A Possible Cure for Neuroendocrine Cancer: Exciting Update!

Back in September 2012 we shared the following:  “For $1.6 million (1 million pounds) an oncolytic virus that has the potential to cure neuroendocrine cancer can be named for the donor.  At Uppsala University in Sweden researchers are ready to start a clinical trial for up to 20 NET (neuroendocrine tumor) cancer patients but need funding to make the trial possible.  Oncolytic viruses have great potential in cancer research as they cause cancer cells to be destroyed.” Thanks to the amazing iCancer campaign — the championing of the cause by Alexander Masters, Dominic Nutt and Liz Scarff in Europe and Catherine Cooling Davis in the United States — and the enormously generous gift of about $2 million from Vincent Hamilton, founder and chairman of the Board of Tethys Oil AB, the trial is going to become a reality!!

The idea to name the virus after a person is thanks to British author Alexander Masters, whose dear friend has pancreatic neuroendocrine tumor cancer, the same type of cancer that took the life of Steve Jobs of Apple in October 2011.  Media coverage about the oncolytic virus and the opportunity for a donor to have it named for a loved one has been extraordinary – resulting in greater awareness of NET cancers throughout the world.  The campaign to raise funds went viral in social media thanks to the efforts of the iCancer Virus team, led by Alexander Masters, with Liz Scarff,  a campaigning digital and social media expert;  Dominic Nutt, who has the same type of cancer as Steve Jobs; and Colin Midson, a literary publicist and friend of Alexander Masters. Catherine Cooling Davis, a 29-year old businesswoman who has neuroendocrine cancer, led the fundraising efforts in the United States.

iCancer Campaign Raises Millions for Neuroendocrine Cancer Clinical Trial

With 3,847 gifts from donors, Professor Magnus Essand and his colleagues Dr. Justyna Leja and Professor Kjell Öberg at Uppsala University can proceed with setting up the oncolytic virus clinical trial, which should open to patients in about a year.  And in addition to his gift, Mr. Hamilton has made another significant contribution to the trial.  He flew to Baylor College in Houston, Texas to negotiate a deal on producing industrial quantities of the virus as Uppsala does not have the appropriate facilities.

Alexander Masters and Neuroendocrine Cancer Campaign

Alexander Masters

In addition to the potential cure for neuroendocrine cancer, the iCancer campaign has demonstrated how science can be funded and guided by the public.  According to Alexander Masters in a recent Telegraph article (click here to read the article),

Advanced medical research is not the exclusive domain of pharmaceutical companies and slow-moving, committee-driven charities and governments. With energy and generosity, a little internet research and a good Skype connection, ordinary people can step in and direct world-class medical work in a responsible, scientifically valuable way, so that instead of being dumped in a freezer and forgotten, it once again stands a chance of benefiting ordinary patients.

What’s next for the iCancer campaigners?  They are exploring the possibility of funding two clinical trials in the United States with the Seneca Valley virus, one for lung cancer and the other for children’s brain tumors, both of which are often forms of neuroendocrine tumors.

On behalf of the carcinoid/NET community, the Carcinoid Cancer Foundation extends its deepest appreciation to all involved with iCancer, with special thanks to Vincent Hamilton for his extraordinary generosity.  Congratulations on your amazing efforts!!

It is with great sadness that we learned of the passing of Vincent Hamilton on March 10, 2014 from a long battle with neuroendocrine cancer.  Our thoughts are with his family, friends, and colleagues.

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  • Lety Pineda

    Amazing persons!!!! God Bless them all!!!

  • D.G.E. LEW

    Diagnosed with mid-gut NETs, thank you to everyone involved. Thank you doesn’t even
    come close to expressing my gratitude. Many blessings to all-
    From D.G.E.Lewis

    • John

      I had a NET high grade small cell attached to the junction of my esophagus and stomach. Treated with carboplatin and radiation and now cancer free. Wish to spread my good luck. Contact me for mote info.

      • Sharon Andrews

        Where were you treated? I was just diagnosed with midgut (cecum) cacinoid tumor and wondering the best course of action. Surgery has been recommended but….if there’s another option, I’d like to look into it.

