Looking for advice please! :)

Hi
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

I have a similar diagnosis
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

daBeachBum said:

I have a similar diagnosis
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

Hi.
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.

Best Friend said:

Hi.
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.

My Onc
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

AussieMaddie said:

Welcome Julesio
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

Secondary Peritoneal Cancer
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

julesio said:

Hi Abrub, we are sending the
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?

I had many unusual complications
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.

julesio said:

Hi Ray, thanks for your
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

Hi julesio
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 said:

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

chemo combination
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.