While NF2 Information and Services - Recent News section shares new news articles a few times a week, there are older news topics that including basic explanations on different NF2 issues, some differences between NF1 and NF2 as well as other topics also worth looking at.
Help 'NF2 Information and Services Inc' raise $20,000 before January 2018.
Neurofibromatosis Type 2 (NF2) results in slow growth of tumors and other health problems that starts at birth, even if not seen until teen years or much later in life. There is no cure for the genetic condition NF2, and unfortunately, all tumor-drug treatments in clinical trials have a maximum potential for tumor size reduction less than 20%. The simple truth is until gene therapy, immunotherapy, and stem cell research is ready money donated to cures is simply donations to delays of tumors.
'NF2 Information and Services Inc.' is looking for donations to help share information on options that can help while we wait for research in the new fields to develop. No cure does not mean people with NF2 have no options now.
Donations needed for growth to help:
If the charity NF2 Information and Services or information included on the affiliated website of www.nf2is.org has helped you in some way, please consider donating and sharing the link.
A new concept in research during surgery for the care of Schwannoma tumors, decompression to remove as much of the mass as possible and use of CAP (cold atmospheric pressure) to kill the remaining tumor cells.
The goal of CAP use during Schwannoma surgery is to minimize the amount of possible nerve damage done during surgery to allow for better complete recovery. More research is needed.
While the research was specifically for Vestibular Schwannoma (VS), it should apply for any Schwannoma.
Yoon, Y. J., et al. "Anti-tumor effects of cold atmospheric pressure plasma on vestibular schwannoma demonstrate its feasibility
as an intra-operative adjuvant treatment." Free radical biology & medicine. (2017).
Source Link: https://www.ncbi.nlm.nih.gov/pubmed/29138018 | DOI: 10.1016/j.freeradbiomed.2017.11.011.
NF2 is a genetic Autosomal Dominant condition.
One of the more frightening problems an individual with NF2 might face is not knowing if they are Spontaneous NF2 (first generation) or Hereditary/Germline NF2 (second generation or after).
It is said that individuals who are the first generation with NF2 are typically mild, but when an individual is Spontaneous:
NF2 Information and Services. "Genetics." https://www.nf2is.org/genetics.php
Since NF2 is a rare condition, it is not surprising the link is missing NF2 as a reason for Muscle Wasting. https://www.healthline.com/symptom/muscle-wasting
If you know you have early signs of Peripheral Neuropathy (PN); you may want to take immediate action on suggestions included. Signs of Peripheral Neuropathy (PN) are explained in the link.
"Results suggest that multi-slice EPI-based pCASL may be an alternative to Dynamic Susceptibility Contrast imaging (DSC) with Gadolinium (GD) in cases where no contrast agent can be injected."
"CASL provides two advantages: absence of the injection of a contrast agent and reduction of susceptibility artifacts. The absence of an injection of a #contrast agent allows increasing the frequency of controls in patients with renal failure or at high risk of rapid tumor recurrence. Reduction of susceptibility artifacts contributes to good quality exams of some tumors near the skull base. Our data show regional differences between DSC perfusion maps and pCASL in some patients. At least in some cases, this mismatch can be explained by the relatively short post-label delay used for pCASL in our study. However, more cases would be needed to investigate these effects in more detail."
The method to view MRI tumor scans without contrast seems complex due limited imaging, the need for considerable analysis past the scan, it may be more complicated than the average MRI facility may be able to perform; thereby possibly unrealistic. More research is needed.
Some serious symptoms of anemia are:
If you have any of these symptoms, tell your doctor right away.Sources:
When given the options of a long MRI or two shorter MRI's, consider the risks of Gadolinium (Gd) before making a decision.
Gd "...including inflammation, oxidative stress, neurological damage, and damage to our genes, or DNA. The damage to cells from gadolinium is exacerbated by exposure to the magnetic fields of MRI scanners."
