Oligo Treatment

Hello everyone,

In a couple weeks I'll be beginning proton radiation therapy. I have a basic cocktail and diet strategy for the 6 week treatment and I wanted to run it by this blog community while also asking a few questions.

My story so far:

Focal seizure in Oct 2018.

4.5cm mass, frontal/parietal, no contrast enhancement, everything else typical for an oligo.

Surgery late Dec. GTR, no visible tumor remains.

Pathology: Grade III oligo, with 10/10 HPF mitosis, dense cellularity, moderate atypia, no vascular proliferation, no necro.

TMB 6.8
IDH1 mut
TERT mut
CIC mut
1p19q codel
P53 retained
ATRX retained
MGMT methylated

Current plan is proton+TMZ then up to 12 cycles of TMZ.

Did 1 cycle of TMZ in between surgery and radiation start.

Cocktail

Keppra, 1g x 2
Longvida, 1.6g x 2
GTE 1g (450mg egcg) x 2
PSK 1.5g x 2
Maitake, 50mg x 2
CBD  (don't have it yet, still considering dosage)
Omega-3 3g (total EPA+DHA)
Pterstilbene 150mg x2
Resveratrol 250mg x2
D3 5000 IU x2
Berberine, 600mg x3
Silymarin, 450mg x3
Probiotics via yogurt or pills (occasional, can reduce gut diversity?)
Selenium 200mcg
Melatonin, 10-20mg
Magnesium, ~200-300mg

Still trying to get
Celebrex
Chloroquine

Ketogenic diet rough plan
72h fast 3 days prior
Protein under 65g, carbs under 20g and GKI as close to 1 as possible.
1000cal per day, possible 20:4 intermittent fasts 3 days per week, alternating

Lots of walking and probably very light but consistent exercise throughout.

Questions

1) Will any of these supplements (antioxidants specifically) potentially interfere with oxidative stress on the tumor cells?

2)The majority of this cocktail and diet plan is ripped from GBM research and GBM/AA3 posts on here. Are there IDHmt/oligo specific supplements/drugs etc that I may be missing?

3) I've heard GTE can be toxic. I have Nusapure GTE and Swanson's Teavigo caps as well. What are people on here buying for EGCG?

4) Is chloroquine as promising to an oligo as it is to a GBM?

5) Is cal restriction necessary if I were regularly fasting, and vice versa? This is a bit of a grey area that I don't quite have figured out yet.

Also, as of now, I intend to save PC chemo for future recurrences. TMZ is a much less damaging chemo. My main concern with TMZ, however, is hypermutation. I'm not sure how to possibly mitigate that.

Thanks in advance.

The impact of complete resection most important for IDH-mut astrocytoma

There is an important new study, just published as an early preliminary manuscript online in Neuro-Oncology, called "The impact of surgery in molecularly defined low-grade glioma: an
integrated clinical, radiological and molecular analysis".  This was a large retrospective study including 228 adult low-grade glioma patients undergoing resection since 2003.  The tumors were classed as A) IDH-mutant oligodendroglioma (with complete 1p/19q codeletion),  B) IDH-mutant astrocytoma (no 1p/19q codeletion) and C) IDH wild-type (GBM-like).

The most important finding of this study was that complete resection (0 residual tumor), was most critical in the IDH-mutant astrocytoma group, as seen in the following figures.  In the first figure shown below, even a small amount of residual tumor post-resection negatively affected survival for IDH-mutant low grade astrocytoma.

The next figure also shows outcomes for IDH-mutant low grade astrocytoma, by various amounts of residual tumor post-resection.  (My snip only shows the first 3 images in the series). 

The next figure shows that complete resection also improves survival in low grade IDH-mutant oligodendroglioma, but the difference in survival between 0 residual tumor and small amounts of residual tumor is not a large as for the astrocytoma group as we saw in the first figure.

The abstract is available here.  I can email the full study if anyone wants it.

Oligoastrocytoma grade 3, progression, next steps?

Hello all and thank you for this great community!

My sister (30yrs) was diagnosed with anaplastic oligoastrocytoma GIII a year ago. This was a reoccurence, since 5 years ago it was oligoastrocytoma grade 2. Back then she received surgery + 8 cycles of TMZ.
This latest one was partially removed in surgery (it's in temporal lobe). She received RT + TMZ (60Gy, 30days) and after that she has completed 10 TMZ cycles. Latest MRI showed that there might be tumour progression, but it's not definite according to doctors. Next scan will be in two months. Until then she will continue on TMZ for two cycles more.

We're a bit concerned since part of the tumour is still there even after RT and chemo and it might be progressing.
PAD report says: IDH1 negative, mitosis 33/10 HPF, MIB activity 25%,
Previous tumour showed 1p19q deletions.
We have asked for a more specific analysis of the tumour and will receive results in couple of weeks (MGMT, EGFR, etc.).

Until then, our NO recommends to continue with TMZ and see what MRI shows in July.

