Adenocarcinoma of the appendix

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

Catblue30 said:

Adenocarcinoma of appendix with mucinous components
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.

Information on Mucinous Adenocarcinoma
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 said:

Side Effect of Chemo
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.

Hovea - I think I know you!
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

Adenocarcinoma of the appendix
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!

Adenocarcinoma of the Appendix

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

 

 

Cathy2017 said:

Newly Diagnosed

In December of 2016 I went to the ER with a stimach ache...I was very resistant but a friend encouraged me to go. Sitting in the waiting room my appendix burst and the toxins set off my heart - I have AFIB and I had to be cardo-averted 2 timnes and then wait 2 days (in the ICU on morphine) to do the apendectomy because my heart was so unstable. I had the apoendectomy...then had  a huge absess and had to have a drain inserted that I wore for 10 days and then found out the pathology founb bits of an appendiceal tumor in the mess in my stomach.

I recuperated until the end of January when I had to have an ablation to try and correct the AFIB. Then at the end of February I had a right hemi-cholectomy and HIPEC.  All 17 nodes came back clean and I am suposedly cancer free. But I started chemo because - quitw frankly - I don't think doctors know what to do with appendix cancer patients.

I am struggling with the "one size fits all" approach to the chemo and desperately need some support from other APPENDIX patients...not colon rectal or any other kind. I am struggling with the chemo and then coming home with a pump and going back 2 days later to have it removed...I have severe neuropathy after 1 treatment and I am still in pain from the surgery.

I just got online here and started reading and it's very depressing....

 

 

 

 

I'm 10 years out from my appendix cancer diagnosis

Cathy, there are specialists in appendix cancer, and you need to see one of them.  Where are you from?  I go to Sloan Kettering in NYC (traveling 175 miles each way.)  Specialist are few, but scattered throughout the country.  MD Anderson is another resource.

"One size fits all" does not apply to appendix cancer, and you might not need systemic chemo.  I know people who were told they had to have systemic chemo, but then met with appendix cancer specialists and were told NO to the systemic.  I had it, but it was of questionable value for my tumor type.

Send me a private message if you want to chat directly.

Alice

Cathy2017 said:

Newly Diagnosed

In December of 2016 I went to the ER with a stimach ache...I was very resistant but a friend encouraged me to go. Sitting in the waiting room my appendix burst and the toxins set off my heart - I have AFIB and I had to be cardo-averted 2 timnes and then wait 2 days (in the ICU on morphine) to do the apendectomy because my heart was so unstable. I had the apoendectomy...then had  a huge absess and had to have a drain inserted that I wore for 10 days and then found out the pathology founb bits of an appendiceal tumor in the mess in my stomach.

I recuperated until the end of January when I had to have an ablation to try and correct the AFIB. Then at the end of February I had a right hemi-cholectomy and HIPEC.  All 17 nodes came back clean and I am suposedly cancer free. But I started chemo because - quitw frankly - I don't think doctors know what to do with appendix cancer patients.

I am struggling with the "one size fits all" approach to the chemo and desperately need some support from other APPENDIX patients...not colon rectal or any other kind. I am struggling with the chemo and then coming home with a pump and going back 2 days later to have it removed...I have severe neuropathy after 1 treatment and I am still in pain from the surgery.

I just got online here and started reading and it's very depressing....

 

 

 

 

Cathy, I have had appendix

Cathy, I have had appendix cncer for 3 years, 1.5 years I was cancer free. I also had the HIPEC procedure and that gave me neuropthy in both feet and hands. My Onc doc had studied under Dr Paul Sugerbaker who developed the HIPEC procedure also know as the Sugerbaker Procedure. My Doctor understands appendix cancer, and you need to find a oncologist that understands appendix cancer. I do not know where you live but having a dr that understands like mine gives me hope. He does not use a one sie fits all approach.

I know that is not much hope but each dr is different and each has some bias. 

There is a Facebook group dedicated to us appendix cancer warriors. Today, expert surgeon Dr. Levine, did a presentation and it should be available as a recording soon. Links are below to the Facebook group & a non-profit group dedicated to appendix cancer.

https://www.facebook.com/groups/PMPAppendixCancerSupportGroup/?ref=share

https://pmppals.net/