"...Gadolinium has been found to be retained in many tissues including bone and skin, but it also crosses the blood-brain barrier (BBB) where it ACCUMULATES IN HIGHLY SENSITIVE BRAIN TISSUE."
"Gadolinium has been found to be retained in bone, skin, and organs, but it also crosses the blood-brain barrier (BBB) where it accumulates in highly sensitive brain tissue. Gadolinium is also toxic to the kidneys, liver, brain, white blood cells, and damages DNA."
Accumulation: GD does not completely dissolve and leave the body after the injection. Therefore more likely a possible issue with each injection.
More than 400 mutations in the NF2 gene have been identified in people with the condition Neurofibromatosis Type 2.[Genetics
Home Reference, NF2 gene - neurofibromin 2]
NF2 Cytogenetic Location: 22q12.2
Genetics Home Reference. U.S. Department of Health & Human Services. "NF2 gene - neurofibromin 2" (Reviewed: January 2017, Published: July 18, 2017) https://ghr.nlm.nih.gov/gene/NF2#conditions
Today many skilled surgeons can use 3d printed models to learn, practice, and refine surgical techniques. 3d printed models and are used in medical schools for students to have almost real-life practice before use of tools in the human body.
MRI scans also offer surgeons the possibility to duplicate an individual's; veins, brains and any other part of the body to test the surgery with 3d printed pieces before surgery on the individual.
Dr. Boyd's discussion on the ability for the brain to continue to develop after childhood, even after brain trauma of strokes, also means brain trauma for other reasons. This should be seen as hope for individuals suffering brain tumor trauma. With practice and work, our mind and body may recover more function after brain trauma.
"Dr. Boyd's efforts are leading to the development of novel, and more effective, therapeutics for individuals with brain damage, but they are also shedding light on broader applications. By learning new concepts, taking advantage of opportunities, and participating in new activities, you are physically changing who you are, and opening up a world of endless possibility."
The Neurofibromatosis Type II (NF2) personal story of Lillian Duncan.
If you either have a heart issue or are at risk of a heart issue for example if you are considering or taking a tumor-drug treatment, it is important a Potassium rich diet.
Food high in Potassium includes Bananas and Avocados as well as; Sweet Potato, White Potato, Tomato Sauce, Watermelon, Spinach, Beets, Black beans, White beans, Salmon, Edamame, Butternut Squash, Swiss Chard, and Yogurt.
Other medications can also increase risks of heart issues. Know the possible side effects of what you are taking. Talk to your doctor.
Most people who are either visually impaired or blind for avoidable reasons.
Keep the vision you have, or correct vision issues while you can. Visit your eye doctor or Ophthalmologist for an eye exam.
Not all Neurofibromatosis Type 2 (NF2) eye issues are the direct result of brain tumors, and poor vision from brain tumors may be corrected with immediate treatment before permanent blindness.
Approval Based on Totality of Evidence From Global Development Program Showing MVASI is Highly Similar to Avastin (bevacizumab)
Biosimilar: A biosimilar is a biologic medical product which is almost an identical copy of an original product that is manufactured by a different company.
Biosimilars are officially approved versions of original "innovator" products and can be manufactured when the original product's patent expires.
Until now medical screws have been metal screws, mainly made of Titanium or Stainless Steel.
The switch to donor Bone Screw transplant instead over time join with existing bone and would be invisible in an x-ray after one year.
Individuals "with Bilateral (left and right) Vestibular Failure (BVF) suffer from postural and gait unsteadiness with an increased risk of falls."
A study was done to find the "role of otolith, semicircular canal (SSC), visual, proprioceptive, and cognitive influences on the postural stability of BVF patients." Posturography tests were done to monitor: target visibility; tonic head positions in the pitch plane; horizontal head shaking; sensory deprivation; dual task; and tandem stance.
