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Specifically mucinous adenocarcinoma

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Hi Everyone,

Dick just finished his 28th treatment. He unhooked yesterday and helped me set up my classroom all day today. He is a wonderful man.

He wants to know who out there also has mucinous adenocarcinoma and what your story is. In other words is there a pattern with this cancer? Did you find a treatment that worked? (I know what does worked mean? 1 year, 5 years, 10 year?)

That would be great if you could share you story.

Aloha,
Kathleen

dorookie's picture
dorookie
Posts: 1736
Joined: Jul 2007

But wanted to say how great it is to still have Dick with us, as I am sure you are...I am so happy that you two have each other..God Bless you both

HUGS
Beth

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Beth,

You have always been great support for us. :)

aloha,
Kathleen

dorookie's picture
dorookie
Posts: 1736
Joined: Jul 2007

Kathleen, you have always been great support for me as well, thank you...

HUGS
Beth

It truly is amazing the relationships (friendship) that are made here on this board huh?

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Kathleen - Dick and I don't have the same kind. Sorry I can't help. I just wanted to tell you that I think about you and Dick all the time. Loved the recent surfing post. A surfing friend of mine says there is one great spot for surfing on the NC coast and we're going to go when I get better.
I'm supposed to be teaching 3rd grade. I wish I was setting up my classroom now too. Oh well, perhaps next year.
Take care. Roger

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Roger,
I bet you are a wonderful teacher! I pray you are back in the class next year.

Aloha,
Kathleen

John23's picture
John23
Posts: 2141
Joined: Jan 2007

You can find some info on this website's forums, in the archives:

http://csn.cancer.org/search/node/mucinous+adenocarcinoma

I wish you both all the best wishes.

John

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Thanks John

bdee
Posts: 305
Joined: Feb 2009

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

impactzone's picture
impactzone
Posts: 510
Joined: Aug 2006

Always appreciate your support. I am setting up my room again. 24 years teaching now. I won't start the year out as I go in for 3rd lung surgery on the 16th but I 've got my Eddie Went shirt. You might want to check out that other link I sent from Al Merricks son who is the pastor in Carpinteria.
All my best and I'm sorry I don't have info on adenocrcinoma. Have you checked out MD Anderson in Houston. I got some info on pencil beam proton therapy and I do not know if that could help. It seems that a lot of raods lead to Anderson.
Chip

abrub's picture
abrub
Posts: 1880
Joined: Mar 2010

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.

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

I am glad dick is feeling better and he helped you in the classroom How fun.Angel would come to my work and help me sometimes i liked that.Angel had the same kind of cancer dick has but angel was a diabetic also and i think that was very bad in angels case so don't think my story is the way it goes because it is not. Take care and you and dick are always in my prayers.

michelle

bdee
Posts: 305
Joined: Feb 2009

If it doesn't hurt too much, can you tell me how long Angel had chemo and how long he lived after being diagnosed?

Debbie in Arkansas

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

Angel did the six months then started again 2 months later for 3 months he lived 17 months from dx.

michelle

bdee
Posts: 305
Joined: Feb 2009

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

abrub's picture
abrub
Posts: 1880
Joined: Mar 2010

After my second surgery, there were no more visible tumors. Tumors had been removed from my ovary, lots on the omentum, the outside of my colon in several places, and in my appendix. There were lots of spots of bits of tumor all over. I did not have large quantities of mucous (PMP).

I had 5 cyles (of a planned 8) of intraperitoneal chemo with FUDR - a 5FU derivative. That was followed with 7 of a planned 12 cycles of Folfox. I have been cancer-free since surgery - all chemo was adjuvant, with the IP being more important in my case. I was done with chemo about 13 months after my diagnosis.

Memorial Sloan Kettering does not do the heated IP chemo, tho they now will refer out for it as appropriate. However, they still don't feel it's necessary for all patients.

Debbie, if you haven't seen someone who knows appendix cancer, then you need to go for a consult. The only time I heard of "chemo for life" was for someone who had inoperable appendix cancer. If yours was surgically removed, tho the mucous may come back, I understand that chemo is in limited amounts, depending on the situation.

Alice

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

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.

budbeerlady
Posts: 1
Joined: Sep 2010

My Dad was diagnosed with mucinous adenocarcinoma when his appendix burst in October 2005. It took some real searching but he ended up with an amazing doctor in Grand Rapids here who had seen 7 cases. They did the right helectomy (sp?) on him and continued to monitor him with scans every 3 months. He was in great health for being 55 all things considered.

