Here is the detailed timeline of my husband's diagnosis with GBM.  I need help!

My husband is a 47-year old International Airline pilot who was in perfect health prior to his diagnosis in April.  After two surgical resections and 6 weeks of RT/TMZ, he is now taking daily TMZ on a metronomic schedule.

3/31/18	Presented with acute aphasia and vision loss, medevacked to Palmetto Richland hospital (Columbia, SC) tumor was discovered in left temporal lobe
	MRI (missing report details)
4/2/2018	TRANSPORTED TO MUSC, CHARLESTON, SC
4/4/2018	SUBTOTAL RESECTION OF LEFT TEMPORAL MASS performed at MUSC, Charleston, SC
4/5/2018	MRI BRAIN W/WO CONTRAST
	Status post subtotal resection of left temporal mass with residual enhancing tumor along the medial margins of the resection cavity measuring approximately 2.4 x 3.3 cm. Additional enhancing satellite nodule along the posterior inferior aspect of the resection cavity compatible with residual tumor. Similar mass effect and partial effacement of the left lateral ventricle with 5 mm rightward midline shift.
4/6/2018	NEUROPATHOLOGY REPORT - DIAGNOSIS: GLIOBLASTOMA MULTIFORME WHO GRADE IV
	(PARTIAL COMMENTS FROM REPORT DATED 4/6/2018) Date Collected: 4/4/2018 15:05 Diagnosis A. BRAIN, LABELED AS "TUMOR", RESECTION: · GLIOBLASTOMA MULTIFORME, WHO GRADE IV · IMMUNOHISTOCHEMICAL STAINS: o IDH-1: NEGATIVE o GFAP: POSITIVE o SYNAPTOPHYSIN: NEGATIVE o KI-67: PROLIFERATIVE INDEX OF 10 % B. BRAIN, LABELED AS "TUMOR", RESECTION: · GLIOBLASTOMA MULTIFORME, WHO GRADE IV
4/19/2018	MRI FUNCTIONAL BRAIN
4/20/2018	MRI BRAIN LAB WITH CONTRAST
4/20/2018	Surgical Resection performed by Dr. Allan Friedman, Duke
	Loss of right peripheral vision in both eyes post surgery
4/21/2018	MRI BRAIN W/WO CONTRAST
	FINDINGS:  Postoperative changes of left temporal craniotomy with subjacent resection cavity within the left temporal lobe demonstrated. Surrounding increased signal on T2 weighted imaging is unchanged. There are blood products along the margins of the resection cavity. There are small areas of superimposed contrast enhancement along the posterior margin (series 12 image 90),medial margin (series 12 image 95), inferior margin (series 12 image 81), and superior margin (series 12 image 101). The areas of residual contrast enhancement are largely improved from intraoperative MRI. Trace extra-axial fluid and dural thickening at the craniotomy site. There are expected postoperative ischemic changes surrounding the margins of the resection cavity. No hydrocephalus. The basal cisterns are maintained. Intracranial flow-voids appear normal. The orbits, mastoid sinuses, and visualized paranasal sinuses are unremarkable.  IMPRESSION: Status post left temporal mass resection with foci of contrast enhancing tumor along the margins of the resection cavity.
5/17/2018	Day 1 of 6 week  Radiation/ Temozolomide therapy (MUSC, Charleston, SC)
6/4/2018	SEIZURE (occured 2 days after gradually stepping down Dexamethasone to 0mg/day)
	- MRI & CT scan performed
	“Postsurgical changes of subtotal resection of left temporal mass with increased size of the resection cavity and likely increased local mass effect with entrapment of the temporal horn of the left lateral ventricle and slightly increased medialization of the left uncus. The component along the resection cavity demonstrating elevated CBV has decreased in size from prior studies. Overall, these findings are suggestive of evolving post-treatment related changes with persistent residual tumor.Stable 5 mm rightward midline shift.”
	- Increased dose of Keppra to 1g 2x day
	- Increased Dexamethasone to 6mg 2 x day (to gradually step back down)
6/8/2018	MGMT GENE METHYLATION ASSAY - “GENE METHYLATION NOT DETECTED”
6/8/2018	PATHOLOGY - GENERAL/OTHER - “ NEGATIVE FOR IDH1 R132H MUTATION”
6/27/2018	Completed 6 weeks of Radiation/ Temozolomide treatment
7/11/2018	SEIZURE (occured 2 days after gradually stepping off dexamethasone)
	- MRI & CT scan
	“ADDENDUM: Similar appearance of a linear area of incomplete filling in the posterior superior sagittal sinus. This has been present on multiple prior studies, including the patient's original outpatient imaging and may reflect an underlying dural reflection or potentially chronic sequela of remote partial filling defect. No occlusion of the sinus flow is seen. IMPRESSION: Posttreatment changes from subtotal resection of left temporal mass with persistent residual tumor and slightly decreased size of the resection cavity.Slightly increased vasogenic edema predominantly along the left insular region. Stable 5 mm rightward midline shift and early left uncal herniation. No acute infarction.”
	- Increased Keppra to 1500mg 2 x day
	- Increased Dexamethasone back to 6mg 2 x day
7/13/2018	FOOT DROP IN LEFT FOOT (possible stroke during seizure, MRI of spine schedules for end of month)
7/27/2018	MRI BRAIN W/WO Contrast
	“Extensive irregular enhancement of the resection cavity extending to the ependymal surface of the left lateral ventricle, appearing slightly increased in size. Significant increase in relative CBV within areas of enhancement and nonenhancing T2 hyperintensity. There has however been interval reduction of overall mass effect and rightward midline shift.”
8/1/2018	DAY 1 METRONOMIC TEMOZOLOMIDE (100MG/DAY)
	STARTED DISULFIRAM 250MG/DAY + COPPER 2MG/DAY