We have plans to try Keytruda or other aPD1, what's your view? Or is there some other sytostate (CCNU, PCV) we should try before aPD1 ?

Her clinical condition is very good so we try to balance between good quality of life and try to treat this when there's better changes for that.

Supplements she currently takes:
-D3
-Selenium
-Longvida Curcum
-Probiots (L. Casei et al.)
-Leveriacetam

br and thanks,
Juha

Kelly Hauf, Cannabis Oil, low grade glioma

Hi again,

I'm wondering if anyone has looked into the Kelly Hauf story? She put a Oligo recurrence into remission with an intense cannabis oil protocol over a period of 8 months. I've been talking with her via Facebook and her story really seems legit. Her surgeon was Mitchel Berger and she also worked with Dr. Butowski who advises Cheryl Boyle on cannabis use too.

I don't have a specific question really. Just wondering about your thoughts on her story.

Oligo 2 meeting with Patrick Wen

Hello,

I met with my NO Dr. Patrick Wen who is director of Dana Farber NO department yesterday. While I 'm stilling awaiting surgery, and therefore pathology, Dr. Wen feels my tumour is most likely an Oligo 2. It is 3cm in left left frontal lobe. I'm 35.

Dr. Wen told me most of these will recur around 10 years (for this location, size, my age, and depending on resection, etc). He also said he believes it's not unrealistic to think that by then there'll be an effective therapy to stop IDH mutant tumours from growing, essentially turning it into a chronic condition. He has a low grade patient (or more) who he was meeting with before me who has been on and IDH inhibitor for a year and a half now. Those seemed to be most promising to him.  He also mentioned PARP inhibitors and a number of other promising agents. He named about 6, including demethylating agents which seemed like a new idea.

I thought I'd share, because it was really helpful to me. He is very optimistic. He said that all of NO is focused on this mutation right now.


I know that's not useful to others without the mutation. Sorry.


I also thought I'd share his video addressing the recent WHO reclassification of these tumours. Most people on here  probably know this but on other blogs it seems a lot of people do not. Their type of tumour may have been essentially misdiagnosed all along.

http://www.practiceupdate.com/content/new-classification-scheme-for-low-grade-gliomas-clinical-implications/33428

It's my understanding that there is no longer a grey area. You must have co-deletions and IDH mutation to have an Oligo. Without the co-deletions it's an Astrocytoma and without IDH mutation it's a glioblastoma. I often see things that read "80% of Oligos have co-deletions (or IDH mutation)" but you can no longer be diagnosed with an Oligo if it doesn't have these characteristics. Grading is then related to not yet malignant (low grade) or malignant (high grade). I also believe they can lose their co-deletions, progressing to and Astrocytoma but are not likely to lose the IDH mutation. Maybe Stephen, or others, will be gracious enough to let me know if I have this correct.

I'm curious to know how likely Pligos are to lose their co-deletions upon first recurrence. I'm not sure this information is available.


Maria

DCvax-l info for phase 1/2 low grade glioma

Does anyone know the status of these studies? Has any information been released at all? Also, word of a phase 3?

Thank you.

Hypermutation Risks of Temodar

Hi all,
I've found great value in this blog and am posting for the first time.

I was diagnosed in march 2016 with grade 2 oligo.  Its a somewhat larger tumor, about 7x6x5cm and unlike most oligo's is not in the frontal lobe, but is left parietal and overlapping motor, sensory and speech areas and nearing midline crossover.  Because of all that it was considered a high risk surgery zone and so I have so far only had a biopsy and have been doing chemo.   I'm IDH1 mt, mgmt meth, 1p19q codel, ATRX normal, p53 normal.

So the broad plan was chemo then RT.  The hope was to shrink the tumor to be able to reduce the RT zone. So far 6 rounds of Temodar but I have now switched over and done 1 round of CCNU after having learned more about hypermutation risks with TMZ.

I've dug thru what published data there is and its all clear as mud.  On the one hand the 2014 Science paper (Johnson et al from the Costello UCSF lab) that seems to have really launched this topic found very clear and scary linkages showing hypermutation and upgrading at recurrance to GBM in about half of the patients treated with TMZ vs none with only RT, on the other hand it was a very small data set, had mixed genetics, was clearly a selected dataset and not randomized, and only looked at TMZ alone or RT alone, not the more common RT+TMZ.  The few other studies I have found add some implications that mutations in TP53 and mismatch repair genes  increase the risk, though some data also shows TMZ driving mutations of TP53 and MSHx which then creates the path to hypermutation.

In simplified terms if chemo mutates the cancer to a point where the 'self check' mechanisms during cell division stop working then the next time the cell gets hit with chemo it will go ahead and replicate in spite of the genetic damage from chemo and create new set of mutations.

To further complicate the picture most of the historical data looking at different chemo options is comparing PCV to TMZ, but procarbazine is a monoalkylating agent that is quite similar to TMZ.  So I've gotten some input from Doc's that CCNU alone may be less mutagenic because it is a bi-alkylating agent and will more effectively stop DNA replication thru double strand breaks.

