Friday, 15 February 2019

GBM recurrence

Dear All,

I request your opinion and advice, since our situation is very difficult. A young adult (19 years old) was diagnosed with the GBM WHO IV (gliosarcoma), and further genetic screening revealed the H3F3A G34 mutation, with ATRX, TP53, PDGFRA and others. The treatment was more or less standard Stupp protocol, with adjuvant TMZ+CCNU (as  in CeTeG trial) after the chemoradiation. After 8 months from diagnosis and the fourth chemo cycle, a diffused regions appeared in MRI scans, which our oncologists interpreted as progression, and in spite of three independent NO opinions from US, Spain and Poland, they decided to switch the chemo to Topotecan+dacarbazine (DICT). That worked for 8 cycles. During that time we tried to enroll in  a few clinical trials but without any success, usually due to the geometry and character of changes, a lack of free places, non-recruiting or closed trials and other circumstances.

Our supplements coctail was rather conservative (PSK, fish oil, melatonin, boswellia, curcumin, berberine, bee products, pterostilbene, ecchinacea, syllimarin) + anti-seizure drugs.

Unfortunately, the last MRI scan made a few days ago shows that the tumor has invaded many parts of the brain, though the primary site is essentially clean. This is a real shock for us, since the previous scan made at the beginning of December, 2018 revealed stabilization and even some improvement when compared with previous scans made on 2-months basis.

Our doctors stand at the opinion that nothing more can be done, and they sent us home (to palliative care).  I feel devastated, they give us at most a few weeks.

- Could be a metronomic TMZ (40-50mg/m^2) beneficial in this situation, as the primary tumor was non-IDH1 and likely non-MGMT, that would be the only thing to do, given that the patient has mood changes, lacks of concentration; or any other salvage chemo, Avastin, Nivolumab?

- Do you know or could you recommend a hospital/center in Europe which could provide a second and reliable opinion (like

Stefan Sobieski

Amazing G47 Delta (Herpes Virus) data from Japan for rGBM

Dear all,

Just came across a very promising phase II trial interim update from Japan, from Daiichi Sankyo's ongoing G47 Delta trial. It looks like this virotherapy is heading for fast-approval in Japan, after achieving amazing interim results in recurrent GBM:

- 1 yr survival was 92.3% (12/13 patients), vs. around 15% in historical comparisons
- Median PFS (16 people) was 8.6 months; Median OS has not been reached yet (but at least 4 with a 2 year follow-up so far)

While a small population, the results were so strong that the company is seeking to bypass the phase III trial altogether and apply in the near future for manufacturing & marketing of the treatment. Expectation would be to reach conclusion of this process within this year. It would be the first virotherapy treatment on the market.

I did not find anything on it in the English web, but here is the Japanese press release (best us web translate, which works reasonably well):

Very good news I believe! Hopefully we can get similar good news this year also from TOCA & DcVax. I really feel like 2019 will finally be a game changer for GBM, finally!


P.S. Does anyone have a view how likely it would be to get this treatment approved outside of Japan given these results?

Wednesday, 13 February 2019


I'm posting this on behalf of a correspondent.

We are  searching for medicine against brain tumor.
We found an information about Leacadinum and spoke with its creator Ivars Kalviņš. He is from Lithuania.
It was very effective instrument till 1990’. (russian articles). “after a course of Leacadinum use, the tumor was reduced by approximately 35–40%, metastases to the brain stem disappeared.”

And also we know story of 1 woman with GBM who survived after its using for many years (when is was in production).
Now this medicine is not producing (because of politics or something. It was bad times for USSR and its friendly countries).
We know the owner of the patent. And may be it is possible to order a test batch from him.
In this case we are searching for any information about Leacadinum:
  1. patients true stories
  2. Doctors evidences (doctors should be people after 50-60 years old I  think)
  3. May be someone of you will join us in ordering of test batch (more people=cheaper cost).
And any comments and discussions  will be helpful! 

Especially people from Lithuania are welcome! 