MEDICATIONS & SUPPLEMENTS:

NO Rxs:

- Keppra: 1500mg 2 x day (dose has increased 2 x after seizures)

- Dexamethasone: 6mg / day. (dose has varied due to seizures)

- Temozolomide: 100mg daily (metronomic schedule)

OFF LABEL RXs:

- Minocycline:  100mg 2 x day (May 17 - present)

- Metformin; 500mg 3x day (escalted to current dose starting May 17th)

- Chloroquine: 250 mg (May 17 - present)

- Disulfiram: 250mg / day (August 1 - present)

SUPPLEMENTS:

- Copper: 2mg (taken with Disulfiram)

- Milk thistle: 1000mg 2 x day

- Curcumin (Longvida): 1600mg / day

- Fish Oil: 1000mg / day

- Boswellia: 3g / day

- Turkey Tail (PSK): 3g/day

- Soy Isoflavones (Genistein, Daidzein, Glycitein) ?mg. 3 gelcaps/day

- Melatonin: 20mg at bedtime

- Vitamin D3: 10,000 IU/day

- Selenium: 200mcg / day

- Pterostilbene: 450mg / day

- Green Tea Extract: 750mg 3 x day

- CBD oil (Palmetto Harmony): 1ml 2 x day

QUESTIONS:

1.  MEDICATIONS AND SUPPLEMENTS: Are there any others medications or supplements I  should add  to his cocktail at this point (currently 

doing 100mg temozolomide, daily)

 - Celebrex?  I had this on my list, but I had trouble filling the Rx

 - THC ?  He is currently taking CBD oil, but wanted to refrain from the THC bc he is still an active Reservist in the US AF. 

2. Dexamethasone - We have tried taking him off steroids twice, both times resulting in seizure.  I have read that dexamethasone can inhibit the effectiveness of chemotherapy, but he obviously continues to struggle with swelling.  Any thoughts?  

3. UNDERSTANDING THE PATHOLOGY, BRAIN BIOMARKERS, ETC

• MGMT GENE METHYLATION ASSAY - “Gene Methylation NOT detected” = UNMETHYLATED
• NEUROPATHOLOGY REPORT:
• Date Collected: 4/4/2018 15:05
  Diagnosis
  A. BRAIN, LABELED AS "TUMOR", RESECTION:
  · GLIOBLASTOMA MULTIFORME, WHO GRADE IV
  · IMMUNOHISTOCHEMICAL STAINS:
  o IDH-1: NEGATIVE
  o GFAP: POSITIVE
  o SYNAPTOPHYSIN: NEGATIVE
  o KI-67: PROLIFERATIVE INDEX OF 10 %
  
