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Peritoneal carcinomatosis

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Peritoneal carcinomatosis

Postby Yellowbird » Wed Mar 07, 2012 6:21 pm

Anyone here dealing with peritoneal carcinomatosis? I was dx with this in May 2011.

Have had cytoreduction with HIPEC in august. Now having adjuvant chemo, folfiri plus avastin.

Would love to hear from others going through this.

Laura
Dx stage III July '10
Colon resection August '10
8 rounds Folfox
dx stage IV peritoneal carcinoma May 11
HIPEC Aug 11
Mop up folfiri with avastin
July 12, liver mets multiple metastases
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Re: Peritoneal carcinomatosis

Postby RixInPhx » Wed Mar 07, 2012 9:37 pm

That is my diagnosis, since 6/10.
Plus a skull met, and now mets to the R lung.

My carcinomatosis is spread mostly across the front of my belly, about 4"h x 12"w x 3/8" thick between naval and ribcage, with a cucumber-like projection at the left and much around the colon.
Inoperable, too much involvement for HIPEC or other surgery; chemo-for-life.

I know this wasn't of much help, I wish you the best on your journey.

HTH, Rick
M 61, Dx 6/10 CRC st 4, unknown primary CEA 843
2 kg peritoneal mass, met to skull; no surgery
Various regimens of all CRC chemo drugs
Mets to lung 8/11 CEA 135
Folfiri/Erb/Ava 12/11 CEA 320
No progression 5/12 CEA 192
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Location: Phoenix

Re: Peritoneal carcinomatosis

Postby Yellowbird » Wed Mar 07, 2012 10:06 pm

Rick,

Did you ever have a consult with a HIPEC doctor? I really believe mine is a miracle worker.

How are your treatments going? What side effects do you have with erbitux?

I hope you have a good oncologist and support system. Nobody should have this awful disease.

laura
Dx stage III July '10
Colon resection August '10
8 rounds Folfox
dx stage IV peritoneal carcinoma May 11
HIPEC Aug 11
Mop up folfiri with avastin
July 12, liver mets multiple metastases
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Re: Peritoneal carcinomatosis

Postby SoConfused » Wed Mar 07, 2012 10:11 pm

Yellowbird - were you told originally when dx'd at stage 3 that you would be at high risk for peritoneal spread?

Do you have signet ring type CC?

I am always curious as to who should be watched more closely for possible peritoneal disease.

Thanks ... and all the best with your treatments.
Stage IV CC
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Re: Peritoneal carcinomatosis

Postby RixInPhx » Wed Mar 07, 2012 10:47 pm

I'm on Medicaid, which won't cover HIPEC in any case, nor the costs of second opinions when there's really no question.
And there just isn't any question, given the extent of this beast as anybody can see on the films.

Treatment is great at the present, on a downward trend with CEA and doing OK with housework, light yardwark, errands.
Every time they've tried to 'cheapen' my treatment by backing-off to less-intense drugs, The CEA (and ascites) has increased, so I'm not up for that game any more. GIVE ME ALL YOU'VE GOT!!!
I qualified for a couple trials a couple months ago, but none of them has as much promis eas what I'm currently receiving from my super-cocktail, so I'll stick with it 'til it's ineffective or crippling

Speaking of which, I did fine with the regular 14-day Erbitux, and I think it was working OK.
But I wasn't producing/sufferring as much rash as most people do, and my onc is of the belief that more rash is better, so 6 weeks ago we increased it to weekly Erbitux at regular dosage rate.
I have much chafed/peeling skin from fingertips, skin cuts at leading edges of nails and at knuckles, and further neuropathy of fingerpads (I can't feel anything, even fire, so it has become dangerous).
It finally got to me so much that I was 'excused' from yesterday's Erbi-only infusion after I put my foot down.

I think I'll be fine back on the 'regular' 14-day cycle of Erbitux (along with the Folfiri + Avastin).

