Latest Carcinoid Cancer http://www.cancercompass.com/message-board/cancers/carcinoid-cancer/1,0,119,148.htm Thu, 24 Jul 2008 00:00:00 GMT Thu, 24 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Here is our story... My husband an otherwise healthy 37 yr old male, was diagnosed with carcinoid last year in September. Primary was small intestine w/mets to the liver and spleen.  He underwent a chemoembolization on the right lobe in September 07' for a tumor causing him great pain, they said about the size of a tangerine. After his treatment he continued to be monitored every three months. Well 2 weeks ago it was time for another 3 month check up, he did his 24-hr urine test and his 5HIAA number came back at a 45!!! Mind you he was at a 29 when diagnosed in September 7 and in March 08 at his 3 month he was down to a 5. How does this number become 5 times higher in 3 months?? the doc ordered additional lab work and a cat scan - so we met with him last week for results and he confirmed new lesions on both lobes and existing spots to have growth. My husband is scheduled for an embolization July 30 on the left lobe and then another on the right 3 months from that.  I dont understand how this slow growing cancer can escalate and cause so much damage in just 3 months. Anyone else experience this??? Can you explain it to me in English, I am so worried about him - I am worried about all of us. how long will this treatment last??? who knows, the waiting is the hardest part....hurry up and wait...thats all we can do.  Any feedback greatly appreciated I noticed there isnt much written about carcinoid but what I have read has been informative. But this newest development has really thrown me into a tailspin help!!!!  http://www.cancercompass.com/message-board/message/all,26231,0.htm gunnys girl Fri, 18 Jul 2008 00:00:00 GMT Hi all: I just sent out a message and responded to answer by email.  If I do that does it mean this doesn't go to the message board.  This is my first time and I think I made a mistake.Thanks. http://www.cancercompass.com/message-board/message/all,25797,0.htm Risha Mon, 07 Jul 2008 00:00:00 GMT Hi:I was reading about someone's treatment with Dr. Kvols of Temodar/Xeloda and how eventually he eventually sent them to Holland for treatment.  The message was written in November - I then went to sign on to this website and I can't find the message. I have neuroendocrine carcinoid tumor that has mestasticzed to my liver with the primary unable to be found.  I am only on a sandosatin (somultaine) but it seems my condition has worsened.   I saw a doctor in NY who prescribed pretty much the same treatment as this person I was reading about received and then they went to Holland. I live in Israel and the treatment they are prescribing now is radio frequency saying that the temodar/xeloda hasn't worked.  I am so confused I don't know what to do.Any input would oh so helpful. Thanks. http://www.cancercompass.com/message-board/message/all,25796,0.htm Risha Mon, 07 Jul 2008 00:00:00 GMT Hi, I just found this board and joined, because the other MBs I looked into had NOTHING about my cancer of interest, and even the Senior members had no clue.My father is 65 and was diagnosed two years ago with Neuroendocrine Carcinoma/Carcinoid Syndrome.I will be posting more on this topic, but first I want to make sure that there is someone, or multiple peoples out there who know a little about the illness?I suppose it is rare and that is why I am runnning into a lack of info.I have all the clinical info I need, but not a lot of practical info, including not too much in the way of personal experiences posted.Thanks in advance,Concerned Daughter http://www.cancercompass.com/message-board/message/all,25420,0.htm ScarletTears Thu, 26 Jun 2008 00:00:00 GMT I am searching for info. for husband for the lutetium 177 treatment offered at Erasmus M.C., Netherlands. The phone # on site doesn't seem to work and I had no response from e-mail. Anyone who has had this treatment, I would appreciate info. on costs, etc., contact info. My husband has carcinoid cancer/6 yrs ago diagnosed. No other options.Thanks http://www.cancercompass.com/message-board/message/all,25404,0.htm shitzu Wed, 25 Jun 2008 00:00:00 GMT Hey,My name is Debbie I have been diagnois with carcinoid cancer Sept. 06.  I am taking 2 injection of Sandostatin once a month and have had 2 chemolization, one of the right side and one on the left side of my liver.  My Dr. is wanting to do the right side again.  He is trying to stop the blood flow to the tumors and ease the side affects of the cancer.  They have label me at stage 4.  Is anyone going throught the same thing right now.  I don't mind the injections or the chemolization so much, but the side affects from the chemo does make me sick and loose alot of weight.  My hair is starting to thin now.  My last scans didn't show any change either way.  Should I take that as good news.  