A Possible Cure for Neuroendocrine Cancer — It Can Be Named for You or a Loved One

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.

Oncolytic Virus Fund at Uppsala University, a potential cure for rare neuroendocrine cancer

Magnus Essand, professor of gene therapy at Uppsala, has had an oncolytic virus in a freezer for the past two years that was used effectively in mice but has not yet been used in trials for humans as they are too expensive for academic centers.  Additionally, he cannot claim a patent for this oncolytic virus because of his early publication about his research and therefore it is less appealing to biotech companies. Funding would enable Uppsala to launch the world’s first human trial of an engineered virus that targets neuroendocrine cancer.

British author Alexander Masters and oncolytic viruses, a possible cure for neuroendocrine cancer

British author Alexander Masters has been working tirelessly to find funding to help cure neuroendocrine cancer.

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 nearly a year ago.  Traveling to universities in the United States, Mr. Masters was struck by how many buildings, rooms, and more are named for benefactors.  Mr. Masters saw the need in neuroendocrine research for a philanthropic individual to give money who wants his or her name, or the name of a loved one, attached to that research. Read Alexander Masters’ article that appeared in The Telegraph on August 31, 2012, A Virus that Kills Cancer: The Cure That’s Waiting in the Cold, here: http://www.telegraph.co.uk/science/9508895/A-virus-that-kills-cancer-the-cure-thats-waiting-in-the-coldc.html.

Steve Jobs died of a pancreatic neuroendocrine tumor at the age of 56.

In an article by Andrew Jack in London’s Financial Times* yesterday about the researchers’ offer to name the cancer drug, Professor Jack Bell, a leading Canadian cancer researcher was quoted when he described oncolytic viruses as “a very promising and safe field.”  He said the naming of a drug was a “clever idea” as it is extremely challenging to obtain funding for research.

For more information about the Oncolytic Virus Fund at Uppsala University, click here: http://www.uu.se/en/support/oncolytic.

*Please note, the Financial Times is by subscription but interested individuals can have limited access for free and after registering, can access the August 31, 2012 article, “Scientists offer to name cancer drug for £1m”

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  • bernsie13@gmail.com

    Can Steve Job’s estate fund this effort?

    Sent from my iPhone

    • Cathy

      Is this a possible cure only for carcinoid nets, or all neuroendocrine cancers. My son has poorly differentiated neuroendocrine which is very different from carcinoid nets.

      • gwen wheeler

        My daughter also has been diagnosed with poorly differentiated neuroendocrine cancer Moffitt Cancer Center is trying Eptopside and clistiplatin. Please let know if you have found a better treatment thanks.

        • Cathy Frisch

          Hi Gwen,

          We’ve been told there is no cure. The cisplatin etoposide mix did reduce the tumor size some after 4 rounds of chemo. He was diagnosed 2/2/2012. He started having treatments late Feb. 2012 and finished the 4 rounds Apr 2012. Late May he had a liver resection which removed 60% of his liver and 2 very large masses. The total removed was the size of a basketball. This was a very serious and hard surgery but he did well with it. This was performed at Vanderbilt. He has not had any other cancer in his body at this point, but it did metastasized to his brain. He had 4 tumors in August of last year. One was surgically removed and then had targeted radiation on all. In January of this year he had 2 more brain tumors. They did targeted radiation in February. He has body pain probably from the radiation and some nausa. Overall he’s doing pretty well with his pain meds considering what he’s been through. He has surpassed his prognosis which we thank God for every day. We also made a trip to John Hopkins in March 2012 and met with Dr. Geschwind about a targeted chemo that would have been injected straight to the liver. We would have chosen this method of treatment next if the surgery was not possible.
          Where is the location of your daughter’s cancer? How is she doing and what is her age. Feel free to ask me any questions.

          • gwen wheeler

            Hi Cathy
            My daughter is 25. She was initally diagnosed with cylindroma a rare sweat gland cancer about 2 years ago with clear border on a small firm nodular on her left upper back after 3 minor surgeries at that time she saw a cutaneous oncologist. He never touched her said I have looked at the path report and the lesion is excised that is all that needs to be done. I said are you sure this doesn’t spread he said yes and he does not do body scans. So we took his word I look back and wondered why didnt I get a 2nd opinion my daughter was 23 at that time. Last spring this time of the year she started losing weight and felt nauseated and could only eat a few bites. She had no insurance she had paid 1500.00 for the oncologist to tell her she was cancerfree so she had no extra money to get seen. I finally got her on my insurance (thanks Omabacare) she finally could see a physician June 7, 2012 at 7 am on that same day her Dr called me at 5 pm and told me my 24 year old had metastasis cancer to her liver and lung. I was heartbroken my daughter was in denial. After 2 months of workup she finally had a liver biopsy and petscan show a cylindroma so the GI oncologist sent us back to cutaneous clinic at the same Moffitt Cancer Center. This time Tasha has a wonderful your oncologist who works with us. She started chemo July 4 taxol/carplation. She finished 6 months and was on chemo holiday. She had lost 100 lb, very fatigue had to have a care giver at all times (me) when she developed double vision. After a week in the hospital a new resident noticed a lesion in her skull during a tumor board. It had been there the whole time but had grown since the brain blood barrier keeps the chemo out and was causing 6th cranial nerve palsy. She had brain surgery and the path report changed everything for us poorly differentiated neuroendocrine cancer with mets to liver bones, bilateral lungs colon, and skull wrapped around the carotid artery. She asked her prognosis was given a few months that was March 10 2013. She wants to keep fighting but i fear her body is losing the battle. Sorry so long guess I just needed to vent to someone who understands.

