http://cfcf.websitetoolbox.com Caring Conversations 60 Sat, 07 Nov 2009 11:59:48 GMT http://cfcf.websitetoolbox.com/post?id=3768533 <P>Hi Everyone,<BR><BR>Here is the update of where my boyfriend is:<BR><BR>2 weeks ago, a&nbsp;24 hour urine test showed very high levels of 5-HIAA, indicating carcinoid. Then a CT scan showed metastatic lesions in the liver.<BR><BR>He had a liver biopsy last week.&nbsp; The biopsy&nbsp;confirmed carcinoid in the liver.&nbsp; We were expecting this, as he had been having symptoms that we&nbsp;now recognize as classic carcinoid syndrome (especially flushing).&nbsp;&nbsp;Everything we read said that carcinoid syndrome doesn't usually occur until the disease has spread to the liver.<BR><BR>He also had an echocardiogram to look for heart valve damage.&nbsp; Thankfully that has come back more or less OK.&nbsp; There were some things mentioned on the radiology report, but perhaps they are normal variation?&nbsp; In any case his PCP said the echo was OK.<BR><BR>Yesterday we went to the Hospital of the University of Pennsylvania (HUP) in Philadelphia.&nbsp; We met with both an oncologist and a surgeon.<BR><BR>The oncologist was extremely encouraging.&nbsp; She said that his carcinoid is not curable but it IS manageable. As we all know, these are slow-growing tumors.&nbsp; She said over and over that he looked amazingly healthy for someone with&nbsp;metastatic liver disease. &nbsp; Encouragingly, the liver function test he had performed by his PCP a couple months ago as part of a routine check-up were normal. </P>The oncologist said he should have years left, not months. She also reassured him that there's nothing he did or didn't do to cause this, and that his blood relatives don't need to be worried that they are at special risk for it.<BR><BR>She prescribed an Octroscan to look for the primary tumor. He may also have a colonoscopy and an endoscopy down the stomach to look for it if the Octreoscan doesn't show it.<BR><BR>She is also prescribing Sandostatin.&nbsp; He was flushed the whole time in the doctor's office, not surprising given the stress of the situation. The oncologist seemed quite confident that the sandostatin would fix that.&nbsp; After the&nbsp;Octroscan, he will start out with the daily injections just to make sure he is ok with the medicine, and then switch to the long-acting form.<BR><BR>The surgeon said he cannot operate on the liver tumors now, as they are too big.&nbsp; However he is recommending that we talk to an interventional radiologist about chemo-embolization.&nbsp; He thinks a good course of treatment is to have chemo-embolization of the liver tumors on one side of the liver to shrink them.&nbsp; Then 6 weeks later have chemo-embolization on the other side of the liver.&nbsp; Then if they shrink enough they could be surgicall removed.<BR><BR>The Penn doctors seem really on the ball, and we left the hospital very encouraged.&nbsp; My boyfriend says he slept well last night for the first time since all this started.<BR><BR>Thanks for your support.<BR><BR><BR> <p>Forum: <a href="http://cfcf.websitetoolbox.com/?forum=65917">Newly diagnosed (<1 year)</a> http://cfcf.websitetoolbox.com/post?id=3768533 Thur, 29 Oct 2009 14:24:58 GMT CLN1963 http://cfcf.websitetoolbox.com/post?id=3755735 <P>Hi everyone my name is Kimberly Smith.3 months ago i was told those 3 words no one wants to ever hear.You have a very rare Cancer called Carsinoma.I was told 2 times while in the hospital because i had to have a colonoscopy because i had IBS and the symptoms were getting worse.Bad diahrea,fatigue,loosing weight and running low grade fevers.This went on for 10 months before i was sent to a gastronologist to have my colonoscopy in which the doctor preforated my bowel while removing what he thought was an odd looking polyp.Turns out biopsy came back it was a