Subject: Islet Cell Carcinoma
Date: 11/06/2006
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
Subject: Iselt Cell Carcinoma
Date: 11/06/2006
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
Subject: RE: Iselt Cell Carcinoma
Date: 02/28/2007
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??
Subject: RE: Islet Cell Carcinoma
Date: 03/29/2007
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....
Subject: RE: Islet Cell Carcioma (insulinoma)
Date: 05/17/2007
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 brown
I 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
Subject: RE: Islet Cell Carcinoma
Date: 05/17/2007
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.brown
Momoffive: 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
coldcountry Message: RE: Islet Cell Cancer
Subject: RE: Islet Cell Cancer
Date: 11/21/2007
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. Marie
Hello: 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
Subject: RE: Islet Cell Carcinoma
Date: 03/06/2008
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.
Subject: RE: Islet Cell Carcinoma
Date: 04/09/2008
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 Index
Oncolytics Biotech Inc. Reports Positive Interim Results of U.K.
Combination REOLYSIN® and Carboplatin/Paclitaxel Trial
CALGARY, AB, --- April 9, 2008 - Oncolytics Biotech Inc.
("Oncolytics") (TSX:ONC, NASDAQ:ONCY) today announced positive
interim results from its U.K. combination REOLYSIN® and
carboplatin/paclitaxel trial. Dr. Kevin Harrington of The Institute
of Cancer Research, London, and the principal investigator for the
trial, presented the results today at The 5th Annual Conference of
the British Society for Gene Therapy (BSGT) in Edinburgh, Scotland.
Four of the first eight patients treated in the study to date have a
diagnosis of carcinoma of the head and neck. All three head and neck
patients evaluated to date have had excellent clinical and
radiological responses without appreciable toxicity. Preliminary
assessment after recruitment of the first two cohorts has suggested
that patients with head and neck carcinomas may represent a group of
patients in whom the combination of carboplatin/paclitaxel and
REOLYSIN® 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 8
cycles of treatment (the maximum allowed) and achieved a clinical
complete response. In the second cohort, the two patients with head
and neck cancers with widespread disseminated disease have each
received six cycles of treatment to date and both have achieved
significant partial responses. Two of the three patients, including
the patient with the clinical complete response, had previously
received cisplatin/5-FU treatment and all three had previously
received radiotherapy.
More information about this clinical trial, including CT scans from
selected patients enrolled on the trial, can be found on the
Oncolytics website at www.oncolyticsbiotech.com.
The primary objective of the trial is to determine the Maximum
Tolerated Dose (MTD), Dose-Limiting Toxicity (DLT), recommended dose
and dosing schedule and safety profile of REOLYSIN® when administered
in combination with paclitaxel and carboplatin. Secondary objectives
include the evaluation of immune response to the drug combination,
the body's response to the drug combination compared to chemotherapy
alone and any evidence of anti-tumour activity.
The principal investigators are Dr. Kevin Harrington of The Institute
of Cancer Research and The Royal Marsden NHS Foundation Trust, and
Dr. Geoff Hall of St. James's Hospital in Leeds, U.K.
About Oncolytics Biotech Inc.
Oncolytics is a Calgary-based biotechnology company focused on the
development of oncolytic viruses as potential cancer therapeutics.
Oncolytics' clinical program includes a variety of Phase I/II and
Phase II human trials using REOLYSIN®, its proprietary formulation of
the human reovirus, alone and in combination with radiation or
chemotherapy. For further information about Oncolytics, please visit
www.oncolyticsbiotech.com |
Subject: RE: Islet Cell Carcioma (insulinoma)
Date: 07/07/2008
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.
|