Neo-adjuvant (before surgery) pembrolizumab

Neoadjuvant anti-PD-1 immunotherapy promotes a survival benefit with intratumoral and systemic immune responses in recurrent glioblastoma

This was a small, randomized trial for recurrent GBM at first or second relapse, who were candidates for surgical debulking and were on steroid doses less than 4 mg per day of dexamethasone or equivalent.  There were 16 patients in each arm. One arm (neoadjuvant) received pembrolizumab (Keytruda) 14 days before surgery, and further doses of pembrolizumab after recovery from surgery. The second arm (adjuvant) received pembrolizumab only after surgery.

The survival advantage of neoadjuvant pembrolizumab was statistically significant (hazard ratio = 0.39, P = 0.04).  Note that it's more difficult to achieve statistical significance in a smaller trial versus a larger one.  Patients in each arm were well-matched for typical prognostic features.

In light of the positive results of this trial, "we intend to expand the current study and pursue further clinical trials with neoadjuvant combination immunotherapeutics."

Tuesday, 12 February 2019

Tumor Monorail

Is there any mention on this site about this Tumor Monorail?  What are your thoughts Stephen?

My husband had a focal seizure at the airport and this week had one while waiting for his f/u MRI at home.  He's never had seizures b4 this.    After 5 yrs tumor free from original GBM diagnosis,  recurrence/surgery one year ago, they now think he could have two tumors!   Time to head south to UCSF for Dr. Berger to weigh in since one tumor site looks close to the ventricle.  :-((  

Also, he's had skin cancer on his head w/2 Moh's surgeries with grafts this last summer and the rashes from that, in itself, could inhibit him having surgery, fearing if any infection could get in his brain if they open him up.     Talk about getting slammed!!!  We are waiting to hear from UCSF for their opinion.  I don't have a good feeling this round.


19 yr old with GBM, any advice for next step warmly welcomed x

Hello everyone, I've learned so much from this site already but now I have some more detailed information I'm wondering if anyone can help me with some specific advice (I apologise for the long post now)

My 19 year old daughter was in her first tern at Uni when she was diagnosed with Glioblastoma Multiforme in October, She had a craniotomy early November and most of the biggest tumour was removed. She then had the standard 6 weeks of radiotherapy (18 full brain, 12 targeted) with Temozolomide. She's had a month off and just had her first double dose 5/23 chemo (and she's been horribly sick with it and has zero appetite)

We were hoping to go down the DCVax route but it looks as though there might not be enough frozen tumour material to make a full vaccine (and we're gutted)
We had an Oncologica biomarker report and it looks like her mutations are ATM, TSC1 and TP53, her PD-L1 tumour proportion score is 90-95%, PD-L1 positive ICs 1% of tumour area (which I'm told suggests she'd be a good candidate for immunotherapy)

In terms of what Laura's currently taking, she's takes FECO 3 times a day, Keppra, Chloroquine and she's also on the Care Oncology protocol (Metformin, Atorvastatin and Vermox)

Supplement wise she also takes;
Longvidia Curcumin
Milk thistle
Vitamin A D K

So the reason for the post is to ask if any of you wise people have any suggestions as to where we could look next? I think we might struggle with dendritic cell therapy due to the small sample size but is it possible to get hold of immunotherapy drugs or is that only an option if you're on a trial?

Laura was just getting started in her life and I'll do whatever I can to give her the best possible change of a happy life.
Thanks very much for reading and best wishes to you all
Nicola x

Hi to everybody. My 69-year-old mother was diagnosed with glioblastoma in december 2018. We realized that she was missing a few words in reading, writing and talking and having constantly headache. It was operated on 12/27/18, when approximately 90% of a tumor was removed. She never had any seizures. After the surgery she had a considerable improvement in writing and reading and did not fell any more headaches, despite having presented a little tremor in her hands. Radiation therapy started on 01/23/1919 and was fractionated in 15 sessions. The first cycle (21 days) of temodal (temozolamide - TMZ) chemotherapy was started on 05/02/19.

Since the surgery she has been taking:

- Omeprazole
- Pure (she has hypothyroidism)
- Depakene 500 mg twice a day
-dexametazone just one per day

and supplements:
- magnesium chloride
-D vitamin 10,000 cu
- curcurum (curcumin)
-Omega 3
metatonin (15) at night

started recently:
1 clove garlic, raw

and will start:
-Beta Glucan

We are thinking of associating acetatalozamide with the next cycles of temozolomide.