"Diagnosis of BVF patients is often missed possibly because postural control in BVF at baseline is indistinguishable from healthy controls (HC) once the visual and proprioceptive input is provided. BVF patients show a stronger visual dependency (increase in Romberg's ratio). The best postural predictor for BVF is the condition with standing on foam with the eyes closed. Accordingly, our data suggest that BVF should be tested with the eyes closed while standing on foam (mattress test). The strong dependency of postural control in BVF on proprioceptive and visual cues should be taken into consideration in vestibular rehabilitation."
During MRI scans at mid-point a contrast agent, a Gadolinium-based substance is injected for clear imaging. Gadolinium has been found to result in different possible side effects with each use.
While we wait for a new contrast agent that may prove to be safer for the body than Gadolinium, iMed Journals shared a paper that discusses alternate imaging options without contrast of alternate imaging options of multi-slice EPI-based pCASL when an individual can no longer have imaging scans with 'Dynamic Susceptibility Contrast imaging (DSC).
The report includes imaging differences between the scan types and they agree more research is needed.
Recommendation; review the report for imaging differences.
BOTOX® (OnabotulinumtoxinA) also known as Botulinum Toxin Type A is a Botulinum toxin produced by Clostridium Botulinum Bacteria.
Issue: Wrinkled Forehead Only on the side of No Paralysis
Facial Paralysis results in an inability to show expression on the side of the face an individual has Facial Paralysis. Talk to your doctor.
"Very serious problems can happen if the botulinum toxin spreads from where it was injected. It may cause dangerous issues like; swallowing or breathing problems. These problems can happen hours to weeks after the injection and can cause death. The risk is greatest in children who are being treated for muscle spasticity in their necks. But adults who already have swallowing or breathing problems are also at risk for problems from a Botox injection." [WebMD, BOTOX]
Other reasons for possible swallowing issue include tumor growth on the; lower branch of Trigeminal Nerve (Cranial Nerve 5 the Mandibular branch), or 2) Vagus Nerve (Cranial Nerve 10). A tumor on the Vagus Nerve could also result in breathing issues.
"Tinnitus, a chronic ringing or buzzing in the ears, has eluded medical treatment and scientific understanding. A new study found that chronic tinnitus is associated with changes in certain networks in the brain, and furthermore, those changes cause the brain to stay more at attention and less at rest. The finding provides patients with validation of their experiences and hope for future treatment options."
High doses of THC in Cannabis products have been found to cause either a coma or induce seizures in children. Questions we should ask:
There have been cases of Comas and Seizures seen in Emergency Rooms. Accidental consumption of Cannabis products by children has occurred. The children were not aware or did not know what they are eating. This is the reason edible versions are now required to include suggested limits in the United States, in Colorado.
If you are using Cannabis for medicinal reasons, you may want to talk to your doctor about using CBD Hemp Oil which includes only trace amounts of THC and is non-psychoactive.
If you have NF2, even if you can't walk well, keep moving - It may help your Body and Memory.
In mice, Research Developments suggest, yet again, running and other forms of exercise, while the brain is young or in development, can help with improved memory later in life; this could also mean the brain while in the expansion, or a developmental Neuroplasticity stage that typically slows down after childhood.
Individuals with NF2 often have a high Neuroplasticity rate, which can allow brain development to extend into adulthood as a result of; adaption of the brain to tumor growth, loss of senses (hearing/vision). Loss of hearing results in need to learn lip reading (speech reading), the adaption of the brain to hearing implants, or sign language. Later in life education of a new language can alone result in brain development.
It seems likely the exercise may help the Neuroplasticity chances for recovery from memory issues tumors in another part of the brain could cause.
Researchers at The Ohio State University (OSU) Wexner Medical Center and Ohio State's College of Engineering have developed a new technology, Tissue Nanotransfection (TNT). TNT can heal with a single touch, and even repair brain injuries, repair injured tissue or restore the function of aging tissue, including organs, blood vessels, and nerve cells.