I really shouldn't be complaining, I know there are people who need help more than me.  I am not giving up or anyone who is going through cancer. I pray for everyone, especially little children.  When I go to my Dr. I always shoot little prayers to the people who look like they are suffering.  God bless them all. http://www.cancercompass.com/message-board/message/all,24962,0.htm Smith Thu, 12 Jun 2008 00:00:00 GMT I was diagnosed with a small carcinoid in the Duodenum in April 08 , My question is this ,Is there always a primary Carcinoid if a small one is found . Thank you in advance. Tom http://www.cancercompass.com/message-board/message/all,24833,0.htm tzzzz216 Mon, 09 Jun 2008 00:00:00 GMT  Hello all,I'm new to the group as a caregiver. My husband is suffering from this horrible disease. We both want to know if there is anyone out there that has lost their loved one to this  cancer and what to expect in the end. Because our Dr CAN'T tell us? and he's the LEADING WORLD AUTHORITY ON THIS. Dr. Larry Kvoles from Tampa Moffitt. We have a leg up on most of you for my husband is a Dr himself. We are currently seeing a great Oncologist here in Celebration Florida, both these Dr's have collaborated with really no answers . All my husbands test results believe it or not come back normal. My husband feels far from normal!!  Carcinoid is highly miss diagnosed and is called the Zebra of cancers. Dr Kvoles told us that he most likely had this cancer for 25 years being miss treated. About 10/11 years ago it was realized Carcinoid. In the colon metastasized to his Liver. Had it cut out but never found the primary. Lived with these weird symptoms for ever it seemed. Up till over 2 years ago things started getting worse, small carcinoid crises but never treated for them. This past 7 months have been hell on my husband. Ended up in the hosp for 3 weeks with the worst carcinoid crises ever! That's when he received the SAR via IV, because sub-q made him vomit! he was doing pretty good with this therapy BUT couldn't go home unless they found a way to get the SAR at home. He still has his PICC LINE in from this and is able to give IV bolus, yes he still gets a bit sick from this. In addition he's on the pump AND LAR about 3000 micrograms a day and rising. He still feels sick. Remember when one goes on the pump and the SAR/LAD you are no longer able to get that Octri scan. We feel his tumors have progressed and spilling out all of these hormones. We heard that possibly with a constant flow of this drug may stall the tumors? one can only pray.HERE IS SOME VERY STRONG ADVISED I'D LIKE TO GIVE.. IF ANYONE OF YOU THAT HAS THIS CANCER OR KNOWS OF ONE AND THE CANCER PERSON NEEDS TO HAVE ANY KIND OF SURGERY..PLEASE MAKE SURE YOUR SURGEON PREPS THAT PERSON WITH SAR/LAR BEFORE GOING UNDER THE KNIFE. This happened to my husband 2 years ago and sent him into a huge crises that aided in a 9 min cardiac arrest. The doc knew before hand of my husbands cancer but did nothing.Is there anyone out there with the same stage as my husband or worse. What levels are you all on. Tell me your symptoms and the like. I'm not sure how much longer I have with my husband. He'll turn 47 in July. Miss Geri http://www.cancercompass.com/message-board/message/all,24818,0.htm Miss Geri Sun, 08 Jun 2008 00:00:00 GMT My mother-in-law was diagnosed with sarcomatoid carcinoma and had several tumours rmoved from her abdominal cavitie. she is 77  yrs. old  and now ahas some tumours in her lungs we have decided take her to mexico to the biomedical center to get the Hoxsey tonic treatment.  we didn't think she could stand chemo of taxol and carboplatin .  it's only been 1 week and she is feeling worse. has anyone had any of these experiances? http://www.cancercompass.com/message-board/message/all,24651,0.htm rosebud48 Tue, 03 Jun 2008 00:00:00 GMT Pancreatic neuroendocrine tumour diagnosis 2003 I have had a long and sometimes perilous journey surviving advanced pancreatic neuroendocrine tumour diagnosed 2003.   Treatment so farMetastatic neuroendocrine tumour 2003.Streptozocin and Doxorubicin 2 cycles Royal  Marsden GI Unit - May-July 2003.  Portal vein embolisation –Hammersmith Hospital –Dr A Thillainayagam-November 2003.Partial pancreatectomy (90%), splenectomy, right hemi-hepatectomy (80%), and removal of both adrenal glands, bile duct reconstruction, gall bladder. Mr. Satvinder Mudan at London Clinic- January 2004Recurrent peptic ulcers 2004. Bronchoplastic right upper lobectomy on en bloc resction with wedge of apical segment of right lower lobe and anastomosis of right main bronchus to stump of bronchus intermedius plus nodal dissection for T2N1 neuroendocrine tumour typical. Mr. G Ladas- Royal Brompton Hospital -  May 2004Endocrine support throughout this period Professor J Monson - Centre for Endocrinology.Advice on Neuroendocrine Tumours and their imaging and follow up-Mr. M Caplin -Royal Free Hospital.Professor Angus Dalgleish MD FRACP FRCP FRCPath FMedSci Consultant Medical Oncologist. March 2008, advised patient on alternative anti-inflammatories: Bromelin and Green Tea. More resently Zometa for bone metastates. No treatment since May 2004. Janet has remained well and free from evaluable active disease until now.Recent Gallium 68 DOTA octreotate PET/CT –The University College London –29/02/2008, demonstrated bone metastases in L4 and right ilium and thyroid.I will be having surgery to remove thyroid in the next two weeks. Further systemic treatment and treatment for bone metastates is still being discussed.   