Carcinoid Tumor in my lower intestine.The doctor said it's cancer my response was okay.It did'nt hit me but i had to have emergency surgery the day after the colonoscopy because the doctor had preforated my bowel during removel of the tumor.6 weeks later i had to have a right hemicolectomy.Pathology test came then saying it was in the bad tissue as well as the good tissue they removed and in 4 out of 21 Lymph Glands.I had health insurance then but since then my husband lost his job so now i have been cancelling my doctors appointments because of that as well as i don't have any transportation and i am not from here so no family either.I am suppose to be seen every 6 weeks by 2 Cancer doctors but cancelled my appointments until i can figure something out.The doctor told me he did'nt know if he got it all and Chemo nor Radiation will work on this rare cancer.I am reaching out for help but don't what to do.This was like having a bomb dropped on me at 43 years of age.I had been sick for awhile i use to do some Modeling nothing big and promotional marketing but now all of my dreams came to a halt.Any support would be great.I can't find alot about this cancer either.I am trying to raise money to to help with medications,doctors visits until we can figure something out about health insurance.My husband works for a Great Company now and hopfully soon we can get back on our feet so i can continue to fight this Rare Form of cancer.Any questions or comments welcome.Some of the information that doctor has told me after researching and talking to Carcinoid Foundations we don't know if he knows much about this cancer and they suggest i find a new doctor whom knows Carcinoid Cancer because the doctor that is treating me now can't answer alot of my questions so thats another journey this cancer is not very well kown in North Carolina and theres not any support groups in our state for Carcinoid Cancer patients.I am still learning and doing my own research so i can fight this and live.Thanks for reading my story. Sincerely Kimberly Smith</P> <p>Forum: <a href="http://cfcf.websitetoolbox.com/?forum=65917">Newly diagnosed (<1 year)</a> http://cfcf.websitetoolbox.com/post?id=3755735 Sun, 25 Oct 2009 02:42:27 GMT KSMITH http://cfcf.websitetoolbox.com/post?id=3751874 Good Morning!<br /><br><br /><br>I thought I would just post a new subject, to give this brilliant physician his own subject.<br /><br><br /><br>I am still processing everything Dr. Warner said to me. <br /><br><br /><br>After two years of being sick, more than a year of dealing with my local doctors and being told... Yes you have Carcinoid Syndrome, but there is no tumor -- No you do not have it.<br /><br><br /><br>Dr. Warner said... Yes, you have Carcinoid Syndrome, and just because we do not know where the tumor is, does not mean it is not there. So, we are going to find it.<br /><br><br /><br>Brain Scan focusing on Pituitary Gland<br /><br>Octreotide Scan (repeat) he does not trust my previous<br /><br><br /><br>ENT Visit for throat polyps, as Dr. Warner has seen cases where carcinoids are there. Surgery to remove and biopsy.<br /><br><br /><br>Adrenal Tumor removal, even though previous doctors have said not a pheo and cannot be a carcinoid, and Dr. Warner says -- Until we prove it is not, then it is not.<br /><br><br /><br>Sandostatin will begin after the octreotide scan, so my symptoms and pain will stop. And then we can go ahead and remove my throat polyps and the adrenal tumor.<br /><br><br /><br>OVERWHELMED!<br /><br><br /><br>In closing... I cancelled my appointment with Dr. Warner last December, so in my own neglect I dropped the ball. I am a year further than I might have been. I can just say this, I am not wealthy, it was not easy to come up with the 1,000 to see him. It will not be easy to pay 25% for tests, etc. But, I have to come to terms with this. If you want the best in medical care, sometimes you have to figure it out. The money and financial drain terrifies me, but I am hoping to figure this out. <br /><br><br /><br>Thank you all, who have been there as a great support and wealth of information.