CancerCompass message board discussion started by Dawna on 2/27/2005 http://www.cancercompass.com/message-board/message/all,1623,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello, I am new to this board (and communicating online). I was diagnosed with islet cell carcinoma, had surgery where nothing was done and sent for chemo/radiation, then told to just watch it as it is still unresectable. I am 36 and I need to try to figure out how to live with all the uncertainty. They say it is slow growing but, does that mean 5 or 20 years? Should I be doing something in the mean time? Dawna Sun, 27 Feb 2005 00:00:00 GMT Dawna, just wanted to let you know I'm also a person with Islet cell cancer and I have been going to M.D. Anderson in Houston,Texas I live about 4 hours from there and it was so good to know that there was a good Dr. close by for me to go see and he is giving me a shot a month of Sanostatin depotLA to slow the growth of the tumor down so I could lose 50 lbs. before surgery for they will do Whipple surgery but I was told that I could live a while longer because its a slow growing tumor so I hope they are right in that and I do hope you are o.k. and I don't understand why they did sugery and didn't do anything. that would be upsetting to me. My surgery is to last about 12 hours and thats the reason they want me in top shape and I'm working on it because I had gained weight and felt so big and that was one of the things I noticed the most and it affects my insulin and it has been going up since.still working on my weight and i'll get it off soon. Kaym43 Fri, 22 Apr 2005 00:00:00 GMT I was diagnosed 3 years ago with nonfunctioning islet cell carcinoma of pancreas, which had spread to the liver. Had the body and tail of the pancreas removed and the spleen. It also spread to the ovaries, which were removed. The mets to the liver were stopped for 18 months after a chemoembolization to the liver using a radioisoptope from France. Liver tumors are now growing and have multiple tumors to the peritoneal wall. I am currently on a trial drug called CCI-779. I will have my first CT after using this drug, next week and will see if it is effective. My cancer is slow growing compared to the typical adenocarcinoma of the pacreas, but is fast compared to typical islet cell carcinomas. The only way to tell how fast, is by the rate of growth and spread indicated by regular CT's or whatever method of imaging you are using. Gail1 Gail1 Tue, 19 Jul 2005 00:00:00 GMT After "waiting and watching" for 9 months,We found the cancer has spread to my blood system. I had fluid around my heart that had to be drained off and in that fluid they found cancer cells. My onc says nothing to do if the fluid doesn't come back. He has no plans of ever giving me chemo. I am so scared of where it will show up next, and how long I have left. any one have any ideas? Dawna Fri, 02 Dec 2005 00:00:00 GMT My 33 year old husband passed away 8/9/2004 from Islet Cell Carcinoma. I'm not sure if I can answer you questions but, I am here if you need to talk. Feel free to e-mail me any time at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Angelinred Fri, 03 Feb 2006 00:00:00 GMT I am a physician (psychiatrist) with Islet cell cancer, non-functioning type. Unfortunately, my doctor colleagues conspired to leave a 1 inch lymph node in me when I had surgery (distal pancreas removal and spleen removal with 13 lymph nodes removed also) for this in November, so I am going to have another major surgery in a couple weeks. I am no expert on my disease, but in going through this, I have found out that it is so rare that almost no one is an expert, and it is doubly important to be your own advocate in your care. I have gone from my local hospital to a major university center and spent more time asking questions that I didn't ask the first time because I didn't want to look stupid. I am guessing that some of you aren't getting the answers you want or need because your doctors don't want to look stupid in front of you. My new oncologist was very up front about this, saying "you probably know more about your disease than I do." Drjwe Thu, 16 Feb 2006 00:00:00 GMT I was diagnosed with islet cell somatostatinoma in 1998 when the tail of my pancreas was removed. They said I had probably had it for 10 or 15 years. It had appeared in one lymph node. In 2002, I was told it had spread to the liver and surgery would not help since there were multiple tumors in both lobes. Now, they tell me I have 2 to 3 years left. However, I just went to a private laboratory in Houston where they are doing a treatment protocol involving a form of sandostatin and Indium-111. The tumors have receptors for the sandostatin, which carries 100 times the radiation normally given, right into the tumors, without affecting healthy tissue, I am told. I do not yet know the outcome of this treatment. Also, since the drug is still considered "investigative", many insurance companies will not cover it, and it costs around $20,000. The incidence of this caner is about 1 in 40 million, so not many doctors really know much about it and