I would like you, or someone, to evaluate, and please and if possible make some comments and suggestions.

Note: We have not taken the MGMT exam yet.

thanks in advance

Thursday, 7 February 2019

Request for choosing a suitable cocktail

Hi everybody and many thanks to Stephen for adding me to
this wonderful blog.
I have some questions regarding my father situation and it’s
a bit embarrassing cause we don’t have detailed information about the tumor as
many of you have, so I wonder if someone could kindly help me to choose the
best probable cocktail for him while I know that it is just a shot in the dark.

He is 69 years old and last year (March 2018) during working
with probably toxic glue he suddenly fainted out and later he had problem in
his stomach. We went through lots of colonoscopy and other procedures during a
year and he lost more than 10 kg. Finally (at September 2018) we had a MRI that
said low grade glioma (in the LT temporal)
is the first possibility. (I guess since his HDL and LDL cholesterol were 41
and 77 mg/dl in July 2018 the tumor was not aggressive at that time). We’d been
told that because of tumor location it is better to do nothing and just wait.
(I am suspicious about
Finasteride pill that he took for 3 years for his prostate and we recently switched
to Terazosin)
Then in December we had
the second MRI which shows a “51*47*24 mm heterogeneous mass with surrounding edema
and extension to hippocampus region and mass effect on the LT with mild mid
line shift”.
Then we went through a
painful process to decide whether we should take the risk of surgery and
finally we decided not to (which I am still doubtful about it). After a stereotactic
biopsy which only says this:
  •  Microscopy:

Sections reveal fragments
of tissue including an astrocytic neoplasm. The cellularity is high. The cytologic
atypia include unclear hyperchromatism and some pleomorphism with scattered
cells having larger more hyperchromatic nuclie, occasional multinucleated. There
is rather extensive necrosis with prominent vascular and endothelial
  • Diagnosis:

Astrocytoma, anaplastic
with necrosis (glioblastoma multiforme), left temporal and basal ganglia involvement.

We started the temodal (120)+ radiotherapy (30 sessions) recently and now he
is in his second week.
He is taking 1 sodium
valproate 500, had around 25 dexamethasone (finished now), 3 phenytoin 100, 2 ranitidine!,
and 1 Terazosin a day.

I am trying to persuade
his Drs: to change ranitidine to cimetidine and maybe adding metformin (since he
had lost many weight I don’t know if they accept this and as someone mentioned
here metformin and cimetidine does not go well together. Am I right? But cutting
his carbohydrate too much is quiet hard so I still like metformin)

Also maybe chloroquine if
they accept.

So the first silly question is that, if he goes well with the first cycle
can we say his tumor is methylated?
Do you think Turmeric curcumin NovaSol could work as a replacement for
Longvida? Because of his weak stomach I thought soft gels might work better.  (

What would you suggest for such a vague situation for a cocktail or other
therapy? (
  Ttf and vaccine are not available here)

I know most of information I said are useless but I thought it might help for some better guess. 

Many thanks in advance,


Tuesday, 5 February 2019

Chemoradiation + PCV + Cannabidiol for IDH1-mut secondary GBM

Case Report: Clinical Outcome and Image Response of Two Patients With Secondary High-Grade Glioma Treated With Chemoradiation, PCV, and Cannabidiol
Dall'Stella et al. 2019

link to full study

Monday, 4 February 2019

Drugs to Combine with CCNU

My husband will soon begin CCNU for recurrence. In reviewing Ben Williams' document, I see that Verapamil and Calcium Channel Blockers like nimodipine have some evidence for augmentation benefit; however, the articles I found (both from his references and my own search) are quite old. Verapamil has more drug interactions than nimodipine. Is there any research about these drugs or other potential augmenters which I might share with his NO? (His NO has generally been supportive of repurposed drugs when I can share relevant studies. His NO does not want to combine CCNU with TMZ despite CeGaT study due to increased toxicity.)

Much gratitude and well wishes to all--