        • john teschner

          Sharon, I was treated at Memorial Sloan Kettering Cancer Center in NYC. The name of Oncologist who treated me is David Ilson. Everyone at the hospital is great. I learned from the get go that the tissue is the issue and not everyone needs surgery and some do. I had a small cell carcinoid which I was told you do not operate on . You may write me at jhtesq@yahoo.com if you would like.

      • pat torres

        Hi John ,

        My sister was diagnosed with Neuro endocrine cancer , Doctor told that there no way to cure it .
        Can you please explain further how long from the day you diagnosed and until you were cured from you cancer .
        What treatment you’ve undergone to remove the cancer ?

      • Hello John,

        That is fantastic news and congratulations to you. I have a high grade metastatic small cell undif NET. Started in the upper intestine gone to liver, lymph nodes and bones head to toe – It’s done a massive amount of damage to my neck, spine and bones in general. It is heartening to know that you are cancer free. There is always hope. Take care.

        • john

          Thank you for your note. Every step I take I do so with gratitude and mindfulness.
          I will remember you in my prayers.


      • Mary

        Hello John,

        My name is Mary.
        I am currently being screened for NET’s. I have suspicious liver cysts and one in pancreas along with gastrointestinal issues.
        I am glad to see there is hope, by reading your note. I wish you continued good health.

        • John

          Mary, I will remember you in my prayers for good health.


  • Fantastic news! Looking forward to successes as the project moves forward. Congratulations to the people involved in the fundraising and awareness activities and special thanks to Vincent Hamilton for his enormously generous gift!

  • Trevor Gaunt

    I have lung carcinoid. The go-ahead for this project is wonderful news at last! I read the Daily Telegraph articles, but didn’t dare hope for this generous gift to happen. Many, many thanks to Vincent Hamilton.

  • sheila papautsky

    I am a 45 yrs old brazilian woman who found out after 6 months of the 1st syntoms that I have carcinoid but could not find out where the primary tumor is but it has metastase in the bone right side stenum and lower back i5 and l5 ribs. All less than 2 cm and will have to start quimo with 177 lu. the doctor who found it is frpm south africa steve bikop and professor at univ of Pretoria. is there anyway I can be a candidate for the trial in the usa or brazil or s africa or any country. Please please.. I am very health only had syntoms for 2 weeks and went away totally. please how even if I have to pay.

    • Hi Sheila, there are many clinical trials around the world for carcinoid and neuroendocrine tumor patients. If you go to http://www.clinicaltrials.gov you can search for trials by typing in the words carcinoid or neuroendocrine tumors. Each listing will show you the locations of the trial. We hope this helps.

  • roger

    many,many thanks Mr.Hamilton

  • Mrs M .Khan

    Great news ,one day carcinoid will be treatable as there are so many clinical trials around the world.
    and Mr Hamilton many thanks for this generous gift.

  • Will

    I would love for this to be a cure. I lost my mom in January of this year to carcinoid after a 4 year battle from her initial diagnosis. I’m 26 and she was only 56. The pain is tremendous. So glad I chose to open the newsletter (which I usually don’t) and read this!

  • I have written about four notes and erased them all, too much info, too little info, too sappy, too sad…….Well, it all comes down to this…….thank you from the bottom of my heart for the opportunity to dream of a future.

    Thank you to all who volunteered their time, for all those who contributed their hardearned money, and thank you to the great doctors out there and to the doctors and/or scientists trying to find a cure.

  • Kimbly Redman

    It is wonderful to have hope. A big thank to all our generous donors. Wouldn’t it be wonderful to be cancer free. Many of us are middle age, some lucky enough to have reached an old age, but we are finding more younger and I mean young carcinoid syndrome patients. Maybe these people will have a chance. I pray this all works out.

  • JoAnn Curtis

    Thanks for what you are doing. We are donating to the foundation in honor of our son’s birthday and decided to do this every year. He is a Pancreatic Neuroendrinetumor survivor, but still being watched closely.

    • Hi JoAnn, thank you so much for your support and kind words. We hope your son is feeling well and it’s definitely important for all NET survivors to be followed to ensure their best health possible. With appreciation from the CCF Team.

  • David Coppedge

    Very happy for this news! Proceed as rapidly as is safe. It may save my life some day.
    –Patient with metastatic liver tumors after ileal carcinoid resected surgically.

