Share4Rare is born, the first social media network to connect patients, caregivers and researchers of rare diseases around the globe. Nace la primera red de enfermedades raras.

Nace la primera red social europea que conecta pacientes, cuidadores e investigadores de enfermedades raras de todo el mundo

Sant Joan de Déu lidera el proyecto Share4Rare que pretende poner en contacto a las familias, empoderarlas y recopilar datos para avanzar en la investigación de las enfermedades minoritarias

Las enfermedades raras son un conjunto de alrededor 8.000 patologías diferentes que afectan a unos 30 millones de personas sólo en Europa (el 80% son niños). Actualmente sólo se tiene una base de conocimiento científico sólida sobre un 10% de estas enfermedades. Para profundizar en el conocimiento del 90% restante, la Comisión Europea ha financiado un proyecto que lidera el Institut de Recerca Sant Joan de Déu – Hospital Sant Joan de Déu Barcelona y que tiene como objetivo ofrecer un lugar de encuentro virtual y seguro a familias de personas con enfermedades raras de todo el mundo y aglutinar información relevante para avanzar en la investigación de estas patologías.

Share4Rare is born, the first social media network to connect patients, caregivers and researchers of rare diseases around the globe.

Sant Joan de Déu Research Foundation of Barcelona leads this European project that aims to connect and empower families living with rare diseases, and collect data to advance research.

Rare diseases are a set of around 8,000 different conditions that affect approximately 30 million people in Europe alone (80% are children). Surprisingly, only about 10% of these diseases have a solid scientific knowledge base. To deepen the knowledge of the remaining 90%, the European Commission has financed a project to address this problem, led by the Sant Joan de Déu Research Foundation in Barcelona. Share4Rare will offer a virtual and safe meeting place to patients and families affected by rare diseases all over the world and it will collect relevant information to advance in the research of these conditions.

https://www.sjdhospitalbarcelona.org/en/share4rare-born-first-social-media-network-connect-patients-caregivers-and-researchers-rare-diseases

https://www.sjdhospitalbarcelona.org/es/nace-primera-red-social-europea-que-conecta-pacientes-cuidadores-e-investigadores-enfermedades-raras

Bevacizumab, irinotecan, temozolomide, tyrosine kinase inhibition, and MEK inhibition are effective against pleomorphic xanthoastrocytoma regardless of V600E status.

Thompson EM1,2,3, Landi D4,5,6, Ashley D4,5, Keir ST4,5, Bigner D4,5.

Author information

Abstract

INTRODUCTION:

Pleomorphic xanthoastrocytoma (PXA) is a rare Grade II and III glioma. Surgical resection is the mainstay of treatment, however, adjuvant therapy is sometimes necessary. Given the rarity of PXA, chemotherapeutic efficacy data is limited. The importance of the BRAF V600E mutation in the context of MAP kinase pathway inhibition is unknown. The purpose of this study was to perform an in vivo screen of a variety to agents to determine efficacy against both V600E mutant and non-mutant PXA.

METHODS:

The efficacy of bevacizumab, temozolomide, lomustine (CCNU), irinotecan (CPT 11), a tyrosine kinase inhibitor (sorafenib), a selective MEK1/2 inhibitor (cobimetinib), and a BRAF inhibitor (vemurafenib) were assessed in two subcutaneous xenografts: D645 PXA (V600E-mutant) and D2363 PXA (V600E-non-mutant) (n = 5-10 mice). Select agents were also assessed in an intracranial model of D2363 PXA (n = 6-9). Subcutaneous tumor growth and survival were the endpoints.

RESULTS:

Temozolomide, bevacizumab, CPT 11, and sorafenib significantly inhibited subcutaneous tumor growth in both V600E-mutant and V600E-non-mutant models (P < 0.05). MEK inhibition (cobimetinib) but not BRAF inhibition (vemurafenib) also inhibited tumor growth regardless of V600E mutation (P < 0.05). Temozolomide, CPT 11, and bevacizumab also prolonged survival in a V600E-non-mutant intracranial model (median overall survival (OS) 68.5, 62.5, and 42.5 days, respectively) in contrast to controls (31.5 days, P < 0.001).

CONCLUSIONS:

These findings suggest that when adjuvant treatment is clinically indicated for PXA, temozolomide, CPT 11, or bevacizumab may be considered. Additionally, a trial of a MEK inhibitor or tyrosine kinase inhibitor could be considered for PXA regardless of V600E mutation status.