The Erbitux (along with its cousin, Vectibix) really depletes the magnesium level (and concommitantly the potassium and calcium levels), so I take magnesium supplements.
Avoid dehydration and low electrolytes.

My onc is very good and so is the county oncology clinic; it's directly connected to the hospital and I've gotten excellent care.
I have a strong support system of friends, neighbors, associates, and nearby siblings.
This is an awful disease, and I can't imagine facing it alone.

Peace, Rick
M 61, Dx 6/10 CRC st 4, unknown primary CEA 843
2 kg peritoneal mass, met to skull; no surgery
Various regimens of all CRC chemo drugs
Mets to lung 8/11 CEA 135
Folfiri/Erb/Ava 12/11 CEA 320
No progression 5/12 CEA 192
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Re: Peritoneal carcinomatosis

Postby Cancerislame » Thu Mar 08, 2012 1:57 am

Hello,

I have peritoneal carcinomatosis. Today is my one year anniversary from my original emergency colon resection after my gi doc couldn't get past my mass during my colonoscopy. I did 9 months on a clinical trial of weekly erbitux and biweekly folfox with the 48 blurry pump. I have been off 6 weeks while waiting for my PET (tomorrow) and thaving second and third opinions. I am meeting with a HIPEC surgeon in San Diego on Tuesday. How was that for you? I am very nervous about the decision (if I end up a candidate of course).

Jennifer
3/11- IV 4.5cm Lvr 1 of 13 LN@30 yo,
4/11-1/12 FLFOX/ERB.
5/18/12 HIPEC-rt ovary, omtm rmvd.
6/24/12 smll Bwl Obst Srg
8/20/12 Xlda 5 on wknds off 1 off wk off
2/5/13 X. 5 on 2 off,2 wks off
Cancer free since 5/18/12...over a year on mtc chemo
CEA 1.2
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Re: Peritoneal carcinomatosis

Postby Yellowbird » Thu Mar 08, 2012 10:38 am

@ soconfused, I was not told I was at high risk for peritoneal spread....and I have no idea about the signet ring thing...what is it?

My surgery was perfect...I would go to the best if I were you, don't just choose who is closest, the surgery is the mother of all surgeries and you want the best working on you. I went to Armando Sardi in Baltimore (I live in Texas) and he does 2 to 3 of these a week so he does not have complications like other surgeons.

He did tell a friend of mine, who used him as well,that if we had come to him when we were first diagnosed we would have had a better outcome. A mushroom thing (Kept in the dark, fed bullsh**t, you get the idea)....

Sheeple. I am outraged
Dx stage III July '10
Colon resection August '10
8 rounds Folfox
dx stage IV peritoneal carcinoma May 11
HIPEC Aug 11
Mop up folfiri with avastin
July 12, liver mets multiple metastases
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Location: Texas

Re: Peritoneal carcinomatosis

Postby janklo » Thu Mar 08, 2012 11:57 am

You'd know if you had signet ring cell pathology. It is a type of cancer, very rare (usually 1% of cases) and very very aggressive. It's usually associated with gastric type cancers. When our daughter had surgery, they told us they felt her cancer started and grew to a fist-sized tumor in about 2 months time - very fast growing!

Our HIPEC surgeon also told us that he thinks our daughter was "understaged" at the time of diagnosis. He felt the pathology was not done on cytology (fluids) from her initial surgery and those would have showed signet cells and then more aggressive treatment should have been done. He has treated many patients with signet cell pathology.

