Mucinous Adenocarcinoma of the appendix - Treatment in SoCal

Ezzy · Regular Joined: 30 May 2005 Posts: 11

Does anyone know of a good oncologist in Southern California that specializes in, or is at least familiar with, treating mucinous adenocarcinoma of the appendix?

After a series of failures of the HMO system, my mother finally had surgery 2 weeks ago for what was thought to be a ruptured appendix. Turns out it was a large tumor of the appendix, which was removed along with part of her colon and some lymph nodes. The HMO oncologist my mother just saw on Friday diagnosed her with mucinous adenocarcinoma, Stage C (because it was in the lympth nodes). The doctor wants her to start Chemo on Tues. for six months. He wants to use Xelox, which is a combo of Xeloda - orally, 2 weeks on and then 2 weeks off, and Oxalyplatin - by IV once each 2 weeks.

Is there anyone else that's been diagnosed with this and what treatment are you receiving? Have the results been good?

Ezzy · Regular Joined: 30 May 2005 Posts: 11

I ended up calling Dr. Sugarbaker in Wash. D.C. (the expert on malignant mucinous adenocarcinoma of the apppendix) for info. I don't know if the person I spoke to was a nurse, but she told me that my mom would most likely need a second surgery in about 6 months. I asked her why. She asked me how long my mom was in surgery to have the cancer removed (2 hours) and she said that there was no way that the doctor would have been able to get all the cancer out in 2 hours, it would more likely have been 10 or more hours of surgery. And then she said that, in the mean time, my mother needed to receive interpertionel chemo. She then referred me to a Dr. Robert M. Barone in San Diego. www.oncologysandiego.com/barone.html

I called Dr. Barone's office immediately and spoke to his assistant that makes his appointments. Her name is Espy. She told me that Dr. Sugarbaker has referred several patients to Dr. Barone and that Dr. Barone was up to date on the current methods of treatment (ie. interpertionel chemo) and my mother was able to get an appointment for this Monday. Espy is also scheduling my Mom to have an MRI of her insides done on Monday.

Ezzy · Regular Joined: 30 May 2005 Posts: 11

Diagnosis: malignant mucinous adenocarcinoma of the apppendix:

A type of Pseudomyxoma Peritonei, which is "a rare malignant growth characterized by the progressive accumulation of mucus-secreting (mucinous) tumor cells within the abdomen and pelvis. The disorder develops after a small growth (polyp) located within the appendix bursts through the wall of the appendix, and spreads mucus-producing tumor cells throughout the surrounding surfaces (e.g., the membrane that lines the abdominal cavity [peritoneum]). As mucinous tumor cells accumulate, the abdominal area becomes swollen and digestive (gastrointestinal) function becomes impaired. Pseudomyxoma Peritonei develops at a variable rate, but may grow at a slower rate (indolent) than other malignancies within the abdomen."

It needs to be treated with:

Intraperitoneal Surgery and Chemotherapy

Intraperitoneal Chemotherapy: Technique in which high doses of chemotherapy are introduced into the abdominal cavity for direct tumor cell kill.

Hyperthermic Intraperitoneal Chemotherapy: Technique in which the abdomoinal cavity is heated to high temperatures through the introduction of heated chemotherapy solutions, resulting in direct tumor cell kill. Hyperthermia makes tumor cells more sensitive to chemotherapy agents.

Debulking or Cytoreduction: Removal of tumor spread throughout the abdominal cavity. Tumor types that can be treated with cytoredcutive surgery and intraperitoneal chemotherapy include: appendiceal cancer, colorectal cancer, ovarian cancer, gastric cancer, sarcoma and mesothelioma.

Ezzy · Regular Joined: 30 May 2005 Posts: 11

I went with my mom last Wed. to see Dr. Barone. He definitely has experience with this kind of cancer. He required all of my mom's previous lab work, x-rays, etc, then he had her do an MRI on the morning of our consultation. Apparently, Dr. Barone's facility is one of the few places in the U.S. that has an MRI machine and radiologist on staff that can detect this kind of cancer accurately.

The MRI showed that my mom still has cancer on the right underside of her liver and on the right underside of her diaphragm, which did not show up in any of the other cat scans, etc, that her oncologist had done previously. Dr. Barone said that this was where he had expected to see the cancer, in spots usually missed by the current methods of cancer detection, and also by oncologists used to treating more common forms of cancer.

Prior to my mom's appointment with Dr. Barone, her HMO oncologist got the results back on some bloodwork and found that my mom has cancer markers in her blood (a high CEA), and her oncologist was shocked. I had already been telling her for the last few weeks that she still had cancer in her, but this oncologist apparently didn't want to believe it. Needless to say, Dr. Barone recommended that my mom have surgery pretty quick, and he also recommended that she do the heated and unheated Intraperitoneal Chemotherapy following the surgery. He's had success with this type of treatment.

leo · Owner Joined: 23 Sep 2004 Posts: 1574

Dear Ezzy,

Thanks for posting her experience so far. This type of cancer is unusual, but I have seen a few cases. Please let us know how she does, ok ?

best regards,
Leo
_________________
Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

MELHUL0007 · New User Joined: 23 Jun 2005 Posts: 2

My husband 43 was just dx. with adenocarcinoma of the appendix nothing more yet but your note about your mother worries me. We are going to a Doc that I felt was great until your note.What has your Doc said about this testing and should everyone get the mri or should the ct scans do it if there is no further dx yet. Please let me know what has happened so far we are scheduled for sx. on 7-15-05

Thanks melissa

Ezzy · Regular Joined: 30 May 2005 Posts: 11

[quote="MELHUL0007"]My husband 43 was just dx. with adenocarcinoma of the appendix nothing more yet but your note about your mother worries me. We are going to a Doc that I felt was great until your note.What has your Doc said about this testing and should everyone get the mri or should the ct scans do it if there is no further dx yet. Please let me know what has happened so far we are scheduled for sx. on 7-15-05

Thanks melissa[/quote]

Hi Melissa,
Your husband definitely needs an MRI, a CT scan does not show all the cancer. I did a ton of research and found out that most oncologists have never treated this type of cancer and really don't have any idea how to treat it. They won't tell you that though.