<br /><br><br /><br>Julie <p>Forum: <a href="http://cfcf.websitetoolbox.com/?forum=65917">Newly diagnosed (<1 year)</a> http://cfcf.websitetoolbox.com/post?id=3751874 Fri, 23 Oct 2009 15:22:59 GMT Jules http://cfcf.websitetoolbox.com/post?id=3734285 Hi Everyone,<BR><BR>My 50 year old boyfriend has just been diagnosed with carcinoid.<BR><BR>His 5-HIAA levels are very high.&nbsp; He has been having symptoms including the flushing.&nbsp; Abdominal CT has confirmed tumors in the liver.&nbsp; They haven't yet found the primary tumor. We don't know yet if his heart has been affected.&nbsp; He has had high blood pressure&nbsp;&nbsp;but I don't know if that is related or incidental.<BR><BR>His primary care giver has never seen a carcinoid before, and has referred him to Penn.&nbsp;&nbsp;He has&nbsp;an appointment next week.<BR><BR>I have been reading a lot--maybe too much--and I'm scared out of my wits.<BR><BR><BR><BR><BR> <p>Forum: <a href="http://cfcf.websitetoolbox.com/?forum=65917">Newly diagnosed (<1 year)</a> http://cfcf.websitetoolbox.com/post?id=3734285 Mon, 19 Oct 2009 16:13:09 GMT CLN1963 http://cfcf.websitetoolbox.com/post?id=3716393 Hello all,<br>&nbsp;&nbsp; I am new here&nbsp; and did not know where to put this post. I am not diagnosed yet, but over the past 21 yrs. of a 24 yr. illness, doctor after doctor has thought I have carcinoid syndrome. I have had five HIAA tests and two Chromagranin A tests, all negative. Now, my current PCP wants to do yet another 5HIAA. I turned it down, feeling that this possibility was long proven wrong. I have late-stage Lyme Disease which can cause flushing, but my doctors know almost nothing about Lyme, which is typical, unfortunately.<br>&nbsp;&nbsp; I have read a lot on the Internet. My "attacks" have always included flushing. From what I've read, once you flush, you have metastasis and would only survive an average of 3 years with no treatment However, I talked to someone at the Carcinoid Foundation, who said many people live 20 yrs. with no treatment She did not know about the flushing being significant.<br>&nbsp;&nbsp;&nbsp; This is my question: Could I possibly have had carcinoid with flushing for over 21 years untreated and still be alive?<br>&nbsp;&nbsp;&nbsp;&nbsp; Thank you for your help and I apologize if this post is in the wrong place Blessings&nbsp; and better health to all.<br>klutzo<br><br> <p>Forum: <a href="http://cfcf.websitetoolbox.com/?forum=65917">Newly diagnosed (<1 year)</a> http://cfcf.websitetoolbox.com/post?id=3716393 Tue, 13 Oct 2009 15:40:20 GMT klutzo http://cfcf.websitetoolbox.com/post?id=3664571 I had my appendix removed at the beginning of August and they found a carcinoid on the tip. It was about .9 mm. My surgeon, whom I really trust, said that if it had just been confined to the appendix there would be no need for further surgery. The carcinoid, however, was just barely in the fat outside the appendix. (I'm not even sure if I'm saying this correctly.) I have several friends who are general surgeons who recommend a right colectomy. But, my surgeon didn't seem to think it would be necessary. She sent me to an oncologist who sent me to a colorectal surgeon. The colorectal surgeon sent my labs to another pathologist. She called me Friday morning and recommended the surgery. Half of my doctors say it probably isn't necessary, the other half are saying to do it. I'm so lost.<br /><br><br /><br>Everything I read about my case says that I shouldn't need more surgery. But, the fact that it was outside my appendix... ever so slightly... makes me nervous. It had not spread to the lymph node in my appendix. Who do I trust? Should I do more surgery?