www.ldnscience.org is a newly-launched site that brings attention to 2 non-mainstream medications “that work”. Go to this site and enjoy a well-researched, nicely-presented site that may help you or others with cancer, MS, and other diseases.
]]>Sam’s left arm (just below the shoulder) and left tibia (just below the knee) started hurting yesterday. This is consistent with bone mets from his most recent November MIBG scan so it’s probably disease in the arm but I am withholding hope that the leg pain is from playing soccer. It hurts when we press on his leg and that’s usually not neuroblastoma in my experience with Sam. I have started Sam back on germanium (an upcoming case study I’ll post) and it’s pretty phenomenal - his energy is much increased and I can always measure that by the resounding sound of his devilish laugh as he torments his two younger brothers. We did small doses of prednisone and hydrocodone last night at midnight which helped to resolve the pain. As of Sunday, Sam has not required any more pain medications which is a good sign and hopefully an indication that the germanium is working. Tomorrow is a work day for Sam - 7:30am at Rady Children’s Hospital of San Diego for a blood check and potentially chemo (Vinblastine and Rituxan).
Helpful links:
The two links have been very helpful to me so if you are new to cancer, I would bookmark them:
www.acor.org - communities of cancer patients/parents
www.cancerdecisions.com - Ralph Moss’ weekly blog which always has interesting insight
Have a wonderful Sunday. Neil
]]>Sam is doing well – we played soccer with a bunch of other kids yesterday and it was great to see him get the exercise. He has had no pain since 12/22 so for that we are very thankful. He wants to play spring baseball and so today we’ll make sure we go out and work on his swing – his strength and speed need a bit of work but I always tell him we can do anything as long as we work hard. Saturday (today), we played miniature golf and he had (2) aces so we’re very proud to see that. Despite all of the chemotherapy, surgery, and radiation he has seen, he still has phenomenal eye-hand coordination. My wife updates his personal website at www.teamsam.com and includes stories of my other children, Andrew and Charlie.
Today’s thoughts:
One of the things I would like to do is to build a library of compelling case studies and preclinical publications that show ‘big results” – sustained responses in mice and men.
I don’t differentiate between chemotherapy and alternative/complementary medicine. I have been a snob in the past eschewing chemotherapy for alternative/complementary medicine while at other times reversing course. Now I know that the only questions are “does it work and how toxic is the treatment?”
With that stated, I would like to post a recently published paper using (2) very non-toxic agents, Alpha-Lipoic Acid (ALA) and Low-Dose Naltrexone (LDN), to help pancreatic cancer patients.
Pancreatic cancer is a very bad diagnosis and has claimed the lives of Patrick Swayze (Dirty Dancing the movie), Chuck Daly (head coach of the two-time NBA Champion Detroit Pistons and the head coach of the 1992 Olympic Dream Team featuring Michael Jordan, Charles Barkley, Magic Johnson and Larry Bird), and Randy Pausch, the Carnegie Mellon computer science professor, Mike Deaver (Deputy Chief of Staff in Ronald Reagan’s presidency), Andrew McKelvey (billionaire founder of Monster and TMP), and Gene Upshaw (Pro Football Hall of Fame).
Naltrexone is used to help wean alcoholics away from drinking; normal dose is 50mg day and the dose used in the anti-cancer protocol is 10 to 20x less. I have learned that dosing is huge – the same drug will have very different effects depending upon the dose.
What is interesting is that LDN has been researched in neuroblastoma way back in the mid ‘80s by Dr. Ian Zagon, PhD from Penn State University. There have been no clinical trials using LDN or a complementary medicine, Opioid Growth Factor, in neuroblastoma to-date.
A summary of the initial ALA/LDN protocol used to treat a pancreatic cancer patient is below along with a link to the most recent publication detailing the case reports in (3) additional patients.
I would love to be aware of more case studies so please let me know of others so I can build an online library that can be readily accessible to parents,patients, and doctors.
A recent case report describes the long-term survival (>3 years) of a 46-year-old man who was diagnosed with a very aggressive cancer of the pancreas (adenocarcinoma) which had spread to the liver (Berkson BM et al 2006). The patient had a 3.9 x 3.9 cm tumor in the head of the pancreas and 4 tumors in the liver, one of which was 5 to 6 cm in diameter. He was told there was not much that could be done for him, yet he was treated with one round of a typical chemotherapy regimen (Gemzar® (gemcitabine) and Paraplatin® (carboplatin)), which caused reduced blood cell counts but no tumor regression. He received a second opinion that any further treatment would be in vain, so he opted for an integrative medical approach (via the Integrative Medical Center of New Mexico).
