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Peritoneal mets

SharonVegas's picture
SharonVegas
Posts: 189
Joined: Feb 2012

I've had these mets since December 2011. I've been on different cocktails of chemo and am currently on a trial drug. If you have these mets, can you answer a few questions:
what kind of pain do you experience?
what do you take for this pain?
do you have fluid build up on your abdominal cavity?
if yes, how does your doc treat this?
Thanks so much in advance. This discussion board has been a tremendous help to my wife and I.
My best,
SV

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

But I bump it up to see if somebody else can do it!
Hugs.

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

pepe you are so kind to do this for her!!!
a big hug to you!
judy

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

They are common with my form of the disease. Treatment is generally a surgical debulking of the mets, removal of fluid (if that's an issue - it wasn't in my case, it is common however.) Then some form of IntraPeritoneal chemo (IP chemo) - either HIPEC or straight-forward IP.

You'll need to see a specialist who is familiar with this kind of treatment for these mets. Also, if there is lymph node involvement/other systemic spread, this may not be an option.

I go to Memorial Sloan Kettering. MD Anderson and others also treat with forms of IP chemo.

Good luck.
Alice

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

hi Sharon,
Alice has given you good advice. from reading her posts to others, she always does.
i was originally dx dec 2010 with stage 3 sigmoid cancer. i did 12 tx of folfox6. ended july 2011. i had 1 colonoscopy in 2003 & was told to come back in 5-10 yrs. thank God i went back in 7. after tx my onc. was pretty sure cancer would not return. june 2012 i got the news of metastatic cancer. i was dx with tiny multiple peritoneal mets. also 2 abdom., a small liver,& 6.5 cm rt ovary tumors. peritoneal biopsy confirmed it is all colon cancer. i also have a left hip area they can not decide if it is cancer but the chemo will go to that area so no need for a biopsy now. i have had no pain or swelling. i am doing folfiri with avastin. if after 6 tx avastin is not working i will do folfiri with erbitux. i went to ohio state university & university of cincinnati,ohio. besides my onc, i have had the opinion of 3 medical onc & 3 oncol surg. docs. they all agreed that i do 12 tx of chemo then be evaluated for surg, debulking & hipec ( as i am told it is the moas-mother of all surgeries). then a 3 month heal time then more chemo. be sure that you have been kras tested. if you are kras positive there are some chemo drugs that will not work. i am kras negative wild type which means i have more options. some places offer trials that other places do not have so in the future you may need to shop around. i live in indiana & i keep up with indiana university. ( i graduated from there-dental hygiene- so i am always interested in the dental & medical news) they are doing some wonderful cancer work. i was going to go there but after 3 wks of testing & doc visits & tx was agreed upon i had no need to go. i am closer to cinti & columbus. plese keep us posted.
you are in my prayers
judy

SharonVegas's picture
SharonVegas
Posts: 189
Joined: Feb 2012

Thanks Judy. I have had extensive molecular testing on my cancer tissue. I had the KRAS testing immediately when I was diagnosed. KRAS negative wild type. Unfortunately, this does not mean more options in my case. With the exception of 5FU, none of the traditional colon cancer chemos and biologic agents are recommended based on molecular testing. Unfortunately, over the last year and a half, I did receive several of the agents and just had the extensive molecular testing done this past May. We did this because my Doc was shocked that the cancer keeps progressing. Wild type is suposed to be receptive to more options right? Not in my case. At least now we know what not to use. I'm currently on Morab4 phase II clinical trial that started 3 weeks ago. It seems promising. I truly appreciate your input. Stay strong and my best wishes to you.
Sharon

mmadorsk's picture
mmadorsk
Posts: 8
Joined: Aug 2012

Dear Sharon,
I would like to ask where you did molecular testing on your cancer tissue? Did you send it to a CA lab? My 73-year-old Mother is stage IV with multiple liver mets and some peritoneal lymph node involvement. She's had six rounds of 5FU, fusilev and Avastin so far, but her CEA is up from 3.5 at the start of chemo to 6.2 after 5 rounds. While CEA may mean nothing, it may also mean that she is not responding to the chemo. We are going to get a pet scan tomorrow. She is not yet having any symptoms though and is feeling fine 4 months after colectomy. Her overall bloodwork is within norm -- liver and kidney function are still normal, as well as her blood counts. Needless to say, I don't want her oncologist to experiment on her with various chemo regimens. By the way, how is that Morab4 trial working for you? My very best wishes to you.
Marina