<br /><br><br /><br>No one in my family has ever had cancer. We are so healthy. I don't get why this was growing in me. It's scary. And now I'm terrified it will come back and won't ever find it until it's too late.<br /><br><br /><br>Suggestions PLEASE! <p>Forum: <a href="http://cfcf.websitetoolbox.com/?forum=65917">Newly diagnosed (<1 year)</a> http://cfcf.websitetoolbox.com/post?id=3664571 Sun, 13 Sep 2009 17:12:48 GMT seas33 http://cfcf.websitetoolbox.com/post?id=3590730 Last week I had my 5 year colonoscopy.&nbsp; The doctor decided to take a look in the small intestine.&nbsp; He found a "tiny" carcinoid tumor near the location where the small intestine enters the colon.<br><br>I&nbsp;have since&nbsp;been reading everything available about them.&nbsp; It only raises more questions than answers.&nbsp; My concern at this point is two fold.&nbsp; One, is this the one and only tumor or is there a primary somewhere else.&nbsp; I have experienced no symptoms.&nbsp; Two, risks related to surgery.&nbsp; The doctors initial thought is to remove about twelve inches of my small intestine and colon.<br><br>Any input with this will be appreciated.&nbsp; I am looking for guidance.<br> <p>Forum: <a href="http://cfcf.websitetoolbox.com/?forum=65917">Newly diagnosed (<1 year)</a> http://cfcf.websitetoolbox.com/post?id=3590730 Mon, 27 Jul 2009 15:34:03 GMT Michael http://cfcf.websitetoolbox.com/post?id=3583909 Hi,<br><br>I have been dealing with **is it carcinoid or not for about a year.&nbsp; Finally, I have had my Octreotide Scan, and this is what has been confused or worried.<br><br>Monday, had injection - scan later that day.<br>Tuesday, full body scan - told to come back, because pooling in my bowel<br>Wednesday (today) had scan and it is still there, not so much pooling but definitely something there.&nbsp; Told to go back tomorrow after I drink some magnesium drink for another scan.&nbsp; <br><br>My mind is about to explode - has anybody experienced this before?<br><br>Is this normal to be called back for a scan 72 hours after injection? <br><br>Thank you so MUCH!<br>Julie<br><br><br><br> <p>Forum: <a href="http://cfcf.websitetoolbox.com/?forum=65917">Newly diagnosed (<1 year)</a> http://cfcf.websitetoolbox.com/post?id=3583909 Wed, 22 Jul 2009 21:35:37 GMT Jules http://cfcf.websitetoolbox.com/post?id=3551366 <P>Hi..do any of you have heart involvement with your carcinoid? I am trying to find what it feels like. I know it sounds odd..but I just don't feel right. I get so shaky and feel, well not out of breath as if I've been running, but like&nbsp;I just can't breathe in enough. Sort of like I need to sigh or yawn alot. Sometimes it feels like something is pressing down on my chest but it really doesn't hurt. I would ignore all this, but&nbsp; these episodes seem to be increasing, and if they start at the beginning of the day I am just overwelmingly tired the rest of the day. I had an ovarian carcinoid removed, 14 x 9 x 5 cm in September 2008. Since that&nbsp; I have not had any&nbsp; flushing or diahrea, and octreoscan and other levels were ok when last checked. I had an echo in which the doc told me there was "some minor tricuspid valve abnormalities", but these were probably congenital. I have a follow up echo in 3 weeks, and I guess I just don't want to go in there sounding like a hypochondriac about all this. I know I'm rattling on and on... but when I read about being out of breath or whatever,I don't know what they mean by it. Do you feel like you've been running? Is the shakiness and weak feeling part of that? I don't want to complain if this is just nothing.