For his non-cancer medical conditions he was given several antacids (Prevacid® 30 mg, Rolaids®), antibiotics (Primsol™/Gantanol®), antiulcer agents (Mylanta®, Pepto-Bismol®), and the anti-anxiety drug, Xanax®, and then he started an integrative therapy program, the ALA-LDN (Intravenous Alpha-Lipoic Acid- Low-Dose Naltrexone) protocol.
The ALA-LDN protocol comprised alpha-lipoic acid (ALA) (300 to 600 mg intravenously twice weekly), low-dose naltrexone (Vivitrol™)(3 to 4.5 mg at bedtime), and orally, ALA (300 mg twice daily), selenium (200 micrograms twice daily), silymarin (300 mg four times daily), and vitamin B complex (3 high-dose capsules daily). In addition, he maintained a strict dietary regimen, performed a stress-reduction and exercise program, and led a healthy lifestyle. Remarkably, after just one treatment of intravenous ALA his symptoms began to disappear, his quality of life improved, and he had no unwanted side effects.
His pancreatic cancer has remained stable for more than 3-years and he is free from symptoms. Several other patients are being treated with this protocol and, to date, with success (Berkson BM et al 2006). Thus, the ALA-LDN protocol could possibly extend the lives of those pancreatic cancer patients who have been led to believe that their cancer is terminal.
So How Does It Work? Alpha-lipoic acid is a potent antioxidant (Baraboi VA 2005), improves immune cells’ functions (Mantovani G et al 2000), increases homocysteine levels in cancer cells which is toxic to them (Hultberg B 2003), and prevents the activation of nuclear factor kappaB (NF-kappaB) a key regulator of tumor development and progression (Sokoloski JA et al 1997;Suzuki YJ et al 1992;Vermeulen L et al. 2006). Selenium is useful in elevating antioxidant levels (Woutersen RA et al 1999; Zhan CD et al 2004) and silymarin is a selective COX-2 inhibitor (Cuendet M et al 2000a).
Low-dose naltrexone blocks opiate receptors causing the body to make large amounts of opiates in response, which in turn improve the immune response; specifically, natural killer cell cytotoxicity, B-cell and T-cell proliferation, and IFN-gamma production are maintained during times of immune suppression (Nelson CJ et al 2000).
Prevacid® is an antacid that also improves cell-mediated immunity, prevents immune suppression, and may also exert anti-inflammatory activity, all of which are important for cancer patients with impaired immune systems (Dattilo M et al 1998; Peddicord TE et al 1999).
]]>Many have followed my son’s journey (www.teamsam.com) for the last 5 years since his diagnosis of Stage 4 metastatic neuroblastoma in January 2005. He is a wonderful little boy, the oldest of three boys, who loves life, school, and tormenting his brothers.
If you don’t know much about me, with other parents, I have helped form (2) foundations: The Penelope & Sam Fund at the University of Vermont Cancer Center (place link) and Magic Water. Contributions to-date of Penelope & Sam Fund well exceed $1,000,000 and contributions to Magic Water exceed $985,000.
With this blog, I hope to provide a unique and compelling perspective from a parent who is fighting to save his son’s life. Neuroblastoma is a mean, evil, nasty cancer and is the #1 cause of death for children under the age of 5. Much ballyhooed progress in pediatric cancer is skewed by statistics: pediatric leukemias are much more highly curable than solid tumors and more kids get leukemia than solid tumors as well. There is much work to do for kids with solid tumors.
The focus of Magic Water is to help kids fighting today. That means we are interested in doing the hard work —- opening and funding clinical trials based on solid science. It is very easy to publish scientific and medical papers outlining basic research that speaks of results in mice or in cell lines. People have built entire careers publishing basic research papers that never have seen the light of a clinic. The difficult work is navigating the FDA, hospital review boards, and the politics of cancer research to open clinical trials. And it is very difficult to raise the money to fund each trial.
Magic Water is very proud that every dollar raised goes directly toward some type of preclinical or clinical research that can help kids either immediately or within the next 6 to 12 months.
We are also very optimistic that there is hope for kids TODAY and so I start my 2010 blog by speaking about a paper published in 2006 about an FDA-approved drug that helped a multiply-relapsed neuroblastoma child live an additional 21-months.
If you read the paper, you will see a very familiar story: once a child with neuroblastoma relapses, non-toxic options start to dwindle. The child had disease throughout his bones and bone marrow, his liver and his spleen, and was on intense levels of pain medication to manage the pain. Prior therapies yielded short-lived responses and each response became more and more brief.