It can generate any cell type of interest for treatment within the patient's own body. TNT "injects genetic code into skin cells, turning those skin cells into other types of cells required for treating diseased conditions."
Would this new technology help or hurt a person with NF2 who have missing tumor suppressor function, by instead resulting in tumor cell growth instead of healing damage?
OSU has already started planning human trials to understand this better before it will be publicly available.Sources:
Follow-up on the Tumor Drug Trial: BXCL101 (Bortezomib™) by BioXcel Therapeutics, Millennium Pharmaceuticals mentioned the at the end of 2016, for believed potential treatment of Schwannoma and Meningioma.
Things you may want to know, side effects and more: https://www.nf2is.org/bxcl101.php
People with Neurofibromatosis Type 2 (NF2) tend to develop balance issues as a result of:
Different things can be done to recover and compensate for balance loss. VS tumors and Vestibular damage are not always the result of the condition NF2. Regardless of the reason of the damage, this damage always requires Vestibular Rehabilitation Therapy (VRT), since VS damage from NF2 makes less than five percent (5%) of the population who develop these tumors, proper physical therapy for this should be easily accessible. Talk to your doctor.
"Current evidence is in support of VRT for treating patients with a variety of vestibular disorders, both central and peripheral. High-level evidence studies support the use of treatment techniques of adaptation and substitution for gaze stabilization, habituation, balance and gait training, and can with repositioning maneuvers. Recent evidence has also examined and found promising results with technological innovations that are targeted at those with bilateral vestibular hypofunction and insufficient gains with a standard exercise-based program. Nevertheless, factors such as anxiety overlay/depression, time when beginning therapy, and adherence may have an impact on how a patient will do with his/her VRT program and should be acknowledged." [Burzynski, 2017]
For individuals with a Schwannoma tumor, brain nerve tumor, there could be more tumor masses than you know of, especially individuals diagnosed with Neurofibromatosis Type 2 (NF2). Because of this, tooth pain may not be a tooth issue but a Schwannoma issue.
Mention tumors as a possible reason for the pain to your dentist before having a root canal or removing teeth, neither of which will stop the pain if it is Schwannoma on lower portion of Cranial Nerve 5 (CN V), on the Mandibular Nerve branch of the Trigeminal Nerve. Removal of teeth because of CN5 damage has occurred more than once.
This was a case share by a Dental Team of this with pain but the result of Trigeminal Neuralgia pain from Trigeminal Nerve damage in a recent patent visit.
To date, the traditional approach to intraspinal tumors has been open Laminectomy or Laminoplasty, a surgical procedure that removes one or more portions of the vertebral bone, followed by microsurgical tumor resection. Recently, however, the report simply notes the use of Minimally Invasive Surgical (MIS) approaches attempted by some doctors with good results.
Ninety-three percent (93%) of patients were ambulatory and able to work at the time of follow-up.
Tumor masses removed included; forty-nine (49) Schwannomas, eighteen (18) Meningiomas, ten (10) Ependymomas, two (2) Hemangioblastomas, one (1) Neurofibroma, one (1) Paraganglioma, one (1) Epidermoid Cyst, and one (1) Hemangiopericytoma.
During an MRI/MRA test to enhance what the scans show an injection of a Gadolinium-based agent is necessary. There are known possible side effects of these agents that could range from mild discomfort during and for a few hours after the injection, but with repeated injections over time can result in kidney problems including possible Renal Failure (Kidney Failure).
In 2016, researchers confirmed a new contrast agent of Iron Oxide Nanoparticles could potentially replace the Gadolinium-based agents for MRI/MRA contrasts. Recently related information of trials with Iron Oxide Nanoparticles in animals including; rabbits, dogs, and macaque monkeys have so far proven it is as safer than Gadolinium.
It has also shown it can distinguish differences from; air, hemorrhage (Strokes), calcification, metal deposition, and blood clots, some of which required CT Scans with ionizing radiation, a scan type that alone could result in tumor growth.