It appears that there have been very few cases of pancreatic neuroendocrine secondaries to the thyroid.I would like to hear from anyone either patient or Doctor who has experience of this. I would also like to hear from anyone with experience of treatment for bone metastates including ablation therapy.Kind regardsJanet     http://www.cancercompass.com/message-board/message/all,24632,0.htm Janet7 Tue, 03 Jun 2008 00:00:00 GMT Hi Everyone, My wife has been going through a lot of various symptoms for the past few months and we are going crazy. She has flushing, abdominal pain, change in bowel movements, as well as low blood pressure, sudden rapid heart rate, and at one point anaphylaxis. She is on beta blockers just so she can function somewhat and other diseases that cause these type of symptoms have been ruled out. Our local oncologist is not convinced she has carcinoid so he refuses to order the otreoscan (spelling?) but offers no other diagnosis! He told there is only so far science can take us! We have tried to see one of the Dr.'s in NYC area that are "Carcinoid Experts" but Dr. Warner charges $750 and hour and does not take insurance and everyone else won't see us unless she has a diagnosis! We need to find a Dr. in the NY area who can see her to find out what she has. She also has a enlarged uterus and is going in for a biopsy on Monday with her OB/GYN. The http://www.cancercompass.com/message-board/message/all,23819,0.htm GWSM3 Wed, 07 May 2008 00:00:00 GMT hello all-I am doing very well. I got out of the hospital in a week, one week earlier than they said i would. I am feeling great and taking things one day at a time. the path report said they removed 20 lymph nodes and 14 were cancerous so thats a bit scary but Dr. Lowy thinks they got it all and I dont have to have chemo or radiation since mine is a neuroendocrine tumor. I am still confused a bit about why my cancer markers were negative but yet, i had cancer in that many lymph nodes. Thats pretty alarming. But I am continuing on my organic, vegetarian lifestyle change and hopefully will be able to boost my immune system in natural ways now that the surgery is behind me. It was rough and I still cant sleep on my side, but they took all the staples out and I am feeling much better. I am walking about five blocks a day and doing small errands now by myself so I am feeling really strong and independent! I am so grateful to be alive and so happy for everyday I have on this planet. Much love and strength to you all! xo candye http://www.cancercompass.com/message-board/message/all,23793,0.htm candye Tue, 06 May 2008 00:00:00 GMT Hello My Mom was diagnosed 2 years ago with Carcinoid. The primary seems to be in the lung ( never ever smoked) and has now gone into her liver.(Never drank with the exception of a Pina Colada on Christmas and New Years).  She went thru treatment with Cisplatin & Taxol and it seemed to help reduce the size of the tumors.  She has been told that surgeory was not an option.  After 9 months, she had to be taken off the chemo due to cardiomyapathy, a side effect from the two drugs. We went to a Carcinoid specialist in Tampa @ the Moffitt Center, Dr Kvoles.  He has recommeded Temidar and  Xeloda.  He is concerned that her insurance may not cover it because these drugs are said to be treatment for Brain Tumors and Melenoma.  Her insurance is Blue Cross Health Options.  Can anyone give me their thoughts. I look forward to hearing from you. Tami Cooper- Miami Florida http://www.cancercompass.com/message-board/message/all,23280,0.htm TamiJanet Mon, 21 Apr 2008 00:00:00 GMT I was diagnosed in 2001 with carcinoid cancer.  I was told I have it in the intesting area and live.  I had surgery with the doctors taking everything out that could.  I have recently changed doctors (due to travel time and not feeling comfortable with the present doctor).  This doctor did test that were never done on me before (24-hour urine test and a Ocertide Scan).  He found that my liver is full and my spleen is full of tumors.  My question....would this cause major pain in my arm?  