Hi everyone! Thank you for your advice, guidance and experience. I wish everyone a complete recovery!

My name is Kirill, age 33. I am looking for help and advice. On May 20, 2020, I had surgery to partially remove the neoplasm in the left temporo-insula.

Analysis results: A diffuse glioma with infiltrative growth into the brain tissue is revealed. The tumor is represented mainly by the astrocytic component, also a little oligodendrocytic and hemistocytic. Mitotic figures are noted. Cellular density is increased. Reactive endothelium is found in the vessels.

1. Anaplastic astrocytoma, WHO Grade 3
2. IDH1 R132 H - mutant
3. MGMT - unmethylated
4. Ki-67 up to 15%

There is no exact information, but surgeons estimate about 80-90% removal of the neoplasm. 

I had the following treatment:

1. Proton therapy course 6 weeks. Radiation quantity 60 GyE. Finished 08/25/2020. At the time, I had no information about additional treatment that you discuss on the forum, so I have not used the means for increasing the sensitivity of the tumor in radiation therapy.
2. Temozolomide 200 mg/m2 (in my case 350 mg). Standard schedule 5/28.

10/09/2020 – start of 1^st course

04/23/2020 – 8 course.

During chemotherapy, I ate large amounts of antioxidant foods (broccoli, berries, green tea, garlic, onions, parsley, etc.). I have a simple diet: whole grains, refusal of meat in favor of fish, refusal of sugars and simple carbohydrates, a lot of vegetables and fruits, greens. I also took: curcumine, boswellia, omega-3, lycopene, resveratrol. Daily walking at least 1 hour.

At the moment, a fairly large cyst has formed at the place of the surgery. MRI 03/09/2021 shows stable results, no positive nor negative changes. PET/СT 04/02/2021 shows relapse. The doctors asked for a second MRI to check. The doctors, as usual, are conservative and treat according to the protocol.

After such news, I immediately bought medicines and dietary supplements, which are recommended on the forum.

Medicines:

1. Levetiracetam
2. Fluoxetine
3. Mifepristone
4. Hydroxychloroquine
5. Metformin
6. Valaciclovir
7. Disulfiram
8. Minocycline
9. Atorvastatin
10. Mebendazole
11. Tamoxifen
12. DCA
13. Celecoxib

I would be grateful for your help, whether they suit me and how to combine them all.

Dietary supplements:

1. Berberine
2. Fungi Perfecti, Stamets 7
3. Fungi Perfecti, Host Defense Turkey Tail
4. Now Foods, EGCg, green tea extract, 400 mg,
5. Life Extension, optimized resveratrol
6. Life Extension Boswellia serrata
7. Curcumin SLCP
8. Now Foods, silymarin
9. Solgar, vitamin D3 5000 ME
10. Now Foods, ultra omega-3
11. Life Extension, Mega Lycopene

I really want the tumor to shrink. Thanks to your forum, I plan to:

1. Switching to the metronomic schedule Temozolomide, dose 70-80 mg / kg2. 3 weeks taking, 1 week off. Or without interruption if I have enough strength.
2. Add Levetiracetam, Fluoxetine, Disulfiram, Valproic Acid to reduce the effect of MGMT
3. Add Metformin for blood glucose control.

Thank you for your opinion and advice:

1. What medications can be added (or removed), in what dose and for how long should I take it?
2. Is it a good idea to add Agomelatine before taking Temozolomide on a metronomic schedule?
3. How do Levetiracetam and Fluoxetine interact, how and in what quantities is it better to take them together?
4. What do you think about Temozolomide + Tamoxifen at this stage? I am thinking about Tamoxifen, because for a year now I have a very high level of estradiol, always the very upper limits. I heard that it could somehow relate to a tumor. I also know that Ben Williams has been taking Tamoxifen on a regular basis. I know that Tamoxifen is not very friendly with Fluoxetine...
5. Please suggest a different scheme if you have different opinion.

If such a scheme does not bring the desired result, then I plan to take Lomustine. Since I heard that Lomustine may be useful in the case of Astrocytoma-Secondary glioblastoma independent of MGMT.

