Caricinoid Tumor

lmcp said:

My oncologist -
I'm seeing Dr. Zu at the Cancer Center Oncology Medical Group in La Mesa, CA.
Phone is 619 644-3030
Address - 5555 Grossmont Center Drive, La Mesa, CA 91942
By the end of our very first consult (he had totally reviewed all my test results prior to that), he had them give me my 1st Sandostatin injection. The improvement took time, and diet issues were tricky at first, but after time the benefits became obvious.
When was your wife diagnosed?
Luanne

Luanne
Rhonda was dx in March of 2008. Hers is non functioning so the sando did not help with any symtoms, but now its spreading we might go back on it if the chemo dosent work. Some studies have shown that it slows the growth down. We're going to the James at OSU and the Docs and staff there have been great and realy know there stuff.
Steve

robinmc said:

I am 39 years old and 2yrs ago I was diagnosed with Neuroendocrine Carcinoma with mets to the the liver (Carcinoid Tumor). My doctors believed that the primary site was in my small intestine so in 7/01 I had part of my small intestine removed and 5 lymph nodes removed, and radio-frequency ablation to the tumors on the surface of my liver. I have had chemo put directly into my liver, however that only is a temporary(3mths) treatment. I have been on experimental drugs in the last year. My tumors in my liver are currently stable. In November when I had my last CT scan I was informed that the cancer process has gotten worse throughout my body (all my symptoms have returned--i.e. diarrhea, flushing, pain, fatigue) and my 24hour urine for 5HIAA is increased and my serum sertonin levels are high. My left ovary is now full of cancer and I will go to the doctor again on 1/7/03 and find out about what is to be done about that. I want it OUT! I was told when I was diagnosed that this cancer is seen in patients in their 60's and 70's and that it is rare to see it in someone so young,also the doctors felt that I had this cancer already for least 4yrs. I am trying to look to into a support group in my area. I have had one-on-one counseling, but I still have so many emotions and feelings to deal with. I am married and have a great group of friends and family, however only a fellow cancer patient can truly understand what I am feeling and going through. I am currently working full-time (should I say trying to work). I try to keep working only because of the health insurance. I thought for long time that there was no one else out there that was under the age of 40 that had been diagnosed with this cancer. Thank you for your message and I hope everything continues to go well for you. Robin

caricanoid cancer
for everyone that does not know about cfcf they are the CARE FOR CARICANOID FOUNDATION they deal strictly with caricanoid cancer there are only 4 hospitals in the USA that specialize in caricanoid cancer I have recently been lucky enough to be accepted at CEDARS SINIA MEDICAL CENTER they consider me a good test so to speak. I am a 47yr old female mother of 5. I was diagnosed in 2004 at that time they found the cancer in my liver and it was caricanoid origanally from my colon. at my second visit to my oncologists office I asked him how much time I had he answered point blank about 1 year. That hit me like a brick wall I had a 3 yr old son that had been born premature and at that time he was my whole world. 2 fo my sons where already adults I had a new born grandson and my daughters lived with there paternal grandparents and there grandfather had just died 1 week before of cancer. I am still here 5 years later 1 surgery which removed the original tumor (the size of a grapefruit) and the whole right leg of my colon, 2 chemoembolizations and 1 regular chemo last June that almost killed me. I am at the end of the line now the cancer has now spread to my lymph nods and caricanoid syndrom has begun to destroy the right valve of my heart I recieve 60mg sandostatin every 4 weeks that doesnt work like it used to. Cedars is going to do a chemoembolization, replce the valve in my heart, remove the lymph nods next to my pancreus and some in my groin then cut off the left outer edge of my liver were all 10 masses are. my regular oncologist says they are very ambitious. but does agree that the doctors that are going to be doing all of this are some of the very best in the country. I am so very very lucky. GOOD LUCK TO ALL AND GOD BLESS.

vjpers said:

carcinoid tumor
I had a carcinoid/carcinoma removed from my small bowel, along with about two feet of the bowel and ten lymph nodes. They found that it had spread into five of the lymph nodes. This was 4/29/10. Currently I have no symptoms like I did before. The diarrhea is gone, no more stomach pain, and my blood work shows nothing at this time. I go back on August 3rd for another blood test. My surgeon says they can only wait and see now and hopefully they got it all. They assure me that it is not in my liver, but say it may go there. Should I be doing anything more to ensure that it doesn't?

