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Appendiceal Cancer

ann9190
Posts: 3
Joined: Mar 2012

Hi, I'm new to this site and to discussion boards in general. But I am still recuperating for 10-hr surgery in Sept 2011 to remove tumors from my abdominal wall, to remove my spleen, gall bladder, sm intestine, and R colon, and a chemo bath in the same surgery. When the doctors said it would take 4-6 mos to recover, they did not exaggerate.

I have appendiceal cancer, signet cell, Stage IV, as it had metastisized to my ovaries, rectum, etc. No tumors have been found in my liver, lymph nodes, or other major organs nor in my bones.

Anyone have anything similar? This has all happened so fast, and I am just now coming to terms with how it is changing my life. I'm at the point where I am focusing on nutrition and diet, but not finding a lot of information online.

Would appreciate any help you can give. Ann

Anxious Kathy
Posts: 21
Joined: Dec 2009

My husband is having the same surgery in 2 weeks! We know the surgery lasts forever but it does our hearts good to hear you came through it! We don't know quite what to expect either and yes, it comes at ya really fast. He was diagnosed when they found it during a hernia surgery...5 rounds of chemo did nothing, so surgery it is. Since you have just gone through this, do I need to find him a walker? A shower seat? any advice would be greatly appreciated...we don't know how to prepare for him coming home. He is in great spirits, better than mine. I'm the worrier of the group! They are telling him that he will not have chemo after the surgery, that THAT is the chemo treatment. Have you been told the same? he is having gall bladder, spleen, appendix, portion of stomach, omentum, some intestine, etc etc removed..things we didn't even know were in there! But of course, they will know more when they get in. We are going to Wake Forest Baptist in North Carolina.
I truly hope things slow down for you a bit and let you catch your breath! Yes, they keep preaching nutrition to us...protein is so important! Rebuilds and repairs muscle...that is all we've actually been told at this point...Hang in there, Ann!

Kathy

Anxious Kathy
Posts: 21
Joined: Dec 2009

there are many wonderful women there to help and share ideas...they've put up with me for a few months now asking all kinds of questions! They really are so informative, it helps to understand more about what we're all going through to deal with it all!

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: Yes, there are at least two women on the peritoneal discussion board that have appendix cancer.
Cheryl

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

with lots of information on the surgery with HIPEC. I am an appendix cancer survivor (mucinous adenocarcinoma), and while I didn't have the heated chemo, I had 5 cycles of intraperitoneal chemo after my surgery - removal of omentum, ovaries, uterus, 2 parts of my colon, some of my ileum. Recovery is hard, but I'm now doing everything. Life is actually back to normal. I'm almost 5 years out from diagnosis, 4 years out from treatment, which included Folfox + Avastin systemic chemo. Most important is to ensure that you are treated by someone who is a specialist in Appendix Cancer.

A friend of mine is a 10+ year survivor of Signet Cell Appendix cancer.

As for needing a walker, they (the hospital) sent me home with one, but from what I've heard, most people don't need it. They are walking fine, albeit tenderly, soon after surgery. I had significant post-op complications that left me in the hospital for 4 weeks, unable to eat for most of that, so I was very weak. I didn't really need the walker (and hated it with a passion.) However, I was so weak that they wanted me to have one.

As for the FB group, it is the PMP Appendix Cancer Support Group. Many of us did not have PMP (I didn't). Amongst us all, there is a lot of excellent information.

Yes, we're out there, and many of us are doing well. You'll see my story if you click on my name.

Alice

Anxious Kathy
Posts: 21
Joined: Dec 2009

Wow..survivors everywhere!!! I cherish your story! It gives us both such hope! We know that this is the step we need to take to get to our tomorrows and we're ready to go! Haven't packed yet, but Monday is a few days off...ok...I'll stop procrastinating and pack! :) We will get there! The surgeon says once he gets all of the fluid out, he'll have such a better view and we'll know more the extent of the cancer to go after. But we're confident that we're going to get him through this. there are way too many good stories out there...they are getting this stuff! Thank the Lord!

