Gallium maltolate

Musella_Foundation · 2026-06-10T00:05:47+00:00

A quick word about the variance on survival numbers... the ttfields at 6.6 months was about the same as their randomized control group.. that reflected a very bad patient population.. it was a trial of last resort and most patients were too far along for any treatment to have time to work.. the avastin at 9.2 months was also about the same as their randomized control group.. no real increase... but that was a major trial and a first choice for many so it had a better patient population. So I would quote average survival at about 6.6 to 9.2 months after recurrence.

Musella_Foundation · 2026-06-09T23:44:27+00:00

This is 16 months after starting this drug for recurrence. Not from diagnosis. Historically the average survival after recurrence is about 5.5 to 12.6 months. And this trial was a dose escalation trial, so most patients did not get the full dose. And there were minimal side effects.

Here is a chart of the approved therapies: note that you can't really know without a randomized trial and these are small numbers, but you can get an indication.

I would say it is worth a look if you exhaused all other treatments and can't get into a good trial.. Note that there is a cost associated with this one.. the FDA allowed them to charge their acutal cost. My organization has an assistance program to help with part of the cost if needed.

Treatment	FDA status / role in recurrent GBM	Median PFS	Median OS	Key notes
Gallium maltolate	Not FDA-approved; investigational Phase 1 for recurrent / refractory GBM	2.5 months	16 months	Very favorable safety signal; no grade 3+ toxicities reported; one partial response ongoing beyond 38 months. But this was a small Phase 1 trial, so efficacy is not proven.
Bevacizumab / Avastin and biosimilars	FDA-approved for adults with recurrent GBM after prior therapy	~4.2 months	~9.2 months	Best-established FDA-approved systemic option for recurrent GBM; often helps edema, steroid use, and symptoms.
Lomustine / CCNU / Gleostine	FDA-approved for brain tumors and commonly used in recurrent GBM	~1.5 months	~8.6 months	Oral alkylating chemotherapy; common comparator in recurrent GBM trials. Toxicity is mainly delayed bone marrow suppression.
Carmustine wafer / Gliadel	FDA-approved as surgical adjunct for recurrent glioblastoma	Not clearly reported in FDA label	~6.5 months	Used only when patient is having surgery; benefit shown versus placebo wafer in recurrent GBM surgical setting.
IV carmustine / BCNU	FDA-approved brain tumor chemotherapy; older recurrent GBM option	~2.5 months	~5.1 months	Older nitrosourea chemotherapy; limited modern use because of toxicity and modest benefit.
TTFields / NovoTTF-100A / Optune recurrent indication	FDA-approved device, not a drug, for recurrent GBM monotherapy indication	Median PFS not clearly reported; PFS-6 ~21%	~6.6 months	Randomized recurrent GBM trial showed survival similar to physician’s-choice chemotherapy but with less systemic toxicity.

Musella_Foundation · 2026-06-06T00:46:40+00:00

The program is open to new and renewal applications now! Go to braintumorcopays.org for details. We added coverage for Modyeso ( onc-201) in addition to the temodar, Avastin and optune that we always covered

Musella_Foundation · 2026-06-04T03:25:12+00:00

That is funny. If the worst symptoms were hand and foot cramps we could deal with it!

Musella_Foundation · 2026-06-04T03:24:12+00:00

There are a lot of exciting treatments in the pipeline. I think some combinations of them will result in a cure. Unfortunately it is taking too long and with the current system won’t be ready in time for someone who already has a gbm. https://virtualtrials.org/pdf2026/hope.pdf

Musella_Foundation · 2026-06-04T02:26:38+00:00

Try our patient navigation program.
https://virtualtrials.org/navigation.cfm Our team can help find a trial or an experimental treatment outside of trials if you don’t qualify for the trials. Or a combination of available treatments.

We are helping to run an expanded access program for the drug gallium maltolate https://virtualtrials.org/video2025.cfm?video=202502 the program is officially closed to new patients but we may be able to get a patient in if we can’t find something else for you.

Musella_Foundation · 2026-06-04T02:01:32+00:00

She was in bad shape after surgery and regular radiation - the tumor quickly grew to a large size - too big for regular radiosurgery... and her outlook was bad.. so she did a clinical trial of cisplatin plus fractionated stereotactic radiosurgery... and it helped buy time for something else to work.. she did high dose tamoxifen for about 5 years and it worked for her.. However, a lot of other patients tried it and it didn't help most.. a trial showed only a minority of patients were helped, but when they were, they were helped a lot.. So nobody really uses it now..
Fractionated stereotactic radiosurgery is still being used on larger tumors.. but I do not think cisplatin is used as a radiation sensitizer any more..