Thank you for your opinion and advice:

1. Do I need to add drugs that reduce the effect of MGMT? Maybe there is a better combination of Lomustine with other drugs? Or is Lomustine not the best option / combination?
2. What medications can be added (or removed), in what dose and for how long to take?
3. Please suggest a different scheme if you have different opinion.

What are your thoughts on having several different short courses of chemotherapy? Ben Williams drastically changed his schemes so that cells did not have time to mutate, adapt and survive.

• Maybe TMZ + Tamoxifen
• Then BCNU (Carmustine)
• Then Procarbazine, oral Lomustine (CCNU). This regimen is known as PC
• Then TMZ + ??? or Avastin + ???
• + Dietary supplements
• + in my case reduce the effect of unmethylated MGMT …

What combinations can fit in my case?

If there will be a second operation, what is the best way to build a more effective treatment with the information already available?

I think there may be several options:

A) Radiation therapy may be prescribed.

I will do the following:

1) Adjuvant therapy Temozolomide + reducing the effect of unmethylated MGMT (Levetiracetam, Fluoxetine, Valproic Acid + ???)

2) I will add drugs that will increase the tumor sensibilization to radiation therapy.

What exactly to add and in what doses in my case?

 

B) They may refuse the radiation therapy and prescribe chemotherapy.

What is the best way to start chemotherapy? Should I continue Temozolomide on the metronomic schedule or change something?

I have a great need to find a specialist, an experienced person with whom there could be a personal connection during treatment. Can you help with this, Stephen?

Also, I really want to help in the development of the project, how can I donate?

Thank you very much for your opinion and support.

P-Selectin Study

 A study that caught my attention with impressive results in vivo albeit mice. They inhibited the p-P-Selectin protein to achieve the results. I found many supplements in my research reducing P-Selectin (EGCG, Melatonin, Lipitor, Resveratrol, Boswellia, etc). What was interesting I found is all the drugs tied with P-Selectin all dealt with inflammation. Sure enough, I found diets such as the Paleo, Low Fat, and Mediterranean diets reduced P-Selectin. I also found a study that correlates P-Selectin to cholesterol levels (LDL) as well as inflammatory responses to exercise.

Study:

https://www.timesofisrael.com/israeli-scientists-stop-brain-tumors-in-mice-say-may-cure-a-deadly-cancer/?fbclid=IwAR0mxsbykw5w5mE33zAgUCO1x3cn6BRXAQjZ5Jb_F3w255JltJ60FcEhQNw

Diet impact:

https://pubmed.ncbi.nlm.nih.gov/11412051/

Impact of Edema:

https://pubmed.ncbi.nlm.nih.gov/10670575/

Exercise and LDL correlation of P-Selectin:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4590908/

Chloroquine supplies - help please

 Hello friends,

It seems to be that supplies of Chloroquine have now completely dried up in the UK (I'm not sure whether it is beause there is no international travel, Brexit is causing problems, or it has been bought up by those believing it offers COVID-19 protection). Can anyone please help me source it somehow? Happy to message privately. I have a grade III anaplastic astrocytoma, currently showing no growth following resection 18 months ago. I have been taking it continuously until the wholesaler told our pharmacy that they didn't have any more and didn't know when it was next due to arrive.

Any help would be HUGELY appreciated.

Stuart

doctorsjgf@gmail.com

Green tea differences ?

 Not sure whether there is any research looking into this but until recently I have been using Teavigo Green Tea Extract 90% EGCG, 30 Veg Capsules by Swanson but these have been out of stock. I have started taking a different preparation (which has higher EGCG): https://www.british-supplements.net/products/clean-green-tea-extract-polyphenols-916mg-catechins-748mg-egcg-420mg

But I wondered whether there was anything particular about the TeaVigo preparation that made it better for accessing the brain?

Best wishes all,

Our story/ 4years OS

 My husband was diagnosed in  September 2016 at 38 years with GBM IV in frontal lobe, 8cm diameter size. He lived 4 years and 2 months from diagnosis.

I remember over 4years ago I was desperatly looking for the cure for him, some knowledge and hope.

With my medical background I felt that we have to take risks, that with standard care we will get standard results  - this website was an incredible source of knowledge plus Ben Williams, plus Mustella fundation, plus Inspire forum. I want to share our story.

