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small cell carcinoma of colon
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helcsn posted:
My husband was recently diagnosed with a rare form of colon cancer called "small cell carcinoma" and it had metastasized to his liver , he is stage IV and was in liver failure when it first occurred. Small cell is usually seen in the lung but can be seen in other places rarely. It occurs in about 100 people a year. He finished his first round a chemo and did well but they tell us it can come back any day. From what I read and they told us the prognosis is poor and survival rate is 6 months to a year. Does anyone have any experience with this? There is little research or treatments available because it is so rare. i am looking for any help?
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LinuxLady247 responded:
Hi and welcome,

Please try to ignore the survival stats that your husband's MD gave him. My mom (G-d Bless her soul) lived for 11 years with Stage 4 colon cancer. At 84 she was tired of chemo and passed peacefully.

Have you checked with a teaching hospital in your area about clinical trials? You can also contact the major cancer centers (MD Anderson, NIH,Mayo clinic, etc. via E-Mail to see what trials are in the pipeline) HTH Please keep us posted. I'll say an extra prayer that good news will come your husband's way soon.

You and your family will be in my prayers.

G-d Bless,

DaLy





You and your family will be in my prayers.

G-d Bless,

DaLy
 
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helcsn responded:
Thank you for your words of encouragement. We have checked about clinical trials and may do that. This form of colon cancer is not the same as most colon cancers it only occurs in about 100 people a year and that is the problem, there are not many people to do group trials. Glad to hear you mom did so well. Helen
 
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ruscoobydoo responded:
Hello

I am very sorry that you and your husband are facing this. This is very painful to write, but i have walked the path you are on. It is very important that your husband remain postive and have faith. It is VERY important that you have help and support from your family, friends. Not just for your husband but for yourself.

Now to be honest with you. i will not lie to you. Small cell colorectal cancer is a horrible and painful cancer, especially if it causes compete blockage. Etoposide and Carboplatin seem to be the treatment and initially the tumor shrinks. The cancer is very agressive. We started with Kaiser P but sought help at FoxChase. If your husband has responded and gained some time, i encourage you to take that cruise or trip/ vacation you have always wanted to take, make the most of your time and share all your heart. I wish i could offer you hope, because its what you so desperately are seeking. But all i can offer is my experience.

There may be trials avail for different chemo. Radiation is sometimes used locally to try and shrink the tumor. But Right now medicine can only offer pallatative treatment to manage this. I am sorry to write this, i wish the Drs had been as candid to me so I could have better prepared to say good bye.

This cancer left a hole in my heart and soul. My spouse was diagnosed with small cell colorectal cancer aug 06 and passed march 07. It was discovered stage 4 with 30% liver affected. Initially the tumor and liver responded to treatment and the cancer cells shrank. But dont let it fool you with false hope. Small cell is aggresive and comes back quickly (about as quick as hair grows)

I offer my heartfelt prayers to guide you both on this journey and I am sorry for being so honest.
 
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tcdms responded:
Helen-

My family and I are in a similar situation. Unfortunately, there is little to no research for small cell colon cancer. We has a doctor contact numerous hospitals and came up empty handed. The treatments help. Our family was told that we would have 6-9 months with our loved one and it has been about 1 1/2 years now with treatments. Unfortunately, the chemo does not seem to be as effective this time around and it looks like we will soon be headed towards the down-slope of things. We were told that at best if we go into remission it will be 6 months or less. Our oncologist keeps telling us that this is an incurable cancer and has suggested that we take a trip soon. If you come up with any advanced treatments please let us know. We have come up very empty handed and it is very frustrating to watch the person you love the most helpless and in pain. I wish you all the luck in the world. Enjoy the good times that you have, we are. My prayers are with you and your family.
 
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slpmoe replied to tcdms's response:
My husband was diagnosed with small cell Neuroendocrine of the colon in August. A colonectomy removed all the cancer cells and effected lymph nodes from the colon. He had six rounds of chemo to treat the liver and other sites. He is now going in for organ scraping surgery, which proposes to prohibit regrowth long term. Anyone have experience with this surgery? We have also explored shake and bake chemo at MD Anderson, where they pour chemo into the abdominal cavity heat and shake it to eat the lining of the exposed surfaces. Keep sharing experiences good and bad, it really does help.


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