Kidney problems are also a possible result of drug-tumor treatments, making this an important development for individuals with tumors.
Due to the magnets used for the imaging, facilities clearly state no metal is allowed to be on an individual walking into the room of an MRI. Some fabric includes silver or metal fibers, which might be seen on clothing labeled as Anti-Microbial.
Melatonin skyrockets when blue light is blocked.
Blue light emitted from digital devices could contribute to the high prevalence of reported sleep dysfunction, suggests new research.
Researchers in Portland, Oregon have, for the first time, edited a human embryo in the US.
This work adds to the promise of CRISPR (gene editing), and it stands as an important step toward the birth of the first genetically modified humans.
It is uncommon for Tumor Drug Treatments (an example would be Avastin™) to result in Early-Menopause (Premature Ovarian Failure (POF)). When taken only up to six months which is the duration of use for Cancers, and why most of the treatments note POF as unlikely, whereas Neurofibromatosis (NF) duration of treatment may be years.
The six-month drug treatments commonly result in delayed or extended cycle intervals, but when taken longer can result in POF. It is wise to consider freezing eggs and starting birth control before starting a Tumor Drug Treatment if there is a chance you need to stay on the treatment over six (6) months as is the case with individuals with Neurofibromatosis (NF).
While there is an argument, birth control may result in tumor growth, when on a Tumor Drug Treatment it can help regulate the menstrual cycle to lower risk of POF. Tests to monitor health included in the source.
Talk to your doctors.
How safe is the water in your state? - Link included for listing state to state.
While water comes out of your sink or shower may look clean, a new report released Wednesday might suggest otherwise. A report from the Environmental Working Group (EWG) tracked 93 contaminants across the state's fresh water supply, and found 11 harmful contaminants in drinking water.
Cataracts is an issue for the general population after the age of sixty-five (65), but somewhere between sixty percent to eighty percent (60% - 80%) of individuals with NF2 develop Juvenal Cataracts at or shortly after birth.
"Dogs may have a topical treatment for cataracts soon. "We just completed a clinical trial and found an eighty-five percent (85%) reduction in cataract formation in diabetic dogs," said Peter F. Kador, Ph.D., an NEI-funded researcher at the University of Nebraska Medical Center. Diabetes is a risk factor for cataract in both dogs and humans. The drug he developed prevents cataract formation by stopping a metabolic reaction in lens epithelial and fiber cells. Kador believes the drug may work in humans."
NEI points to a treatment named Kinostat®, but there appears to there may be more than one eye drop and possible non-surgical option for Cataracts. Talk to your doctor.
"From 2000 to 2012, there were 274,998 dietary supplement exposures reported to poison control centers across the US: one call every 24 minutes, on average. " This is an increased rate of 50% from previous years.
While source focus is a concern for children, under the age of six (6), which accidentally consumed dietary supplements of parents, adverse side effects were also a reported issue with older children and adults.
Dr. Henry Spiller comments on his report, "Because Supplements are not medicines prescribed by the doctor, people think of them as natural, but they need to be treated as if they were medicine. Because the FDA does not regulate dietary supplements, there are no robust studies done to ensure that they are efficacious or have a reliable safety profile. We're often going down a path of unknowns, and for possibly no benefit at all. We don't know if there's a benefit to taking any of these supplements, because of the lack of studies. People need to be aware of that."
"Just because it's a natural supplement doesn't mean it's safe," he said. "I often use the example, technically, that cocaine is also natural. But that doesn't mean it's safe."
A two (2) year old girl drowned, resulting in deep gray matter injury. One-hundred percent (100%) oxygen treatment, or hyperbaric oxygen treatment (HBOT).
The October 2016 NF2 Ohio Gathering Transcripts include important topics is available in full at https://www.nf2is.org/og2016-3sections.php. There are jump points to the three (3) sections for help finding sections given the length of the document.