I read a blog of a 17 year old girl from Ft. Worth, Texas who was diagnosed with signet cell colon cancer about a year ago. After chemo, her parents opted to take her for HIPEC and no disease was found, but they went ahead and did the heated chemo. Hopefully by doing that - getting AHEAD of the cancer, they've improved her odds. Otherwise, they were told signet ring cell in teens has a very high fatality rate.
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012
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Re: Peritoneal carcinomatosis

Postby stephh » Fri Mar 09, 2012 8:58 am

Hi Yellowbird! It's good to see you are NED still after HIPEC. I had HIPEC done this past December, and handled it well, I have to say. Thanks to God for that! I am hoping this got rid of any cancer....I have my 1st follow up CT scan this month on the 27th, and am hoping all is clear. But I'm still scared, despite it being clear, because as we know, sometimes those scans arent' fullproof...and my first scan was not. It was found during an exploratory surgery to see if there was anything there. So I am so glad I got that exploratory done, or else I'd be living with it, and not even know it. :roll:
My surgeon and onc both agreed I should not do any preventative chemo after HIPEC,,,,and I'm REALLY hoping this was the right decision. They thought my body could use the break, and also said since I did systemic chemo prior to HIPEC, that it would've protected the rest of my body from spread, and the HIPEC would take care of the peritoneal area. I'm hoping this is true. I think SkiFletch said he had no chemo after HIPEC, and he is still NED,,,so hopefully I will be as lucky. :D
Are you going to be on chemo for a certain amount of time, and then go off of it? Or will you continue indefinately?

Take care.
2/9/11 Dx 33 yrs old-Stage IV
3/1/11 LAR-peritoneal met found
4/1/11 5 rds folfox/avastin
6-7/2011 radiation/xeloda
8-9/2011 3 rds folfox
10/12/11 mets-peritoneum
12/19/11 HIPEC
5/4/12-cervical mets
6/8/12-Hysterectomy/liver resection/HIPEC #2
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Re: Peritoneal carcinomatosis

Postby Yellowbird » Fri Mar 09, 2012 11:29 am

...I'm on folfiri plus Avastin. Not feeling good about the decision.

Had a PET scan which shows 4 spots on my liver a week ago... was told there are false positives and could mean its not cancer rearing its ugly head again...

My surgeon recommended adjuvant chemo. But, had 3 clear scans BEFORE starting folfiri...now possible spread to my liver? What the heck? My onc told me the results this Monday. I was scheduled for another chemo that day and walked out without taking it.

I'm going to do an MRI soon to determine what the spots are. In the meantime, NO MORE CHEMO for me.

Advice?

Laura
Dx stage III July '10
Colon resection August '10
8 rounds Folfox
dx stage IV peritoneal carcinoma May 11
HIPEC Aug 11
Mop up folfiri with avastin
July 12, liver mets multiple metastases
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Location: Texas

Re: Peritoneal carcinomatosis

Postby RixInPhx » Fri Mar 09, 2012 3:24 pm

Wow, this awful disease is certainly running you through the ringer.
I'm so sorry you're going thru this, and especially now with this new wrinkle.

I know your original Dx was peritoneal carcinamatosis, which is St 4 with the secondary within the peritoneum.
Where was your primary tumor, and what treatment did you have for it?

* You had HIPEC in Aug '11 (7 months ago) with a very favorable procedure and recovery.
* Then you had 3 clear scans (prior to last week's questionable 4th scan), presumably at 2-month intervals (Oct, Dec, Jan).
* Then began mop-up chemo of Folfiri + Avastin about Jan, continuing until this week, to try to prevent rogue tumor cells from establishing themselves (and to suppress unknown potential tumors); at 2-weeks per cycle, you've had about 3 cycles.
A 'standard' course of this regimen would be 12 cycles/6 months, and it isn't very effective after just a few cycles.
* Finally, last week's scan (4th) showed some questionable spots (presumably small, about 4 mm?); you'll know whether they're malignant after the MRI.

The entire purpose of these scans is to see if the HIPEC was completely successful.
Your medical team was rightfully concerned about whether cancer would redevelop or re-establish since that's always a possibly; especially since you were told you were "at high risk for peritoneal spread."
The questionable spots on the liver are a cause for concern, and you are so lucky they were found.
Now your medical team has an opportunity to determine if they are malignant, and to plot a change in course of treatment if necessary.
No spots on liver, lungs, etc. would have been wonderful news, and the adjuct chemo could have continued to the previously-planned cessation (presumably 12 cycles, about July).