  
  MICROARRAY COMMENT:
  1p/19q co-deletion - Not detected
  +7/-10 - DETECTED
  CDKN2A/B homozygous deletion - DETECTED
  EGFR amplification - Not detected
  
  

• BRAIN BIOMARKERS (IHC, FISH):
• IDH1:  NEGATIVE, R132H IDH1 MUTATION WAS NOT DETECTED.
• EGFR does not exhibit amplification.
• EGFR RECEPTOR IHC ANALYSIS:Approximately 50% of the tumor cells exhibit 2+ staining of their cell membrane (score 2+), indicating that they DO express epidermal growth factor receptor.
• EGFR VIII IHC Analysis:  none of the tumor cells exhibit staining for EGFR VIII (Score= 0)
• IDH1 IHC Analysis:IDH1 mutations result in a histidine at codon 132.  An antibody specific for the IDH1-R132H mutation is NEGATIVE
• Brain IHC Analysis:

D2C7 IMMUNOHISTOCHEMISTRY ANALYSIS:

Approximately 70% of the tumor cells exhibit D2C7 detectable EGFR staining of their cell membrane (score 2+), indicating that they DO express at least some portion of the epidermal growth factor receptor protein.

POLIOVIRUS RECEPTOR (PVR) IMMUNHISTOCHEMTRY:

Approximately 90% of the tumor cells exhibit 2+ staining of their cell membrane (score 2+). The endothelial cells stains positively (3+) and serves as a internal control.

• TERT TARGETED MUTATION ANALYSIS: Positive.

TERT promoter mutation detected (C228T, c.-124C>T). 

CAN SOMEONE PLEASE HELP ME UNDERSTAND THESE FINDINGS?

I understand the implications of his tumor being UNMETHYLATED, but I am struggling to understand the rest of it.

Also, I am waiting on the results from Foundation One, and hope those results prove useful.

Yes or no on antidepressants?

Hi everyone,

I am finding some conflicting information on whether antidepressants with seratonin can contribute to progression. My husband is on a small dose of sertraline (Zoloft) every day. Is this something we should hold? I have for now as the dose is very small...

Any natural antidepressants that might be worth trying?

Thanks!
Abby

This just in... Looks promising !

https://corporate.dukehealth.org/news-listing/duke-team-finds-missing-immune-cells-could-fight-lethal-brain-tumors?h=nl

New to the blog.  Many thanks to all who share their experiences with brain tumors.
I’m curious if anyone has information on BMQ-350.

12 cycle vs 6 cycle adjuvant TMZ?

My husband is finishing up cycle 4, our medical provider (Kaiser) does six rounds, so I'm curious if there's any benefit to seeing if more is better.

I know this was discussed in 2017 - Stephen posted a link to an Indian study/review article that said 12 cycle had improved PFS/OS but with big caveats about how more studies were needed.  I've now seen a more recent study looking at the comparison between 6 and 12 Extended Dosing (12 Cycles) of Adjuvant Temozolomide in Adults with Newly Diagnosed High Grade Gliomas: A Review of Clinical Effectiveness, Cost-Effectiveness, and Guidelines seem to draw similar conclusions, though a couple of studies in Spain say that 12 cycles is a better choice for older patients or patients with AA (not GBM).

At the time Stephen's thoughts were to 1) go for 12 rounds (or possibly more if tolerated) if the tumor is methylated and if there weren't financial means to pursue immunotherapy, and 2) with an unmethylated tumor and financial resources, stop at six rather than continue to build toxicity to bone marrow and blood counts.  Since we fit in the latter category I'm thinking that the six is fine, but I wanted to see if anyone here had additional thoughts or concerns.  We have no additional tumor tissue (biopsy surgery only) and didn't have the right markers for the CAR-T treatment at City of Hope, so I'm not even sure if there are vaccine options to realistically pursue.

Thoughts?

GBM diagnosed Sept 2017, options in the UK/ Europe

Hi Stephen
I'd be very grateful for your guidance.

My husband 55 was diagnosed with GBM Sept 2017
Only symptom lost left peripheral vision and 'pepper smells'
Neuro-oncologist said it was a very large tumour and Joe had been able to adapt to very well without any major symptoms until now...