I do hurt in my mid area whick I figure that is from my cancer. http://www.cancercompass.com/message-board/message/all,23039,0.htm angus121005 Mon, 14 Apr 2008 00:00:00 GMT My wife was diagosed with neuroendocrine cancer of the stomach last June and had surgery to remover stomach and affected lymph nodes. In February a scan picked up secondaries on the liver, and these were successfully removed by surgery. W eare now looking at options re preventative treatment to try to reduce the likelihood of recurrence. All of the information I have read seems to suggest that chemo is not really effective for this type of cancer and the best option is to monitor and treat as and when it occurs, but our oncologist sugests that chemo could have a significant improvement on outlook (he realistically says tis means better than a 10% improvement). The original stomach cancer seemd to be a type 3 Net, which is not the best carcinoid to have, buyt thne treatment from the doctors so far has ben outstanding. DOes anyone have any insights as to what treatments work best at this stage. Stomach removal and then major liver surgery 6 months later has drained a lot of energy. http://www.cancercompass.com/message-board/message/all,22926,0.htm sinkyparis Thu, 10 Apr 2008 00:00:00 GMT My  husbands test showed a 29 in September when he was diagnosed, it is down to 9 right now, I was wondering does anyone know what it should be ? Does it go down to zero if he remians healthy and has no problems? This is all so very new to us, the oncologist tells us it us good the number is decending. We are comfortable with him, but I find it helpful to have these things explained in "english" from someone who has been there. Thank you!!!!   http://www.cancercompass.com/message-board/message/all,22770,0.htm gunnys girl Mon, 07 Apr 2008 00:00:00 GMT I am a carcinoid patient since April '07.  I have had the main tumor removed from my cecum and also lymphnodes removed. I had radio frequency ablations done on my liver but there were many smaller tumors left that the surgen could not remove.  now after taking Xyloda and temadar it did absolutely nothing and the tumors on my liver grew and multiplied.  now I am directed to have folfox and avastine administered but while I deal with the insurance, which denied treatment, I was wondering what to expect from this medicine.  I am 41 yrs old and have no children.  I was reading about some of the side effects and it seems to be that it may cause infirtility. Has anyone else experienced this?  Also any other info about this topic will be greatly appreciated.   Katsen    http://www.cancercompass.com/message-board/message/all,22021,0.htm Katsen57 Sat, 15 Mar 2008 00:00:00 GMT Four years ago I was diagnosed with neuro-endocrine cancer.  Since then I had a surgery for debulking, was on a clinical trial with SUTENT and had chemotherapy with Avastin, Leucovorin and Oxilaplatin.  During the last 2 years I have been feeling great. Once a month I have a Sandostatin shot.  My blood values are again normal,  my cancer markers are down to 9. However yesterday I had a test and it showed that my thyroid stimulating hormone is very very high 18.42 in comparison to the reference range of 0.34-5.60.  I will not be able to discuss this with my doctor until next week. In the meantime I have so many question since I do not know why these values are so high.  If anybody has an answer I would appreciate it.  Thank you Siegrun  http://www.cancercompass.com/message-board/message/all,21748,0.htm Siegrun Thu, 06 Mar 2008 00:00:00 GMT Hello MikeI saw your question posted and the answer is Yes, There is a pump for Carcinoid Syndrome patients. I have had carcinoid for 11 years and now i am on the pump. Its wonderful, no shots, the (short acting-daily) and even the LAR didn't balance me out, so my Dr. suggested the pump. I got it at Moffitt cancer center in Tampa Florida and it was the best decision ever. If you need the Dr. name email me at --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- . There is hope!Sincerely Yojaida  http://www.cancercompass.com/message-board/message/all,21565,0.htm Yojaida Sun, 02 Mar 2008 00:00:00 GMT My husband age 37, was recently diagnosed with Carcinoid in the, small intestine, spllen and liver. He had a chemoembolization in September on 1/2 of his liver (he had developed a large tumor on his liver causing him a lot of pain) . We recently met with his Oncologist for a follow up, he stated all of his labs looked good and thigns are going in the right direction, I was so excited with the news I had some questions for him that I forgot to ask. The Doc said my husband could potentially go another year without having another chemo treatment.  