Tuesday, 29 October 2019

Hi,  I write again seeking advice.  I have very much appreciated comments/advice over the years and the expertise of those on this blog.  Unfortunately, for some weird reason I cannot respond to responses, but am very appreciative!
My 26 y/o son has had another recurrence of his IDH1+ secondary GBM in L frontal lobe..
To summarize his past history, he had an AA3 diagnosed when he was 18 y/o treated with GTR and proton therapy only (clinical study) and had 5 good years where he graduated from college (with honors), worked and started medical school.  His tumor recurred his 1st year of med school as a very small area of IDH1+ low mutation GBM  (unmethylated) treated with aggressive GTR and then started on BGB-290 and TMZ study.  He was on study from 4/18 thru 7/19.  He completed a year of med school successfully while on chemo, but pretty low doses of TMZ used due to anemia (needed a few transfusions).  A 3 mm "scar" seen on 5/19 scan grew into a large tumor by 7/19.  So, since not great options, we opted for immunotherapy given his hematologic issues with preceding therapy--he was enrolled in IL-12 + Veledimex +PD1.  His recurrent tumor was found to be hypermutated and now methylated (?)--so thought it turned out to be an appropriate choice. He had another GTR 8/19 with excellent neuro recovery.  His MRI showed a strong inflammatory response around meninges/spinal cord, which study group felt was due to treatment (and they were correct).  Anyway, MRI at 2 months after surgery showed a large L frontal lobe mass--thought was that it could be pseudoprogression, but surgical path showed all tumor (don't have final path yet).
So...he had another GTR (fabulous neurosurgeon) and has no obvious cognitive deficits (he is tutoring Latin grammar at the moment).  He starts radiation next week (has been 7 years since proton) and will likely still have immunotherapy and ...something else. (Immunotherapy--likely Keytruda which is FDA-approved for mismatch repair deficient tumors?)

His current neuro-oncologist seems excellent, but the question is what else?
Options that have been considered--olaparib--radiosensitizing and might work with IDH1
                                                       --CCNU--old standby--don't know how long will tolerate
                                                       --regorafenib--superior to CCNU in one study--fewer blood probs?

Interestingly, his tumor did not grow at all in the 2 weeks before surgery, so wonder if immunotherapy was starting to kick in, though I was told that tumor growth is not always linear.

I know that this history is long and somewhat technical, but also that there are some very knowledgeable people on this blog.  Any insights of those on immunotherapy, CCNU or regorafenib would be appreciated.  I would also be curious if anyone has been on olaparib--it was tolerated well with radiation in elderly patients in British study.

Thank you so much for any help you can give....Anne

Monday, 28 October 2019

A hopefully encouraging update

Hello all,

I hope to offer some feedback and encouragement to others on their brain tumour journey.

I have not long finished six and a half weeks' (33 fractions) radiotherapy with daily temozolomide. The first post-radiotherapy scan was far better than we could have hoped for. Although I have yet to see the scans, the oncologist said he was delighted and was struggling to see evidence of residual tumour (even though we understand that there was some left in the corpus callosum). He looked a little surprised, I might add. He is now rather more interested in the supplements I am taking than he was pre-radiotherapy!

My tumour: anaplastic astrocytoma right frontal lobe, WHO Grade III, MGMT methylated, IDH1 mutation positive, ATRX expression lost, p53 wild type, Ki-67 20-25%,

Supplements/Repurposed meds:
Boswellia extract (WokVel)`
999mg / day
20mg od
Curcumin (Longvida preparation)
CBD oil
ECGC (green tea extract)
Teavigo preparation, 1/day
20 mg before bed
Omega-3 fish oils (EPA, DHA)
3000 mg daily of EPA + DHA
200 mcg daily
Vitamin D3; or Alfacalcidol .(prescription)
5000-10,000 IU daily Vitamin D3
Chloroquine phosphate
250 mg daily;

During radiotherapy I exercised 10-15 minutes twice a day on a bicycle rigged up to a turbo trainer.
Diet-wise: I tried to avoid big, carbohydrate-heavy meals, ate lots of nuts, seeds, eggs and fish, and salad/vegetables. My energy levels actually increased during the radiotherapy (!) (I think this may have been partly because I was still recovering from the surgery when the radiation started).