The drug used is for a very rare condition called tyrosinemia – about 100 children in the US have this every year. What’s interesting about the thought process of the lead author, Dr. Nathan Kobrinsky MD, is that he had always thought of neuroblastoma as being a disease of tyrosine metabolism. And he’s not alone in that thought – tyrosine kinase inhibitors have been in clinical trial for neuroblastoma for years and it is well-understood that over-expression of Tyrosine Kinase A means a good prognosis; over-expression of Tyrosine Kinase B means a much more bleak perspective. So Dr. Kobrinsky made an educated guess and produced a remarkable case study.
He also tried to help other kids - he approached a team of neuroblastoma specialists and asked them to open the trial. He traveled with one of their leaders to Sweden to meet with the drug manufacturer. But as of January 1st, 2010, no other child with neuroblastoma has tried this drug.
I have some anxiety as I write this column – I want to challenge the medical community and I am always worried that my comments will affect how the community would treat my child. You get to a point where you can’t worry about it.
So I ask “when you have such a powerful case study that does the equivalent of stopping a speeding train using a drug that is FDA approved, used in pediatrics, and with known toxicities, why isn’t this in clinical trials for neuroblastoma TODAY?”
And for an answer, I turn to television.
One of my favorite shows is Pardon the Interruption on ESPN. Two bald, middle-aged guys arguing over everything sports. It’s intelligent, smart and funny. And one of the hosts, Tony Kornheiser, always mentions that Don Ohlmeyer, one of the wisest men in television, told him that if you don’t know the answer to a question, the answer is money.
To answer the question of nitisinone, the drug I mention, or any of the other things I will write of as the year goes by, Magic Water will need money because only money gives you a seat at the table to help influence decisions.
So please help as you can, if you can. I promise I will make this commentary insightful, honest, and any monies will help children. And it may even help you or a loved one in their fight against cancer.
Sincerely, Neil
]]>Our goal is to help kids today!
Be part of the MagicWater movement!
]]>Once again, we will have doctors and parents working collaboratively to talk how we can save kids fighting today. If you would be interested in learning more about what we do and how we do it, please email info@magicwater.org and we will respond promptly.
Our March 2nd post was on personalized medicine. Since then, MagicWater has made a $74,000 pledge which will help a group of researchers better understand how to help the very sickest kids. If you have a child with relapsed neuroblastoma or medulloblastoma, we would be happy to share information about the program.
If you had a child with cancer, how hard would you fight?
]]>One of the uses of nanotechology is that scientists can design buckets or encapsulations to hold the chemotherapeutic agent; these buckets are designed to be attracted to the tumor, not to healthy cells, so they release the chemotherapy primarily at the tumor site.
What does this mean to kids? It means less toxicity and better tumor-kill — one of the holy grails of improving care.
Irinotecan (Camptosar) is a very effective agent in the fight against neuroblastoma and has been the subject of many clinical trials. Below is a link to a Canadian research team that is ready to start clinical trials using a nanotechnology-delivered variant of Irinotecan. Our radar screen is full of nanotechnology options which offer the promise of a better delivery system. Please help us fulfill this promise and support our efforts or spread the word about the MagicWater Project.
www.canada.com/victoriatimescolonist/news/story.html?id=046a95e6-70c9-4ee8-a022-5106c15ddbfb
]]>The parents of MagicWater always joke that we don’t care who cures pediatric cancers, we just want kids to live. With that in mind, we would like to bring attention to Canary Foundation for their commitment to tackle a pediatric cancer - medulloblastoma. We think it is wonderful.
As you know, MagicWater also has research projects focusing on medulloblastoma and our hope, while we juggle kids in treatment, fulltime jobs, and fundraising, is to work with the Canary Foundation and expand their pediatric cancer programs.
And we know of another cancer where kids could benefit from earlier detection at initial diagnosis and at relapse — neuroblastoma. So please learn about the wonderful work done by the Canary Foundation and spread the word about MagicWater.
If you don’t care who gets credit, maybe just maybe, we can save some kids.
From their website:
The founder, Don Listwin, has donated $1,000,000 to The Center for Children’s Brain Tumors at Lucile Packard Children’s Hospital at Stanford. Scientists at the Center will use the funds to help unlock the molecular origins of medulloblastoma, the most common primary central nervous system tumor that arises in childhood. The gift will provide immediate funding for research that will bring together experienced physicians and scientists who will investigate fundamental mechanisms of medullablastoma; improve imaging methods to detect and analyze the tumors; and explore potential therapies. Medulloblastoma most often strikes children under age 10, and has a survival rate of 60 to 80 percent.
http://publicaffairs.uth.tmc.edu/media/newsreleases/nr2007/consultativeproteomics.html
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