Atypical Stage iv Colon Cancer

[Susan]

Hello, everyone,

My name is Susan, and this is my first posting. I've read the posts on this board for th past several months, but have been a little hesitant to write. At age 56, I am quite a bit older than most of you, but the quality of advice and information on this forum made me go ahead.

I live 60 miles north of the Arctic Circle in a town (well, truckstop) called Coldfoot. It is about minus thirty right now, so we are definitely living up to our name. My oncologist, the nearest one in the state, is 250 miles away in Fairbanks. Makes for interesting travel in the winter.

I was diagnosed with stage iv colon cancer on June 1, 2004. There was a tumor the size of a lemon in the cecum, 7 positive nodes, and a separate tumor in the omentum. All of this was successfully resected. My preoperative CEA was 42.6 and had dropped to 3.7 three weeks later. My oncologist told me that this was not a typical case of stage iv since there was no metastasis to either the liver or lungs.

After six months of Folfox with all the usual side effects, I have been on Avastin and Xeloda ever since. It is mostly maintenance chemo. I get 900 mg of Avastin every six weeks and begin a two week cycle of Xeloda at the same time. I take the Xeloda only once during this six week cycle.

A PET scan in January 2007 showed no evidence of disease. A CT scan a year earlier was also negative. My CEA hovers in the 2-3 range. (I do not smoke.) Whenever I mention a chemo vacation, my doctor shakes his head and says maybe in another year or two. Hmmmm.

Now that I've entertained you with all this preliminary info, I'll get down to questions. Is there anyone else here who also had mets to the omentum and no place else? Has anyone here been on chemo for three years without a break? My brain is starting to get a little fuzzy!!

Thanks for any info and insights, Susan

[Lifes2short]

That's a long time to be on chemo without a break. I did only six rounds of Folfox and that seemed like a lot. Wow, can't imagine how bad the Oxaliplatin side effects must have been for you up there in the icy cold North!

I guess it differs by doctors, but mine all seem to be fine with the fact that I'm not on chemo when my disease appears to be in remission. It sounds a bit odd, maybe worth flying to the lower 48 for a second opinion?

You must be tough to have survived three years of chemo! Good luck in your quest for info.

[MissKim]

Susan, Congratulations on being NED! I live in Idaho and FOLFOX in the winter was quite challenging -- I was always snuggled up with blankets or an electric blanket. I really got tired of having even room temperature liquids causing problems. I can't imagine living in Coldfoot with those side effects. You must be one strong lady!!! My onc. always says "chemo breaks are a good thing", even if I question him whether we should continue. I have been on and off chemo since I was diagnosed with stage 4 cc in June 2003 with mets to my right ovary. The tumor on my ovary was discovered first and I was originally diagnosed with stage 2 ovarian cancer, because cc mets rarely go to the ovary first -- they called it a Krukenberg tumor. I have been on Vectibix since end of November and Xeloda was just added to my treatment on 2/28. Today was the first day I felt ill from the Xeloda. Your posted note just shows how different all oncologists are. I would love to be NED and wonder now if maybe I should have been on maintenance chemo a bit longer. I guess that you have to weigh the pros and the cons. I think another opinion couldn't hurt though. This message board is a great place to come for information. Before I posted here, I thought I was a freak for being diagnosed at 38 -- the doctors kept saying "we just don't see this." I wish nobody was diagnosed with this evil disease but at least we can share on this message board.

Sincerely,
Miss Kim

[missjv]

hi susan,
well we all have different cases i guess. mine is very weird and happens rarely. i had a small cancerous polyp and was told i was stage 0 polyp was removed during colonoscopy, margins were clear 2 different path report from 2 different labs stated it was a well differentiated which is least aggressive cancer and did not invade colon wall and no vascular invasion. my cea was 2 and still is. had a cat scan done and there on my liver were 3 little mets. my gastro doc was scratching her ass and told me there is no way that is colon cancer mets on my liver i must have cancer somewhere else so i had every scan every test and finally liver biopsy confirmed it was from the colon. well a few months before i had scans and ultrasound s done before my hysterectomy from endometriosis and my liver was clear and my gyn said my liver had nothing on it. so then i go to my first onco and here comes the statistics which if you have read them on stage 4 you know what im talking about and then i was told i would be put on palliative chemo until it quits working. i said kiss my butt and went to another doc and was told about liver resection and i was told yes i have metastatic cancer but it was caught early if that makes sense and with chemo and resection i have a very good prognosis also good i had no lymphnode involvment and my primary cancer the polyp was very small which was also a good thing, so im hoping these docs are right i had liver resection back in december and as of now i show no evidence of disease i have my 3 month scan on tuesday march 6 so hopefully that turns out good.


missjv

[Magnolia]

Susan, Not having mets in your lungs or liver is a good thing. You may be on chemo still because of the size of the original tumor and the number of positive nodes. The drugs you're on are usually fairly well tolerated. Your doctor may just want to be sure you don't recur while he keeps an eye on your CEA.