I would therefore say that the above regimen has stood me in good stead so far and happy to answer any questions on my experiences to date. I have just finished the first cycle of temozolomide (at a higher dose than that during radiotherapy).

Musella yahoo groups shutting down. New forum address

Here is a message from Al Musella.  Please check out and support his new forum.

This group is closing down as Yahoo no longer will provide groups. We are moving to forum.virtualtrials.org 
Please register there and try it out!

Tuesday, 22 October 2019

Hi Stephen, hi all,

i read good things about the photodynamix therapy, for example:

One question about that topic does not let me go: Would it be possible to use that technique after a "full resection" or as an conservation thearapy when there is no tumor visible?
Don`t you think you could attack left over cells that way?

Thank you for an response!

All good!

Wednesday, 16 October 2019

Good afternoon, Stephen and all!

Thank you so much for this blog, for the large amount of useful information that can be found here. This is very important for everyone who has faced such a terrible disease. We would like to tell you about our situation and we really look forward to your help, since we do not know at all what is best to do in our case. My sister (48 years old) was diagnosed with glioblastoma multiforme in April that affects affecting the insular lobe of the telencephalon and the right frontal lobe of the brain (IDH wild type; MGMT is unmethylated; ATRX obtained). At the moment, we do not have any other data on genetic mutations, a full genetic analysis will be available only after 3 weeks. 4 days after diagnosis, an operation was performed to remove the tumor, a resection of more than 95%. During the operation, a displacement of the neoplasm with affecting the pyramidal tract (about 8 mm) was found. On the third day after the operation, my sister was already perfectly normal, feeling quite satisfactory. At the end of May, a course of radiation therapy began, 6 weeks (TMZ 75 mg / m2 per day, concomitant radiotherapy 59-60 Gy). Immediately upon completion of the course, edema began to develop, tumor recurrence was recorded, and the condition began to deteriorate steadily. The size of the new tumor at that time was already slightly larger than the removed one. We attribute the deterioration of the condition to the consequences of therapy, since a month and a half from the operation to the start of therapy, everything was fine. As a result, the sister began to choke, it became difficult for her to walk and talk, constantly lacking oxygen. Dexamethasone 12-8 mg began to be used. In July, we had an MRI in one of the best clinics in Germany (where the first operation, radiation, chemotherapy was performed), as a result of which German doctors refused us and gave us a couple of weeks ... By the end of July, she practically stopped moving on her own, could only reach from the bed to the toilet and vice versa, her left arm was almost inactive. In August, we started using Optune, took a chemotherapy course (TMZ, 240 mg / m2 for 5 days). In early September, literally a day after the completion of chemotherapy, the condition became critical, she simply did not wake up in the morning. Doctors were able to perform a miracle, brought back to life. And they insisted on a second operation, which became, as it turned out, the last available opportunity to save her life (without an operation, it's a matter of days). The operation was carried out on September 13, the tumor was removed by 90%. Dexamethasone 3 days before surgery - 20 mg, now reduced to 5 mg. A biopsy revealed that the removed tissue is radiation necrosis. But doctors can not be sure about the remaining 10% - this is necrosis or nevertheless a tumor. After the operation, the sister successfully recovers, the doctors are satisfied with the process. Memory, speech, motor functions were not affected. Now she can take several dozen steps a day with support. Every day we work out with a fitness trainer, two days ago we started going to the pool and exercise on a stationary bike. A few days ago MRI was done, the tumor does not develop, the displacement decreased by half.
And now the main thing. We need to decide on the next steps. We wanted to participate in poliovirus trials in the USA, but they refused (complex tumor location, low Karnowski score).