Last summer his routine scan showed a spot on his liver, they did a biopsy and scheduled surgery. So he made it almost 4 years until the recurrence. Once inside his doctor found it was on his liver, and on his diaphragm. They removed the infected liver area and part of his diaphragm. They did the heated intraperitoneal chemo during the 9 hour surgery. I think the diaphragm was harder on him than the liver to heal from. He had the hiccups for almost a month and he was in alot of pain from that. He had a spell of intestine issues that I forgot the name of and then his gall bladder went south. It was too infected to remove so it was drained and then removed a few months later. He was in the hospital 4 times from July to November.

He is back on 3 month scans and they are watching everything. The doctor is very hopeful but as you all know with this kind it might reappear elsewhere sometime much later.

taipei
Posts: 33
Joined: Aug 2008

Hi Kathlee and Dick: 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

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

so sorry can't help with that specific request from Dick. So happy to hear that he helped set up the class-room-what a happy day that is.

Thinking of you, and respecting you both...you have always been there for me.....for so many of us...Kathleen you have been so generous...

thank you

mags

VivianGB
Posts: 46
Joined: Jul 2010

Hi Kathleen,

My rectal cancer is mucinous adenocarcinoma. I was diagnosed July '08.

I had 6 weeks of radiation with Xeloda first. Then 7 weeks after that I had surgery to remove the tumor, a permanent colostomy and hysterectomy (ovaries and uterus were fried from radiation). About 8 weeks after surgery I started FOLFOX and made it through 8 treatments, but had a really bad reaction to #8 and finished off my 6 months with Xeloda only. Finished the end of July last year.

The 3 month follow up appointments seemed to be going well, but each time my CEA crept up about a point and went from 2.1 to 4 in 9 months so my oncologist ordered a PET/CT scan and there was a spot on my liver. Liver resection was 3 months ago in June. I thought I would have to do chemo after surgery, but my oncologist recommended that I not do it for 2 reasons, 1 because of the bad reaction to the oxaliplatin and 2 I had only gone 10 months before a recurrence. I discussed this at great length with my oncologist, I had a hundred "whys", but the bottom line was that studies had shown that it wasn't going to help me, just make me feel sick. I am going to a teaching, learning cancer hospital for my cancer and I've found out that they will not give you anything if they don't have proof it will help.

Well, anyway I found out in August that the PET/CT they did showed another spot, this one is in my lung, so I'm going to have VATS on Oct. 8th for it. I'm still hoping to be NED someday, they are still using the word cure, just going about it a little differently, cured by the knife I guess! : )

Best of luck to Dick!

Viv

jparker812
Posts: 1
Joined: Feb 2011

Kathleen,

I hope you both are still around and making it. As you may have found out there is not much info on this disease, as I have a type that is a mass outside of the lower large intestine and has nodules at different parts of my abdomen. I experienced a great deal of constipation the first year, but now that I have my meds right I go everyday. I take the Mirrolax every morning to stay regular. Eat well, that is the key. Use fruit blended with gensoy powder (Walmart has it) if diet is poor. try using some "urbal weed" for nausea and increase desire to eat. maintaining weight is the key to survival,along with a good mental state. I see no pattern yet, other than we have been able to keep it stable and recently it was reduced in size by the opinion to "just try something" so I went on Xeloda for 6 months and after 2 years it finally showed reduction. I am going to see Dr. Armondo Sardi and the Mercy Hospital in Baltimore. I have been rejected by other surgeons that perform the IPHC procedure along with the surgery, but he has agreed to see me. Reply back on who you have seen that is considered an expert and I'll assist you. I have done 2 years of research into the treatment and cause of this disease so I may be able to help you survive. I have been going for 2 years and counting since diagnosed, and I was sick long before I went. By the time the symptoms show up its too late. A colonoscopy would not have found it since it was outside, until it's too big to allow the scope to pass, which is how mine was found.

NJC
Posts: 71
Joined: Nov 2010

Kathleen,

My wife was diagnosed with Mucinious Adenocarcinoma this past September. This type of cancer only represents 10-15% of colon cancer. It is treated the same. Unfortunately, the 15-20 tumors that are spread throughout my wife's liver are mucinous as well. The problem with that is the tumors will never disappear, rather the cancer cells will die while the mucinous tumors remain. Thus, the crux of treating this type of cancer. It's all well and good provided the cancer is eradicated and never returns. However, if and when it should return, it will be very tricky to treat because with out any new lessions or growth in the original tumors, there will be no way of detecting which "tumors" are active because they do not light up on the PET. Why CEA monitoring is very, very important!

Best of luck,
-Joe

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