From appendix to peritoneal?

mmikesell

Hi, my name is Mitch.

about a year ago, I had surgery to remove my appendix. It was cancerous with goblet cell and signet ring cells present. I had a second surgery and they removed a string of cancer that had traveled from my appendix around the abdomen wall the back of my abdomen and created a tumor about fist sized and one about a silver dollar size. I did 6 months of folfox and enjoyed 6 months of "remission".

Now my CEA numbers are up. I had a CT scan with contrast this morning and am reading my findings. It says "new anterior abdominal cavity small mass with may represent peritoneal carcinomatosis." I also had a fatty liver change.

I have a oncology appointment tomorrow. Just looking for some good questions to ask about how we are going to beat this one.

Thanks, Mitch

westie66

Peritoneal and Appendix Cancer
Hi Mitch: Something I'll be facing too next week I expect. There is someone on this discussion board that had appendix cancer which spread to the peritoneum and other places and who is in remission. Hopefully she will respond to your query. I would have two questions:
(1) Is debulking or peritoneum stripping a surgical option (as far as I know, they are two separate kinds of surgeries - debulking removes the tumours only, the stripping removes the peritoneum with the tumours often with intra-chemo bathing)? If not, why not?
(2) Does your oncologist view this as a chronic vs a terminal disease? In other words, will regular chemo keep the peritoneum cancer at bay, there but not gaining ground? This is what often happen with the ovarian cancers that spread to the peritoneum. If so, what kinds of chemo? Is anyone doing research on this out there (it is a rare disease but ...).
Keep us posted.
Cheryl

abrub

Appendix cancer here
Mitch, I think I may have responded to you on another thread. You must have your scans reviewed by an appendix cancer specialist - only they can properly read your scans, and also they have the knowledge of the available treatments.

Ask your onc to get a referral. I go to Dr. Paty at Memorial Sloan Kettering, NYC, and he is fantastic - quite brilliant, and aware of all the different options. However, there are experts at other cancer centers as well.

When he opened me up, after my cancer had been found by surprise during a hysterectomy, he found tumors seeded throughout my peritoneum, and removed all visible tumor. This was followed by IP chemo.

This cancer requires a specialist - I can't emphasize that enough. A general oncologist might do something he's read, but doesn't know how to look for this cancer specifically.

Good luck.

Alice

westie66

abrub said:

Appendix cancer here
Mitch, I think I may have responded to you on another thread. You must have your scans reviewed by an appendix cancer specialist - only they can properly read your scans, and also they have the knowledge of the available treatments.

Ask your onc to get a referral. I go to Dr. Paty at Memorial Sloan Kettering, NYC, and he is fantastic - quite brilliant, and aware of all the different options. However, there are experts at other cancer centers as well.

When he opened me up, after my cancer had been found by surprise during a hysterectomy, he found tumors seeded throughout my peritoneum, and removed all visible tumor. This was followed by IP chemo.

This cancer requires a specialist - I can't emphasize that enough. A general oncologist might do something he's read, but doesn't know how to look for this cancer specifically.

Good luck.

Alice

Appendix Cancer
Thanks, Alice. That should help him. If he lived in Canada, he wouldn't have much of a choice of experts in this type of cancer. I haven't heard of any unfortunately. Most of the specialists I have access to are gastro-intestinal in general. Even for gallbladder. The ovarian cancer folks fare a little better as they are dealing with the peritoneum cancer that can result.
Cheryl

forrest hoekstra

westie66 said:

Peritoneal and Appendix Cancer
Hi Mitch: Something I'll be facing too next week I expect. There is someone on this discussion board that had appendix cancer which spread to the peritoneum and other places and who is in remission. Hopefully she will respond to your query. I would have two questions:
(1) Is debulking or peritoneum stripping a surgical option (as far as I know, they are two separate kinds of surgeries - debulking removes the tumours only, the stripping removes the peritoneum with the tumours often with intra-chemo bathing)? If not, why not?
(2) Does your oncologist view this as a chronic vs a terminal disease? In other words, will regular chemo keep the peritoneum cancer at bay, there but not gaining ground? This is what often happen with the ovarian cancers that spread to the peritoneum. If so, what kinds of chemo? Is anyone doing research on this out there (it is a rare disease but ...).
Keep us posted.
Cheryl

Hipec out of the question so ...............
I just found out that my Signet Ring cell (through a burst appendix) has spread troughout my abdomen (but contained), it is to massive for a MOAS and or Hipec. Treatment would do more harm then good, a chemo treatment will allow for 6 to 9 months , short of a miracle , I'm ...........