Considered as options for participation in studies of the Canadian vaccine VAL-083 (interested, because its effect does not depend on MGMT methylation), the DCVax vaccine. But at the moment for us it is all inaccessible in connection with the functional state of the patient.

In addition, immediately after the second operation, we sent the tumor material for the manufacture of the dendritic vaccine. Our neurosurgeon (who performed the second operation) spoke out against its use. But we still plan to try it. Avastin was abandoned, and in general, we are actively studying alternative medicine options, we want to make our own cocktail. But while we still haven’t figured it out enough, we don’t understand how to correctly compile it, what additional information is needed for this. It’s very scary to harm her! We are afraid of the traditional treatment, because before our eyes a person literally died away with its use. And now, every day, even small, but progress and improvement is noticeable. And we are afraid to make a mistake in the independent choice of funds - what if she suddenly gets worse?

Do you believe in alternative methods in general or choose traditional treatment?

Has anyone tried soda solutions, what do you think of this method?

I understand that the question is very vague, that everything is very individual, and now I’m carefully studying all the information on the blog, but maybe you can recommend which drugs you should definitely pay attention to? What worked for many?

We will be very grateful for your reply!

Monday, 14 October 2019

Feedback on Cocktail & Post-TMZ

Dear Stephen, Dear All,

I’m so sad that so many of us are finding ourselves here. You have my immense gratitude, Stephen, for the invaluable knowledge that you share with us all and for this incredible website.

I was diagnosed with GBM in July 1018. I’m a single parent of a young child. This nightmare has been devastating.

My tumor was very large, in my right parietal cortex, 100% resected. It was 94% MGMT methylated. It had TP53 mutations in three variants, no IDH1 mutation, CBL mutations in two variants, CDKN2A/CDKN2B homozygous deletions, Stag2 mutation, PDGFRA mutations in two variants (one with 85% frequency), and very high amplification of PDGFRA (~25,000 reads (>50x)) .

I’m now completing my 12th TMZ maintenance cycle. I have not yet had a recurrence and know it’s a race against the clock. The tumor sample was unfortunately set in paraffin, so I’m not a candidate for DCVax-L. I’ve been trying to raise funds for the CeGaT peptide, but coming up with all that money is a longshot for me.

1] Does anyone know if there are any other vaccines/immunotherapies for which I might qualify?

2] I’m wondering if anyone could provide a recommendation of what treatment to pursue after a year of TMZ. I battled with my neuro-onc to use CCNU on day 1 of my TMZ maintenance cycles, but she would not relent. In fact, she has refused every request I’ve made of adding agents in addition to TMZ, such as Keytruda, to prolong my survival. Is my only option at this point in terms of ‘standard of care’ metronomic low-dose TMZ?

3] Is there such a treatment as metronomic low-dose CCNU? If not, might I push to now receive CCNU in a conventional manner, assuming my blood counts are okay?

4] If I proceed with metronomic low-dose TMZ, should I avoid low-dose metronomic Accutane?

5] I had to stop high-dose Tamoxifen owing to concerning side effects. Would it have any value (such as for protein kinase inhibition) at a much lower dosage? Is there another effective anti-angiogenesis medication to use instead?

Following is my current daily combination of off-label medications. I would so greatly appreciate any feedback on the dosages (are my current ones at therapeutic levels?) and what agents I might consider adding. Thank you so very much!

Celebrex 400 mg
Metformin 1500 mg
DCA 1000 mg (on/off owing to significant neuropathy)
Lansoprazole 30 mg (120 mg 3 days before TMZ, during, 2 days after)
Chloroquine 250 mg
Naltrexone 4.5 mg
Minocycline 200 mg
Melatonin 20 mg

With gratitude and praying for us all!

Wednesday, 9 October 2019

Intense itching. could it be due to a supplement?