Wouldnt they be better off getting the existing cancer treated?? I understand Carcninoid is a slow growing cancer but I guess I dont understand why they are not going to treat the existing cancer until he starts to feel pain which would tell us another tumor is brewing. My husband is feeling great right now, no pain and felling pretty healthy, other than he is tired alot. The plan is to monitor him every three months with labs, a 24 hour urine catch and an MRI to follow his progress. The tumor he had has currently shrunk by 50% but I am also told this is a temporary fix. He is not a candidate for transplant as his cancer is all over his liver. I am told he will never be "Cancer Free" , and we understand that but it seems to me they should be moving on this quicker. Can anyone shed some light on this for me???  http://www.cancercompass.com/message-board/message/all,20037,0.htm gunnys girl Thu, 24 Jan 2008 00:00:00 GMT Hello,I am looking for anyone who has Carcinoid (primary iliium) with mets to the liver who has received SIRT which was covered by Highmark Blue Cross and Blue Shield who is denying this treatment to me as Experimental/Investigative. They will pay for CHemoembolization.  I am also looking for anyone who won an appeal citing SIRT as prefered for this specifi situation.Showing precedent will turn the tides.  Thank you one and all for your support.  I don't have much time. Life is mostly bubble and froth; but two things are set in stone. Compassion in another’s trouble; Courage in your own.  http://www.cancercompass.com/message-board/message/all,20006,0.htm Carcinoid Wed, 23 Jan 2008 00:00:00 GMT My wife and I are new to this conference (she is the patient)and still have much to learn about noids. She has been on Sando since she was first diagnosed in late 2005 and (based on my understanding) is one of the fortunate few who have experienced a major decrease in liver mets since beginning Sando. She started with the usual regimine of sub Q for several weeks and then went to LAR which she has continued with. We just learned about the pump and are currently looking into switching to that for (presumably) better control & optimization of Octrotide level.My question is this: We have heard from several sources that, eventually, Sando becomes less effective. Is this true? If so, how long does it take for this to happen? Does "less effective" mean less effective in controling carcinoid syndrome, tumor growth, or both? My wife has never had carcinoid syndrome. Am I correct in assuming that the pump should help lesson the likely-hood that the Sando will become less effective by maintaining the optimum level of Octreotide.Thanks very much for any and all input the Group may have.Mike Hardy http://www.cancercompass.com/message-board/message/all,19995,0.htm ohiomike Tue, 22 Jan 2008 00:00:00 GMT My wife was diagnosed with carcinoid Nov., 2006 and has been on Sandostatin LR since that time.  We just learned that a pump can be used instead of the monthly injections and that the pump will maintain a more even level of the drug.  We would be interested in any comments from others who are using the pump as to advantages / disadvantages; how the sandostatin is kept "fresh" since it's normally refrigerated; Where did you obtain the pump--did your Dr. have to write an order?  Anything you can tell us would be helpful as we no virtually nothing at this time.Thanks,Mike Hardy http://www.cancercompass.com/message-board/message/all,19869,0.htm ohiomike Fri, 18 Jan 2008 00:00:00 GMT Hallo! A very close friend has just had a carcinoid removed from her lung (and with it a whole lobe). It was diagnosed an atypical carcinoid. But the histologist also said, that it was extremely fast growing, even for an atypical one. Has anyone out there heard of such a carcinoid? Where does a carcinoid end and a carcinoma begin? I'd be happy about any information, I'm very worried about her. http://www.cancercompass.com/message-board/message/all,18746,0.htm karinA1 Sun, 09 Dec 2007 00:00:00 GMT My mother was diagnosed two years ago in September with what they said was Carcinoid.  She just turned 53.  We found out last year at MD Anderson that it was actually Islet Cell Tumor of the Pancreas.  She has tried chemos, it still grew.  She got into a trial with Dr. O"Dorisio in Iowa.  She did the trial drug Rad.  Her kidneys failed.   They think it was a combination of Zometa and RAD.   Many thought (except Dr. Otto.  He said she would regain function in a couple of months.) this was a life sentence, but in June she regained function (she lost them in April, she got function back in June)!  God is awesome!  Right now she is only on sandostatin.  Rad did destroy her largest tumors in her liver.  BUT...the cancer is still everywhere.  Dr. Otto did mention the trial in Switzerland but financially it was impossible.  She goes back to see him in December and we are praying that the trial may be close to being here.  He is such an uplifting doctor and gives her hope that there is still something on the horizon.  Does anyone have anymore information?  I printed off many inspiring messages to give to my mother, and I had to call her when I read the message from Marcie77 and her good news.  Thanks so much! http://www.cancercompass.com/message-board/message/all,18527,0.htm Plate Spinner Fri, 30 Nov 2007 00:00:00 GMT