Sponsored by
Sorry about the problems yesterday - should be fixed now. We are including the articles from yesterday again here - below!
Let us know if you still have problems or any ideas for future articles!
Amazing results seen. To me, this is enough proof that the drug works, and it should be approved by the FDA so that we can find ways to make it work better. There is no reason to withhold this from the kdis, young adults and rarely adults, with DMG and brainstem glioma who need it. There is no effective treatment approved. This has minimal side effects. Why wait?
This interview of me tells a little of my story and why I do what I do. Gives a little history of the Musella Foundation. Also explains the evolution of my goal to get the Promising Pathway Act passed. I do not think people who never went through a serious illness in their family can understand the need for such a bill.
This is our annual plea for donations! We really need your help this year. I understand it was a bad year for most people so if you can't give money - you can show your support by writing the letters we request! It is simple and quick. Just go to https://virtualtrials.org/activism.cfm and follow the directions!
This is a small study but had remarkable results.1/3 of Glioblastoma patients lived at least 6 years.
This new article was just added to our Noteworthy Treatments sections. It described the reasons why GammaTile was developed.
This was a small study - 7 patients - but the results look very good!
The program opens and closes as we have funding. In the 2 weeks that we were open, we awarded $150,000 in grants to 30 patients to help them get access to treatments.
This is an article I wrote for Cancer Commons a while ago. Just updated it!
This shows why we need the Promising Pathway Act. See virtualtrials.com/activism.cfm for details about the bill and how to help. We need people all over the country to write letters but right now the biggest help would be for people in NH to contact both their senators as well as the person running for that senate seat.
This should be an interesting presentation. If we are able to figure out if a treatment is working or not much earlier than we do now, it will be a game changer and can save lives.
We got overwhelmed with calls, emails and faxes. In some cases we couldn't return all calls and emails the same day - that has never happened before. Sorry. We did get to all by the following day. But if you sent an email or left a voicemail and did not hear back yet, contact us again. If you sent a fax, wait until Tuesday then if you did not hear back, contact us. The best way to send an application is by uploading it on the website - that goes directly into our system. When you send by fax, it goes through a fax to email gateway then has to get imported into the system - adds a little time and complexity. Do not send by mail - by the time it gets to us, and we scan it and upload it, the program will probably be closed.
If you think you may need assistance paying for these covered treatments, apply. Do not feel awkward asking for help. One of our main objectives is to help reduce the stress in your life! The other one is to speed up the search for the cure!
This compassionate use program is for Glioblastoma (and any other cancer) patients who have mutations in the MAPK pathway including these mutations: KRAS, NRAS, HRAS, BRAF, MEK, and ERK, Take a look at your pathoilogy report and see if any of those mutations are present. If they are, ask your doctor about this program.
Disclaimer: I own stock in xCures and work as a paid consultant for them.
Radiation induced alopecia is hair loss due to damage from radiation therapy. This article talks about how to treat it, starting with something really easy - rubbing a cream on the skin. This resulted in complete response in 16% of people but it helped 82% of the people who tried it. If that doesn't work, there are harder things to try. So if you have a bald spot from radiation and it bothers you, go to a dermatologist and show them this article!
This is another option for patients with recurrent glioblastomas including those who already had re-irradiation. The radiation seeds were popular years ago but had the side effect of a lot of radiation necrosis so it lost favor. Now they tried it in combination with Avastin and found no radiation necrosis. This treatment is available to patients now.
From our good friends at that End Brain Cancer Initiative! Sounds like a great program.
Gleolan is finally approved in Canada. It has been standard of care in Europe for many years before it was approved in the USA 3 years ago. According to the article cited , it doubles the chance of a complete resection, and doubles the 6 month progression free survival rate. This is a dye used at the time of surgery to make it easier for the surgeon to identify where the tumor is.
This is a different technique than in our last advanced imaging webinar! Looks very interesting. Let us know if you have any ideas for topics or speakers for future webinars!
Only half of patients with a low grade glioma return to work in the first year. 5% of Glioblastoma patients are working at the 1 year point. This underscores the devastation that a diagnosis of a brain tumor - even low grade - can bring to a family. The ability to work at 1 year (at a level they worked before the tumor) should be an important endpoint for clinical trials.