VJ
Have you had any CT or pet scans?

klisesr said:

carcinoid tumor
I was diagnosed with ileal carcinoid in 2006 and had surgery (during which I had 48 lymph nodes removed, 5 of which were positive for cancer). My surgeon was "confident" that I was cured. I never had elevated Chromagranin A or 5HIAA. Over the past year I began having increasing symptoms again, yet my blood and urine remained normal. A CT-scan revealed several liver lesions almost exactly 4 years after my initial diagnosis. Moral to the story: Keep a positive attitude, but be a realist. There is a possibility there are already liver mets that can be treated if you stay on top of your health and regular testing. I would not rely on blood and urine tests alone, however, unless you previously had elevations, as not all carcinoid patients have such indicators for disease progression. I also highly recommend finding a carcinoid specialist via carcinoid.org - despite physicians' good intentions, most are not familiar with carcinoid or the proper treatment.

positive attitude
K,

keep the positive outlook my wife was stage 4 and we seem to be in remission for now.

Steve

Appendix caricinoid
I was first diagnosed in January 2008 with having a caricinoid in my appendix which caused it to burst while they were removing it. Then 3 months later I had part of the right of my colon removed and some lymph nodes to see if it had spread. Thankfully it had not. Then in January of this year they found out I had another carcinoid this time right below my right kidney. It was the same appendix carcinoid. I had to have my whole right kidney removed and part of my small and large intestine removed. I will be starting chemo on Monday, the folfox and avastin. This is an aggressive treatment they are doing to try to make sure it is all out and to prevent another reoccurance. This is a very scary form of cancer, there is not much information on it and my doctor told me that my case is a once in a decade type of case. Not exactly what you want to hear.

klisesr said:

Sandostatin side effects
Hi Maureen: I have had carcinoid cancer since 2006 (diagnosed at 37 years), but thought all was well until last year when I had several liver mets and liver resection. My doctor put me on Sandostatin LAR, and it was miserable the first few months. They're supposed to start patients on a subcutaneous injection that is given multiple times daily, but I think most docs just go straight to the monthly depot injection - which has pros and cons. I had a lot of abdominal cramping, fatigue, constant headaches, among other things. After my 4th injection, I either had adapted to my "new normal" or the side effects had subsided. Tell your mom to hang in there for a while - hopefully it will get better. Did your mom have her primary tumor removed? If she is losing weight and vomiting, I would be worried that she may have some intestinal obstruction, which is common with the primary tumors.

Thanks for responding - I
Thanks for responding - I really appreciate it. They believe that they removed the primary tumor in her small intestine; however, it's still on the liver and she has that monitored every three months. Infact she is going back to Cleveland Clinic in two weeks for her tests. Anyways - after her first Sandostatin shot she got very sick. It really worried us. It lasted a few days then slowly she got back to herself. (Somewhat) After each shot were you down for a few days? She goes again March 18th for the next one. A little nervous about how bad it will be after, but if it gets better we guess it is worth it. Your liver resection - did they do that because it was so big? Wondering if that is an option with hers (which she is going to ask about on her next visit). Are things ok with you currently? Where do you have your treatments? Hope to hear from you again - I'm sure know how hard this is on everyone - nice to hear from someone who knows what to expect firsthand.

mr steve said:

sando
Your mom will start feeling better after a few of the sando shots it takes a while for the blood levels to build up.