GBM right temporal&frontal&close to right MCA
Partial debaulking temporal lobe

Usual chemo/radio 6week treatment
Usual chemo 6cycle treatment

Joe had a major stroke close to GBM area, after cycle5 so treatment stopped.
At stroke unit last 8 weeks.
Much better and left side paralysis improved.

Currently on:
Keppra 500mg x2
Clopidogrel 75mg alternate days
DEX 16mg/day 02 Aug
12mg/day 09 Aug
**Stroke dr put him on DEX to see if might improve his movement.
Oncologist said OK to try...
It hasn't made any noticeable difference.
They're weaning off DEX by 4mg/week.
I'd like to reduce faster safely to avoid too much DEX build-up in body. 

Recently, Oncologist said last MRI seems to show new growth according to Prof NeuroRadio however surgeon at meeting is not so sure and suggests MRI shows damage from stroke/treatment?
Oncologist says he has nothing more to offer so now we are on our own.

We would be very grateful for your recommendations please.
We live in LondonUK/Portugal and have family connections to Drs/Pharmacists in Portugal should you recommend anything that might be harder to source.

I found your website following an article I was reading re Ben Williams.

We worked so hard to retire in our 50s and now we're ready, we both get hit by cancer... but we're strong and positive and won't give up! 
Tiredness makes it hard for us to do the necessary research needed...

Please can you give us suggestions of what you would recommend might be the best protocol for my husband to follow?

Many thanks,
Jane

Following on from my post sent moments ago about Joe's GBM I forgot to add:
MGMT unmethylated
IDH1 no mutation
ATRX likely retained

Stephen W14 August 2018 at 11:30

Your husband's oncologist appears to have a limited toolkit if he's not able to offer any salvage therapy.

If true progression is confirmed, and you're able to travel, the following European trials are interesting:

https://clinicaltrials.gov/ct2/show/NCT03294486 (this is a French trial, and not dissimilar in principle to the Tocagen therapy offered in North America, Toca511+ FC)

https://clinicaltrials.gov/ct2/show/NCT02866747 (also in France, a trial of hypofractionated radiation with or without immune checkpoint inhibitor durvalumab)

There are trials recruiting in the UK and Spain for EGFR-directed antibody-drug congjugates, if his tumor if his tumor is positive for EGFR amplification (was this tested?).

There are also trials in the UK and Spain with immune checkpoint inhibitors for advanced solid tumors. Of all these trials I like the first one mentioned above the best (the oncolytic virus/gene therapy trial in France).

Do you have any other pathology information beyond the MGMT, IDH1 and ATRX results?

Hi Stephen,
Thanks so much for your quick and considered response.

I am totally ignorant regarding trials and bit anxious..
Is your preferred trial the first of its kind on humans or does it have evidence of success?
Statistically relevant?...
Please forgive my ignorance..

Joe's oncologist has tried various options with other patients, but is reluctant to offer anything for Joe.
When I queried about possible immunotherapy, he replied it could cause terrible diarrhoea and that Joe wasn't fit enough to do it?
He said he could suffer terribly, lose 10kg and he's not happy to do it to someone as sick as Joe...?

Joe's not underweight for his height, but maybe he is referring to his recent stroke and left side partial paralysis?
I will enquire about this again..

He said he could offer Bendamustine to Joe but that he doesn't really like it.
He said he's tired of giving standard care and it not working and that he's pushing forward to change this in near future.

This is his profile which I think looks quite impressive? www.uclh.nhs.uk/OurServices/Consultants/Pages/DrPaulMulholland.aspx

I will ask oncologist if there is any more pathology test results for Joe.
Which pathology tests would you recommend I ask Joe's oncologist please?

Also, do you recommend Joe follows any
Repurposed drugs like Prof Williams?
Or supplements?

Many thanks, I'm very grateful for your time and support
Jane

What cocktail should we start with?

Hello everybody!

My mom was operated for a brain tumour and diagnosed with GBM on July 24th. She is scheduled to start radiation and chemo on August 14th.

Ever since the diagnosis I've been researching continuously. There is too much information to process in such a short amount of time so I come to you for help...

I am trying to put together a startup cocktail that will work best with radiotherapy. So I'm looking to first add items:

• that have been proven to be most effective. I can add the ones that are less effective later.
• that are relatively easy to access in Romania or the EU.