  • Sandra L. Garcia

    Sandra L. Garcia – Yes, it is good news and I pray the trials go well with no set backs. After 10 years of suffering with periodic ,sever, pain a CT scan was done and found a ” lemon size” carcinoid tumor in the small intestine, encasing the mesenteric artery and vein, so they could only debulk 1/3 of the tumor. I receive monthly injections of Sandostatin LAR to control and lessen carcinoid syndrome. I consider myself very fortunate. My surgery was in 2010 and so far I am doing very well. I’m 75 years old with a walking disability but my hope is in God and ongoing research. Never give up and pray, pray, pray always.

  • Marilyn

    Anyone out there on Sandostatin AND Afinitor? How are the side effects of the latter?

    • Jessica

      affinitor: my father took it for a week and half and his platelets went down so they had to discontinue until they go up again. It is his 4th line chemo now. He has poorlydefined high/mid grade tumors. He also has fluid rentention but we don’t know if it is the affinitor or something else taht is causing it. hope this helps.

    • Ali

      My dad is on Sandostatin LAR 20mg (for his Pancretic NET, mets to liver) for last 11 months now. No side effects on this.

    • Mark

      Hi, I was diagnosed with a PNET 3 1/2 years ago. It was a well differenated tumor (slow growing) it matastised like normal over time, I was on Sandostatin shots every month than tried Affinitor which was the absolute worst for me individually. Really hurt my kidney function and really lowered my platelets. So I did some research and now I receive PRRT therapy in Houston,TX at Execel diagnostics. Many success stories on PRRT in Europe for over 12 years, now in last trial for FDA approval for US for everyone. This is 80% effective in many levels, stopping of progress of tumors,reduction in tumors and no side effects, I am on my 2nd of 4 therapys, have read and met many success stories. Wish I had done this as a first defense as they do in Germany,Holland,England and Australia.
      Mark Angelo, Orlando Fl.

  • Jessica

    This is great… my father was diagnosed with high grade poorly defined PNETs last May 1, 2012. He is now having difficulties. He has fluid in his abdomen and legs swelling. He has blood clots in his upper thigh and got a filter placed in case they move. He is tired, frustrated and weak. His platelets are now low as well as the albumin. They are doing albumin infusuins and did a platelet trransfusion thsi past Saturday. We are hoping his platelets go up in order for him to start affinitor (had to stop bc of the platelet drop) or something else again. Anyone out there experience the same thing that can offer advise. He is a 64 year old man diagnosed at 62. Not operable as it spread from tail of pancreas to liver and bones and a small one in the lower left lobe of his lung.
    Thank you and gopod Luck to all.

  • Ed

    This is great but, as I understand it, the clinical trial includes only 10 to 15 people in Europe. Also, my understanding is that this will take many years for this to be approved for human use. So, there is no immediate benefit to current cancer patients. Am I wrong?

    I am newly diagnosed and I feel that I may not be getting the best of care. I have carcinoids in my colon, one femur, collar bone, liver and lymph nodes. My only meds so far have been Sandostatin (2 shots) and she says that it’s not working. Is it possible to know that after only 2 shots? She is now recommending chemo.

    Does anyone have any remarks that might help me navigate my way to a cure? I have been juicing beets and carrots, and have been eating onions and garlic. I’m also trying to reduce my meat intake and replace it with veggies and fruit. Any thoughts? Oh, I have a small blog that I just started at http://www.carcinoid-cancer.com – I would love anybody’s remarks and thoughts. 🙂

    • katsen

      Sandostatin LAR is really only used to suppress the symptoms of the disease. They include heart palpitations, wheezing, diarrhea, flushing. There is some research that found some patients have experienced suppressed tumor growth as well but it usually becomes a temporary thing as it was in my case. I was DX in ’07 with a primary in the Cecum with mets to the liver. I had surgery to remove the lemon sized primary tumor along with my gallbladder, 7 lymph nodes, 2 radio frequency ablations on Liver mets and a Liver resection. Recently in the past year I have had Y-90 procedure on both lobes of my liver. which were successful. I have been having trouble with scar tissue where the intestine kinks like a garden hose, and it has put me in the hospital 3 times. Now, the Dr.s found more tumors on my intestines. So I have to have the scar tissue issue fixed and while they are in there the will try to remove the tumors. But up until the past year I was ok. Only getting my Sando LAR (60mg) every month. It was more of a chronic thing. Well, That’s my story in a nut shell. But the Sando effecting tumor growth is questionable. Best of luck!

