Specifically mucinous adenocarcinoma

Kathleen808 said:

Beth
Beth,

You have always been great support for us.

aloha,
Kathleen

bdee said:

Mucinous adenocarcinoma
I was diagnosed with this very rare form of cancer of the appendix January 23, 2009. I have been having chemo treatments since February '09. According to my doctor, I will have chemo treatments until the end of my life with no hope of a cure. I have seven tumors left over from my cancer. In the last 19 months my tumors have all grown. Since April '10 until late July '10 one of them has grown from 6.5 cm to 8.5 cm. The biggest growth of any one tumor and I now have fluid building up in the pelvis are that is believed to contain mucinous adenocarcinoma. No doctor in Arkansas had ever seen this type of cancer, so they put me in the Stage IV Colon Cancer category for cancer statistics here in Arkansas instead of appendix cancer or mucinous adenocrcinoma.
My chemo is every other week, a mixture of 5FU, Louvecorin, Avastin and CPT-11. My first four months I had Oxylplatin rather than CPT-11, but Oxy almost killed me. I went from March '10 to June '10 with just 5FU, Louvecorin and Avastin, then my CEA started rising at an alarming pace, that's why my Onc started adding CPT-11. It made me lose my hair again and me CEA has gone back down to 8.4, so even though the CEA is looking good the CT scan sucks.
Sorry all my story is bad news. I was told my outlook with chemo would be 2-5 years.

Debbie in Arkansas

abrub said:

mucinous adenocarcinoma of the Appendix
And yet, with surgery and limited chemo, my mucinous adenocarcinoma of the appendix, stage 4, is in full remission. I've been done with treatment for over 2 years.

It depends on how the tumor has spread, and the details of the tumor (mine was "low-grade, slow growing mucinous adenocarcinoma".)

Cancer stories for the same cancer can be good and can be bad. It's important to work with the best oncologists and cancer centers available to you - that makes a huge difference.

I know that with another surgeon, I probably would have had a colostomy - temporary or permanent, don't know,as I was resected in 2 places: sigmoid colon and colo-ileac junction. My surgeon put me back together without an ostomy. You need the best care you can get. And someone else's outcome doesn't define yours.

abrub said:

mucinous adenocarcinoma of the Appendix
And yet, with surgery and limited chemo, my mucinous adenocarcinoma of the appendix, stage 4, is in full remission. I've been done with treatment for over 2 years.

It depends on how the tumor has spread, and the details of the tumor (mine was "low-grade, slow growing mucinous adenocarcinoma".)

Cancer stories for the same cancer can be good and can be bad. It's important to work with the best oncologists and cancer centers available to you - that makes a huge difference.

I know that with another surgeon, I probably would have had a colostomy - temporary or permanent, don't know,as I was resected in 2 places: sigmoid colon and colo-ileac junction. My surgeon put me back together without an ostomy. You need the best care you can get. And someone else's outcome doesn't define yours.

bdee said:

Abrub
How many tumors did you have after surgery? None of my tumors are in any of my organs (except the new 1 cm in the lung which the doctor said he wasn't sure what it was). I didn't have any colon removed, all I had removed was the appendix and 12 pounds of mucous.
What kind of chemo did you take and how long?

Thanks,
Debbie in Arkansas

herdizziness said:

Alice
As for me, my onc, says if the tumor board doesn't go for surgery, that I will be on chemo for the rest of my life, he believes that I will do well on that, and will live many years.
Just to let you know, I don't have appendix cancer. But there are a few on chemo for life, lasting years, his partner has two patients on chemo for life and they are still alive 5 and 6 years later respectively.

taipei said:

mucinous adenocarcinoma
Hi Kathlee and ****: I was dx cc on 06-2003 met to liver and lungs, my onc did not tell me what kind of cc, until later I got a copy of path report then I knew was mucinous. History: I was born at Taipei Tawan, have been live in USA since 1963 marrried to a white man. My diet was 90% of western food.Very little veg and fruit, I have three children, and a stressful job for long time. Because I had very bad pain, so surgery first then chemo follow it was CPTII(Camptosar 5-Fu, Leucovorin) till July 2004, when Avastin come to market, my onc add that with chemo, at that time the liver were clear, but lungs nodules no change 3 on the right side and 2 on the left side. treatment change to folfox6 for 6 times, ct show nodules gone, in remission for about 6 mo, then nodules come up again, so another folfox6 for 7 times, went away, onc put me on xeloda w/avastin maintenance program till Dec 2006, then 3 nodules come back same place 2 on right side 1 on left, so, onc and I want out, had surgery life side 02-2007 was about 1cm tumor and 08-2007 removed 2 on the right, clear since then. Twice surgeries was at MDA, I live in Houston. I had 5 mo of chemo after surgery, Xeloda and Avastin, last treatment was Dec 2007. I just had a PET CT scan 9/1/2010. Report say (impression) FDG PET CT scan demonstrating no definite evidence of recurrent or metastatic colorectal cancer, onc say lungs are OK.
Hope you can understand all this, so, I am 7year 3mo survival.
God bless you and family.

Winnie in Houston