Thank you and best wishes to you all.

Report on the treatment of 15 patients in the IOZK clinic.

The IOZK clinic in July 2018 published an article with information on the treatment of 15 patients.
Some of the details seemed interesting to me.

The first 10 patients (in the table) were treated using vaccines based on dendritic cells:
- Of these, 3 patients survived 18, 22 and 10 months. By the way, the patient, who survived 18 months, used the CUSP9 protocol.
- The remaining 7 patients continue treatment. However, of these 7 patients with no progression, only 2, with a result of 27 and 17 months without progression after surgery. In others, the tumor slowly progresses.

Also, we see that 3 patients out of 15 used perillol alcohol (POH).

http://www.iozk.de/aktuelles/iozk_glioblastoma_immunotherapy_austin_oncology_report_2018.pdf

"The median PFS was 13 months. Median OS was not reached with a median follow up of 17
months (rang 4-30 months). Estimated overall survival at 30 months was 58%..."
"DC vaccinations have been given after the chemotherapy. The obvious reason is that temozolomide might affect T cell proliferation and hence the anti-tumoral immune response upon DC vaccination."
Does this mean that it is better not to combine the Stupp protocol with the DC vaccine in the same period?

newly diagnoised with GBM

Dear stephen,thanks for adding me to the blog. This blog is very informative for me.I am from IRAN and I has been recently diagnosed with GBM.I have not had a biopsy or surgery yet.But I am in the list of hospital and they will call me for operation during this month.My neurosurgeon is so skilled and told me it is a GBM-multifocal tumor.I have some questions.

1. I am about to have a surgery,what should I do before that to get best result of surgery?

2. I have planned for a cocktail:

-verapamil ,3 days before chemo,during chemo days and 3 days after chemo.

-melatonin daily at bedtime.

-tamoxifen 

-hydroxy chloroquine sulfate

-accutane

-cimetidine

-celebrex
-aspirin

-and some supplements like vitamin D3, curcumin,selenium and...

I have some question about my plan:

• how should I put them in 4 bunches?for example in the morning I have a bunch,for lunch I have a bunch and also for dinner and bedtime.
• Are these all drugs for just chemo cycles?which of them can be used during radiotherapy?
• which drugs should be continued after chemo and radiotherapy?
• I have a problematic issue in my plan.I want tamoxifen and also cimetidine.But there is a severe interaction between them.How can I solve this problem.
• Is my plan good at all?any suggestion is appreciated.thanks all of you.

R-lipoic acid

That was discussed in previous posts, but I am still confused.

In the paper by Schwarz et al http://crescopublications.org/pdf/crooa/CROOA-2-019.pdf they write on the following treatment

Unless specified the metabolic treatment was: i) 800 mg lipoic acid bid(Solgar, Leonia, NJ, USA)500 mg HCA tid (Solgar); and5 mg naltrexone (Revia; Bristol-Myers Squibb, Rueil-Malmaison, France) at bed time.

But I could not find any product with the R-lipoic acid by Solgar. Also,  for Patient 6, they write

She was treated with α-LA (600mg), 500 mgHCA i.v.tid and low-dose naltrexone.

but, for instance, for Patient 9

In early March 2013, this started 2g sodium R lipoate per day, as well as 500 mg HCA, 3 times per day.

that suggest R-lipoic form.

Does it mean that the form of ALA has been different? I am not sure which form of ALA should be preferred.

This just in:

medpagetoday.com

ASCO Reading Room | Addition of a Personalized Vaccine to Standard Therapy in Glioblastoma

 

What to add to Irinotecan + Avastin

Hi everyone,

I have a few questions I was hoping I could get some opinions on. My husband is receiving treatment for his second GBM recurrence-- currently on irinotecan and Avastin. I'm feeling unsure of what I can combine with this and I have a few specific questions:

- Is it safe to add Accutane? I have read on this blog that it could affect chemotherapy treatment but is that still the case with irinotecan since it uses a different mechanism?

- Would it be wise to consult with his doctor about adding the ALA-hydroxycitrate-naltrexone  treatment in addition to this?

- At what point do you change up additional treatments or supplements? He was using POH with a nebulizer but we stopped that after progression and I'm just not sure if we should continue it. Same with other supplements and prescriptions he has been taking. For instance, I'm not sure if he should continue taking metformin or if he should up the dose? (currently 500mg twice a day).