Anyone out there with suggestions other then prayer (I got that covered) what can I expect from Chemo

second question, my cancer will typically spread to either lungs and or liver, any one care to paint me a picture what I'm up against. Don't bother to pull any punches. I need to know, I have kids and it hurts me to see them suffer.

I am posting from Holland EU

To answer the origional posters question : It is my understanding that a Moas and Hipec (also suggested by Westie66) is the best option. Google Dr. Sugarbaker DC / Hipec

God Bless

abrub

forrest hoekstra said:

Hipec out of the question so ...............
I just found out that my Signet Ring cell (through a burst appendix) has spread troughout my abdomen (but contained), it is to massive for a MOAS and or Hipec. Treatment would do more harm then good, a chemo treatment will allow for 6 to 9 months , short of a miracle , I'm ...........

Anyone out there with suggestions other then prayer (I got that covered) what can I expect from Chemo

second question, my cancer will typically spread to either lungs and or liver, any one care to paint me a picture what I'm up against. Don't bother to pull any punches. I need to know, I have kids and it hurts me to see them suffer.

I am posting from Holland EU

To answer the origional posters question : It is my understanding that a Moas and Hipec (also suggested by Westie66) is the best option. Google Dr. Sugarbaker DC / Hipec

God Bless

There are other approaches
If you are on FaceBook, there is a PMP Appendix Cancer Support group, with lots of different Appendix Cancer patients - types and treatments, including a number of Europeans. You might want to ask there.

I had a lot of spread when my appendix ruptured, and my surgeon went in and cleaned me out. He placed a belly port, and closed me up. I had intraperitoneal chemo with FUDR (a 5FU derivative) following surgery to direct the chemo specifically to the peritoneal cavity.

I'm doing great.

Wishing you the best,
Alice

forrest hoekstra

abrub said:

There are other approaches
If you are on FaceBook, there is a PMP Appendix Cancer Support group, with lots of different Appendix Cancer patients - types and treatments, including a number of Europeans. You might want to ask there.

I had a lot of spread when my appendix ruptured, and my surgeon went in and cleaned me out. He placed a belly port, and closed me up. I had intraperitoneal chemo with FUDR (a 5FU derivative) following surgery to direct the chemo specifically to the peritoneal cavity.

I'm doing great.

Wishing you the best,
Alice

please elaborate Alice or any one else
my problem is that "The cleaning Out" will involve taking too much damage for me to survive the surgery, my thinking is why not cut what you can and then use intraperitoneal chemo ?

Thanks

abrub

forrest hoekstra said:

please elaborate Alice or any one else
my problem is that "The cleaning Out" will involve taking too much damage for me to survive the surgery, my thinking is why not cut what you can and then use intraperitoneal chemo ?

Thanks

My "cleaning out"
My surgeon went in for the second look, as my gyn did the initial surgery, and removed the largest tumors. Dr. Paty visually inspected my colon, peritoneum, omentum, spleen, gall bladder, anything he could find in there. He used magnification, and with that disected out any tumor cells he saw. He only removed questionable tissue, nothing was taken for the sake of getting it out of me. Since IP chemo can only penetrate a couple of mm, he had to get as much as possible out of me. His report was that he removed all visible tumor cells. He then placed an IP belly port, and starting 48 hours after surgery, I was infused directly with FUDR 3 days in a row. This was to be repeated every 2 weeks for 8 cycles, but some post-op complications delayed my second treatment for 8 weeks. However, the first treatment, when everything is fresh and hasn't scarred over is the most important.

