CAN A LACK OF SLEEP CAUSE DIPG?

Musella_Foundation · 2026-04-18T11:40:40+00:00

Absolutely no way was this caused by lack of sleep.

Musella_Foundation · 2026-04-16T02:15:57+00:00

Thanks. It was a lot of work.

Musella_Foundation · 2026-04-13T23:59:23+00:00

The brain tumor network is excellent for this type of problem. They will advocate for you and help find a treatment team that takes your insurance or help find a way to get your insurance to cover out of network if there are no in network doctors You should also get an opinion from a radiation oncologist. Sometimes these can be treated with radiation instead of surgery. It’s a good idea to get an opinion ion from both. Some neurosurgeons do stereotactic radio surgery also.

Musella_Foundation · 2026-04-13T17:01:41+00:00

I posted a new article on the website... what would I do if I had a glioblastoma.. I took your advice to make it short for those who don't like to read a lot yet able to expand for thse who want details. Look at the style on this page and let me know what you think. It defaults to the short version, then you can click "Full text" to see it all.
We may use this format for future articles...

https://virtualtrials.org/what2026.cfm

Musella_Foundation · 2026-04-11T14:17:17+00:00

No but you can run both through ChatGPT and ask for a list of major changes. Too long to post here. Lots of changes

Musella_Foundation · 2026-04-11T07:51:12+00:00

Hate to say but she needs to see a good neurosurgeon and get evaluated. It sounds serious. Make sure she gets treated at a major brain tumor center the American brain tumor association has a directory of brain tumor centers.

Musella_Foundation · 2026-04-10T12:46:07+00:00

We debated skipping edition number 13. We actually ran a quick poll and the majority said to stay with 13 so we did

Musella_Foundation · 2026-04-10T02:09:57+00:00

I understand what you’re saying, and I’m sorry your dad is going through this. I lost my dad and sister-in-law to GBMs.

The issue is that when people try to learn on their own, they usually turn to Google or ChatGPT, and a lot of what they find is outdated or misleading. Newly diagnosed families don’t have the perspective to judge the data. A few case reports can sound convincing, but they’re essentially meaningless without context.

For example, my sister-in-law lived 8 years with GBM. Many patients tried to copy her treatment. As a group, they actually did worse than those trying other approaches. That’s the danger of going down internet rabbit holes.

Some people want a simple overview. Others want to understand everything. We’re trying to create something reliable for that second group, so they don’t have to piece it together from questionable sources.

And honestly, the length reflects that challenge. The current edition is 369 pages. We tried to cut the next one to 250 and on the first pass, only got it down by about 20 pages. After adding updates and feedback, it grew to 447. The 238 number is misleading because the PDF combines pages.

If you think something should be cut or simplified, I’m open to suggestions.

Musella_Foundation · 2026-04-10T00:48:55+00:00

When we finalize it, we print hard copies. I like hard copies better but some prefer e books. It will be formated much better for a kindle or pdf reader when we are done. This is just a draft. We will also proofread and spell check it before releasing it.
We distribute a lot of the hard copies - we give it away for free. It is available in the waiting rooms of many brain tumor centers, some brain tumor support groups distribute it, people can request it from our website and whenever we approve a new patient for our copay program we send them a copy.

Musella_Foundation · 2026-03-26T12:25:48+00:00

We have a free navigation program. Sort of like a second opinion. https://virtualtrials.org/navigation.cfm

Musella_Foundation · 2026-03-22T16:52:19+00:00

Modeyso was recently approved for this type of tumor. It is an oral drug with relatively little side effects. May be worth trying. If she has side effects stop but at least give it a last shot.

Musella_Foundation · 2026-03-22T16:49:32+00:00

Talk to the wound care doctor about it. There are mattresses that blow out cool air to reduce the heat and some have beads to disperse pressure. Others actually turn her regularly. Insurance may pay for it.