Subtotal resection on October 2016. GBM IV, Wild type, methylated. Then standard protocol temodal and radio for  6 weeks. 

Before radiotheraphy he was put on valproic acid 1g twice daily (without epilepsy). Right before radio he was in ketosis (not eating for 36h) and during Stupp protocol on very strict keto diet. During this time we add some repurposed drugs - metformin, chloroqinine, disulfiram, keppra, cimetidine, celecoxibum, alfadiol tried to decrease dexamethazone as much as possible. Boswellia, curcumin, green team from the very begining. 3 months after completing this protocol he had huge pseudoprogression - maybe due to all this stuff. But our oncology departament kept him on TMZ.

He also had immunotheraphy from Jan2017 - hypothermia and NCV then DCVax and later also Keytruda.

A lot of tiny steps. For example I was trying to find studies for which types of bateria types in gut microbiome the response for Keytruda is better and we were suplementing them. 

During first year he also started nasal inhalations with perillyl alcohol. Also ECCG hat. He tried DCA, Sativex.

He had over three years without signs of disease. He got back to his work.

Then Dec 19 progression- second surgery, stereotacitic radio, temodal rechallange, lomustine without good results.

I want to thank Stephen for his commitment and energy he put into this site and all of you who share experiences with this disease. 

I am in awe what human can bare and what a gift life is.

Thank you. 

Patricia

Mebendazole + temozolomide phase 1 trial results

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7817892/

Mebendazole and temozolomide in patients with newly diagnosed high-grade gliomas: results of a phase 1 clinical trial

This was a phase 1 safety and dose finding trial rather than an efficacy trial, but could be some useful info here.

Intranasal perillyl alcohol + low carbohydrate diet

 Adjuvant effect of low-carbohydrate diet on outcomes of patients with recurrent glioblastoma under intranasal perillyl alcohol therapy

"Results:

In the 1-year follow-up, the POH/LCD group showed a 4.4-fold decrease in the proportion of patients who needed treatment with corticosteroids, as well as a reduction in tumor size and peritumoral edema, as compared to the POH group. While 75% of patients undergoing POH treatment experienced seizures, this fraction was reduced to 56% in the POH/LCD group. A 2.07-fold increase in the proportion of patients with stable disease, along with a 2.8-fold decrease in the proportion of patients with TP, was seen in the POH/LCD group."

POH = intranasal perillyl alcohol

LCD = low carbohydrate diet

TP = tumor progression.

View full study here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7710475/

Dexamethasone limits benefit of Immune checkpoint blockade

 New study published in clinical cancer research:

Concurrent Dexamethasone Limits the Clinical Benefit of Immune Checkpoint Blockade in Glioblastoma

https://pubmed.ncbi.nlm.nih.gov/33239433/

from the abstract:

Results: Despite the inherent responsiveness of GL261 to immune checkpoint blockade, concurrent dexamethasone administration with anti-PD-1 therapy reduced survival in a dose-dependent manner. Concurrent dexamethasone also abrogated survival following anti-PD-1 therapy with or without radiotherapy in immune-resistant CT-2A models. Dexamethasone decreased T-lymphocyte numbers by increasing apoptosis, in addition to decreasing lymphocyte functional capacity. Myeloid and natural killer cell populations were also generally reduced by dexamethasone. Thus, dexamethasone appears to negatively affect both adaptive and innate immune responses. As a clinical correlate, a retrospective analysis of 181 consecutive patients with IDH wild-type GBM treated with PD-(L)1 blockade revealed poorer survival among those on baseline dexamethasone. Upon multivariable adjustment with relevant prognostic factors, baseline dexamethasone administration was the strongest predictor of poor survival 

Conclusions: Our preclinical and clinical data indicate that concurrent dexamethasone therapy may be detrimental to immunotherapeutic approaches for patients with GBM.

The GL261 referred to is a mouse model of glioma.

Blockade Strategy Feedback

 Hello, everyone!