Advice and experience sought.
Having completed 6.5 weeks of radiotherapy and daily temozolomide for a grade 3 astrocytoma, I started to develop fairly intractable itching - sometimes on my legs, arms or back (which is where it is currently). It started fleetingly while I was going through the treatment, so I assumed it was a reaction to temozolomide. My blood tests were all fine when I had my last dose of treatment. It's been over two weeks since my last dose of temozolomide and the itching is getting worse. I wondered whether anyone had experienced such symptoms with any of the following cocktail?
  • Boswellia (WokVel): 999mg / day
  • Vitamin D: 10,000IU / day
  • Curcumin (Longvida): 1000mg/day
  • ECGC (TeaVigo) Green tea extract 1/day
  • Melatonin: 20mg at night
  • Omega 3 Fish Oils: 3000mg daily of EPA +DHA
  • Chloroquine phosphate 250mg/ day
  • Selenium: 200mcg/day
  • Etodolac: 600mg/day
  • CBD oil: 50mg+ / day
I'm going to see my family doctor to check whether it is anything obvious, and to get kidney and liver function blood tests done.

Any other ideas or suggestions?

Monday, 7 October 2019

URGENT: my son of 6. Help needed with decision and protocol

Dear friends,

I have a very delicate  and urgent decision to make tomorrow and i would love to hear what you think. I think nobody can understand us better than you.

My son of 6, Dario, is diagnosed with an aggressive brain tumor called AT/RT in the 4th posterior fossa. At the time od diagnosis he had a M1 metastasis consiting of cells found in the spine. After this diagnosis all the spine test were negative (done every month). He had surgery in may 2018 and we followed the sickkids protcol for a year and a few months (6 cycles of chemotherapy and maintenance protocol consisting of tamoxifen)

After 1.3 years he relapsed this last 29 august and he had again surgery with total resection. The tumor came back in the same.

After the relapsed i started to devour all the literature and find these non conventional approaches and researches like Daniel from cancertreatmentresearch.com who are helping us.

We started a off label drugs cocktail that i have pasted bellow.  We are following this religiously. And we are triying to improve it. A pediatric doctor and some other researches are helping us to find dosages etc

The MRI two weeks ago is clean and the CT scan from thursday is clean but since we have not done any chemo or radio after surgery, we are nervous.

Our oncologist at the hospital only recommend at this point doing full brain and spine proton irradiation (54gy in the tumor bed) and 34gy in the spine and rest of the brain.

For a kid of 6 year this is not the best treatment but it is also an aggresive cancer. So most of the standard oncologist and radiologist will recommend this standard treatment. We never did radiation before.

So, my line of thinking is untill now:
Let's do focal radiation  only and give him the opportunity to avoid serious side effects of the full brain and spine irradjatiob and if the tumor comes back, we are using the off-label drugs and a second irradiation only to where the tumor if it comes. 

I am still in doubt, my wife too. I do not know i we are risking his life or not. If we do not irradiate the whole brain, there is the risk of dissemination because he already had M1 at diagnosis and after one month he has not received any chemo or radiation. 

I don't want to make you responsible of giving your opinion because we are the ones responsible but i am not sure if the tumor come backs we can fight it with the "off-label drugs". Since it is aggressive and comes very fast, i do not have experience what you could have had in brain tumors or your collegues in this world of non-conventional treatments. There is also metronomic treatments or alisertib for re-ocurrences. 

Please, help me. I will never make you responsible of any suggestion but you have seen many cases already of this type, can you comment what is your view? what will you if it was your son?
I am trying to give him an opportunity to avoid the big side effects of total radiotherapy but at the same time i am not sure if we are risking his life.
We have time and resources to dedicate for him.