I'd be interested to hear anyone's experience with irinotecan/Avastin. So far, he's tolerated it well and it has improved a number of his symptoms but he has experienced some confusion and he will be getting an MRI soon. I'm desperately seeking clinical trials that he might qualify for but between the Avastin treatment, his speech issues and the fact that he'd technically be on his third recurrence by the time he's even eligible for a trial, our options for anything promising are incredibly limited. His doctors have told me that a vaccine type of therapy might be the most effective. I'm considering IOZK after reading some posts about it here and doing some research.

My husband is 32, we have two young kids and I fear that we are quickly running out of options. Thank you again to all who share here!

Abby

Herbal remedies for brain tumors?

Hello,

I was recently diagnosed with a low grade (grade 2) diffuse, infiltrating astrocytoma.  I am probably in the best situation possible (male <35 years of age), the tumor was in my right frontal lobe and not near anything critical, the neurosurgeon was able to achieve a total general resection with no deficits or complications after surgery.

However, after reading through some literature I became intrigued by this paper on herbal therapies for patients with poor prognosis brain tumors: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5809810/ which seems to have helped a few patients that had a much worse prognosis than I do.  

I was curious to know if anyone on the forum has come across this paper or tried similar herbal remedies?  My main concerns are: 

1. I don't know how to evaluate whether or not the authors are reputable or qualified for this kind of research, does anyone have any insight on how to do so?  I know the study is not meeting the standard for a true medical trial since there is no control group, etc. but I'm willing to give it a try if at least the authors/source of information is somewhat reputable. 
2. Getting the herbal remedy right, I did reach out to the author and they are willing to ship their herbal remedies to the US for a fee and they recommend taking the treatment continuously for ~1 year based on their ongoing research.
3. I'm not sure if anyone has tried similar herbal remedies with any success? 

If you could answer any of my questions it would be great.  Please do reply to this post if you can. 

Thanks! and of course, wishing you health and happiness. 

Right to Try (for U.S. patients/advocates)

Hi guys,

I'm wondering if anyone here has pursued the Right to Try law here in the United States? Searching the blog, I couldn't find anything...

My brother is living in Texas where the law has been passed and I've obtained the document provided by the organization website to present to his doctors. (The document is linked here under "How do I initiate a request?" or here is a Google Doc version I uploaded which is the exact same)

James would like to try DCVax-L, if possible.

In order to produce the DCVax-L vaccine, you need to supply fresh or preserved tumor tissue. I've contacted the drug company, Northwest Biotherapeutics https://www.nwbio.com/) and was told:

"In order to manufacture DCVax-L, we usually require 2-3 grams of frozen tumor tissue, although we have worked with less in certain circumstances.  The tissue must be stored frozen without any chemicals or preservatives and not in saline or blocks of paraffin."

I've confirmed that the tissue from his previous resection has now been transferred to paraffin so is unusable.

James's doctors have already said another resection is not advisable due to the location of his tumor progression. However, assuming we could get a biopsy to have some fresh tissue, I'm wondering if this would be a block for his doctors to go ahead and pursue the Right to Try submission to the drug company.

Would they be likely to submit the document and start the legal process if we don't even have the tissue?

It would seem foolish to do a biopsy if we weren't for sure going to be a candidate for the vaccine.

(Again, I'm unsure if a biopsy is possible at the moment but should find out this week.)

Additionally, I requested more information from NWBio about the Right to Try law and she didn't address it with detail, but just assured me that without tissue, nothing could be done.

Does anyone here have experience with kickstarting this Right to Try process? Any tips or advice would be much appreciated.

Link to my first post outlining James's current condition for context.

The trembling of the hands and the change in facial expressions when falling asleep

My mom's hands are moving and her facial expressions change when she falls asleep and sometimes in a dream. She does not remember this. It looks a little scary.

Half a year my mother took valproic acid (Depakin) 500mg a day. However, a month ago an electroencephalogram showed the absence of an epileptic activity and we stopped taking it. Perhaps, the trembling of the hands and facial expressions when falling asleep increased.

What could this mean?

Fungal lung infection (cryptococcus) - anyone had this?