</P> <p>Forum: <a href="http://cfcf.websitetoolbox.com/?forum=65917">Newly diagnosed (<1 year)</a> http://cfcf.websitetoolbox.com/post?id=3551366 Wed, 01 Jul 2009 01:54:25 GMT Karnanaker http://cfcf.websitetoolbox.com/post?id=3547247 Has anyone out there had their pancreastatin levels elevated?&nbsp;&nbsp; There doesn't seem to be much in the literature about pancreastatin yet and I'm just curious what people's experiences with this lab test are (mine are 5x normal and some articles are saying that can be things like diabetes but others seem to think it's a strong indicator of carcinoid activity) - it seems from reading so many patient stories on these sites that NET's/carcinoids often don't follow "what the books say" so I'm just looking for some patient feedback........<br> <p>Forum: <a href="http://cfcf.websitetoolbox.com/?forum=65917">Newly diagnosed (<1 year)</a> http://cfcf.websitetoolbox.com/post?id=3547247 Sun, 28 Jun 2009 15:00:24 GMT shellyb http://cfcf.websitetoolbox.com/post?id=3528877 <P>I have been&nbsp;unwell for sometime with abdominal pains,Diarrhea,bloating, sweats&nbsp;etc and the local GP was about to give up when he sent me for a 24 hour urine test. Well that started a ball rolling that was not going to be stopped in a hurry. My H-5iaa&nbsp;level came back at 212 which is 5 times greater than normal. I then endured cat scans, ecocardiograms,&nbsp;octreocide scans, cardiac&nbsp; MRI&nbsp;. I was told that i had carcinoid syndrome with tumors on my liver, lungs and worst of all the primary tumor of 2.5cm was located on my heart. My gastroentrologist and our family GP both talked up removal and cure but my cardiologist was a little more skeptical. Last Thursday 11/06/2009 i had an appointment with my oncologist who i thought was going to tell&nbsp;me where why how and when the removal was happening. This did not happen i was advised that the heart tumor was to large and go home and enjoy myself!!! I still don't understand what is really happening as its all happened so fast. I have a young family of 2 boys aged 9 &amp; 11 and a wife that i have no explanation to give on whats going to happen. No one seems able to tell me. I hope some one out there can give better explanations than my doctors. please if you have any information to share i would love to hear from you&nbsp;</P> <p>Forum: <a href="http://cfcf.websitetoolbox.com/?forum=65917">Newly diagnosed (<1 year)</a> http://cfcf.websitetoolbox.com/post?id=3528877 Tue, 16 Jun 2009 08:44:47 GMT paulpaterson http://cfcf.websitetoolbox.com/post?id=3498432 <DIV><FONT size=3>Dear Friend(s), </FONT></DIV><DIV><FONT size=3>&nbsp;</FONT></DIV><DIV><FONT size=3>I just returned from the Mayo Clinic to my home here in California following surgery for a bowel obstruction on May 7, 2009 that was a result of my existing sclerosing mesenteritis.</FONT></DIV><DIV><FONT size=3>&nbsp;</FONT></DIV><DIV><FONT size=3>The pathology report stated that they removed 6 carcinoid tumours from my small bowel, all less than 1 cm.&nbsp;(These were found incidentally and not expected at the time of the bowel resection.) &nbsp;They also removed 13 lymph nodes and all were reported clear/clean of carcinoid.&nbsp; While doing the bowel resection they also did a peritoneal wash and found there to be zero cells in that wash.</FONT></DIV><DIV><FONT size=3>&nbsp;</FONT></DIV><DIV><FONT size=3>I am devastated and sooooo frightened.&nbsp; I see the oncologist this Friday.&nbsp; Would there be anyone that could share with me and help me to cope?&nbsp; </FONT></DIV><DIV><FONT size=3>&nbsp;</FONT></DIV><DIV><FONT size=3>I am a Chief Nurse Executive, but a widow, and am just sooo tearful and feel so alone just now.&nbsp;&nbsp;&nbsp;I would be soooo grateful for any words or care, comfort, or just to know that I AM NOT ALONE.</FONT></DIV><DIV><FONT size=3>&nbsp;</FONT></DIV><DIV><EM><FONT size=3>Would you pleaseeeee reach out to me, it would mean the world to me.