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Pseudomyxoma Peritonei

ksprague
Posts: 1
Joined: Mar 2001

Hello friends!
I am new to this site and am very interested in hearing from others with this rare cancer which I was recently diagnosed. It started with a surgery a few weeks ago for what we thought was ovarian cancer. They removed my ovaries, uterus, omentum, appendix and several cancer nodules. I am home recovering and have been camped out on the computer finding as much info as possible re. this disease. Much of what I've found seems contradictory which is why I'd like to hear from others. I don't meet with my doc until the end of this week to discuss treatment options, where we go from here, and have him answer a whole list of questions that my husband and I have! Because this cancer is so rare there is really no standard form of treatment, as I'm sure many of you can empathize with. My personal email is ksprague2000@yahoo.com
You can write me there or here. I hope to hear from someone soon as the unknown is making me crazy!! Thanks--Kim

minjia
Posts: 1
Joined: Oct 2002

Dear Kim:

I hope this message finds you well. I was diagnosed with appendix cancer in April this year. In May I had a right hemicolectomy (removal of my right intestines), along with the removal of my right ovary, 20 cm of small intestines, omentum, and 40 some lymph nodes. Fortunately the cancer (well-differentiated adenocarcinoma) was confined to my appendix. My doctors didn't think chemo was necessary. Five months have passed, and I have been doing great so far. Today I will be receiving my first post-op MRI. I have already had two blood tests to check on CEA levels, and they have been normal. I am the first case of appendix cancer being treated at the Sun Yatsen Cancer Center here in Taipei, where my husband works as a radiologist. Since there have been no precedents before me there is no set protocol for the treatment of appendix cancer. I have been very lucky in the sense that my cancer has been detected early. If my appendix had ruptured, it would have evolved into PMP. Still I worry. I am 36 years old, and am the mother of two young children. I would love to get in touch with you, and we can exchange info. Have you visited the Brian's Story website? I found a lot of support there. Good luck!

Michelle
Michellemcwu@yahoo.com

KKW
Posts: 1
Joined: Jan 2003

Hi Kim! My name is Kristina Waldrop. I am 39 years old and live in Austin, Tx. with my husband and two daughters (ages 15 and 11). I was diagnosed with Pseudomyoxma Peritonea back in October of last year. After going through surgery, I feel pretty good right now. We were all shocked to learn how rare this type of cancer is. I go to MD Anderson Cancer Center in Houston, Tx. to have the interpeitoneal chemotherapy and debulking surgery February 21st. Hopefully this will take care of things for a while.
I hope all is well with you.
Take care and God bless.
Kristina
Kwaldrop4@cs.com

lesliemassage
Posts: 2
Joined: Nov 2008

I hope this finds you well. I have PMP also and live in Austin, Tx. Do you have a local doctor at all or do you have to go to MDA for everything? I was diagnosed in 1998 in Dallas but moved to Pflugerville in 2001. I can't get a doctor in Austin to return my calls.

Leslie

lesliemassage@hotmail.com

RLinn50667
Posts: 3
Joined: Mar 2003

I was diagnosed with Pseudomyxoma Peritonei with unknown primary in September of 2001. In december I underwent debulking surgery at University of Michigan, and had 25 lbs of tumor removed. I then went into a trial chemotherapy program which has stopped the remaining tumors from growing but has not reduced them any. I have now been out of treatment for 9 months. I just sent my medical records to Dr. Mansfield, at the MD Anderson Cancer Center, in Houston, TX, to get a second opinion as to what more should be done at this time. As I feel that right now my oncologist is just waiting for the tumors to start growing again before he does any more treatment. Originally I was given a 50/50 chance of making it a year but have survived for aa year and a half right now. I am a 50 y.o. male, married with 2 older daughters and a 2 1/2 y.o son we adopted from Rusiia when this whole mess started. Would love to hear from others who are going through this and particularly anyone that is a patient of Dr. Mansfield's.

My personal e-mail is RLinn50667@aol.com.

Thanks

juliebeth
Posts: 21
Joined: Sep 2009

Hi,

I just joined. What are you doing now. I have stage 4 pmp appendix ca with mets to lung. I have been on chemo off and on for the past two years and I am looking for other options. I can't do surgery because the ca is in my lungs.

Thanks for your input,

juliebeth
Posts: 21
Joined: Sep 2009

If it is not outside the abdomen wall the the mos is the best solution. I am unble to have the surgery because it is in my lungs.

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