I had Stage III cc with six positive nodes. I got six months of Folfox with Avastin, and now I'm on Avastin alone. My protocol is experimental in Stage III. The Avastin is used in Stage IV routinely, but in Stage III it's being studied to see if it prevents recurrance better than Folfox alone. I had 12 rounds of Folfox, and will have had 23 of Avastin by the time we finish. We skipped one because of low counts. We made up the skipped round of Folfox, but won't make up the skipped Avastin.

I know you've been through a lot, but if you're hanging in, I'd say keep on keepin' on. Do whatever it takes to survive. Life is worth it.

I live in Virginia, and we just had our coldest Febuary in 10 years, after the warmest January in many years. I can only imagine what Oxaliplatin must have been like where you live! It was bad enough here in the summer. I was whining because I couldn't go swimming or eat popcicles. We had an ice storm on Valentine's Day that shut the city down. I hate ice. It looks pretty, but it's really scary. I have a 100 year old oak tree in my back yard that could come down in heavy ice. We don't get may heavy snows here, but we do get some of those nasty ice storms. And what I call a heavy snow is about six or eight inches. LOL! Two inches once or twice a year is more typical. Today is a cool, sunny, blustery, March day.

Keep your spirits up, Susan. There are lots of survivors here to chat with when you need to. Not everyone has had your exact experience, but they all have some story to tell. You're not all alone up there in the frozen North! And CELEBRATE NED!!

[Magnolia]

BTW, Susan, I'm 52.

[karent]

Susan,

I was diagnosed with Stage IV in Dec. 03, my metastatic disease was found microscopically in my omentum. I had 11 out of 16 lymph nodes positive for disease. I had 12 weeks of 5 FU/Leucovorin following my surgery. I was pregnant at the time and this was the only treatment we pursued at the time. Post delivery I had 6 cycles of Folfox and Avastin. Since I didn't have a tumor in my omentum, the treatment was considered adjuvent.

All of my scans for past 3 years have been clean and I hope they continue to be. I don't know the protocol in your situation, but it is worth pursuing some information and another opinion.

Blessings to you and your loved ones.

Peace,

Karen

[Simons]

The experience of pain has at least 2 different parts. The 2 main ones are what we call a 'sensory component' and an 'emotional component'. You may show this by having a small pain on yourself, for instance by presing one of your fingers in a pair of pliers. Start out slowly, and then slowly increase the pressure until it becomes unpleasant. See that you feel the pressure first, and then as the pain starts, you want to remove your hand away for pain relief.

[scottg]

i was diagnosed 4/06,,,,colon tumor,and tumors in my omentum and at the time they there were seed like tumors the size of sesame seeds on my liver and abdomine ,liver seeds might have been cysts and 19 of 40 lymph nodes pos.. had colon tumor and omentum surgery,6 months of chemo.never tumors IN liver or lung and after second surgery all the seed like tumors were not cancer or dead,, external liver seeds were gone.it seems to me from seeing alot of cc patients that the ones similar to your case and mine with no liver or lung react different .i am not on chemo after the 6 months of treatment and will have a scan in 1 month.my omentum was removed as well as my appendix and 10 inches of colon.Scott

[Lisa Krav]

Dear Susan

I was happy to read your posting. My name is Lisa and my sister has the Krukenberg Tumour. She is 50 years old and is just about to start a new regime of chemo. My sister Olga was diagnosed with Krukenberg cancer in April 2006. She underwent a chemo regime of ECF. Her tumor did reduce in size. The oncologist did not recommend any other chemo following the ECF course in August. Her results were good until her last scan which showed mets in her omentum. The oncologist is recommending a new course of chemo. I read you were on Avastin and Xeloda. In Australia we have fewer cases. I m not sure whether we have the same drugs available either. I am seeking any information or opinions. I search the net for answers nearly every night but there is little information on this type of cancer. Have you any thoughts on the cancer hospitals in New York called Sloans or the Md Anderson cancer hospital. I would appreciate any information . I hope you are living strong.

Lisa

[Lifes2short]

Sloan and M.D. Anderson are both very well respected cancer hospitals in America. I believe that you can self refer to M.D. Anderson (possibly to Sloan as well). There should be instructions on their website. It might be well worth your while to take a long "vacation" and visit one of these hospitals. M.D. Anderson is in Houston, Texas. The weather is warm all year in Houston. Sloan is in New York City. The weather varies, but there's certainly a lot to see and do there. New York City is likely more expensive to stay in.

Good luck to you!