</FONT></EM></DIV><DIV><FONT size=3>&nbsp;</FONT></DIV><DIV><FONT size=3>With a most appreciative heart, </FONT></DIV><DIV><FONT size=3>&nbsp;</FONT></DIV><DIV><FONT size=3>Carrie </FONT></DIV><DIV><FONT size=3>California</FONT></DIV><DIV><FONT size=3>(</FONT><A title=mailto:HebrewGirl@aol.com href="mailto:HebrewGirl@aol.com" target=_blank><FONT size=3><a href="mailto:HebrewGirl@aol.com">HebrewGirl@aol.com</a></FONT></A><FONT size=3>)</FONT></DIV> <p>Forum: <a href="http://cfcf.websitetoolbox.com/?forum=65917">Newly diagnosed (<1 year)</a> http://cfcf.websitetoolbox.com/post?id=3498432 Thur, 28 May 2009 06:09:59 GMT Carrie http://cfcf.websitetoolbox.com/post?id=3404476 Hi my name is Robin, I live in Colorado.&nbsp;&nbsp;I was diagnosed with a liver carcinoid in January.&nbsp; I have had tests,&nbsp;labrascopy surgery, heptatic angiogram in the past 2 months.&nbsp; They found the tumor on an OctreoScan, I have been on Octreotide injections since the beginning of February.&nbsp; They see it on the scan but when they have gone in they haven't been able to locate or find it while doing these procedures.&nbsp; Has anyone experienced this before? I go see an oncologist at the University of Colorado next Weds.&nbsp; I have done research but not finding much on localized tumors in the liver, most are found in the intestines and metasises to the liver.&nbsp; They do not see any other tumors except in the liver.&nbsp; I would appreciate any feed back that you may have, at this point I am very scared and frustrated.&nbsp; <br><br>Thank you<br>Robin<br> <p>Forum: <a href="http://cfcf.websitetoolbox.com/?forum=65917">Newly diagnosed (<1 year)</a> http://cfcf.websitetoolbox.com/post?id=3404476 Sat, 04 Apr 2009 00:28:21 GMT scrappermom http://cfcf.websitetoolbox.com/post?id=3402569 I had a partial bowel resection in 12/07 - apparently, my carcinoid has returned.&nbsp; This time - in my liver.&nbsp; I was just diagnosed the beginning of this week.&nbsp; <br><br>Just finished making arrangements to be seen at Sloan Kettering in NYC - I'll head up there on 4/23 for a consult.<br><br>Scared to death - so scared that I can't even wrap my mind around this - every second of everyday I am worried that I am dying young.&nbsp; From what I read...I'm not seeing much in the positive light.&nbsp; I am only 46 years old and have an incredible husband, family and life.&nbsp; I'd like to be around for another 40 years!<br><br>How does one get over this huge fear?&nbsp; How does one go on with this?&nbsp; How can I get past this?<br><br>I am just so very scared.<br><br>&nbsp; Kelly<br><br><br> <p>Forum: <a href="http://cfcf.websitetoolbox.com/?forum=65917">Newly diagnosed (<1 year)</a> http://cfcf.websitetoolbox.com/post?id=3402569 Fri, 03 Apr 2009 01:32:24 GMT KellyO http://cfcf.websitetoolbox.com/post?id=3382039 <br>I was diagnosed in January 2008 with a carcinoid tumor of the small intestine. Four of seventeen lymph nodes tesed positive for carcinoid. During the last fifteen months, I have had an Octreoscan, CT scan&nbsp;and 2 PET/CT Scans all of which have come back negative. During that same time, my chromogranin has always been within the normal range while my 5HIAA has always hovered around the normal area-range of 5.7 to 6.7 with a normal range of 0-6. The one marker that has always been above normal has been the serotonin. From a high of 330 right after the surgery to 247 in September-normal range 22-180. My last round of chemcial markers done in March reflect a normal chromogranin, elevated 5HIAA and a normal serotonin(130). Does anyone know how the serotonin could be within range while the 5HIAA is elevated? I followed the dietary restrictions of the urine test.<br><br>Peter<br> <p>Forum: <a href="http://cfcf.websitetoolbox.com/?forum=65917">Newly diagnosed (<1 year)</a> http://cfcf.websitetoolbox.com/post?id=3382039 Mon, 23 Mar 2009 18:53:55 GMT jockodef