-grade mucinous adenocarcinoma.

julesio
Posts: 24
Joined: Jun 2011

Hi Abrub, we are sending the files to a doctor who does the procedure, we are in the UK and I think the criteria for getting this done is very strict so I don't even know if my partner will be accepted for it. I hope he is. How did you find the operation?

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

I did not have the surgery with the HIPEC, but I had significant debulking. The first few days post-op, I was doing great, but then I developed a wound infection and my bowels stopped working (ileus) probably from the IP chemo that was administered about 48 hours post-op. My 7-10 days in the hospital were extended to 28 days, and even then, my dr didn't want to discharge me. However, he was rightly worried about my sanity at that point (and his safety!) so he let me finish recovering at home. The surgery is difficult, but depending on the extent, and individual responses, you can be home in 7-10 days. With a total bowel shutdown that lasted 3 weeks, they couldn't discharge me.

In terms of finding the dr, I did research on the internet, as did my primary care and my oncologist. My primary care was able to get me an appointment with Dr. Paty, a colorectal oncologic surgeon at Memorial Sloan Kettering in NYC, and he oversaw my treatment. I feel very fortunate to have fallen into his care. The other specialists I met with didn't work for me.

The process is no fun, but it is doable. As someone who tends to be something of a wimp, everyone was surprised at how I handled my cancer surgeries and treatments. We learn of strengths we didn't know we had. We do what we have to do because we have no choice. And then, eventually, life settles down again. I'm now living a very full and active life.

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

Hey Julesio,

I was originally diagnosed with stage 4 Adenocarcinoma of unknown origin with peritoneal caking and a large tumor outside my colon that was severly consticting it in January of this year. I am on biweekly chemo too(for me "for life").

My 3 month scan showed substantial shrinkage of the large tumor and some lessening of the peritoneal caking. The second showed further shrinkage for the tumor and no change for the perioneum. In both cases my onc at Penn (a very highly regarded cancer center in the US) was extremely happy with the results.

I'm not an ostrich hiding my head in the sand, but I trust my doctor a lot and let her do most of my medical worrying and I stay busy living my life. If she can get a job there, then she automatically has good creds.

The way I understand it is that peritoenal cancer responds less to chemo because it has a lesser blood supply than organ tumors. Peritoneal tissue is pillowy and is very similar to ovarian tissue, hence why we see a lot more women than men on this board. Peritoneal cancer for men was described to me as not being extremely dangerous in itself. It presents with ascites as its primary symptom which sucks, but is treatable. The danger rather is that the peritoneum is adjacent to a lot of other organs. For me (and probably your partner) its a matter of keeping his colon tumors and peritoneal caking in check and delaying or preventing a spread to lungs, liver or other organs.

Don't make yourself crazy with the prognosis times. Take heart that the dire numbers you see are years old and great strides have been made since then and that your partner is much, much younger (and presumably stronger) than the male cohort for colon and peritoneal cancers. I was days or weeks away from dying in January, and now I feel awesome. The pump sucks twice a month and I am banged up a few days afterward, but it's a small, small price to pay in my mind!

Strength and love to you both,

Ray

Best Friend
Posts: 222
Joined: May 2011

just wondering if u had Dr.Cristina Chu at the University of Penn. She is a gynecological oncologist but she did my moms debulking. Amazing doc. If u are in her hands than i8i would be very relaxed and trusting. She did so much for my mom.

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

My oncologist is Ursina Teitelbaum. She is a Gastro specialist. Take it from me, only being able to take the odd "spaghetti poop" every few days for weeks on end can really ruin your day :-p

She is awesome! and her staff, especially her nurse practioner Lori are wonderful. She has a really caring bed side manner and will answer any question you have frankly. She is much less worried about my peritoneal caking than the tumor near my colon. I'm considered "treatable, but not curable", but feel great and quickly made peace with it...

If anyone is interested, paste the URL below in your browser for a short video of her talking about Penn and her practice.

All the best!