      • Ed

        Yes, I have read that and gotten second opinions from Doctors who said the same thing. I honestly have no idea why my Dr. is doing what she is doing. I’m working on finding somebody better informed. I was told that surgery is not an option for me. I’m ready to dig them out myself. I don’t get it. Do you mind if I ask who your Dr. is? They are so aggressive and I feel that I need to be more aggressive.

    • Thomas Olson

      I just read your post and I am being treated by Dr Edwrd Wollin and Los Angeles at Cedars Sinai Hospital. It takes 4 monthst for Sandostain to kick in. Chemo is typically ineffective. I suggest that you get a consultation with an NET Center where your case is being reviewed by an entire team of doctors; oncology, encrinology, surgeons interventional radiologists….Dr Liu at Venderbilt is another good doctor. Dr Woltering at Louisiana State University has a grest NET Group as well.

      • Hi Thomas, thanks so much for sharing about your experience with being treated by the NET cancer team at Cedars-Sinai in Los Angeles. All three of the doctors that you mention — Dr. Wolin, Dr. Liu and Dr. Woltering — are members of carcinoid/neuroendocrine tumor centers which offer a multidisciplinary team of physicians. We’re always happy to help patients locate carcinoid/NET specialists. Please give us a call at 888-722-3132, Eastern Time, we’re here to help!

      • Ed

        Hi Thomas, thank you so much for your reply. Since my last note, I have switched doctors. He seems very good and I am starting to trust him.

        I am currently taking Xeloda which is supposed to be fairly effective in preventing growth (from what I have read). I have read the information on the drug and it will even shrink tumors sometimes. This is less likely in carcinoid situations from my understanding. The medicine attacks cells that are dividing and since carcinoids grow slow…..the xeloda won’t kill many cells BUT it will kill some.

        I hoping my finances will change soon so that I can seek more specialized help. Has anyone had any success stories regarding tumor shrinkage…maybe even death?


    • Mark

      Look up Houston PRRT, there is no other way to go, been doing everything else, this works and it will give you much more time for other things to come out to help us,

  • Sue Tunnell

    Hi all, in 2010 my 24 year old son was diagnosed with what was thought to be pancreatitis, over the last few years he has been admitted to hospital on numerous occasions …. In pain vomiting shaking sweating etc etc, each time treated for pancreatitis then sent home just for the cycle to start all over again. Then in Feb this year 2014 he was given a scan and a few other tests and it was discovered he had a locally advanced pancreatic endocrine tumor at the head of the pancreas with positive peripancratic lymph nodes, the tumour was locally advanced involving the portal vein and superior mesenteric vein, the oncologist said the plan was to try and shrink the tumour with chemo with hope of operating to remove the tumour in the pancreas, we were told treatment would be started asap, he needed a dotatate pet scan that he finally got at the beginning of this month June 2014, we went to the hospital for the results feeling optimistic and they dropped the bomb shell that the cancer had now spread to his liver stage 4 as they put it, nothing much they could do other than make sure he is comfortable and give him chemo 6hours a day every 3 weeks to hopefully buy him a bit of time they said he may have 2 years. I sat and watched him shrink in his seat and he looked so lost and the fear in his eyes was indescribable as his mother it broke my heart and I was powerless to make it all better, I just so wish there was more awareness and funding for this disease, there has to be something that can be done, I can,t just sit back and watch my son die, my heart truly goes out to all of you and I hope in time we all get the treatment that is needed. As I write this my son has still not received any chemo as it seems they are waiting for funding x

    • Lisa Angelo

      Please see the comments below regarding Excel diagnostic center in Houston. PRRT is the treatment for your son.
      With tears in my eyes and prayers for you both.

  • Kim

    My 19 year old daughter was finally properly diagnosed in November 2013 and had surgery in January 2014. I pray for a cure.

  • Gail Mooney

    For carcinoid syndrome look into trials at Moffitt Cancer Hospital in Tampa–they are doing several studies and I was in one that stopped all the carcinoids, I have 9 sites including liver, pancreas, spine, leg, hips, etc. Dr. Strossberg is the guy. He will help you–not too great on bedside manner, but he is a great researcher and gets to the bottom of your cancer and will put you in a trial if you fit the parameter.