KEYWORDS:

BRAF; Bevacizumab; MEK inhibitor; Pleomorphic xanthoastrocytoma; Temozolomide; Tyrosine kinase inhibitor

PMID:

30120661

DOI:

10.1007/s11060-018-2975-5

https://www.ncbi.nlm.nih.gov/pubmed/30120661

Temozolomide (TMZ), cannabis (CBD) and xanthoastrocytoma. Temozolamida y cannabis en tratamiento del xantoastrocitoma.

There are research trials where you work with temozolamide and cannabinoids. I show some information.

Actualmente se están llevando acabo algunos ensayos en donde además de la quimioterapia temodal (radiación y operaciones quirúrgicas) se utilizan derivados del cannabis. A continuación muestro algunas líneas sobre esto:

In the chat of the Mayo Clinic:

https://connect.mayoclinic.org/discussion/pxa-help/?pg=7#comment-285099

"... She has been taking Temozolomide (TMZ) together with cannabis extracts (Sativex and CBD oil) for the last 4-5 months and in her last scan we finally had some better news – her tumour has reduced. We are not getting carried away but it was lovely to hear something positive after the incessant negatives and stressparticularly over the last year or so. Her next scan is now planned for 3 months which will hopefully give us some breathing space. FYI in the 28 day TMZ cycle she has a week or so at the start where she feels very tired, and tummy troubles can arise, but the rest of the time she feels pretty good so overall it's ok. Also FYI she was put on steroids for 3-4 months, as a precaution against swelling/pressure effects in her head, but has now come off them. The steroids caused her body to swell, for example she got a much rounder face, and clothes became tight fitting. But she has now migrated off these and is hopefully returning to normal. But, it's worth noting that during the phased withdrawal from steroids she had fairly bad headaches, so if you or yours are suggested to go on these, or are on and need to come off, be advised of this possibility..."  

TN-TC11G (THC+CBD) Combination With Temozolomide and Radiotherapy in Patients... 

https://clinicaltrials.gov/ct2/show/NCT03529448

"...Δ9-tetrahydrocannabinol (THC) and cannabidiol (CBD) have shown a clear synergistic antitumour effect with temozolomide and radiotherapy in preclinical glioma models. THC and CBD have a wide variety of biological effects by binding with and activating the type 1 and type 2 cannabinoid receptors (CB1 expressed in certain neuronal areas of the brain and CB2 expressed in the immune system and in glial cells). The activation of these receptors initiates a signalling pathway, called the endoplasmic reticulum stress response, which generates tumour cell autophagy by activating TRB3.

Given these data, the Spanish Group for Neuro-oncology (GEINO) proposes developing a phase Ib, open-label, multicenter, intrapatient dose-escalation clinical trial to assess the safety profile of the THC+CBD combination at a 1:1 ratio, adding temozolomide and radiotherapy in patients with newly-diagnosed glioblastoma..."

Brain Tumor Awareness Month. Mayo es el mes de concienciación de los tumores cerebrales. Frankly speaking about cancer brain tumors

Con el hastag #BrainTumorAwarenessMonth se introduce un movimiento en las redes para aumentar la conciencia sobre los tumores cerebrales y tomar medidas para la prevención. Las comunidades, las organizaciones, las familias y los individuos pueden involucrarse y difundirlo.

En este enlace podéis encontrar más información:
https://braintumor.org/take-action/btam2019/

Brain tumors can strike anyone – they don’t discriminate by heritage, age, gender, or where you live. Many individuals diagnosed with brain tumors are historically healthy, vibrant people. Brain tumors can cause physical, emotional, and cognitive problems that will change your life forever. And patients with the most aggressive glioblastoma tumors have a 5.6% chance of living 5 years or more. Kids with DIPG may live for the length of an average school year.

NBTS unrelentingly invests in, mobilizes, and unites our community to discover a cure, deliver effective treatments, and advocate for patients and care partners.
Join us and take action today:
Use #BTAM in your social media posts. Be sure to follow us on Facebook, Twitter, and Instagram
Become a public policy advocate, and work align yourself with more than 38,000 NBTS advocates across the country in giving brain tumor patients a voice in Congress. It’s EASY!
Volunteer at an NBTS fundraising event to help participants have an amazing experience
Register your own Team at your closest NBTS Brain Tumor Walk, Ride, Race, or Freeze . Check out the entire list of events in your area HERE
Create your own community event in your town, city, state – and raise money for brain tumor research
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Download these #BTAM graphics and share them with your social media network
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Read and share our blog with your networks, friends, and family
If possible, join a clinical trial. Use our Clinical Trial Finder to find brain tumor trials in your area
Learn about our groundbreaking research
Share Your Story

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En el siguiente enlace se puede obtener una guía para informarse de forma general sobre los tumores cerebrales:

http://blog.braintumor.org/files/public-docs/frankly-speaking-about-cancer-brain-tumors.pdf