This is what we are following now:


Main drugs used now:

  1.  METFORMIN 500mg 1/2 pill after breakfast daily for 2 weeks if tolerated increase to 1 pill after breakfast daily     
  2. MEBENDAZOLE 200mg 1 pill after lunch daily
3.  ATORVASTATIN  or sinvastim 10mg 1 pill at bedtime
4.  DOXYCYCLINE 100mg 1 pill after dinner for 30 Days EVERY 3 MONTHS, to start after 3 MONTHS. 
6.  CLARITIN (LORATADINE) 10mg 1 pill once daily
7.  NICLOSAMIDE 500mg 1 pill once daily THREE TIMES WEEK ONLY (we have not started this drug) 
8.  IBUPROFEN 200mg 2x/day after food (PULSE THERAPY which means doing this periodically for 2-3 months at a time with breaks of 1-2 months. We have not started this one)
9, Oral etoposide (we started this one 2 days back)

Drugs that will being considered depending on outcomes and safety of use:
  1. Ribavirine. 200 mg. 
  2. Disulfiram modulates stemness and metabolism of brain tumor initiating cells in atypical teratoid/rhabdoid tumors https://academic.oup.com/neuro-oncology/article/17/6/810/1113353
  3.  6-diazo-5-oxo-L-norleucine. Unbiased metabolic profiling predicts sensitivity of high MYC-expressing atypical teratoid/rhabdoid tumors to glutamine inhibition with 6-diazo-5-oxo-L-norleucine https://clincancerres.aacrjournals.org/content/early/2019/07/12/1078-0432.CCR-19-0189
  4. Dasatinib and nilotinib
    differential methylation of a PDGFRB-associated enhancer confers specific sensitivity of group 2 ATRT cells to dasatinib and nilotinib, and suggest that these are promising therapies for this highly lethal ATRT subtype. https://www.cell.com/cancer-cell/pdf/S1535-6108(16)30509-8.pdf https://www.ncbi.nlm.nih.gov/pubmed/27960086
  5. Sustained Complete Response to Metronomic Chemotherapy in a Child with Refractory Atypical Teratoid Rhabdoid Tumor: A Case Report https://www.frontiersin.org/articles/10.3389/fphar.2017.00792/full
    Continuous oral celecoxib with alternating metronomic etoposide and cyclophosphamide, in combination with biweekly bevacizumab and monthly intrathecal liposomal cytarabine
  6. Inositol tripuorosphosphate. Method of reducing multi-drug resistance
7, Phenylbutyrate to Treat Children With Progressive or Recurrent Brain Tumors https://clinicaltrials.gov/ct2/show/NCT00006450.  
9, valganciclovir  A Swedish study used a loading dose, followed by a maintenance dose. The loading dose was 900 mg orally twice a day for three weeks, followed by 900 mg a day. Valcyte tablets come in 450 mg tablets so that would be 2 tablets in the morning and in the evening for 3 weeks and then 2 tablets in the morning thereafter every day
11. clemastine


8.  CURCUMIN 400mg 1 pill 2x/day 
9.  BOSWELLIA 400mg must be a minimum of 3000mg per day (8 pills per day)
10.  VITAMIN D 3000 IU once daily
11.  PROBIOTIC once daily
12.  ASHWAGHANDA 500mg 1 pill 2x/day
14.  MILK THISTLE 175mg 1pill once daily
15.  ASTRAGALUS 500mg 1 pill 2x/day [During Radiation Increase to 2 pills 3x/day]
16.  URSOLIC ACID 50mg once daily hay 150
17. CBD-THC. 1:1 ratio. 

Supplements that are being considered:
c) Canagliflozin https://www.cancertreatmentsresearch.com/glucose-absorption-inhibitors-to-inhibit-tumor-growth/ The purpose of using this one is to lower the amount of glucose absorbed by the tumor
D) Honokiol. Eliminates Glioma/Glioblastoma Stem Cell-Like Cells Via JAK-STAT3 Signaling and Inhibits Tumor Progression by Targeting Epidermal Growth Fac..https://www.ncbi.nlm.nih.gov/pubmed/30587839/
d) Fish oil. 1000 mg (w/ any meal, unless PLT < 125)
E) Artemisia annua 
f) Melatonine, 5b (built gradually)
g) Digestive enzymes (with each meal)
H) Essiac (night)
i) Selenium, 50-75mcg 

Thanks in advance