    • Mark

      I am a patient of Dr. Strossberg and they are very supportive. He gave a recommendation to Excel Diagnostics in Houston whom they have a good relationship with. I have had two therapy session there and feel great! This can be a chronic disease not a death sentence!
      Good luck,

      • Thanks so much, Mark, for sharing your journey as a pNET patient and your experience with PRRT at Excel Diagnostics in Houston. It’s wonderful that you are feeling great. Your positive attitude is terrific and you are an inspiration to others. For anyone interested in PRRT at Excel, here’s a link for more information: http://www.exceldiagnostics.com/diagnostic-imaging/. Wishing you a very happy holiday season and all the best in the New Year.

  • Thomas Pagonis

    Hello my name is Thomas and i am from Greece.
    First of all I’m sorry about my English.
    Second it’s very difficult from me to understand exactly all yours and different problems of your health because of my language and i feel sorry about that.
    So for now I’ll tell you my story.
    I’m 46 years old and it’s my first time that I write in blogs.
    At 2004 (36 Years old) the doctors diagnosed (with MRI scan and octreoscan)at my pancreas 3 tumors.
    I had a operation and they deduct the tail and the body of pancreas.
    The results of biopsy was neuroendocrine tumor (gastrinoma).
    From then i am on Sandostatin Lar 30mg per month and 2 pills
    Ilaprazole (is a proton pump inhibitor PPI.) per day because of the high gastrin in my blood that i still have (300-700)
    At 2011 the doctors diagnosed (with EUS Endoscopic Ultrasound test )again a tumor at my duodenum.
    I had and second operation and the results was again the same (gastrinoma)
    At December of 2013 a new diagnose (with MRI scan,octreoscan and pet scan) for swelling of lymph node and maybe the thymus gland in mediastinum, (in front of the heart and behind the sternum.) and something very small close to pancreas (they don’t know exactly where and what is it).
    In February 2014 i had new operation and the doctors deduct some lymph nodes.
    The biopsy was negative.
    Two months ago at the tests that i do every 5-6 months the “new”doctors ask me to do the biopsy again for the operation of 2004 and 2011 again.
    (The hospital have the blogs in paraffin from the operations)
    The results are unbelievable!
    At 2004 the 3 tumors from pancreas wasn’t gastrinoma but glucagonoma (other NET).And of course never in my life had any kind of problem of glucagonoma.
    For the operation of 2011 in my duodenum the results are the same(gastrinoma).
    One month ago i had a a new octreoscan and an MRI scan and the rest lymph nodes are again very big and again something very small close to pancreas.
    The doctors suggest me again a new but big operation this time to deduct all the lymph nodes because they afraid for MEN1.
    The only negative blood results are gastrin and chromogranine A that they are high as 10 years now.
    All the other results are very good and there are nothing to improve MEN1.
    Last week i refused to go for new operation and i try to find other solutions before the operation.
    I all ready find a very good doctor that he is specialist to take biopsy with EUS (Endoscopic Ultrasound) and at 3 of December he will try to take biopsy from lymph node or thymus gland and from pancreas (the head is still exist).
    That’s all for now.
    It was too difficult for me to write all this (more than 2 hours and one opened dictionary close to me).
    It would be very helpful and appreciated if someone of you has any ideas or similar problems to discuss with me.
    Thank you for your time and I wish you all the best.

  • Joanne

    My father was diagnosed with NET back in May 2014. At first, we thought it was only in rectum (which believed as the primary location) but from the result from OctreoScan done in Aug ’14, we learnt it has metastasized to liver and bone and spine cord – almost every part of bone. The funny thing was he didn’t experience any carcinoma symptom except constipation.
    Started from Nov ’14, he has been on monthly injections of somatostatin analog. Then he was forced to skip 1 month as the hospital run out of stock. Then the nightmare came as he started to experience severe bone pain. Luckily he was able to resume his treatment early this month and he feels better now.
    I found you guys are considered lucky as your country doctors and health facility are much advance than my country – Malaysia.
    May I ask is there anything the patient can do to his/her lifestyle to prolong the survival rate and the most important thing to reduce the suffering?