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Adenocarcinoma of the appendix

rodal
Posts: 1
Joined: Mar 2004

I am a 58 year-old male diagnosed with adenocarcinoma of the appendix. The doctors have removed a large portion of the colon, the entire appendix, and part of my bladder as well as multiple lymph nodes. The tumor has metastasized both to the lymph nodes and to the right pelvic sidewall, and is considered to be inoperable. Because of the location of the remaining tumors, radiation also is not currently being considered as an option.

Does anyone have any information regarding new treatments and/or clinical trials for this type of cancer? I have been told both by oncologists and colo-rectal surgeons that this type is only about one case in about 10,000 cases, so there probably isn't much information or trials available. They try to treat it as a type of colon cancer, but really don't have much experience or information as to what works or doesn't work. They seem to think as a trial-and-error situation, and really don't have much data to provide.

Can anyone help on this?

Thanks.

isletcell's picture
isletcell
Posts: 68
Joined: Mar 2004

Im so sorry that you have to be here but glad that you found this site.

My message to you is that I couldnt find any info on my rare cancer either but i did not give up. The internet is such a valubale tool and there are many sites dedicated to rare cancers. Try typing in rare cancers on your search engine. And there are groups that will tell you where to go for good and accurate info.Also, you can call the american cancer society and they will send you good info and guide you where to go as well.
Good luck,

Jen

rep801's picture
rep801
Posts: 26
Joined: Apr 2003

Rodal, don't want to diagnose or plant seeds of doubt versus what your physicians have already told you. Based on a couple of things in your message you may want to check-out an additional site.

Your diagnosis of Adenocarcinoma of the Appendix can be a version of / or lead to PMP - Pseudomyxoma Peritonie. As in your case these are extremely rare conditions, and most physicians tend to try and treat as a form of colo-rectal cancer. There are some specialists in PMP treatment scattered around the country that take a different treatment approach. These specialists have had success with an approach known as IPHC (Intra-Peritoneal Heated Chemotherapy) and some are also seeing success with oral chemotherapy drugs.

The best site to find a list of these specialists is at:

www.pmppals.org

scroll down the home page to the physician link and there will be a comprehensive list of surgical oncologists and pathologists. I am currently being treated by one of these specialists with considerable success.

Best of Luck and G-d Bless.

Bob

Dayna
Posts: 1
Joined: May 2004

Hi, my diagnosis was Adenocarcinoid of the appendix with mets. You do have some options. After my surgeon removed everything he could, I took Oxaliplatin/Xeloda for 4 months. This chemo did not help me. I then had 4 months of Carbo/Taxol. At this point, I am schdeled for an abnominal chemo wash. This procedure might be something you want to check into. Best of luck to you. There is a Yahoo group you can find by searching Adenocarcinoid. All of us have appendiceal cancer. Search the archives for lots of good info. and post any questions you have. These kind people are very supportive.
Dayna

Catblue30
Posts: 4
Joined: Nov 2009

Hi! My name is Cher. My husband, Ritch, was recently diagnosed with Stage 4 at MD Anderson in Houston. They are treating it like colon cancer too. Any information would be greatly appreciated.

abrub's picture
abrub
Posts: 1668
Joined: Mar 2010

You may want to visit the Rare Cancer Forum. Chemo is generally that used for colon cancer, but there are other treatments (surgery types and intraperitoneal chemo) done as well. MD Anderson is one of the best in the world, but make sure that the doctors are communicating with drs who have treated this specific form of cancer.

Hovea
Posts: 15
Joined: Mar 2010

I am trying to contact anyone who has experienced a side effect from Oxiplatin which I describe as 'chattering teeth' syndrome. I am stage 1V grade 1 Mucanous Adenocarcinoma and have endured my sixth cyle of Ox. 5th cycle Avistan was added and I have been on Xeloda from the start. My onc. and the Clinical Nurse Manager have never seen these symptoms but surely I am not the only person on the planet to experience this dreadful side effect. My onc. has decided to cease Ox. from my next cycle. Can you assist please.

abrub's picture
abrub
Posts: 1668
Joined: Mar 2010

Since this thread has been quiet for a while, and since colon cancer uses much the same treatment, I think you should post your question as a new thread on the Colon Cancer thread.