Things rareky go as planned with this disease, there are often bumps in the road, and you've encountered a big one; but certainly not insurmountable.
Firstly, as you've been told, the spots might be benign, and all this concern is for nought.
If they are found to be malignant, it is a possibility that your medical team feared, and it can be treated.

Prossibly a full course of Folfiri + Avastin (and maybe Erbitux or Vectibix if your tumor is KRAS-wild) would be effective.
Or the onc might determine that Folfox (5FU/Leucovorin, with Oxalplatin instead of Irinotecan).
Or your medical team might think that radiation would be effective for 4 small spots.
All of this might make the liver condition suitable for resection surgery to remove the spots (if they aren't already suitable for an immediate resection).

THERE IS MUCH HOPE here, please understand that.
Your body hasn't turned on you, your medical team hasn't missed anything, and you aren't out of options.
The chemo hasn't 'failed', and IMHO you shouldn't abandon it.

If these spots are malignant, it's apparent they grew during your time of treatment, Jan-present, since they weren't present at the 3rd scan.
It's possible that adjunct chemo soon enough (*most* patients begin 'mop-up' about 10 weeks after surgery, therefore Nov for you), and these spots were already established (but so small as to not be detected at 3rd scan).
It's possible your tumor is resistant to this regimen, and the other 'first-line' regimen (Folfox) might be more effective for you; or adding the Eri or Vec might be appropriate.

I know you put a lot of faith in the HIPEC, and Dr Sardi is certainly one of the best in the country.
But surgery isn't the only treatment and it isn't always effective, thus the scans), and the fact that it now seems the HIPEC didn't go 'perfectly' is no reason to abandon the fight.
There are other weapons available.

My advice is to get back on the chemo regimen, try to calmly await the MRI results, and then plan a new strategy with your onc and the rest of your medical team.
I wish you the best in your treatment, that you be NED by the end of the year, and that you get the most out of life.

Peace, Rick
M 61, Dx 6/10 CRC st 4, unknown primary CEA 843
2 kg peritoneal mass, met to skull; no surgery
Various regimens of all CRC chemo drugs
Mets to lung 8/11 CEA 135
Folfiri/Erb/Ava 12/11 CEA 320
No progression 5/12 CEA 192
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Posts: 1904
Joined: Fri Oct 08, 2010 11:53 pm
Location: Phoenix

Re: Peritoneal carcinomatosis

Postby raym » Fri Mar 09, 2012 3:44 pm

Cancerislame wrote:Hello,

I have peritoneal carcinomatosis. Today is my one year anniversary from my original emergency colon resection after my gi doc couldn't get past my mass during my colonoscopy. I did 9 months on a clinical trial of weekly erbitux and biweekly folfox with the 48 blurry pump. I have been off 6 weeks while waiting for my PET (tomorrow) and thaving second and third opinions. I am meeting with a HIPEC surgeon in San Diego on Tuesday. How was that for you? I am very nervous about the decision (if I end up a candidate of course).

Jennifer


I'm headed for cytoreduction and HIPEC with Dr Sardi in April and I really didn't think twice about the decision. I guess I could have considered chemo to try to battle things but in my mind a surgical option is much more aggressive than chemo. My oncologist is also on board with this course of action, though he does say it's on the edge and agressive. I have no other risk factors that would make me reconsider surgery.
3/11 IIIC 4/5 node+/12 TX FOLFOX
4/12 HIPEC
6/12 Chemo/Rad clean up
9/12 XELIRI+Avastin/ Zaltrap
9/13 Pelvic Abscess,stopped chemo
11/13 Tumor rmvd from Lap Port incision
12/13 Xeloda
1/14 Cardiac Issues/Card Cath no more Xeloda/5FU
3/14 Irinotecan
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Re: Peritoneal carcinomatosis