Ray

http://www.youtube.com/watch?v=nSzjzF6cviY

julesio
Posts: 24
Joined: Jun 2011

Hi Ray, thanks for your message. You are the first person i've spoken to who I think has very similar to my partner, they said his is from the colon though, it's a mucinous adenocarcioma also with poorly differenciated cells. I know there are a few tumors about a few inches each and the peritoneal seeding. I'm in the Uk and not many places do the hipec but they seem to be quite strict with who they give it to also. Were you not considered for this? It's great you've had a good response with the folfox. My partners actual tumors had slightly shrank with the treatment but the peritoneal stuff was getting slightly bigger and he has some ascites now, but they thought that this was a good enough reason to take him off the folfox and look at other treatments. Just now he isn't feeling too great but his doctor is putting it down to gastritis, he has some abdominal pain under his stomach. Hope you are good. Jules

belindahill's picture
belindahill
Posts: 142
Joined: Jan 2011

My husband is 54, he has peritoneal cancer, secondaries to colon cancer dx Aug 2010.
He is on chemo to treat the ascites and doing very well, they say that his is treatable but not curable. Chin up hope all goes well for you. We also live in England.

julesio
Posts: 24
Joined: Jun 2011

hey Belinda, what is it they are giving your husband? have they looked into surgery for him?

belindahill's picture
belindahill
Posts: 142
Joined: Jan 2011

Hello julesio, my husband has 4 rounds of iv oxaliplatin and avastin, and oral xeloda at home 3 tabs in morning and 3 at night. He has done 3 rounds and one to go. When we visited onc in July before chemo, he said surgery was not a option.

Best Friend
Posts: 222
Joined: May 2011

What chemo is he getting? I am the first person to tell you to stay off the internet when it comes to looking up statistics and info on PPC. I looked it up for a month and cried and cried and than finally i came on here and everyone gives advice that u need from experience but without the definite death sentence bull.
I will just say my mom was basically told she was gonna die. Her's started in the ovary. She had it in her stomach, liver, colon, omentum, and spleen and now after chemo and surgery she only has it on her spleen. Her numbers recently went up but gees, look how much the doc helped my mom. I advice getting second opinions. Even a third or fourth one. My mom gets treated here in our hometown. They are affiliated with Penn. And than her other doc is Dr. Chu at the University of Penn. Great doc. I am just saying, i was where u are at just scared and feeling defeated. Don't give up!

julesio
Posts: 24
Joined: Jun 2011

hey, my partner was on folfox, his is colon cancer with peritoneal seedlings. We are in the uk.

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

The only thing I can think of Julesio is that it's possible that different chemo treatments help different tumours. I like what was said about the HIPEC though I don't really know of it happening here in Australia. It probably is, but I don't know. It's never been proposed for me. I just wanted to tell you that I responded very well to the chemo combination of carbo/taxol and I know of others with peritoneal cancer who responded well to the same combination.

It's just one more thought to add to the others.

I will keep your partner in my thoughts.

Take care,

AussieMaddie

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

Hi: As far as I know, the carbo/taxol chemo doesn't work well for secondary peritoneal cancer and not for men. But you never know! I have secondary peritoneal cancer (from the gallbladder). The first treatment I had was cisplatin/gemcitibine (12 cycles) - didn't get rid of the peritoneum nodules but they didn't increase in number or size either. Now I'm on oxaliplatin/irenotecan/5FU, finished 7th cycle. A new MRI next week will determine where we go from here. But my last MRI after the 4th cycle of this regime showed no increase in size or number of nodules on the peritoneum. My tumour was removed along with the gallbladder and part of my liver April 2010; the nodules were not cut out but were tested and found to be malignant. This chemo combination has apparently worked on some patients. Maybe I, too, will be treatable for life?
Cheryl

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

"Maybe I, too, will be treatable for life?"

I hope for you it will be a long one, free of pain!

Love,

AussieMaddie

julesio
Posts: 24
Joined: Jun 2011

thanks for your message maddie, my partner has primary colon cancer so not sure if they give that same chemo for that?

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

Hi: As far as I know, at least here in North America, the most common treatment for colon cancer seems to be some combination of oxaliplatin, irenotecan, 5FU (pump for 42 hrs following chemo)called FOLFOX or FOLFIRI depending on the combination. Even though I don't have colon cancer (the periteneum nodules seeded from my gallbladder cancer), my oncologist is trying this chemo regime as it has been shown to be somewhat effective in some patients. Hope this helps.
Cheryl

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

Hi all: I have had 7 treatments (of oxilaplatin/irentocan/5FU)and like Da Beach Bum the latest MRI (last week) showed no progression of the cancer anywhere, some reduction in the peritoneum nodules both in size and number - I have only 5 now), and a possible disappearance of once of the nodules. So it may be that this chemo regime works for secondary peritoneum cancer! My oncologist is ecstatic as this hasn't been tried yet in Canada as far as I know for secondary seeding from gallbladder cancer. He wants to continue this chemo regime and is recommending me for the surgery that removes the peritoneum (done only in Calgary in Canada). I got turned down last year because it didn't appear that the chemo regime of cisplatin and gemcitibine was working.
Cheryl

julesio
Posts: 24
Joined: Jun 2011

Hey Westie that is amazing, good news! Is it a trial your on? Do they just do one drug one week and another the next or something?