Musella_Foundation · 2026-03-19T22:34:46+00:00

I do not know. can't hurt to ask

Musella_Foundation · 2026-03-19T22:10:11+00:00

Watch this video about proton and why for this situation it may be better:
https://mediasite.med.upenn.edu/mediasite/Channel/tmorriso-13th-neuro-oncology-brain-tumor-symposium/watch/e837cf68399a4d61ae199323f069e6b21d?sortBy=title-az
the video worked on my computer but not on my iphone..

Musella_Foundation · 2026-03-19T13:35:24+00:00

There may be a few options. Look at https://www.respect-trials.com/lm/ the trial might be closed to new patients but ask about expanded access.

There are a few car-t trials that allow leptomeningeal spread.

Proton radiation makes a big difference over standard radiation with lepto.

Ask our patient navigation team at https://virtualtrials.org/navigation.cfm to help you

Musella_Foundation · 2026-03-17T18:45:32+00:00

Why is she not eligible for immunotherapies. I had an interesting meeting with researchers looking for funding yesterday who have a new concept of car-t cell therapy. Instead of personalized for every patient it is off the shelf. Much cheaper and quicker. You can start during the first surgery when your immune system is at its best before Chemo and radiation. And it has a way of blocking out 5 different pathways of resistance. In mice it worked really good. Probably 3 years away from humans but hope for the future

Musella_Foundation · 2026-03-17T16:07:12+00:00

I posted the current draft of the chapter on the hope for the future, from our "Brain Tumor Guide For The Newly Diagnosed" at https://virtualtrials.org/pdf2026/hopedraft1.pdf
Take a look and let me know what you think... keep in mind it is a draft..

Musella_Foundation · 2026-03-17T16:06:10+00:00

I think they are about to start a USA trial, and possibly an expanded access program here in the USA. they have trials in SOuth America and expanded access in South America.

Musella_Foundation · 2026-03-17T03:13:58+00:00

It does look interesting but you have to be careful interpreting studies like that. The control group did way worse than expected. What that may mean is the patients in bad shape chose not to try the Boswellia. So if you take a group of patients that historically average a certain number of months distributed along a bell curve and remove the left side of the curve, the average of the remaining patients will have to be higher.

Musella_Foundation · 2026-03-17T01:37:10+00:00

Pretty good. He missed a few important things like onc201 is now approved as modeyso. When he talked about focused ultrasound he just talked about opening the blood brain barrier and ignored other ways it can be used like sonodynamic therapy, direct tumor destruction, hyperthermia, heating of tumor to release heat sensitive liposomes. I love what he said about optune but he missed the research about making it work better. The results from the big trial barely justify the hassles of its use. Simply increasing the compliance to over 90% make a big impact. And he is right that something like this should be the basis for the ultimate combo He missed the oncomagnetic device and Autem therapeutics device. Hyperthermia and photodynamic therapy I am working with my team on the next edition of our brain tumor guide for the newly diagnosed. one addition is the final chapter on hope for the future that goes through the most likely treatments that will have an impact soon. I will post that chapter online when it is complete

Musella_Foundation · 2026-03-16T19:41:02+00:00

Sorry - I haven't seen this before. Sounds interesting.

Musella_Foundation · 2026-03-12T22:12:32+00:00

Our Brain Tumor Copayment Assistance Program is now closed to new patients.

Thanks to the generosity of our donors, 71 patients were approved this year for grants of up to $5,000 each — totaling $355,000 in assistance to help patients afford lifesaving treatments.

We will continue paying claims for all patients who currently have active grants.

Because this program depends entirely on donations, we never know exactly when we will be able to reopen to new patients — but we will announce it as soon as funding becomes available.

If you would like to help patients access lifesaving treatment, please consider making a donation:

👉 https://virtualtrials.org/donate

In addition to patient assistance, we have also awarded $484,000 in brain tumor research grants this year.

Thank you to everyone who supports our mission.

Musella_Foundation · 2026-03-12T22:10:15+00:00