I was diagnosed in May 2019 with GBM and I have completed SOC in Apr. 2020 (Total resection, 42days Chemo/Radiation, and 6 months maintenance chemo). I have done a lot of research on supplements and medications as well as reviewing many promising techniques to stop GBM. One, in particular, had caught my eye which is the CUSP9 protocol. I like this protocol because it attempts to stop GBM in its tracks not just slow or delay things until a recurrence. In addition, I find the results from this study to be one of the best and I believe the strategy used to attack a recurrence is very logical by blocking all the known survival pathways of GBM. I feel that current strategies only partially attack GBM and because of its adaptive characteristics only delays or slows down the inevitable. Cutting off survival paths seems the best strategy until something more profound is developed for people with GBM.

I devised this because it is a helpless feeling treatment is over without much to prevent a recurrence, cocktails are either partially attempting to stop GBM or there is no rhyme or reason to them, dosing strategies do not follow the research, and posted research used in cocktails does not come from peer-reviewed information.

I do not have access to prescription drugs like some people to be able to copy the CUSP9 protocol if I ever have a recurrence or for the newly diagnosed protocol. So I tried researching supplements to see if I could find a supplement-based comparable solution. Unfortunately, when supplements are tested in studies, there is little information on the survival pathways impacted by supplements in the study. I had to reassess my strategy at this point.

I did notice supplements did have common terms in the studies such as proliferation, apoptosis, etc. So I went through many studies and found 9 common mechanisms referenced in the studies as shown.

So I went through studies (NCBI) on many popular supplements used in many "cocktails" and identified the mechanisms impacted by the supplements. I came up with this:

I chose a list of supplements which should provide a blockade to all the mechanisms. I also chose redundancies of each mechanism as I suspect there are many pathways behind these mechanisms. To give a validation to my blockage strategy, I researched Ben Williams protocol he uses to see what mechanisms his protocol covers. I was surprised to find this

His protocol impacts all the mechanisms I found and he also has redundancies in each mechanism of the blockade.

Another argument for this is my oncologist informed me in March of 2020 I had a tumor remnant leftover from surgery 2.5cm in size at the largest diameter with no metabolic activity(contrast and spectroscopy). He thought it was swelling but the MRI with spectroscopy verified as a tumor remnant. This was a shock because I was told by the surgeon I had a complete resection. I was told the only way to get rid of it was removal during any additional surgeries I may experience and since there was no metabolic activity, it would be monitored. In my July MRI, the remnant was 1.8cm in size with a "significant" reduction in blood flow to the original tumor area. In my last October MRI, it was at 1.0cm with more "significant" reduction in blood flow (no metabolic activity). 

So my questions are these:

1. My oncologist attributes the reductions to SOC. However, he admits never seeing such a positive result as this. Could this be the result of SOC, my blockade, or something else?

2. Does anyone see limitations in this or recommend improvements?

Thank you for your feedback.

Regards,

Eric

Questions for newly diagnosted (Melatonin, Chloroquine, Celebrex and NO)

 Hi everyone,

I'm so grateful to have found this blog to give me hope for my sister.  Thank you so much Stephen to have create this. 

She's been diagnosed recently with glioblastoma (Methyled). She's starting her treatment in a couple of days and I have some question:

Melatonin:

My sister is set to have 6 weeks of radio/chemo (TMZ). Melatonin needs to be taken at night but will there be enough in her system to have an effect during the day when She's receiving the radio/chemo? 

Open mind NO or doctor: 

Also, is there anyone who had good luck to find an open mind about supplements and medications that we want to add to her protocol? We are in Canada (Montreal).

Chloroquine: 

If I can't find any doctor willing to prescribe it, is Artemisinin a good plan B? If so, what dosage would be best?

Celebrex:

If for the same reason I'm not able to find a doctor, is Boswellia extract a good plan B?

thanks a lot for your help.

frederique

Lomustine hair loss (alopecia) experience

Hi all

Wondering if anyone who has taken lomustine or CCNU experienced hair loss or low-grade alopecia as a result. If so, could you share the experience, how much loss, how long did it take for hair to grow back, etc.

Thanks!

Expanded Access Protocol for PVS-RIPO (modified poliovirus) treatment for GBM

 This just posted on clinicaltrials.gov on Oct 23:

https://clinicaltrials.gov/ct2/show/NCT04599647

EAP for the Treatment of Glioblastoma With PVSRIPO

scroll down to bottom of the above link for contact info

Treatment options for a first recurrence of GBM

Hi everyone,

Few questions regarding my mother, who unfortunately has had a recurrence of her Glioblastoma. 