not a lot of time or money has been put into developing treatment for it. I have been receiving Sandostation by IM injection since 2002, and have not had any discomfort whatsoever, so far. If I can give you any more information, I would be happy to have you email me on this forum. Marie Tigerlillygal Sat, 13 May 2006 00:00:00 GMT Husband was diagnosed with non-functioning islet cell pancreatic cancer 7 1/2 years ago. Lots of interventions over the years, but living FULL life. Would be glad to offer info, if someone needs it.Froedtert Hospital, outside of Milw., is HIGHLY recommended. Wisconsin Wed, 31 May 2006 00:00:00 GMT I'm so sorry you lost your husband. If its not too hard, can you tell me how his cancer progressed? How did they find it? how did they treat it? how long did he have it before he died? Most of the people I hear from/about had surgery where the main tumor was removed, mine cannot be. I hope these aren't too forward. hope to hear soon Dawna Sun, 18 Jun 2006 00:00:00 GMT I know I put myself out there. At the time, I felt that I was strong enough to talk about my own personal experiences with this horrible disease. I thought that I might use it as therapy and help others out as well. It's one thing to actually have the disease but, it is something totally different to stand by and helplessly watch your loved one deteriorate and pass away. I'm sorry that I did not reply to some of your messages. I read them often but, find that I can't reply. I hope you all understand. May you all feel peace and find comfort. Angelinred Wed, 28 Jun 2006 00:00:00 GMT I hope you are up to answering some questions. Your husband has had it for 7 years, and you said lots of interventions, my qyestions are what interventions and what for? So far I had blood clots in my lungs and fluid around my heart, my oncologist still says I have plenty of time. Both occurences were sudden, scary and very dangerous. Are the doctors doing anything on a routine basis for treatment, or just waiting,watching and treating as things come up? I am desperate for some one in the same boat that I'm in to talk to. I am glad to hear that he's doing so well for so long,it gives me some comfort. I'll go for now. Please respond, anyone with some info on longterm living with it. Dawna Fri, 28 Jul 2006 00:00:00 GMT First, I am sorry to hear that you are so young. Even if islet cell is not as bad as so many cancer diagnoses, it still demands emotional energy and a watchful eye. My husband's was diagnosed when he was 45 during surgery for what appeared to be suspicious colon cells. At that time they did a whipple procedure taking out part of his pancreas, stomach, colon, and spleen. It's curious--and worrisome-- to me that for yours, they did nothing during surgery with chemo/radiation as follow up. That is NOT the normal coarse of action. Do you trust both your doctor and your hospital? If you are anywhere near Milwaukee, I would highly recommend Froedtert/Medical College of Wisconsin (Dr. William Rilling). That's where my husband's follow up has taken place for the last 7 years....very successfully, I might add. He has undergone a number of chemoemolizations, one therasphere treatment, two surgeries, and one cryoablation. No systemic chemo or radiation. Sounds like a lot, but remember, it's been over 7+ years. He looks and acts like nothing is wrong and he's now 17 (!) years older than you. Did you know that Steve Jobs (Apple computer) was also diagnosed with pancreatic islet cell? I believe they resected his pancreas and he --for now-- is considered cured. (My husband's metastasized to the liver). I hope that for now, that helps. Feel free to ask any other questions--general or specific. Best of luck. Wisconsin Fri, 28 Jul 2006 00:00:00 GMT I didn't answer some of your questions because I read the email string incorrectly. sorry. Each time that my husband underwent a procedure it was preceeded by scans that showed that the cancer was growing. More often than not, we waited months and months before intervening. Sometimes they would do another scan just to see how much it had grown and to make sure that it wasn't somewhere else too. Treatments were usually scheduled when he became symptomatic enough to want treatment --both to stop the pain and hopefully stop the growth. The pain was never intolerable. Wisconsin Fri, 28 Jul 2006 00:00:00 GMT Thank you for answering so quickly. I think mostly they did nothing because the tumor is up against a large vessel and they didn't feel they could remove it safely. The chemo and radiation was to hopefully shrink it, so they could remove it. But, it didn't shrink it at the time. I am free of symptoms,but wonder if something needs to be done to keep me that way. After hearing from you I am considering getting a new opinion. At the time, I was seeing the best guy in town for this and he sent me to The Mayo clinic. After that I felt comfortable with thier expertise, Maybe it's timne to talk to some one else. Again, thank you so much for answering. So many people I have read about were able to have thier tumor removed or are undergoing some kind of