          • Cathy Frisch

            Feel free to vent. I am so sorry for all the pain your daughter has gone through. It sounds like maybe last summer they mis-diagnoised the type of cancer she had. I’m surprised that they did not do a brain MRI when they found the cancer in the liver and lungs. It also doesn’t make sense that it took 2 months to get a biopsy.

            From what I’ve been told and experienced with my son, Jeremy, these tumors can pop up at anytime. They are fast growing. I know the chemo is hard on the body. Jeremy only had to have 4 3-day treatments before his surgery. He had lost about 50 lbs. I guess they have to do chemo instead of surgery since Tasha has mestastises to multiple sites.

            Is Tasha still unable to eat? Is her prognosis the same whether or not she continues with the chemo? I will add you and her to my prayer list.

            My son was diagnosed on Feb 2, 2012, the day before his 30th birthday. They originally told us that if the chemo worked, he would probably have 6-12 months. Then after the brain tumors, we were told he only had months. We are still praying and thanking God every day that he is still here.

            I do know how you feel. Every day that my son is still here is a blessing and a challange. I cry and pray every day and worry about what will come the next day and week. If you want to give me your email, we can correspond with each other off of this site. In the meantime, I will be thinking of you.

          • gwen wheeler

            Thanks again for letting me vent. My email is gwheeler_us@yahoo.com. One more thing my daughter’s mood has become more rude mainly toward me have you experience the same thing. Just wondering is it the cancer or the pain meds?

  • That would be absolutely fantastic! Sadly, while some people have tried to reach out, there has yet to be a positive response. If you know of anyone connected to the Jobs’ family or Apple and can recommend someone we can contact, we’d definitely do so. Please send us an email through the contact form on our website, http://www.carcinoid.org if we can help!

  • If every carcinoid patient in the world gave $50 we would have more than enough $.

  • Kat, that’s a terrific idea! Please help spread the word and encourage all in the carcinoid/NET community, their loved ones, friends, and colleagues to make a donation. Imagine how quickly that fund will grow!!!

  • gary

    has anyone asked the lance armstrong livestrong foundation

  • Gary, that’s a great suggestion!

  • Michael Neal

    I might be interested in this project and would like direct contact details.

  • Hi Michael, the best people to contact are those in Sweden, either Professor Essand or Dr. Kjell Oberg. Dr. Oberg’s email and telephone numbers are listed here: http://katalog.uu.se/empInfo/?id=N96-5147. Professor Essand’s contact information is here: http://katalog.uu.se/empInfo/?languageId=1&id=XX3908_1.

  • FirmBeliever

    Hope all whose interested for this possible cure will unite and make a BIG DIFFERENCE to us who long for the cure for this Rare disease..GOD BLESS us all!

  • Michael Neal

    have spoken to Kjell in the past, great guy….thanks.

  • Ask for $50 as a donation and draw the name out of a webcast from a bowl.

  • G Hall

    Why not contact Jobs’ family about a possible donation? Or maybe contact Donald Trump? Or both?

  • Justin

    where can I contribute not 1.6M but some money which if we all did could possibly fund a Phase 2 study?

  • I think it would be awesome to raise awareness that for 2 years a potential cure or delaying factor has sat in a fridge and done nothing because the guy can’t raise a single million euros.

    a million euros??? don’t they pay bankers less than that for a yearly bonus??? it’s pathetic how bad this world is where you can get a million for being a cog in a corrupt system, but a cure which affects millions has trouble raising a few thousand….

    lets prove them wrong! please like and share, I also have an awareness page for this specific issue here: https://www.facebook.com/pages/Potential-cure-for-cancer-funding/525107820838076

    I hope you’ll show your support and visit the page and like it and share it with everybody.

    thanks for reading! hope you are all having a great weekend!

  • Neil

    Why don’t we start a fund as soon as possible? Maybe Uppsala University can provide us an account number where we can send whatever contribution we can. In the meantime, we can also ask others. Let us start somewhere… My sister has just been diagnosed with mets to the liver. What a disease!!!

  • For all who are interested in contributing to the Oncolytic Virus Fund, here’s a link: http://www.uu.se/en/support/oncolytic/. You can use PayPal or a wire transfer from your bank to the Uppsala University account. Please do spread the word, let’s help make this world’s first clinical trial possible!