My mothers CT scan was negative, while the MRI shows that she still has cancer. The blood test she took also showed that she still has cancer, which confused her HMO oncologist because his CT scan had showed no cancer.

Apparently it takes a special kind of MRI machine and a specially trained radiologist to detect this kind of cancer. As far as I know, there are 3 places in the country that have this MRI machine: Dr. Barone's San Diego, www.oncologysandiego.com/barone.html; Wake Forest, N.C.; and Dr. Sugarbaker's in Wash. DC.

I highly recommend that you call Dr. Barone's office and/or Dr. Sugarbaker's office and get as much info as you can. I don't know where you live, but they could possibly find someplace in your area that has experience with this. This is how I found Dr. Barone.

This is a good link of other postings for this type of cancer:

http://www.dipex.org/community/topic.asp?TOPIC_ID=93r

Good luck! EZZY

MELHUL0007 · New User Joined: 23 Jun 2005 Posts: 2

Thanks for your reply and I did call Dr. barone office yesterday and they want him to get his ct scans and then see him for a second opinion.
We live in palm springs so it will be easy for us thanks again

melissa

hdhtrn8bob · New User Joined: 29 Jun 2005 Posts: 2

Hi, I'm looking for someone like Dr. Barone myself. Ezzy, how has your mom done with Dr. Barone?

Melissa, has you husband been to see him yet? Results?

bob

Ezzy · Regular Joined: 30 May 2005 Posts: 11

Hi Bob,

My mom finally started going through the process of scheduling an appointment for surgery and heated chemo with Dr. Barone yesterday.

The back story is that my mom had already been told by Dr. Barone that she needed to stop chemo immediately because, apparently, the more chemo and surgeries you have had in the past might increase the risk of side-effects when having the surgery and heated chemo with Dr. Barone. You can get the specifics on that from Dr. Barone.

It was, of course, my mom?s decision whether or not to have the surgery, but her oncologist, without discussing anything with Dr. Barone, had told her that staying on the Xelota chemo might help reduce the tumors and bring down her CEA tumor marker levels before she had surgery. What my mom heard was "There is a possibility that the Xelota chemo might get rid of the tumors completely without having surgery."

At this point, I put a call in to Espy to ask her to ask Dr. Barone about using the Xelota to reduce the tumors, and to ask if Dr. Barone would call my mom's oncologist to discuss this. The next day I got a call back from Dr. Barone, who said he spoke with the oncologist and had explained to him why my mom needed to stop the chemo if she was going to have the surgery. So, finally, the oncologist told my mom that the Xelota chemo she was on would only extend her life for maybe one, possibly two years at best.

My mom already read about remission rates of up to five years, possibly more, with the heated chemo and surgery. Of course, there are no guarantees. So she made a decision to stop the chemo yesterday and is working on scheduling the surgery. There is another person in Camarillo that is scheduled for surgery with Dr. Barone on July 15. Here's the link to that thread:

http://www.dipex.org/community/topic.asp?TOPIC_ID=93&whichpage=4

There are also other people on the thread that have already had the surgery that you could contact.

I will post further info on my mom and her surgery. Hope this helps. If you have any other questions, I will be happy to try an answer them.
Good Luck!!!
Ezzy

hdhtrn8bob · New User Joined: 29 Jun 2005 Posts: 2

Ezzy,

Thanks for the input...please keep me posted on your mom's progress with Dr. Barone.

Bob

sbudd · New User Joined: 05 Jul 2005 Posts: 4

Mucinous tumors usually are referred to as pseudomyxoma peritonei (PMP). This is a very rare form of cancer and most oncologists are not prepared to treat it. There are only a handful of qualified doctors.

There is a group on yahoo where you will find a wealth of information --
http://health.groups.yahoo.com/group/pmpbellybuttons/

The group consists of people who are living with PMP and their family members. You can get all kinds of information and suggestions from that site. You can also find a list of the doctors who treat the disease.

My husband was diagnosed with PMP last April (2004). He had surgery which included intraperitonal hyperthermic chemotherapy (IPHC) in January '05. He is recovering well.

If you have been diagnosed with PMP, go directly to the specialists!

Good luck to all!

Sandy

Ezzy · Regular Joined: 30 May 2005 Posts: 11

Hi Sandy,

I'm glad to hear that your husband is doing well. My mom is scheduled for surgery and heated chemo on Aug. 4. with Dr. Barone in San Diego. I was wondering if you could give us some details on what you and your husband's experience was with the surgery and recovery so that we could maybe be a little bit more prepared for things to come. Like, do you have any tips or recommendations? Anything you could tell us would be really appreciated.

Thanks! Ezzy

kevind · New User Joined: 21 Nov 2005 Posts: 1

What is the MRI machne that barone actually has. We are in La Quinta and my wife had cancer of appendix and I am researching everywhere
_________________
kevinD

sbudd · New User Joined: 05 Jul 2005 Posts: 4

Kevin
You are not alone. There are some resources available to you. I would recommend that you go to this site:

http://health.groups.yahoo.com/group/pmpbellybuttons/

Also, this one: www.pmppals.org

Also, google this term: "pseudomyxoma peritonei"

There are only a few doctors in the country which treat this cancer effectively, and you need to go see one of them rather than doctors who have NEVER treated it.

Let me know if you need any specific information. Good luck to you and your wife.

Sandy

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