maintenance. You really have helped me feel better. I hope to stay in touch,if that is o.k. with you. Dawna Sat, 29 Jul 2006 00:00:00 GMT Hi, my name is Ken and I have been living with my cancer for almost six years now. I see my doctor from Fox Chase Cancer Center in Phila, Pa for check ups every three months.Most of the past years we have been doing the watchfull waiting thing.I have had two different treatments done in that time. One clinical study and the other chemoembolization of the right lobe of the liver. clinical study did nothing for me but the chemo to the liver has keep my main lesion (10 cm) in remission for almost two years. this past year the cancer has spread to my bones, right shoulder and left hip. Had radiation to both spots with good success. At this time my last ct has revealed few new small lesions in the right lobe of the liver.My doctor has suggested that watchfull waiting end and that I begin Chemo in a few months.Don't know what types or combination of drugs yet. Still a few tests before I begin. 7 1/2 years is great. Keep the faith and keep on living life to the fullest. May God bless !!! Walynj Thu, 17 Aug 2006 00:00:00 GMT How did you take the metastais to the bones? We've been told that is a common site for it to go to after the liver. I suppose it's good to be told what to expect, but every once in a while, I wonder. It's so easy to get suspicious every time there's unusual or unexplained pain. Thanks for writing. I haven't completely figured out how this works. I get messages so rarely and then when I do, there's a string that I haven't been a part of. Best of luck and life to you, Ken. Wisconsin Thu, 17 Aug 2006 00:00:00 GMT Are you on blood thinners? I have a hard time believing that The Mayo Clinic wouldn't be one of the very best places around for treatment. It makes me think that--as usual--there's more to the story. The body is such an amazing but complicated system and a cancer diagnosis seems to change everything...including how your blood clots. My husband went through a battery of tests to identify why he had clots (in the lung and legs). They needed to find out if it was "just" the cancer or if there were genetic reasons for clotting. I need to be careful about getting out of the "information sharing/support" mode and talking about highly specific medical conditions. I suppose what I feel most fortunate about is having a doctor whom I trust completely, who also is an articulate and caring person. Stay strong. Try to stay relaxed and engaged in life. Don't be afraid to ask questions. Wisconsin Thu, 17 Aug 2006 00:00:00 GMT What were your syptoms when the cancer went to the bones? Wisconsin Sun, 20 Aug 2006 00:00:00 GMT In both cases the only symptom was pain in the jointd.In the shoulder I thought I pinched a nerve.I had just finished a remodeling job and felt I over worked my arm. Complained to my dr. at Fox Chase during a check-up and he sent me to have an x-ray where they found a lesion in the shoulder. Treatment(radiation) followed within a few days . Pain has been slowly going away and feels pretty good most of the time.Hip problem followed about a month latter with same treatment and success. Walynj Sun, 20 Aug 2006 00:00:00 GMT Hi there...I have malignant metastatic insulinoma (islet cell carcinoma). I see Dr. Yao at MD Anderson and I am starting hopefully the RAD001 study next week. I was diagnosed in aug 99, had 8 mos of chemo, the whipple etc surgery by dr. doug evans and dr. vouthey at MDA. Had a yr of remission, recurrence in the lymph nodes, temedor/thalidomide; carboplatinum, abraxane and avastin and now this new drug. Oh yes, I also went to the Netherlands 4 times for the LU-octreotate therapy which was very helpful. If you or anyone has any questions and wants to correspond,email me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- taj brown Momoffive Mon, 06 Nov 2006 00:00:00 GMT I too have islet cell carcioma (diagnosed 8/99) i had the LU octreotate in the netherlands four times. did well for two yrs.. then had to try something else. am going to start rad001 next week we hope. i'd like to hear how you are doing. t.brown Momoffive Mon, 06 Nov 2006 00:00:00 GMT I too would like info about which treatments he has had. I've had a slew of them too, adriamyacin/strepto; surgery; thalidomide/temedor; LU octreotate in the netherlands; abraxane, carbo, avastin; now maybe rad001. Thanks.tajb rown Momoffive Mon, 06 Nov 2006 00:00:00 GMT Well, I am back and I am confused. I had my 8.7 cm Islet Cell cancer resected in 11/05, then a second surgery in 3/06 to remove some lymph nodes missed the first time. I recently had another lymph node show up on a CT scan and the followup octreotide scan showed it was cancerous. Some of the doctors I have talked to have advocated going after the lymph node surgically and immediately. Others have said to watch it and see if it aggressive or if anything else pops up before I go to surgery. Long-term, they are saying that I may need many more surgeries, so it may be foolish to waste a surgery on a single node when it probably won't cure me. Nobody is offering