This surgery is different from the MOAS of which everyone speaks, where the spleen, gall bladder, and peritoneum are removed. My spleen and gallbladder are intact. Some bits of my peritoneum were removed, along with my entire omentum. He also removed a few pieces of my colon and my cecum because of some questionable visual findings. My ovaries, uterus, appendix, and part of my omentum were removed during my original surgery, when the cancer was first found.

Dr. Paty emphasized to me that the "cleaning out" would be delicate - not big chunks, just clear margins. He wanted a full open incision to insure he could see everything, and he told me he was able to manipulate and fully examine my internal organs.

My surgical complications were due to my extreme sensitivity to chemicals. We think that the IP chemo caused my bowel to shut down. I had rare side effects with the IP - severe pain, that the drs had never seen before, and the others who were having the same treatment complained of bloating, not blinding pain. I also had unusual, extreme responses to systemic chemo, and and hypersensitive to other drugs - can't take morphine, for example. So my complications truly represent the oddities, and are not to be expected.

However, at this point, I am well recovered, and functioning fully normally. My bowels, despite being resected in 3 places, work better than before my diagnosis (to my surgeon's delight and surprise!) Yes, it's a hellish procedure, but I now have a full healthy life to look forward to.

Discuss your options with various drs and see what might be available to you. Get as much information as you can before deciding that this is too much.

Alice

caitlinm

westie66 said:

Appendix Cancer
Thanks, Alice. That should help him. If he lived in Canada, he wouldn't have much of a choice of experts in this type of cancer. I haven't heard of any unfortunately. Most of the specialists I have access to are gastro-intestinal in general. Even for gallbladder. The ovarian cancer folks fare a little better as they are dealing with the peritoneum cancer that can result.
Cheryl

appendix cancer
my surgical oncologist ,may not be called a specialist but she trained under dr. sugarbeker for HIPEC and has performed many of them since 2008 in Edmonton. My surgery was 9 hrs and she successfully removed all visible cancer. how are doing cheryl and mike?

caitlinm

westie66 said:

Appendix Cancer
Thanks, Alice. That should help him. If he lived in Canada, he wouldn't have much of a choice of experts in this type of cancer. I haven't heard of any unfortunately. Most of the specialists I have access to are gastro-intestinal in general. Even for gallbladder. The ovarian cancer folks fare a little better as they are dealing with the peritoneum cancer that can result.
Cheryl

appendix cancer
my surgical oncologist ,may not be called a specialist but she trained under dr. sugarbeker for HIPEC and has performed many of them since 2008 in Edmonton. My surgery was 9 hrs and she successfully removed all visible cancer. how are doing cheryl and mike?

caitlinm

westie66 said:

Appendix Cancer
Thanks, Alice. That should help him. If he lived in Canada, he wouldn't have much of a choice of experts in this type of cancer. I haven't heard of any unfortunately. Most of the specialists I have access to are gastro-intestinal in general. Even for gallbladder. The ovarian cancer folks fare a little better as they are dealing with the peritoneum cancer that can result.
Cheryl

appendix cancer alberta
my surgical oncologist ,may not be called a specialist but she trained under dr. sugarbeker for HIPEC and has performed many of them since 2008 in Edmonton. My surgery was 9 hrs and she successfully removed all visible cancer. how are doing cheryl and mike?

westie66

caitlinm said:

appendix cancer alberta
my surgical oncologist ,may not be called a specialist but she trained under dr. sugarbeker for HIPEC and has performed many of them since 2008 in Edmonton. My surgery was 9 hrs and she successfully removed all visible cancer. how are doing cheryl and mike?

HIPEC in Edmonton
Hi: If possible, could you provide her name? We only hear of Drs Temple and I forget the other guy's name at the Tom Baker Cancer Centre in Calgary who are performing this surgery. I live in Ontario. There was an article in the Globe and Mail last weekend on them and it highlighted a woman with appendix cancer that spread to the peritoneum who had the stripping surgery followed by HIPEC.
Did you have peritoneum nodules (I have 6 that did respond to chemo - oxaliplatin + irenotecan + 5FU) or caking?
I am fine so far. Finished 24 treatments of chemo and now am on a chemo break awaiting news of my last two CT scans (it's been 2 nerve-wracking weeks). Then we'll see where to go from here.
Cheryl