You should be able to guess who I am!

Alice

Hovea
Posts: 15
Joined: Mar 2010

Didn't realize this is you, Alice. Thanks for all your support. I am checking the net to try and find another soul who has experienced this side effect so I can let the medical people know I am not the only person on this planet who has experienced this side effect from chemo. You are appreciated. Hovea

acekayaker
Posts: 9
Joined: Feb 2010

Dear Cher,
My husband was also diagnosed with stage four of adenocarcinoma of the appendix in Feb of 2009.
We have managed to get through to March 2010 with an aggressive series of chemotherapy treatments.
If you would like more information please contact me at acekayaker@myfairpoint.net

Anonymous user (not verified)

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janla
Posts: 1
Joined: Dec 2011

My husband has that cancer. There are only a few specialists that know how to treat it. Chemotherapy generally does not work because this cancer is not spread through your blood or lymphatic system.
Here is a link to the physician we used, Dr. Evan Ong at the University of Arizona research hospital.
http://www.hipectreatment.com/docs/ong.php
Dr Brian Loggie of Omaha Nebraska treats that type of cancer. I have heard good things about him. Here is his link:
http://hipectreatment.com/docs/loggie.php
I wish you the best!

geomar
Posts: 2
Joined: Dec 2011

Check out: www.appendix-cancer.com

Most comprehensive information on the subject!

healthalways63's picture
healthalways63
Posts: 2
Joined: Jul 2016

I was diagnosed with this in May of 2010 during a "Routine" Emergency Appendectomy. My First Oncologist treated me with F5U thinking he was doing a "Mop up" of the remaining cancer. That lasted from July to December of 2010. Because I was out of work the whole time, first on FMLA, then on an extended FMLA, the Compnay I worked fro a major Casino Hotel in Las vegas on the Strip, terminated my employment on Oct 21st of 2010 despite pleas from the Oncologist explaining the rarity of the Cancer. Without Health Insurance, the Doctor had to stop the Chemo Infusions and put me on Xeloda. The following Jan 2011, I began having extreme abdominal pain, the Oncologist sent me back to the Surgeon who did the Appendectomy to see what was going on, because the PET Scan was inconclusive. He was a man who always smiled except the day he came out of Surgery and told my Family the tumors were all over especially on the omentum. We were directed to get a second opinion. We travelled to ST John's Hospital to visit the head of Oncology. She looked at all the records I brought pluse what the Oncologist sent and said that there is a new Sugery called Cyto Reduction/HIPEC being performed in USC San Diego by the Doctor who helped shepherd it through Trials. Dr Andrew Lowy. She told me without it, I had 15 months to live. She sent him a referral and we travelled to San Diego the following month. he said I was a candidate for the Surgery and echoed the Doctor in St John's saying with out it I has 15 months to live. Needless to say I had the Surgery in October of 2011. He referred me to the Oncologist I see currently and who has my full trust and Confidence. The sugery removed approximately 10lbs of tumors including the majority of the Omentum, my Gall Bladder, and 5 lbs of Mucinous fluid. I spent five weeks in Thornton Hospital in San Diego. In Jan 2012, I met my current Oncologist who is a Research Oncologist. I di well during 2012, but in Jan 2013 a nw tumor that was 2.9 CM showed up and it mde me eligible for a trial at the time of a Medication called Ramuciramaab that was not designed for Cancer of the Appendix, it was for Stomach Cancer. I reacted well to it and was on that and three chemos F5U, Leucovorin and I don't recall the third. I took the f5u home in a pump that lasted 48 hrs. That lasted from Feb to July when I begged them to take me off the Chemos, I fel so sick, I literally went and made Funeral Arrangements. I am a Positive person, I just didn't want my Family to have to go through making arrangements for me. So so far I am still doing well, am due for a CT Scan at the end of Aug. Sorry it was so long but a lot has happened in the last six years of my life. I wish everyone on this discussion board well in your treatments.

Michael Breglia

Cancer Awareness

 

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