wifeoffighter

I'm thinking of you. I hope you are ok, and that this has been an ok day.

Hi! Thanks for getting back to me. My cancer was extensive, as it was diagnosed very late. I did have another debulking surgery about five years ago. I had stopped avastin for about two years, so the cancer came back. When it started growing again a year after that surgery, I went back on chemo. Avastin is always in the mix because it always works for me and has no side effects that impair my quality of life. It's the only drug I can say that about. I hope your husband has a similar experience.

I can definitely vouch for avastin, as I have been on it for over 8 years. I have had virtually no side effects, other than the occasional nose bleed. I took it with folfox for 9 months. Then we continued just with 5FU and avastin for another 2 years, followed by avastin only another two years. At this point I took a break for awhile until the cancer returned. I had more surgery, and have been on Xeloda (an oral form of 5FU) and avastin for 3 1/2 years. My doctor definitely considers the avastin to be the main drug keeping my cancer stable. I understand that people sometimes have high blood pressure with avastin, but mine is still relatively low. When I was only on Avastin, I felt perfectly healthy.
I'm grateful for a medication that has almost no side effects.
I hope the treatment goes well. Please keep in touch.

Hi Wifeoffighter, I'm very sorry for the late reply. My husband was well enough for me to leave him for awhile to fly back to Asia to attend to some family matters which were long neglected because of our prolonged stay in New York.
My husband had another paracentesis (draining of ascites in his belly) last Monday. His ascites came back but I heard that this is common among people who had long surgery. A sister of a friend had paracentesis 4 times after a wipple surgery. The procedure was pretty straightforward it took an hour to finish every thing. They drained 2.7 liters of fluid from his belly.
He's undergoing physio therapy as his stomach muscle has been very tight after surgery, it caused him to haunch and limited his movement. He exercises every day enjoying the warm weather by walking to the park for around an hour.
He's appetite is back but he still cannot take so much food. Overheating makes him feel uncomfortable, he's been eating small meals and snacking in between.
He will start systemic chemo tomorrow.
Have you decided on your husband's treatment?

Hi Wife of fighter! They consider my husband's case as intermediate. They removed his omentum, spleen and cecum during surgery to remove the tumors. A team of doctors are now dealing with his case at MSK. He's surgeon is Dr. Paty too while his oncologist is Dr. Leonard Saltz. His coordinating physician is Dr. Shike. Like Abrub here, we are also happy with MSK. We appreciate it's collaboration with Integrative Medicine which helped manage the discomfort of my husband. He's about to start systemic chemo.

In addition to Abrub's advice, there is also Dr. Lowy from the UC San Diego Moore Cancer Center.

Hi Wifeoffighter, Abrub is right in advising you to get an appendix specialist. We flew in from Hong Kong as we were advised by our doctors there to see a specialist here. There's not so many of them yet as research on this type of cancer is just starting. We scouted for specialists from the west coast to the East Coast.

I see you are dealing with a new diagnosis of appendix cancer. I, too, had a diagnosis of metastatic mucinous adenocarcinoma of the appendix. I was diagnosed almost 7 years ago and am doing great.

If I can give you a single piece of advice: do not commence treatment until your husband consults with one of the appendix cancer experts. I have a friend who travelled from Philly to see the dr I saw at Memorial Sloan Kettering in NYC (Dr. Paty.) There are others around as well. (Dr. Nash ast MSK is also excellent.) This cancer should not be treated by anyone other than an expert in this cancer; it is not merely a variant of colon cancer. The treatment is different.

Please don't hesitate to ask me anything.

Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

Wishing you the best.

David
Founder, WhatNexter