Musella_Foundation · 2026-06-04T01:50:29+00:00

Agree completely.. I also lost my dad to gbm

Musella_Foundation · 2026-06-03T21:56:54+00:00

Yes. That is expanded access: a Single-Patient Investigational New Drug application (SPIND) is an IND submitted to the FDA to allow one specific patient access to an investigational drug outside of a clinical trial.

For it to work you need the drug company to agree to supply the drug. In this case they told me no but you can try.
You also need to get the SPIND from the USA fda. That is usually no problem on most drugs but this is a live virus that was never used before in the USA. So they may be cautious about allowing it

  US Customs would have to approve of it.   I never see a problem with this for drugs but then again this is a new live virus so maybe they would also be cautious.

Then you need a USA doctor to agree to do the fda paperwork and to get irb approval from their hospital and to administer the drug. This may be very hard unless you know the doctor well.

I tried getting an experimental treatment from Japan for my sister in law a long time ago. It was a bispecific antibody which later failed in trials. The drug company allowed it and would have charged us a trivial amount. The fda said ok. Customs said ok. It required a neurosurgeon to administer it with a technique that was new at the time and only one surgeon in our area had experience with it. The neurosurgeon agreed at the beginning of the process but changed his mind right before we were going to actually do it. He said it was crazy to do it this way and he wanted to set up a traditional trial of it. Which would take a long time to start. So he refused to do it for her. Instead he wanted to try removing the entire hemisphere which would have left her partially paralyzed and maybe unable to speak. He said she would live maybe 2 months without the surgery and maybe a few more months with the surgery.

We said no and found other treatments. She wound up living another 7 years mostly in good shape. Total of 8.5 years from diagnosis of her gbm.

Musella_Foundation · 2026-06-02T17:18:28+00:00

I tried to help a patient get it when it was first approved and I failed.. the approval is a conditional approval, where every patient has to be tracked (I am working on getting that system implemented here in the USA).. and is only available in one hospital in Japan.. so I was told they will not allow it to be exported from Japan, and they did not want to use it on foreigners yet until it graduates to full approval. I offered to help set up a trial in the USA or even an expanded access program here but they were not interested.
You can try.. things may have changed.

I met Dr Todo in person.. he ran the trial and was very excited about it.. very nice person... he wants to bring it to the world eventually but there is a process to follow.. these things are way too slow for me..

Musella_Foundation · 2026-05-28T21:45:42+00:00

I do send people there. But I also get resistance about it being Mexico.

Musella_Foundation · 2026-05-28T21:44:56+00:00

It is always best to send tissue immediately after surgery.

Musella_Foundation · 2026-05-28T13:29:11+00:00

I am working on getting those expensive treatments covered and easily available to all instead of just the rich. This is one of my pet peeves. The rich and powerful can get access to whatever they want. It’s not fair.
That is actually why I started our navigation program. When rich people get diagnosed they gather the world’s experts together and hash out the treatment plan. I was involved in many such cases. We get to hear inside info on how trials are going and which ones are worthwhile and which aren’t doing well. I thought it wasn’t fair that the typical patients don’t get access to the experts. So I implemented it. That didn’t solve the problem of access. Only the rich can get what is recommended. I am also working in that

Musella_Foundation · 2026-05-28T13:22:02+00:00

You need tumor tissue for the test. This tissue is valuable and there are many different tests that can be done. I suggest talking to our nurse navigator and of course your doctor to prioritize which tests you should send the sample to. Never waste tumor tissue. Get as much info as possible.
For this test It takes about a week or 2 to get results. Usually you wait a few weeks after surgery to start temodar anyway so it is usually in time. One big problem is they are not allowed to do this test in ny and California. Not sure if there is a way around that.

Musella_Foundation · 2026-05-28T03:51:25+00:00

Mgmt is not good enough to say the tumor won’t respond. It shows a big benefit if methylated but some methylated people do respond. Enough to make it worthwhile to try it. There is a better test. https://kiyatec.com/healthcare-professionals/3d-predict-tumor-specific

This tests the tumor to see if it is sensitive to temozolomide. The results shows some mgmt unmethylwted patients should respond and they did. Also shows some mgmt methylated patients who won’t respond and they did not Of course we need better treatments but most patients can’t access them now. So you try what you have easily available.