We do have the walker just in case...I've had back surgery and am not much help other than just holding him steady, but other than that, we're just waiting for Monday. Some family is coming in for support and we're so glad! It has been amazing the outpouring of love and support. I've never truly understood cancer and he had a tumor in his mouth 2 years ago, which removal went well and nothing else....so we've never had to face it head on like this, but the cancer warriors are just amazing! You are a fine example!!!

Thank you!!! Kathy

hockey25
Posts: 2
Joined: Jun 2014

My son-in-law just 42 has been diagosed with Appendix cancer State 4. Trying to get more information.  He had HIPEC surgery.  6 month ago but some cancer came back.  Now they are going to put him on checmo.  Just hoping for some postive information.   Pat

landscape123
Posts: 2
Joined: Aug 2014

I have had my experience as well with hipec surgery and a previous colon surgery as well.  We had hipec done after the cancer came back after the colon was partially removed.  I had chemo after both surgeries, FU and avastian.  recently they said I was disease free.  I am almost back to normal after my December surgery.  Hang in there and try to keep your lines of comunication open as much as possible with your doctors.  Good luck.  I hope things are turning positive for you and yours.  It is a tough row to hoe.

bscat's picture
bscat
Posts: 2
Joined: Aug 2014

Hi
I am so glad to see there is a forum for this rare cancer. The doctors discovered a very large tumor last June. I went into surgery the next month. I was diagnosed with stage 4. They removed parts of my large and small intestine and both ovaries I had 11 rounds of chemo over a 6 month. A few weeks before chemo they discovered an abscess near surgical site of where the colon was resectioned. Chemo was tough but I survived. I get an MRI every 12 weeks. Most days I feel ok. I still struggle with the surgerical site. Every few weeks I get what I call flare ups, really bad pain sometimes a fever. This has been happening since January. I went ER first time, have had blood work and scans during inflammation. Nothing comes up, I even had an endo/Colonosopy in June. Has anyone had this pain too? The doctors seem to think its scar tissue that gets irritated from foods that my body registers as infection causing fever, but they don't have an answer. have recently become a vegan avoiding or limiting gluten products and eating organic whenever possible. But I still get the pain. If this sounds familiar to anyone let me know!! Most days I feel like a crazy person.

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

Bscat, if you are not seeing an expert in appendiceal cancer,  please get to one. The treatment is not identical to that for colon cancer, it usually includes some type of intra-peritoneal  Chemo, with systemic chemo not usually as important.

bscat's picture
bscat
Posts: 2
Joined: Aug 2014

Hi,

Yes I have the fablous team at UCSD. The powers that be sent me to Dr.Mchale for a mistaken ovarian cancer diagnosis. It was suspected as appendiceal during the surgery when he couldn't find my appendix and was confirmed after pathology.  They couldn't do the heated chemo, I was having blood loss and had been in surgery about 6 hours just debulking. The team decided to follow the systemic chemo 8 rounds. After a negative result from a laproscopic in January and physcially responding well to chemo, he ordered 3 more rounds. They have taken tissue from surgerical site during lapro and colonoscopy procedure.  I have MRI's every 12 weeks and  blood draws every 4 weeks. The HIPEC is the next option if there is a reoccurrance.  I feel strong but still have issues with stomach cramps and of course the surgerical site. I have tried a variety of food combos and still working to figure that part out.  My fabulous team consists of Dr.Fanta, Dr. McHale and Dr. Lowy. I really am blessed to have them, they are great and gracious with my craziness, but even they don't have all the answers.  

Any insights or suggestions from people that were debulked and have a similiar issue would be appreciated.  I am glad to know that I can connect with people facing this. As I am told we are one in a million.

 

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

I'm very glad you are in good hands. It makes all the difference with our cancer. Many people do get systemic chemo and watch and wait I'd the debulking was good. 

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