Table of ContentsView AllTable of ContentsLifestyleOTC MedicationsPrescriptionsSurgeries and ProceduresComplementaryNext in Von Hippel-Lindau GuideLiving With Von Hippel-Lindau Disease
Table of ContentsView All
View All
Table of Contents
Lifestyle
OTC Medications
Prescriptions
Surgeries and Procedures
Complementary
Next in Von Hippel-Lindau Guide
Although there is no cure forVon Hippel-Lindau(VHL) disease, the symptoms it causes can be treated. Often, the most common treatment is surgery to remove the cyst or tumor causing the problem. If the tumor is cancerous, medications such as chemotherapy, immunotherapy, or targeted therapy may also need to be given.
Treatment of Von Hipple-Lindau disease often requires a team of specialists, including those in urology, neurosurgery, neurology, ophthalmology, endocrinology, pediatrics, and medical oncology This article will review the treatment options forsomeone with von Hippel-Lindau disease.
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Home Remedies and Lifestyle
There aren’t any home remedies that will treat VHL or the tumors that it causes. However, maintaining a healthy lifestyle can be helpful. Lifestyle factors that can be important for overall health in someone with VHL include:
Over-the-Counter (OTC) Therapies
There are no over-the-counter treatments for VHL. However, discuss any OTC medications or supplements with your healthcare team. Some may interact with medications given for VHL.
In 2021, the first prescription medication called Welireg (belzutifan) was approved for adults with VHL who have hemangioblastomas in the brain, pancreatic neuroendocrine tumors, or renal cell carcinoma. It can be used when treatment is needed for these tumors, but they don’t require immediate surgery.
In people with neuroendocrine tumors of the pancreas, treatment may require medications, including:
For people with renal cell carcinoma, treatment can include:
Surgeries and Specialist-Driven Procedures
Routine imaging is a standard practice for those with VHL. Routine imaging withcomputed tomography(CT) scans ormagnetic resonance imaging(MRI) can be helpful to find tumors when they are small and may be treated before they cause significant problems.
For brain or spinal cord hemangioblastomas or cysts, surgical removal of the entire lesion may be required. For cysts, which are filled with fluid, it is important for the surgeon to remove the entire cyst, as it can fill with fluid again if any of the cyst is left behind.
Another potential treatment for these tumors is called stereotactic radiation, in which precise beams of radiation are delivered to the tumors to damage the DNA in the cells instead of removing them surgically.
For renal cell carcinoma, either part of the kidney or the entire kidney may need to be removed surgically. Localized treatment, such ascryoablationor radiofrequency ablation may be done when kidney tumors are small.
During cryoablation, special equipment is used to freeze the tumor to kill the cells. During radiofrequency ablation, a similar procedure is used to burn the cancer cells.
Surgery is often required for the hormone-producing pheochromocytomas on the adrenal glands, even if they aren’t causing any symptoms.
Those with endolymphatic sac tumors in the inner ear must undergo surgical removal of the tumors to prevent hearing loss. These tumors can also cause balance problems and surgical removal of the tumor can prevent balance from getting worse.
Complementary and Alternative Medicine (CAM)
No complementary or alternative medicine practices have been proven to treat VHL. Before using any CAM, discuss it with your healthcare team. Some CAM treatments may interact with medications and procedures you are undergoing.
Summary
VHL is a genetic disorder that doesn’t have a cure. It requires routine imaging of the body to evaluate for the presence of tumors.
Maintaining a healthy lifestyle through a nutritious diet and exercise and refraining from smoking are important for overall health for those with VHL.
A Word From Verywell
It is also important to notify your healthcare team of any new symptoms that develop, and let them know of any concerns you have.
7 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.National Organization for Rare Disorders.Von Hippel-Lindau disease.American Society for Clinical Oncology.Kidney cancer: risk factors and prevention.LoConte NK, Gershenwald JE, Thomson CA, Crane TE, Harmon GE, Rechis R.Lifestyle modifications and policy implications for primary and secondary cancer prevention: diet, exercise, sun safety, and alcohol reduction.American Society of Clinical Oncology Educational Book. 2018;(38):88-100. doi:10.1200/EDBK_200093de la Torre BG, Albericio F.The Pharmaceutical industry in 2021. An analysis of FDA drug approvals from the perspective of molecules.Molecules. 2022;27(3):1075. doi:10.3390/molecules27031075Food and Drug Administration.Welireg label.National Comprehensive Cancer Network.NCCN guidelines for patients: neuroendocrine tumors.National Comprehensive Cancer Network.NCCN guidelines for patients: kidney cancer.
7 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.National Organization for Rare Disorders.Von Hippel-Lindau disease.American Society for Clinical Oncology.Kidney cancer: risk factors and prevention.LoConte NK, Gershenwald JE, Thomson CA, Crane TE, Harmon GE, Rechis R.Lifestyle modifications and policy implications for primary and secondary cancer prevention: diet, exercise, sun safety, and alcohol reduction.American Society of Clinical Oncology Educational Book. 2018;(38):88-100. doi:10.1200/EDBK_200093de la Torre BG, Albericio F.The Pharmaceutical industry in 2021. An analysis of FDA drug approvals from the perspective of molecules.Molecules. 2022;27(3):1075. doi:10.3390/molecules27031075Food and Drug Administration.Welireg label.National Comprehensive Cancer Network.NCCN guidelines for patients: neuroendocrine tumors.National Comprehensive Cancer Network.NCCN guidelines for patients: kidney cancer.
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
National Organization for Rare Disorders.Von Hippel-Lindau disease.American Society for Clinical Oncology.Kidney cancer: risk factors and prevention.LoConte NK, Gershenwald JE, Thomson CA, Crane TE, Harmon GE, Rechis R.Lifestyle modifications and policy implications for primary and secondary cancer prevention: diet, exercise, sun safety, and alcohol reduction.American Society of Clinical Oncology Educational Book. 2018;(38):88-100. doi:10.1200/EDBK_200093de la Torre BG, Albericio F.The Pharmaceutical industry in 2021. An analysis of FDA drug approvals from the perspective of molecules.Molecules. 2022;27(3):1075. doi:10.3390/molecules27031075Food and Drug Administration.Welireg label.National Comprehensive Cancer Network.NCCN guidelines for patients: neuroendocrine tumors.National Comprehensive Cancer Network.NCCN guidelines for patients: kidney cancer.
National Organization for Rare Disorders.Von Hippel-Lindau disease.
American Society for Clinical Oncology.Kidney cancer: risk factors and prevention.
LoConte NK, Gershenwald JE, Thomson CA, Crane TE, Harmon GE, Rechis R.Lifestyle modifications and policy implications for primary and secondary cancer prevention: diet, exercise, sun safety, and alcohol reduction.American Society of Clinical Oncology Educational Book. 2018;(38):88-100. doi:10.1200/EDBK_200093
de la Torre BG, Albericio F.The Pharmaceutical industry in 2021. An analysis of FDA drug approvals from the perspective of molecules.Molecules. 2022;27(3):1075. doi:10.3390/molecules27031075
Food and Drug Administration.Welireg label.
National Comprehensive Cancer Network.NCCN guidelines for patients: neuroendocrine tumors.
National Comprehensive Cancer Network.NCCN guidelines for patients: kidney cancer.
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