BACKGROUND

In August 2019, the Neurological Institute of McGill University (Montreal, Canada) discovered the tumor. My mother had a full resection in September 2019. Pathology : Glioblastoma grade 4, IDH1 wild type - MGMT unmethylated.

After the surgery, the Neuro team has put her on their M-HARTT STUDY https://clinicaltrials.gov/ct2/show/NCT02780024 - which means having condensed radiotherapy (4 weeks) with TMZ, then TMZ for 6 months and Metformin (850) on a daily basis. 

My mother and myself have been very inspired by Ben Williams, this blog, the Surviving Terminal Cancer documentary and Stephen/Ben Williams documents https://virtualtrials.com/pdf2017/treatment_options_gbm_2017.pdf

We've added repurposed drugs and supplements to her diet, which I've listed below.

My mother recovered well from the operation of September 2019, being back to her 100% during the summer and having a clean MRI in July. 

Her MRI of September showed a mass of 2.5cm appeared in her brain. Neither the neurosurgeon, nor the oncologist knew whether it was radio-necrosis or a recurrence. We decided to wait for a month to see how it progressed, adding 4mg decadron to her medications. October 2020, the mass had grown 8mm, so we decided to go into surgery. 

My mother was operated 2 days ago, the surgery was done using 5-aminolevulinic acid (ALA) - which has only very recently been approved in Canada. She's well recovered from it thus far, she's still in the hospital. It seems they've removed most of the tumor, although the 5-ALA technology showed there were small cancer cells left.

We're currently waiting for the pathology from the lab and we'll also send the tumor to Foundation One. I know the results from both these analysis will guide us for the next steps, but I wanted to turn to this blog community - which I highly respect and estimate - to get all the knowledge to navigate through the next steps for this fight against GBM. 

Here are my questions:

1) What are the treatment options for this first recurrence and which one would you recommend?

2) Are there specific questions I should ask regarding the pathology and the results from Foundation One ?

3) From the list of repurpused drugs below, any of them you'd recommend we cut out or we add ?

4) Do you think CUSP9 would be appropriated in this situation and/or any other repurposed drugs? 

5) Would it be a good idea to consider Ben William's approach to chemo, i.e. BCNU chemotherapy with tamoxifen, verapamil, Accutane ? 

LIST OF MEDICATIONS AND SUPPLEMENTS

- Temozolomide (from Octobre 2019 to May 2020)

- Celebrex (from October 2019 until now)

- Melatonin (from October 2019 until now)

- Vitamin D (from October 2019 until now)

- Metformin (from October 2019 until now)

- Keppra (from October 2019 until now)

- Pantoprazole (from October 2019 until now)

- Atorvastatin (Summer 2020 until now) 

- Silibinin extract (Spring 2020 until now) 

- Selenium  (Spring 2020 until now) 

- Omega-3 Fish Oil Extract (Spring 2020 until now) 

- Coriolus versicolor extract PSK (Spring 2020 until now) 

- Curcumin with Peper - longvida (Spring 2020 until now) 

- Maitake-D mushroom extract (Spring 2020 until now) 

- Reishi mushroom extract (Spring 2020 until now) 

- Green Tea Extract (Spring 2020 until now) 

- Soy Isoflavones (Spring 2020 until now) 

- Resveratrol (Spring 2020 until now) 

- Boswellia Serrata (September 2020 until now)

- Tumeric with peper (October 2019 until now) 

- Green Tea (October 2019 until now) 

Many thanks for taking the time to read this,

Bertrand 

P.S. For the French speakers/Canadians out there, there was a Radio-Canada (CBC) news piece about McGill's research for a new treatment against GBM - the  ZR2002 molecule - where my mother was featured (we've been encouraging their research):

https://ici.radio-canada.ca/nouvelle/1469050/maladie-orpheline-meurtriere-interesse-pharmaceutiques

https://pubmed.ncbi.nlm.nih.gov/31540977/

Lab study points to ketogenic diet as not effective for slowing glioblastoma growth?

 I spotted this, and wondered whether there are any implications for the theory that ketogenic diets can help stop glioblastoma tumours growing?

Although it's only on cells and mice, it doesn't look good for the ketogenic diet...