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

Hi Julesio: No, I'm not on an official trial but my oncologist is a reknowned chemical oncologist here. My first treatment (Sept 2010 to March 2011) was cisplatin/gemcitibine which I tolerated very well. It may have stalled any new peritoneum nodule growth but didn't shrink anything. He did a lot of research and we started on the folfoxfiri treatment (oxaliplatin/irenotecan/leucovin/5FU pump) in May. I get all 3 of the chemicals at once every two weeks and the pump is removed after 42 hours. We don't know if one drug is best or it needs all three. As far as I know it hasn't been done here in Canada for secondary peritoneum cancer but did show some success in the USA. It is a tough regime as you know. My problem is the cost as I have to pay for the oxaliplatin (not covered by the government or my medical plan at the university - but some people get it covered if they have colon cancer which I don't (gallbladder cancer). He is recommending me for the peritoneum removal surgery in Calgary - scary surgery it seems to me.

A very good friend of mine here is a catalan. Her family escaped during the Spanish Civil War to Mexico and Cuba. She does research on the stories of the old soldiers who fought during the war.

Cheryl

MarisaUK54's picture
MarisaUK54
Posts: 41
Joined: Aug 2011

Hello..

I am quite new to this site but am interested in all comments made here as information generally seems a bit scarce. I was intererested in reading what you'd written; can the peritoneum be removed then?

Thanks,
Marisa

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

Hi Marisa and welcome.

It's a good question. I don't really know that answer, would like to know too. It's probably a good idea to ask it in a new thread so I will start one. That way it will likely get more attention and answers.

So look out for the new thread "Removing peritoneum?"

For now,

AussieMaddie

MarisaUK54's picture
MarisaUK54
Posts: 41
Joined: Aug 2011

Hi...

Ok, thanks Maddie, I'll certainly look out for that.

All the best,
Marisa

wanttogetwellsoon
Posts: 147
Joined: Apr 2011

First, I'm sorry to hear about your partner's news. Second, whilst the internet is great for information, I don't think it's good to rely on it completely particularly when it comes to prognosis. You haven't said whether the bowel cancer and the peritoneal cancer are one entity or they are different types of cells. If they're different, it might explain why the peritoneal cancer isn't responding as well. Perhaps his oncologist will change the mix of the chemo. The prognosis depends on the type of cancer a person has, whether it's aggressive, what, if any, metastatis there is, to what extent it has spread within the local area and then how any individual responds to treatment. When I looked on the internet at my peritoneal cancer, I was shocked at what I was reading. Then I learned that the grade of my cancer is 1. It's slow growing and more like the original cells it comes from than more aggressive tumours. That said, the cancer is well advanced and a lot of damage has been done to my abdomen which I find scary to say the least. You'll find lots of information on the information on HIPEC treatment. The trouble is with cancer is that sometimes, it's best not to operate as this can cause further difficulties. HIPEC isn't the easy option and the treatment can be more difficult to bear than IV chemo. The drug seems to get to where it needs to be on the plus side. I can't have HIPEC because my organs are stuck together with adhesions and the adhesions themselves have tumours on them. Apparently, there is no blood supply to adhesions and tumours there aren't going to respond at all. My own cancer is managed palliatively in that the chemo is for symptom relief and not a cure. When I was told in March that the cancer was advanced, I thought I only had a short time left. Now I've been told that according to the latest tentative research, some kinds of tumours of the peritoneum don't act in the same way as ovarian cancers and, in fact, rather than the two cancers being alike, they are, in fact, separate entities. More research is needed into peritoneal cancer to track the disease so that proper drugs for the job can be developed. I hope this helps. :)

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

Hi: Sorry, putting this response at the end as I get confused when new items are placed earlier. Sorry! Anyways, yes the peritoneum can be removed surgically. The surgery is called peritoneum stripping. The surgery to remove as many tumours in the abdominal cavity as possible before that surgery is called debulking. As far as I know. The omentum is part of the peritoneum, the fatty part that hangs over the stomach like a blobby curtain. It too can be removed. As far as I read, the peritoneum can grow back though. Not sure what holds in all the things in your abdomen once the peritoneum has been removed surgically though!
I, too, am being treated chemically (IV type) for peritoneum seeding (oxaliplatin-irenotecan-5FU pump) although my oncologist wants to get me into the surgery.
Cheryl

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