  • yeah, it’s all there, I’m just trying as much as possible to raise awareness and provide a platform for people to learn about it.

    it’s amazing to see how close it could be, yet nobody can do it because of such a small (relatively) amount of money!!

    please goto the facebook page and like+share it, we need more and more people to know and it’s an effecitve platform to do that!

    • Neil

      Maybe we should approach Bill Gates Foundation. I mailed Tim Cook, but no response.

  • Christopher, great Facebook page, we’ve added the Carcinoid Cancer Foundation to the Likes for your page! Carcinoid/NET cancer awareness is critical and support for trials such as the anticipated one at Uppsala University are so important for all in the carcinoid/NET community. Thanks for helping to spread the word!

  • if you give me some links, I’ll promote them back, I see no reason not to spread the love….

  • I’m not a sufferer and I hope I never am, but it really grates me how we can p*ss up the wall so much money on crap and yet when it comes to the important things, things that can push our world forward, things that will save your loved one, almost nothing is done.

    we give to charity, only to be told the same, in 10 years it’ll be curable and it’s always the same, why does that 10 years never arrive?

    then you realise the reason, it could arrive, if only for the focus of a few people to direct energy, not necessarily to do the research, thats for the clever guys in lab coats, but for people like us and stop relying on others to do the work, it really didnt take a lot of effort to do what I’m doing and with the internet it’s so easy….

    so it’s time we took control of this situation and let a few interested people push it up the hill, eventually it’ll arrive and I bet you it’ll be in less than 10 years….

  • Fred Slezak

    I like the idea of collecting as many small donations as possible, then pick a donor name from a hat. I had neuroendocrin cancer (pancreas) just like Jobs. He should have gone to the James Cancer Center at Ohio State Univ. I walked in there 4 years ago, stage 4/inoperable. After 18 months of experimental therapy and one big Whipple operation, I walked out with no cancer and no pancreas. Now 2 years cancer free. I hope we someday have a cure for those who do not have surgery as an option.

    • ELR

      What doctor did you see at the James Cancer Center?

      • Fred Slezak

        Dr Manisha Shah was/is my attending physician. Dr. Carl Schmidt performed the “Whipple”.Obviously, I would highly recommend both of them.

    • ELR

      Thanks Frank! What was the “experimental therapy”?

      • Fred Slezak

        I was prescribed a combination of Temadar and Xeloda, one is a breast cancer drug, the other is for brain cancer. I was on a strict regime of 14 days on, 14 days off. It was all pills, no IV. The dosages varied from as few as 6 pills a day, to as many as 14 (including the anti-nausea pills). After 8 cycles of this the tumor had shrunk by nearly 25%, allowing the surgeon to remove it. During the treatment I did not experience any nausea or hair loss, and was only fatugued for the last day or two of each cycle.

  • Lena Lea

    Where Should I send my donation too? Please let me no as I am willing to help fight this rare cancer Thanks Lena

    • Hey lena,

      I am running my fundraising for this treatment and I have a crowdfunding donation website that’s been collecting for about 1 month now.

      It’s hard work, but people like you make me see that it’s possible to keep working and keep pushing.

      You can go here and look at the donations made so far, please share and spread it to all the corners of the internet and your friends offline that you have.


  • Hi Lena and Christopher,

    Wow, the support is amazing for this research. Lena, here is a link to the website from Uppsala about how to contribute: http://www.uu.se/en/support/oncolytic. You can use PayPal or a bank transfer. Christopher, thanks so much for your efforts and support. Here’s another Crowdfunding page raising money for the oncolytic virus research at Uppsala, http://icancer.org.uk/. They’ve raised 14,000 pounds ($22,596.00 US dollars) in less than 2 days! Thank you all for your incredible support!!

  • yeah I heard about icancer through twitter, I’m just my own man trying to raise money how I can and using the resources I’ve got, they have an entire media team, a social networking team and extensive media contacts, haha, it’s impossible to compete, so I’m just plugging away the best I can with my limited resources.

    At the end, the money goes to the same place and thats the most important part.

    I think the iCancer team are doing a great job.

  • Christopher, every dollar matters! And with each and every contribution, they are one step closer at Uppsala to the total amount of funds needed to move forward. So please do keep up your efforts, they are deeply appreciated. There’s a wonderful slogan for the annual Rare Disease Awareness Day that I think is perfect here too: “Alone we are rare, together we are strong.”

  • Beth Z

    Christopher…..maybe you can help my sister…..I am new at this and don’t where to go…I am trying to find funding for my sister’s treatment with Lu177. Please please contact me or anyone else. She starts her clinical trial in the end of November. The entire treatemnt will cost approx $75000…. I just don’t know where to go for help. My email is bthzellers@aol.com
    I so appreciate your time…I could send you her story if you would like.

  • I’ll email you privately about it and advise you on how you can start a campaign yourself and what you need to do