Carcinoid Tumors

[quilter]

My husband is 64 years old and in "good health". He has had flushing and tiredness for a year and was diagnosed in May of Carcenoid Cancer. He has it in lympgh nodes, a tumer in his colen and lesions in his liver plus after a two day scan he has it several more places including "legions of lesions next to, not excluding his pancreous." He is taking a once a month shot to help with symptoms but it will only work for 1-1 1/2 years.
His smain symptoms include: being very uncomfortable in his upper abdominal area and tiredness
He has a possitive attitude but will not do other treatments. He is past any surgery and any other treatment will not cure just prolong his life. Can anyone give us an inteligent guess on his life span? Thank, Quilter

[family1317]

HI MY NAME IS SHEA AND IM 34 YEARS OLD AND I WAS RECENTLY DIAGOISED WITH CARCINOID SYNDROME WITH SEVERE METATSES TO THE LIVER(8-9 TUMORS) THIS ALSO AFTER A COLON RESECTION AND APPENDIX REMOVIAL.I HAD FLUSHING,SEVERE DIAHERRA AND BAD STOMACH CRAMPS AFTER I ATE ANYTHING...THIS WENT ON FOR ABOUT 2-3 YEARS AND I WAS ALWAYS TOLD I HAD IBS OR FOOD POISIONING SOMETHING LIKE THIS ALWAYS...WHEN THE SYMPTOMS GOT SO BAD I STARTED TO THROUGH UP MY BOWELS I WAS FINALLY ADMITTED TO THE HOSPITAL AND THATS WHEN THEY HAD AN IDEA OF WHAT I WAS SUFFERING FROM...I RECENTLY JUST GOT BACK FROM MD ANDERSON HOSPITAL IN HOUSTON TX. AND I WAS SEEN BY ONE OF THE TOP CARCINOID DOCTORS THERE IS OUT THERE AND LET ME REMIND YOU THAT EVERY CASE IS DIFFERENT,,, THEY WERE SHOCKED BECAUSE I WAS SO YOUNG AND THEY DONT SEE THIS TO MUCH IN YOUNGER PEOPLE,,,ALSO MY MOTHER HAS CARCINOID CANCER ,BUT I HAVE THE SYNDROME,,,MINE HAS SPREAD ALOT FASTER AND STRONGER AFFECTING MAJOR ORGANS,,,MY DR. GAVE ME A LIFE SPAN OF 2-5 YEARS WITH CLINICAL TREATMENTS,,,RIGHT NOW IM TAKING SANDOSTATIN TO CONTROL MY SYMPTOMS AND MAN DOES IT MAKE A HUGE DIFFERENCE...MAY I SAY THERE ISNT ALOT OF TREATMENTS SO TO SAY OUT THERE FOR THIS BUT YOU CAN FIGHT THIS....IF YOU CHOOSE TO....IF I CAN BE OF ANY HELP TO YOU PLEASE FEEL FREE TO POST RESPONSE AND MAYBE WE CAN EMAIL ONE ANOTHER....MAY THE LORD BLESS YOU AND YOUR FAMILY...

[quilter]

Dear Shea, You are too young for this disease! I would be interested in communicating more with you. We are two hours west of Chicago. My husband has "stage 4" and has chosen not to do any more test or trials. He is getting Sandostatin once a month but if I understand correctly, that will only work for1-1 1/2 years before it quits working. This cancer is diagnosed only 5,00-13,000 a year in USA. As far as I can tell, no one can really predict when or how it will effect each person or what organ will shut down first (in stage 4). We have seen a Carcenoid specialist in Iowa City. I would really be happy to communicate with you. As you noticed, I posted this in August and you are the only person who answered me...thanks and best wishes, Pam..."Quilter"

[family1317]