So Steven or others who are into the science side of cancer, do you have any thoughts on how to unravel all this?  Recommendations on other approaches to consider, or ways to enhance effectiveness of chemo for low grade cases?

Thanks,
Bryan

SW edited this post to include the image below, from a presentation at the 2016 SNO conference in Phoenix Arizona:

New study on subgroups of 1p/19q codeleted oligodendrogliomas

Uploaded to the library, folder 6 (Pathology)

Click here to view abstract

MRI revealed new tumor growth despite being on TMZ. Please help! Need some advice on what to do!

 My husband is 33 y.o. and has been battling a reoccurrence since july. His tumor is oligoastrocytoma grade 4 (as of 5 years ago with first tumor biopsy). He has been taking 450-455mg of TMZ since august on the 5/23 schedule. His tumor was huge and has been shrinking since we strated TMZ, metformin, Celebrex (on and off) and a bunch of supplements. However today's MRI Revealed a new tumor growth that is being resistant to TMZ (decembers MRI did not have new spot).

Doctor suggested adding Avastin to the current TMZ dose and schedule of 5/23, or doing Avastin with CCNU, or going to Dana Farber in Boston for clinical trials. We feel a little lost! My husband read a while back that Avastin had a lot of bad side effects, so he is affraid of that (quality of life and at the end not work either), and he is affraid that once he start avastin he is not longer qualified for a lot of clinical trials. So Doctor suggested to try a clinical trial first and then go to avastin if it doesnt work.

What are your opinions? I don't know much about clinical trials and don't even know what questions I should be asking. Do you guys have any suggestions on that and questions I need to ask?

How many of you are taking Avastin? How well are you tolerating it? Can Avastin put cancer into remission?  What other drugs should we use with avastin to synergize its effect on cancer?

Do you recommend clinical trials or just going with avastin and other off label meds?

I really appreciate if you give me some info or advice! Thank you very much for your time!

Matjaz's cocktail - grade 2 Oligodendroglioma

Hello all!


Ok, so here is my cocktail and a little backstory:


because of mild headaches at back of the head/in the neck that started in February 2015 I was sent to MRI (neurologist was suspecting some kind of vertebrae deformation) in May 2015. It unexpectedly showed tumor in right temporal lobe (premotor cortex, some of it in insula) - while I was waiting to get the MRI the headaches went away, so it was kinda incindental discovery.


Underwent awake surgery with 100% resection with small safety margin of healthy tissue around the tumor. Tumor volume around 8,5 cm^3, pathology showed "grade 2 oligodendroglioma, IDH mutated, cells do not express GFAP , Neu N, internexin a and p53. The expression of ATRX is retained. Absence of overexpression of cMet . The Ki67 proliferation index is estimated at 1%. 1p/19q codeletion and no EGFR overexpression"

Surgery and following MRIs:

1st December 2015 - Complete Resection which is also confirmed with MRI ~30 hours after surgery
March 2016 - Clear MRI, small area of scar tissue
September 2016 - No change


My cocktail (for long term maintenance) at the moment is:

5x 600mg Mushroom Science Coriolus Super Strength
1x 4,5mg LDN
1x 5000 IU Vitamin D3
2x 850mg Metformin

4x 500mg Nutrivene Longvida Curcumin
2x 1000mg Super Omega 3

1x 200 mcg Selenium
1x 10mg Melatonin
17 mg/kg/day DCA (discontinued for 6 months or so because of  neurotoxicity - on Visual Evoked Potentials exam there was significantly lower nerve conductivity as should be, probably because of ~9 months DCA administration).


The post is updated regularly after every MRI (every 6 months for now). Also I am verry happy to receive any suggestions or answer any questions!

Best regards,
Matjaz

Danny Mercer Maintenance Cocktail

Updated 8-25-15: Here is a brief summary of my profile and my current maintenance cocktail. Feedback would be appreciated.

Diagnosed and sub-total resection Nov 2010. 4cm, right parietal/occipital grade 2 Oligodendroglioma; 1p/19q deleted, IDH1 mutation, CIC mutation, TP53 mutation. Standard radiation protocol and 8 rounds of Temodar. No change in tumor during, after, or since treatment. Makes me wonder if the aggressive approach was worth it.

Keppra: 500mg 2 times daily
Vimpat: 150mg 2 times daily
Metformin: starting with 250mg 1 time daily
Curcumin Longvida: 1000mg 1 time daily
Coriolus Versicolor (40% PSK): 600mg 1 time daily
D3: 5000 IUs 1 time daily
Melatonin: 5mg 1 time daily
Cimetidine: 200mg 1 time daily
Ritalin LA: 40mg 1 time daily (for fatigue)
Low glycemic diet (though not radical about it, just avoid refined sugars and high glycemic fruits)
Celebrex: (still deciding whether to take it)

Electrolytes Awareness: (Sodium, Magnesium, Potassium, Calcium-seem to help with aura seizure activity)