SharonVegas's picture
SharonVegas
Posts: 189
Joined: Feb 2012

Hi Marina,
I'm so glad that your Mother is feeling fine and not having any symptoms. I'm sure having a great daughter has a lot to do with it :-)
Knowing what I know now, I would have asked for this testing right away at diagnosis and I would have asked for the core biposy vs the fine needle. I've had 4 CT guided biopsies since March 2011. Twice samples were taken from my sacrum and twice from lesions on my peritoneal sac. Why twice each you ask? Because both times they did a fine needle biopsy first then followed up with a core needle biopsy. I've learned so much, if only we could go back and get a do over :-)
Anyway, my latest core sample was sent to Caris Life Sciences in May 2012 and they did the analysis and provided quite an extensive report called Caris Targe Now report.
In my response above, I said I was KRAS wild type, well I WAS in 2011. That was the sample from my sacrum. I never looked at the most recent KRAS testing on my sample from my peritonium. That sample it KRAS mutated. I'm glad you asked or I may not have noticed that. I'll discuss that with my onc tomorrow. From Jan 2012 - June 2012 I was given Folfiri+Cetuximab. According to the report, two of the agents in this cocktail would provide no clinical benefit for me. During that time my CEA went from 3.8 to 31.6 and the peritoneal mets grew in size. My scaral met remains stable (of course we did radiate the heck out of that for 5 weeks in 2011)
Morab4 seems to be going great. I'll have a scan in 4 weeks and will know more. I have a thread going that I post to once a week with updates. I wish your Mother the best on her journey. Take care of her.
SharonVegas

mmadorsk's picture
mmadorsk
Posts: 8
Joined: Aug 2012

Hi Sharon,

thank you so much for your response and kind wishes. Unfortunately, I am working overseas, so my parents didn't tell me Mom was sick till after she had her surgery! So no luck with having her primary tumor tested! They tried to somehow protect me and hoped that surgery was going to be the end of treatment. As soon as I found out I rushed to them and spent 3 months arranging various treatments. My mother is on a rigorous herbal protocol from the Mederi clinic in Oregon, run by Donald Yance. I just gave up trying to convince our oncologist to accept that, since he says no to anything he didn't hear about. Thankfully Mederi people know a lot about herb interactions with chemo. And she does acupuncture twice a week with a great Doc of Oriental Medicine. I attribute her continued well-being to the herbs mostly. She's been taking them for over 2 months now and her blood counts have remained within norm across the board. Once she slipped slightly but then things went back to normal, which usually doesn't happen on chemo. This means her immune system is fighting. The herbalists are telling us it takes at least 6 months for the herbs to really kick in and hopefully put a pause on things. They did not promise a cure but said we could get years of quality life, based on their observation of other patients with similar conditions.

Our oncologist is against any type of radiation and he has not yet run a KRAS test, saying that he would about 3 months into treatment. At this point, I'll wait for pet scan results, which we should have by the end of the week. Perhaps her CEA jump from 3.5 to 6.2 within two months of treatment is not that radical. After all, she had her 3.5 reading when things were supposedly growing like crazy between surgery and chemo/herbal. And we did not have a baseline pre-surgery CEA unfortunately. I am thinking about theraspheres, HIPEC, HAI pump. I'm also thinking about hyperthermia with low dose chemo and may take mom to Dr. Ralf Kleef's clinic in Vienna, Austria, for that.

There is a trial open at the Jacksonville Mayo clinic for Morab4, but I'm so worried she'll end up on a placebo and lose time...
I wish you the very very best of luck and will keep in touch.
Marina

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

my original tissue/tumor from dec 2010 is being saved for 5 years at the hospital where my surgery was done. sample specimens were taken from it for my genetic testing. have your Moms' oncol check with the hospital. hopefully they have it saved.
judy

mmadorsk's picture
mmadorsk
Posts: 8
Joined: Aug 2012

Thanks Judy,

I will inquire about that and see if those specimens can still be used. I read that labs that do chemosensitivity testing need fresh tissue samples and ship their own packing materials. But I will definitely double-check! Many thanks!
Marina

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