Sando shot
Thanks for the reply. We are just worried and that last shot really took her down for a few days. Next one is next Tues. and hoping it will be easier. Thanks for the support.

walterta said:

Appendix caricinoid
I was first diagnosed in January 2008 with having a caricinoid in my appendix which caused it to burst while they were removing it. Then 3 months later I had part of the right of my colon removed and some lymph nodes to see if it had spread. Thankfully it had not. Then in January of this year they found out I had another carcinoid this time right below my right kidney. It was the same appendix carcinoid. I had to have my whole right kidney removed and part of my small and large intestine removed. I will be starting chemo on Monday, the folfox and avastin. This is an aggressive treatment they are doing to try to make sure it is all out and to prevent another reoccurance. This is a very scary form of cancer, there is not much information on it and my doctor told me that my case is a once in a decade type of case. Not exactly what you want to hear.

57 year old woman with appendix carcinoma (signet ring cell)
HI Walterta

My Mom was diagnosed with appendicil carcinoma in March of 2010. It has been a very long year. From what her doctors are telling her, they do NOT recommend surgery for her? Seems strange that all I've been reading over the past year is that the first course of action is to remove the obstructions and the offending tumors then hit it with chemo. I feel like we're going backwards and it's becomming very frustrating to watch. Mom has gone from 5FU to Folfiri, to 5FU with Oxaliplatin, and then 5FU with Avastin. We tried a brief shot at Xeloda which totally washed her out and is now causing problems with bowel obstructions and bowel dialation. I'm at a loss. She is still in fair condition. Not suffering any of the weight loss that hit her initially, mostly due to the supplement of TPN administered at home 3-5 days a week. Someone tell me about their experience with the debulking surgery w/or without the internal "hot" chemo?? Maybe some wonder drug I have yet to research...looking for some feedback from the rest of the country. We are in the Seattle area at the Cancer Care Alliance/Fred Hutchinson Research Center. What's happening in the rest of the country?

As far as the folfox/avastin treatment, she breezed right through it with flying colors. She did have trouble with her voice changing and dry eyes. Other than those and some slight flushing it was the easiest treatment she's gone through. I wish you a speedy recovery!!

klisesr said:

Appendiceal carcinoid
Hi - I have small bowel carcinoid, and agree that surgery (given a healthy individual otherwise) is the first approach with this cancer. Chemo is generally not successful, as these tumors generally grow slower than typical cancer cells and thus are not typically affected by chemo treatments. I live in the Western US, and through my own experience have come to appreciate the importance of an expert in carcinoid to care for me. I highly recommend that you consider seeing Dr. Rodney Pommier at OHSU in Portland. He is a wonderful man (oncolytic surgeon) and truly cares for his patients. His practice is dedicated to carcinoid and breast cancer. He just did my liver surgery this past summer, and I wouldn't consider going to anyone else. I live in Montana, so Settle was a place I considered going, but I couldn't find an expert there. My prayers are with you and your mom.

Thank you for you comments
Thank you for you comments and prayers. Thanks for the information as well. I was wondering about OHSU as a teaching hospital seems to be very aggressive in their approach. I will research your suggestion. Thank you again and speedy recovery to you.

rbedwards said:

Thank you for you comments
Thank you for you comments and prayers. Thanks for the information as well. I was wondering about OHSU as a teaching hospital seems to be very aggressive in their approach. I will research your suggestion. Thank you again and speedy recovery to you.

Lung Carcinoid Tumor
This past Wednesday, May 5, 2011 I found out that I have Stage IIIa Carcinoid. The tumor has wrapped itself around my right airway. On May 13, yes Friday the 13th, I am scheduled to have my right lung removed. Because of the size of the tumor and where it is located they have to remove the entire lung. On that day as well they will check for mets. My surgical oncologist told me, due to the size of the tumor, that I have had this for a very long time. For years I have had doctors tell me that the tumor was just an enlarged lymph node. I am absolutely terrified. I am only 42, the mother to 3 beautiful, healthy, young adults who still need me in their lives. I am also the very proud Gammy to the most beautiful little baby girl. I was just wondering if anybody else has had a Carcinoid tumor in their lung and how they are doing now. Any information I can get will be helpful. I am so appreciative of this site. God Bless!