chemotherapy or radiation, even though my tumor clearly takes up sandostatin very well. Any suggestions?? Drjwe Wed, 28 Feb 2007 00:00:00 GMT My wife has Islet Cell. They first found it in 1999 after she was slow from recovering from a car accident. Turned out she had the lesions everywhere and they had already spread to her spine. She's had a whole host of treatments. Both radiation and chemo. No surgery because the lesions were already wrapped around her spinal column. She's been treated at Beth Israel and Dana Farber in Boston. The quality of care has been trememdous. Unfortunately they caught it late. The fact that she's still here is testimony to her strength  and what they have been able to do. The lesions are now in her spinal column and she's barely able to get around with a walker.  We don't know how long she has. She wants to stay, we have a adopted five year old, but I truly doubt she will make it to next Christmas. She's proven me wrong before and I hope she does again.... Chrismv Thu, 29 Mar 2007 00:00:00 GMT  On 11/6/2006 Momoffive wrote:Hi there...I have malignant metastatic insulinoma (islet cell carcinoma). I see Dr. Yao at MD Anderson and I am starting hopefully the RAD001 study next week. I was diagnosed in aug 99, had 8 mos of chemo, the whipple etc surgery by dr. doug evans and dr. vouthey at MDA. Had a yr of remission, recurrence in the lymph nodes, temedor/thalidomide; carboplatinum, abraxane and avastin and now this new drug. Oh yes, I also went to the Netherlands 4 times for the LU-octreotate therapy which was very helpful. If you or anyone has any questions and wants to correspond,email me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- taj brownI have been a patient of Dr. Yao's for over three years and completed the RAD001 in March '07.  It worked well for about a year and now the tumor's are growing again.  I'm very interested in your experience in the Netherlands.  Any information you can provide regarding LU-Octreotate would be appreciated.  Also, how was the treatment helpful?  Thanks,Jack Jackdanville Thu, 17 May 2007 00:00:00 GMT  On 11/6/2006 Momoffive wrote:I too have islet cell carcioma (diagnosed 8/99) i had the LU octreotate in the netherlands four times. did well for two yrs.. then had to try something else. am going to start rad001 next week we hope. i'd like to hear how you are doing. t.brownMomoffive:  I'm ten years into my islet cell cancer and would appreciate any info regarding your experience with LU octreotate.  Where did you get the treatment, contact info, etc.Thanks,JackDanville Jackdanville Thu, 17 May 2007 00:00:00 GMT  On 5/13/2006 Tigerlillygal wrote:I was diagnosed with islet cell somatostatinoma in 1998 when the tail of my pancreas was removed. They said I had probably had it for 10 or 15 years. It had appeared in one lymph node. In 2002, I was told it had spread to the liver and surgery would not help since there were multiple tumors in both lobes. Now, they tell me I have 2 to 3 years left. However, I just went to a private laboratory in Houston where they are doing a treatment protocol involving a form of sandostatin and Indium-111. The tumors have receptors for the sandostatin, which carries 100 times the radiation normally given, right into the tumors, without affecting healthy tissue, I am told. I do not yet know the outcome of this treatment. Also, since the drug is still considered "investigative", many insurance companies will not cover it, and it costs around $20,000. The incidence of this caner is about 1 in 40 million, so not many doctors really know much about it and not a lot of time or money has been put into developing treatment for it. I have been receiving Sandostation by IM injection since 2002, and have not had any discomfort whatsoever, so far. If I can give you any more information, I would be happy to have you email me on this forum. MarieHello:My husband had surgery for the same over a yeer ago and is recieving Sandostatin shots. He had liver mes and they removed the tail of pancreas and spleen. He has no symptoms and his labs are normal., so far no progression. I would appreciate any info. in case things change. Thank you.and good luck. Mary  coldcountry Wed, 21 Nov 2007 00:00:00 GMT I too lost my husband to this horrible disease.  Slow growing, clinical trials, PET, sandostatin....we tried them all.  He was 54 yrs old.  How ...why...are still thoughts that I have daily.  I miss him so. Lenawee Thu, 06 Mar 2008 00:00:00 GMT  On 2/27/2005 Dawna wrote:Hello, I am new to this board (and communicating online). I was diagnosed with islet cell carcinoma, had surgery where nothing was done and sent for chemo/radiation, then told to just watch it as it is still unresectable. I am 36 and I need to try to figure out how to live with all the uncertainty. They say it is slow growing but, does that mean 5 or 20 years? Should I be doing something in the mean time?4/9/2008 11:19:58 AM ET News Release IndexOncolytics Biotech Inc. Reports Positive Interim Results of U.K.Combination REOLYSIN® and Carboplatin/Paclitaxel TrialCALGARY, AB, --- April 9, 2008 - Oncolytics Biotech Inc.