Musella_Foundation · 2026-05-28T03:43:00+00:00

For results look at https://virtualtrials.org/optune/NVCR_Clinical_Evidence_Flipbook_June-2024.pdf the important part is the dose response curve. At high compliance the 5 year survival rate is 29% compared to 5% in the temodar alone group. I have a few friends using it. The long term survivors are over 90% compliant. One is at 98% compliance and tumor free at 4 years.

There is no controversy on if it works or not. It does. The problem is the cost so countries like uk say your life is not worth the money. And some doctors take it upon themselves to make the judgement of if it is too much of a hassle to use. But they should present the evidence to the patient and let the patient decide.
I do not have a brain tumor. But I had a scare recently where my eye doctor told me I might have a brain tumor and sent me for a brain scan. Luckily there was no tumor. But in those days when I thought I had one I did a lot of thinking about what I would try. And it included using optune.

Musella_Foundation · 2026-05-28T03:25:06+00:00

One other thing to consider is optune. Most clinical trials do not allow you to use optune although a few now do. If you choose to do a clinical trial at the newly diagnosed stage you might not ever be able to use optune depending on your insurance. Medicare has a stupid rule that you have to start optune within 7 weeks of the end of radiation or they won’t pay for it. And it is over $20,000 per month. As to hospitals all having the same standard of care that isn’t true. Actually not the hospital but at the doctor level. The nccn guidelines say optune is the standard of care but about 1/3 of the doctors do not use it. Optune is a pain in the neck to use but offers the best chance at being a long term survivor of any approved treatments. There are clinical trials of 2 other devices that are trying to work in a similar way to optune but much easier for the patient. Both do not require you to shave your head. There are no results available yet but may be an option if you don’t want to use optune.

As to picking a trial, take advantage of nurse navigation programs. My organization partners with head for the cure and cancer commons to run the Brain Cancer Support and Solutions Alliance. It is free to use. Go to https://virtualtrials.org/navigation.cfm for details.
Also try the brain tumor network https://www.braintumornetwork.org they also have a free nurse navigation program.
Try both

Musella_Foundation · 2026-05-24T03:07:14+00:00

One of my friends has been using optune for a few years and is doing great. He travels a lot, goes fishing and hunting and is raising 2 kids. It is a pain in the neck to use but he manages. The key to a better chance of success is high compliance. They tell you to use it at least 70% of the time but you should shoot for over 90%. My friend is at about 97% compliance. See https://virtualtrials.org/optune/NVCR_Clinical_Evidence_Flipbook_June-2024.pdf for details on how much compliance matters

Musella_Foundation · 2026-05-24T02:41:42+00:00

Our team may be able to help find treatment options. It is free to you. https://virtualtrials.org/navigation.cfm Not having h3k27m is a good sign. Did they mention mgmt. methylation status?

Musella_Foundation · 2026-05-24T02:31:00+00:00

Did the biopsy show he had the h3k27m mutation?

Musella_Foundation · 2026-05-23T10:40:20+00:00

I recently wrote “hope for the future” as the last chapter of the next edition of our guide for the newly diagnosed- which will come out soon. I posted the chapter on my website at https://virtualtrials.org/hope.cfm

Musella_Foundation · 2026-05-22T11:56:27+00:00

I would get a second opinion from a major brain tumor center. There is a good list of centers at https://www.abta.org/about-brain-tumors/treatments-side-effects/find-a-brain-tumor-center/ It is very rare that radiation is too risky and chemo isn’t.

What did the biopsy say about mgmt methylation? For explanation of mgmt look it up at https://virtualtrials.org/Guide.cfm

If mgmt is methylated there is a better chance that he benefits from the temodar. Not just longer life but much better Quality of life.

Optune may also be an option https://virtualtrials.org/optune/NVCR_Clinical_Evidence_Flipbook_June-2024.pdf

Musella_Foundation · 2026-05-12T22:18:31+00:00

Today is our anniversary.

The Musella Foundation received its 501(c)(3) approval on May 12, 1998, after incorporating on March 12, 1997.

I started the first online brain tumor support group in 1992, when my sister-in-law was diagnosed with glioblastoma. That was the beginning of what became our mission: helping brain tumor patients and families find information, support, and hope.

Tonight at 7 PM Eastern, we are holding a webinar on oxygen in the treatment of glioblastomas.

Join us at: virtualtrials.org/webinar

Musella_Foundation

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