As of Wednesday, July 12, the Food and Drug Administration (FDA) advisers have started to encourage a first-of-its-kind cancer treatment for B-cell Acute Lymphoblastic Leukemia with Immunotherapy. This immunotherapy treatment uses patients' immune cells to fight the disease if other treatments have failed or relapsed in children or young adults between the ages of three (3) to twenty-five (25).
If cleared by the FDA, it would be the first gene therapy approved in the United States.
Overproduction of PrPC in NF2-related tumors, Mesothelioma (usually linked to exposure to asbestos), Breast Cancer, Colorectal Carcinoma, Melanoma, Glioblastoma, Prostate Cancer, Gstric Cancer, and Spontaneous Schwannomas.
American Approved Audtotry Brainstem Implants (ABI) and FDA approved brands.
Epilepsy and driving is a personal and safety issue. A person with a seizure disorder that causes lapses in consciousness may be putting the public at risk from their operation of a motor vehicle. Laws have been enacted all over the world regarding driving for people with epilepsy.
In every state in the United States, it is illegal to drive for an individual having seizures, and duration of last seizure incident may allow the ability to drive again, six months to two years depending on the state.
However, town accessibility options of personal bus services, deductions of cost for; public bus, train or subways can help allow for accessibility options. Contact your local town hall for options and additional information.
The same transportation options apply to individuals who are legally blind or deaf.
Individuals with NF2 may only have issues with Epilepsy for a few two to five years.
You might want to tell your doctors you need alternative painkillers to Opiates, particularly if the already prescribed Opiates are not killing pain despite increases in dose.
"At high doses, Opioid Painkillers actually seem to amplify pain by changing signaling in the central nervous system, making the body generally more sensitive to painful stimuli."
A new study has found that the use of acupuncture in emergency departments is a safe and effective alternative to pain-relieving drugs for some patients.
Also read about NF2 and Sulforaphane for Vestibular Schwannoma (VS) / on NF2 Information and Services Drug-Trial listing.
"Tumors in the donor: what is the risk? Cancer can be transmiRed by organ transplantation"
We need to ask what could this mean for people with NF who are considering listing themselves as organ or blood doners.
Puppy Training Supervisor Questionnaire (PTSQ) is a new method to help successfully select puppies that would make good guide dogs.
Additional sources and information about Pembrolizumab hera on NF2 Information and Services. Includes a list of conditions Pembrolizumab is in trial for.
With the release of a new tumor drug treatment Pembrolizumab (Keytruda) quickly passed by the FDA for some Cancers; cancer of the pancreas, prostate, uterus, or bone and currently in trial for Neurofibromatosis Type 1.
"Surgical resection being the most successful approach for meningomas is not always possible pertaining to its inapproachable locations of tumors. Radiation therapy is sometimes restricted by neurotoxicity and tumor size, while chemotherapy regimens have been minimally effective as treatment option in meningiomas. Therefore, treatment of the remaining subset of aggressive, unapproachable or refractory meningiomas remains challenging. This makes it a topic of concern to explore more strategies for its management."
"Recent practices have shown increased interests in the utilization if monoclonal antibodies. Among the most prospective are TRAIL therapy followed by antibodies targeting receptors such as PDGFR, EDGF, VEGFR, PD-1. These therapies can be utilized to reduce the stability of meningiomas. There is a need for initiation of large scale Randomized controlled trials to improve outcomes in meningioma patients and formation of a more productive management strategy. "
"The Food and Drug Administration on Thursday asked a drug company to remove its opioid pain medication from the market, the first time the agency has made such a request because of the public health consequences of abuse."
"The agency concluded after an extensive review of Endo Pharmaceuticals' Opana ER that the "benefits of the drug may no longer outweigh its risks." The company reformulated the drug in 2012 to make it more difficult to snort, but the FDA said that move actually led to more injections - and a major HIV outbreak."