Glioblastoma Utilizes Fatty Acids and Ketone Bodies for Growth Allowing Progression during Ketogenic Diet Therapy

Thoughts?

18 year old APXA 2nd recurrence after treatment, immunotherapy optivo with radiation next week

 Hello and thank you for creating and adding me to this blog. Sorry for the long post.

My 18 year old son is battling a recurrence of APXA a rare high-grade brain tumor. He just had his 3rd brain surgery on August 27. This one they had to leave tumor behind due to location. This week has been tough, he is having lots of issues with spelling and writing and word finding and is frustrated, also right hand shaking when using it a lot and also very tired. The tumor came back only a little over a year after last surgery on Feb 14, 2019. He had proton radiation with TMZ and later a Mek inhibitor. Stopped TMZ as things looked good and blood counts were low.

His first surgery was for seizures as his tumor was stable for many years. It was total resection and path ganglioglima grade 1. We did not even have mri for 7 months, but when we did there was a new tumor, this one also total resection came back as APXA. EML4-Braf fusion (have not found anybody with this one) CDKN2a/2b deletion and tert mutation(this was new) When we found the recurrance on June 9, we swtiched from Mek inhibitor to a trial for 2nd generation Braf inhibitor TAK-580 but while he felt great on it the tumor grew like crazy. We went from nothing on March 9, to 1cm by 8 mm on June 9 and 3 by 4 cm August 26 day before surgery.

They want him to start PD-1 inhibitor immunotherapy along with stereotactic radiation next week. We are looking at also doing custom peptide vaccine, being offered a company in Mexico, they take tumor tissue to tempus they run genetic sequencing and then created a vaccine to be given along with immunotherapy.

He is clearly suffering from inflamation post surgery as he is having lots of issues he did not have before. He is super weak, especially right side( hand shaking on and off ) sleeping a ton. Started to have headaches this week, never had them before. I am scared on inflation immunotherapy causes.

I had him on 

longvida curcumin 400 mg tab curcubrain, boswellia extract 65% 500 mg amandean, nordic naturals ultra omega 3, papay for platelets, B complex 2 times a week his pee was neon, D3 gels 5000 but only 1 a week and probiotics daily. He also eats waffles made from flax and chia egg with lentil flour, buckwheat flour and quinoa flour with manuka honey and crackers with home made raw almond, brazil nut, pumpkin seed and hemp seeds and peanut butter. Sprouted bread toasted with garlic. Smoothie one a day cup of wild blueberry with brocolli sprouts, avocado and cacao and turkey tail mushroom powder.

I think I need higher dosages of these things from what I am reading

4 caps of longvida, should I switch brands? and on empty stomach

8 caps of boswellia not 1 like before

2 caps of rans-pterostilbene, we did not do this before I got the relentless improvement 100 mg

ultimate omega2x will give him 2150 mg omega3 and 1000iu D3, should I do more than 1 serving?

I got trans-pterostilbene and started him on it this week, i also have ashwagandha but not sure if that is needed. 

I really want to do cannabis we are in California right now and he has a card, San Francisco, if anybody can advise, would be great. We are here for another week.

Has anybody seen this type of tumor and success treating it when this aggressive?

Has anybody done neoantigen vaccine or know of someone who has we are looking at this https://clinicaltrials.gov/ct2/show/NCT04509167?term=tijuana+and+neoantigen&draw=2&rank=1

We are working with Dr. Kesari on this has anybody here worked with him.

He is also advising we do metformin, statin with all of this and then also add CDK inhibitor and mTor or Mek inhibitor. I am not sure how much his body can handle. He is 5ft 9 and 120lb now was down to 109 while on TMZ.

I welcome all advice, trying to find the right balance of what to do. He can swallow anything so pill number size not an issue. But hates trying new foods and is a super picky eater especially with healthy things and veggies, he loves hamburgers and cheetos and corn chips. I do give him grass fed 93% burgers, whole wheat buns and organic everything.

If you were able to do immunotherapy with supplements/repurposed drugs/any kind of other treatment and had success please share what you did.

Thank you again to everybody here and forgive me if some of this is confusing.