HI PAM,,ITS SHEA..IM VERY INTERESTED TO SPEAK WITH YOU MORE IF YOU WOULD LIKE AS WELL...WELL PAM I ALSO HAVE BEEN TOLD MY CANCER IS IN STAGE 4-B AND I ALSO TAKE SANDOSTATIN..4XTIMES A DAY.(IDO MY OWN INJECTIONS)THE (LAR)- ONCE A MONTH DIDN'T WORK FOR ME AT ALL.I HAVE 8-10 TUMORS IN MY LIVER AND THEY WERE VERY WIDE SPREAD THROUGH OUT MY MID SECTION..MANILY THE GASTOINTESTINAL..THIS IS WERE THE CARCINOID USUALLY STARTS 95% OF THE TIME.FROM WHAT I UNDERSTAND FROM THE DOCTORS THIS IS A VERY RARE FORM OF CANCER THIS IS WHY SO MANY OF US ARENT TREATED UNTIL SEVERE DAMAGE HAS ALREADY OCCURED...I WILL START MY TRIALS IN JAN.AND I MIGHT SAY THE SIDE EFFECTS ARE GRIM BUT I WANT TO TRY WHAT EVER I CAN, I HAVE 3 CHILDREN AND A HUSBAND AND MOST OF ALL MY SELF TO LIVE FOR...PAM ALSO FROM WHAT I HAVE LEARNED IS THAT ONCE THE CARCINOID HAS METASTESIZED TO MAJOR ORGANS WHICH ARE ALWAYS THE HEART,LIVER.LUNGS AND KIDNEYS I HATE TO EVEN TYPE THIS BECAUSE I DONT BELIEVE THIS THEY HAVE TOLD ME 6MON.-2YEARS OF LIFE SPAN...NO WAY IM BELIEVING THIS,,SO ALWAYS REMEMBER EVEY PERSON IS DIFFERENT,ALSO THAT YOUR HUSBAND HAS THE RIGHT TO DECIDE RATHER OR NOT HE WANTS ANY TREATMENTS..IM SO SCARED OF THE SIDE EFFECTS BUT I CANT JUST SIT BACK AND LET THIS BEAT ME...IM ONLY 34...HERE IS MY EMAIL ADDY IF YOU WOULD LIKE TO TALK---[moderator note: e-mail address has been removed] MAYBE WE CAN CHAT OR MAYBE HAVE A PHONE TALK IF YOU WOULD LIKE...PAM PLEASE KEEP IN CONTACT WITH ME IF YOU HAVE ANY OTHER ?'S AND I WILL TRY MY BEST TO GIVE YOU THE LATEST THINGS I HAVE LEARNED AND WHAT I HAVE BEEN THROUGH....SHEA

[quilter]

Dear Shea, I am thrilled to find someone to communicate with! (But sorry you have this disease.) I sent you an email last night but it didn't go through...is your address correct? I hate to put it out there for everyone to see but check and if it isn't correct I'll put my address up and see if you can mail to me first to make my computer respond to yours. So glad to find you! Thinking of you, Pam

[pann]

Hi my name is Paula.. My husband has Carcinoid cancer as well. He has it in his pancrace and liver and nodes. He also has the symdrome and is taking sandostatin shot once a month. He is 49. The DR. told him not doing anything he had 6 months. He has done 2 different types of chemo. In April when we found out, his blood test showed a 255 count, in September his count was 31 and the tumors were the same. We just did more test in November and his count is back up to 235 and the cancer has increased. You would never even know anything was wrong. He dosen"t feel bad he looks pretty good and he still works. We are trying to see if we can get in at MD Anderson for any trails, his DR. thinks that would be best He is going to try him on 2 different types of pills for chemo but we are waiting to hear from MD first. The bad part of this is we don't have any insurance, so that makes it harder to get in. I really don't understand alot of this so whatever info ya'll have would be very helpful. I will be praying for both of you and your families also. Shea how old are your kids? we also have 3. They are grown and still are having a hard time with this.