Postby Cancerislame » Fri Mar 09, 2012 11:09 pm

Raym,

Thanks for your input. The reason I am nervous is because my surgeon in L.A. is willing to do my liver resection and remove anything he sees on the peritoneum. Which I am Gung Ho about... but is also thinking I might be a candidate for the HIPEC. The HIPEC is what makes me nervous. Also, because I am not sure if I have seen or heard experiences of anyone that has had the liver resection and HIPEC. I am on good shape and strong and healthy but the recovery and possible complications are a little unnerving but I know liver resection will not be a picnic either. The other factor I am putting thought into that the two onc. Surgeons I have met with including the one I got the referral from is the lack of data. They know its effective but there hasn't been studies to show if it is better than systemic chemo that we have today. With that being said today is the first time I have been leaningmore towards than being undecided. This is because what if it really can get all remaining cancer cells they may or may not be present when do it...that could be the difference in years on my life oranother 9 months of chemo in exchange for a few months of recovery. Anyway, good luck with your treatment, so excited for you!

Jennifer
3/11- IV 4.5cm Lvr 1 of 13 LN@30 yo,
4/11-1/12 FLFOX/ERB.
5/18/12 HIPEC-rt ovary, omtm rmvd.
6/24/12 smll Bwl Obst Srg
8/20/12 Xlda 5 on wknds off 1 off wk off
2/5/13 X. 5 on 2 off,2 wks off
Cancer free since 5/18/12...over a year on mtc chemo
CEA 1.2
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Re: Peritoneal carcinomatosis

Postby raym » Sat Mar 10, 2012 9:24 am

Cancerislame wrote:Raym,

Thanks for your input. The reason I am nervous is because my surgeon in L.A. is willing to do my liver resection and remove anything he sees on the peritoneum. Which I am Gung Ho about... but is also thinking I might be a candidate for the HIPEC. The HIPEC is what makes me nervous. Also, because I am not sure if I have seen or heard experiences of anyone that has had the liver resection and HIPEC. I am on good shape and strong and healthy but the recovery and possible complications are a little unnerving but I know liver resection will not be a picnic either. The other factor I am putting thought into that the two onc. Surgeons I have met with including the one I got the referral from is the lack of data. They know its effective but there hasn't been studies to show if it is better than systemic chemo that we have today. With that being said today is the first time I have been leaningmore towards than being undecided. This is because what if it really can get all remaining cancer cells they may or may not be present when do it...that could be the difference in years on my life oranother 9 months of chemo in exchange for a few months of recovery. Anyway, good luck with your treatment, so excited for you!

Jennifer


I agree, one needs to weigh the quality of life (and extension) with the treatment. For me, the PET is showing cancer activity on my colon (as well as some moderate uptake or a node near my bladder, not on the bladder) so surgery is needed regardless. I figure while they are there, may as well go for a total clean out and chemo. I'm also worried about trying chemo, spending another 6 months, and finding that it was not effect that I need the surgery anyway. Then again I am anticipating mop up chemo post surgery..so maybe it's a wash.

Ray
3/11 IIIC 4/5 node+/12 TX FOLFOX
4/12 HIPEC
6/12 Chemo/Rad clean up
9/12 XELIRI+Avastin/ Zaltrap
9/13 Pelvic Abscess,stopped chemo
11/13 Tumor rmvd from Lap Port incision
12/13 Xeloda
1/14 Cardiac Issues/Card Cath no more Xeloda/5FU
3/14 Irinotecan
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Re: Peritoneal carcinomatosis

Postby Yellowbird » Sun Mar 11, 2012 6:57 pm

When I was diagnosed with peritoneal carcinomatosis, I was told I had six months without chemo or an average of two years with it.

The first person Dr. Sardi performed cytoreduction with HIPEC on was in 1994 on a patient in worse shape than me. She is still alive today.

This beats the heck out of two years. I would call dr Sardi if I were you. Going local is convenient, but I didn't want convenient...I wanted competent.
Dx stage III July '10
Colon resection August '10
8 rounds Folfox
dx stage IV peritoneal carcinoma May 11
HIPEC Aug 11
Mop up folfiri with avastin
July 12, liver mets multiple metastases
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