Julia

Urgent help needed - Butterfly Glioblastoma

September 12, 2020

Hi Stephen & All,

Seeking your help relating to my Mothers Brain Tumor treatment, please help with the treatments, procedures and medicines. We are in India and we have very limited access to new and emerging treatments and hardly in trails for Glioblastoma.

My mother (Age in 60's) diagnosed with Brain Tumor on April 2020, had first surgery in last week of April 2020, didn't receive any biopsy report till July and no other(Radiation & Chemo) treatment due to COVID lock down in India, July biopsy report after first surgery just mentioned possible high grade glioma, She recovered well after first surgery but in July she started having seizures and MRI in July showed recurrence and she had second surgery in first week of August but this time shes having issues after surgery due CSF leak and till now we trying to get it fixed before going for radiation, in the mean time we are looking for options we have to stop tumor growth, I think we are getting late in radiation treatment, I think if we can start chemo before radiation it may help.

As per her CT scan today her tumor is growing very fast.

Biopsy details from last month below

On IHC - The tumor cells are positive for GFAP, IDH-1 and p53, Ki67 index very high (30%).

Impression - Histological features are suggestive of  Glioblastoma, IDH-1 mutant, WHO grade IV, Corpus callosum.

August MRI - Recurrent parietal butterfly Glioma.

Please help.

Thank you

Vins

Managing skin side effects of Optune

 Prevention and Management of Dermatologic Adverse Events Associated With Tumor Treating Fields in Patients With Glioblastoma

PDF available for free download here:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7399624/pdf/fonc-10-01045.pdf

Chloroquine phase 1 trial

 Chloroquine combined with concurrent radiotherapy and temozolomide for newly diagnosed glioblastoma: a phase IB trial

Abstract

Treatment of glioblastoma xenografts with chloroquine results in macroautophagy/autophagy inhibition, resulting in a reduction of tumor hypoxia and sensitization to radiation. Preclinical data show that EGFRvIII-expressing glioblastoma may benefit most from chloroquine because of autophagy dependency. This study is the first to explore the safety, pharmacokinetics and maximum tolerated dose of chloroquine in combination with radiotherapy and concurrent daily temozolomide in patients with a newly diagnosed glioblastoma. This study is a single-center, open-label, dose-finding phase I trial. Patients received oral chloroquine daily starting one week before the course of chemoradiation (temozolomide 75 mg/m2/d) until the end of radiotherapy (59.4 Gy/33 fractions). Thirteen patients were included in the study (n = 6: 200 mg, n = 3: 300 mg, n = 4: 400 mg chloroquine). A total of 44 adverse events, possibly related to chloroquine, were registered including electrocardiogram QTc prolongation, irreversible blurred vision and nausea/vomiting resulting in cessation of temozolomide or delay of adjuvant cycles. The maximum tolerated dose was 200 mg chloroquine. Median overall survival was 16 months (range 2 - 32). Median survival was 11.5 months for EGFRvIII- patients and 20 months for EGFRvIII+ patients. A daily dose of 200 mg chloroquine was determined to be the maximum tolerated dose when combined with radiotherapy and concurrent temozolomide for newly diagnosed glioblastoma. Favorable toxicity and promising overall survival support further clinical studies.

https://pubmed.ncbi.nlm.nih.gov/32866424/

Promising Pathway Act: The most important bill ever introduced into congress for brain tumor patients needs your support!

Quote from Musella Foundation website:

This bill - if passed - will allow you to get access to many treatments quickly! It will increase the amount of research - particularly of combination cocktails, and may even help keep the prices of new drugs down!

Please visit https://virtualtrials.com/activism.cfm to find out more.

You can follow status updates here.

Unfortunately, I'm not a US resident so I can't contribute directly to get this bill passed but I hope I can contribute by sharing. 

CMV (Cytomegalovirus) - specific dendritic cell vaccine trial summary

https://sci-hub.tw/https://clincancerres.aacrjournals.org/content/early/2020/07/25/1078-0432.CCR-20-1082.long

Once, Twice, Three Times a Finding: Reproducibility of Dendritic Cell Vaccine Trials Targeting Cytomegalovirus in Glioblastoma

"We have now observed that nearly one-third of the GBM study patient population receiving CMV-specific DC vaccines results in exceptional long-term survivors."