("Oncolytics") (TSX:ONC, NASDAQ:ONCY) today announced positiveinterim results from its U.K. combination REOLYSIN® andcarboplatin/paclitaxel trial. Dr. Kevin Harrington of The Instituteof Cancer Research, London, and the principal investigator for thetrial, presented the results today at The 5th Annual Conference ofthe British Society for Gene Therapy (BSGT) in Edinburgh, Scotland.Four of the first eight patients treated in the study to date have adiagnosis of carcinoma of the head and neck. All three head and neckpatients evaluated to date have had excellent clinical andradiological responses without appreciable toxicity. Preliminaryassessment after recruitment of the first two cohorts has suggestedthat patients with head and neck carcinomas may represent a group ofpatients in whom the combination of carboplatin/paclitaxel andREOLYSIN® is active."These early results in head and neck patients are remarkable,considering the prognosis for refractory patients is generally poor,"said Dr. Karl Mettinger, Chief Medical Officer for Oncolytics.In the first cohort, the patient with head and neck cancer received 8cycles of treatment (the maximum allowed) and achieved a clinicalcomplete response. In the second cohort, the two patients with headand neck cancers with widespread disseminated disease have eachreceived six cycles of treatment to date and both have achievedsignificant partial responses. Two of the three patients, includingthe patient with the clinical complete response, had previouslyreceived cisplatin/5-FU treatment and all three had previouslyreceived radiotherapy.More information about this clinical trial, including CT scans fromselected patients enrolled on the trial, can be found on theOncolytics website at www.oncolyticsbiotech.com.The primary objective of the trial is to determine the MaximumTolerated Dose (MTD), Dose-Limiting Toxicity (DLT), recommended doseand dosing schedule and safety profile of REOLYSIN® when administeredin combination with paclitaxel and carboplatin. Secondary objectivesinclude the evaluation of immune response to the drug combination,the body's response to the drug combination compared to chemotherapyalone and any evidence of anti-tumour activity.The principal investigators are Dr. Kevin Harrington of The Instituteof Cancer Research and The Royal Marsden NHS Foundation Trust, andDr. Geoff Hall of St. James's Hospital in Leeds, U.K.About Oncolytics Biotech Inc.Oncolytics is a Calgary-based biotechnology company focused on thedevelopment of oncolytic viruses as potential cancer therapeutics.Oncolytics' clinical program includes a variety of Phase I/II andPhase II human trials using REOLYSIN®, its proprietary formulation ofthe human reovirus, alone and in combination with radiation orchemotherapy. For further information about Oncolytics, please visitwww.oncolyticsbiotech.com kz7m@ Wed, 09 Apr 2008 00:00:00 GMT  I'm thankful that I have found this message board. I am also a patient of Dr. Yao's and have been doing chemotherapy for 12 months now. My question is, everyone seems to have had surgery, which Dr. Yao said was not an option for me. Did you have other forms of treatment before surgery? Had the tumors metastisized before you had surgery? My tumors had already spread to my liver and several lymph nodes, which is why Dr. Yao has said that surgery would be ineffective. jenbot Mon, 07 Jul 2008 00:00:00 GMT For those seeking more information about the lu targeted radiation treatments in the Netherland, they have a web site, www.prtt.nl. Dr Thomas O , Dorisio at Iowa university Is the most knowledgable Dr. regarding this treatment in the US. Your tumors must be octrotide positive. There is also another treatment center in Basal Switzerland.Most major islet cell cancer centers, MD Anderson, Mayo, etc don't inform their patients of this treatment option, because the are into their own clinical trials. My wife had three completely different treatment options given from, Mayo, MD Anderson,and John Hopkins. It depends what door you walk into, which treatment you get. mamou2 mamou2 Tue, 29 Jul 2008 00:00:00 GMT I was diagnosed with islet cell cancer of the pancreas in 2005 after suffering for two years with "diverticulitis" Be sure to get a cat scan of pancreas if having pains.  I had surgery in Seattle and they found the tumors were in the liver.  I went without any more treatment for one year and then I was on chemo for one year and I have been without treatment for another year.  So basically I have had three excellent years with this cancer.  I have another catscan in November.  When the tumors grow again I have to decide what to do next.  I would love to hear from other people being treated for this disease.  I am 68 and am thankful for every day modern medicine and God have given me.  At first I was told I had 6 weeks to live and they couldn't do surgery   I was so fortunate to be led to a surgeon that would save my life with surgery.  I am interested in new treatments that people have tried and also chemoembolization experiences.  My friend here is have chemoembolization.  Ruthward Mon, 06 Oct 2008 00:00:00 GMT