Thank you
Paula

[family1317]

HI PAULA, MY NAME IS SHEA AND I JUST READ YOUR STORY,,IM SO VERY SORRY BUT I WILL SAY I COMPLTELY UNDERSTAND WHAT YOU AND YOUR FAMILY IS GOING THREW..MY CHILDREN ARE 17,15,13--2 BOYS AND 1 GIRL...WELL I JUST GOT BACK FROM MY LOCAL DR. YESTERDAY AND WAS TOLD THAT MY PANCRASE IS WORKING PROPERLY..I HAVE MADE 1 TRIP TO MD. ANDERSON IN OCT.I WILL BE RETURNING IN JAN.TO START MY TRAILS...NOT LOOKING FROWARD TO OT BUT I HAVE TO DO FOR ME AND MY FAMILY...MD ANDERSON IS VERY GOOD IN WORKING WITH PEOPLE THAT DONT HAVE ANY HEALTH COVERAGE...TALK TO YOLANDA JOHNSON IN THE GASTOINSTENIAL UNIT SHE'S WONDERFUL..AND ALSO TALK TO KELLY KILER SHE IS A SOCIAL WORKER THAT MAY BE ABLE TO ASSIST YOU...IF I CAN BE OF ANY OTHER ASSISTANCE TO YOU PLEASE LET ME LNPW...GOD BLESS YOU AND YOUR FAMILY....SHEA BY THE WAT IM ONLY 34

[quilter]

Dear Paula,
I'm sorry for your news. My husband has chosen not to do follow up test so we do not know if he has maintained his status or if the diseased has progressed. Thursday is his 8th shot. I just communicated with his DR. and ask him about how long the shots work. This was his answer: "Most patients get less than 12-18 months of tumer control with Sando but some much more. Let's hope you get more." Lee is still taking shots once a month, working and "looks well" to anyone that doesn't know better but he feels like the disease is still growing, especially across his liver area.
As his wife, I am really trying but I am having a hard time. It is hard to live with this but it sounds like it will be only harder in the future. Do you have family or a support group? Do you feel alone? Does your husband talk about it? My husband doesn't want to talk about it so we only talk about symptoms when he brings them up. We spent the summer "getting our house in order". Emotionally I feel on a roller coaster...does anyone else feel this way? Thanks for listening. Quilter

[pann]

Thank you for the info. on MD Anderson, I will give her a call Monday morn. Lonnie has problems with his sugar levels, they say he is not diabetic but he has to take insulin and pills. I am diabetic so we share our meds,, but to get him to not to eat sugar is crazy he is a big time sweet eater.We also have 2 boys and a girl, they are 25, 23, and 20. He dosen"t talk to much about any of this, he tells everyone he is fine. Sometimes I can tell he dose not feel well by looking at his face. He is so strong and won't tell the family anything. does he really not hurt or feel bad? What treatments have you had?
Thank You so much, You really have been a help and probly don't realize how much. It is hard to talk about this with anyone.
I'm praying for you - Paula

[quilter]

Paula,
Your husband sounds sooo much like mine. Lee's answer is "as good as I can be". He also won't talk to anyone about his disease or how he feels. The children ask me questions...if I push him to talk to them his answer is "isn't there something else we can talk about?". I, like you, can tell how he feels by looking at him. He is more tired than he used to be and in fighting that he can be "owly". He tries to act so normal all day long and sometimes when he comes home at night he is short with me. Do you see any of this? I am beginning to wonder if this pattern is more toward the end of each month when he needs another shot. Emotionally I find it very hard. I'm very tired and find life hard to live like everything is normal. Sometimes I feel like I am dying right along with him. I find the not knowing very hard. He looks so good. When I told the nurse this she said, "Pam, Lee is not well." They told us to do anything he felt like doing...NOW. Don't wait. That was in May. Lee handles all of this by working everyday. It is a coping mechanism for him. He will die with his boots on and sometimes I think it could be a long time away or that I'll die first...it may be. Only God knows. A friend told me that it is "harder to be outside the bed than in the bed". Sometimes I think she is right. Thanks for listening. You are the first person I've found in a similar situation. Quilter