My husband was diagnosed with a fungal lung infection that's supposedly common for immunocompromised patients...but I've not seen much mention of it in conjunction with GBM.  In some cases, the fungus can enter the brain via cerebrospinal fluid, possibly leading to meningitis. 

The prescribed medication for the non-CSF version is a six month course of Fluconazole, which can impact liver function.  I'm guessing this may mean our NO won't proceed with additional 5/23 cycles (cycle 3 just completed, will hear about the MRI on Thursday), but the NO and the infectious diseases physician are still trying to figure out how to proceed.  Anyone have experience with this set of circumstances?

Seeking Update on Experiences with Dendritic Personalized Vaccines in Germany

I have begun researching personalized dendritic vaccines in Germany and have found several clinics which offer them (some from this blog). I would be incredibly grateful if people would share/update their experience with dendritic vaccines. In particular, I am hoping to learn:

Which clinic you or your loved one sought treatment at?
What stage of illness you sought treatment (post-surgery, post-recurrence)?
Whether treatment was effective and if so for how long?
What the clinic used to produce the vaccine (fresh sample, paraffin sample, blood sample, etc...) .

Clinics I have begun looking into include: IOZK, Unifontis/Dr. Drevs, Hallwang, NextGen Oncology, CeGat and Praxisgemeinschaft/Dr. Nesselhut.

I am seeking treatment for my husband who is 53 yo. We live in the U.S. and have 2 children. This is my first time posting and I want to express my immense gratitude to all who have posted. It has been an incredibly helpful and sustaining resource. My heartfelt compassion to all of you.

Lomustine Side Effects

Hello everyone,

New here, but have been reading since last Februrary when my brother, James (33 at diagnosis, 34 now, married with 3 kids under 6), was diagnosed with Stage 4 GBM. He had a full resection in March of 2017 at UT Southwestern in Dallas and had the standard of care with TMZ + radiation. He also followed a loose ketogenic diet and was doing some supplementation then (I'm not quite sure what - we don't live in the same state so my mom is our "middle man" in communicating everything to me!). He then enrolled in a clinical trial to receive Nivolumab in combination with chemo.

James tolerated this treatment well in terms of side effects, but was kicked out of the trial when he showed regrowth.

His doctors recommended to put him on Lomustine. He was nervous about the possibility for severe lung side effects and decided to forgo taking this chemo (this was a few months ago). He took a trip to Italy with his wife, ate what he wanted and really had a good time.

Upon return, his next MRI showed aggressive growth and growth in what was once a "spot" but now is clearly a tumor. Additionally, it is growing toward the "midbrain" so his doctor said another surgery was probably not going to be a future option. This was in June of this year. His doctors were also pretty upset that he'd chosen not to take the chemo. My brother did not communicate this with them, so I know that was part of the frustration and I'm wondering how this has impacted (if at all) their attitude toward James as a patient.

I was fortunately able to attend this appointment with him and the doctors were pretty upset to begin with. I also brought a list of questions based on the PDF Ben Williams and Stephen have created/maintained. They answered all of my questions, but I think they may have assumed James didn't go through with Lomustine for the first time because we read the book - which is not the case. Anyway, I got an odd vibe from both doctors after asking my list of questions...

After this appointment, James decided he would take Lomustine. His doctors also said they could and would combine it with Nivolumab, but due to some process of insurance having to deny it twice before they could get it, he has not received an infusion of that yet with the chemo. Their plan is to do this on his next appointment and with his second round of Lomustine. His next appointment is next week, I believe.

Sorry that was a long intro...

Now for my question: can any of you share with me your experience of side effects with Lomustine? James took his first pill on June 25. Since then his state has been:

• bedridden for the majority of the time
• vomiting/nausea (he's taking Zofran for this)
• mobility of his right side is worsening all the time. He cannot move his right arm/hand. He picks it up with his left hand to move it around. My suspicion is this has to do with too high of a dose of DCA after reading more here. He stopped taking that just a few days ago.
• difficulty walking - now uses a wheelchair
• headaches
• cannot speak very much or very well
• difficulty opening eyes

Now, there are times when he is NOT like this and has energy, but the majority of the time since taking his first chemo pill, his side effects have been what I've listed above.

Is this normal?

My mom has reached out to the doctors and they ordered him to get blood tests done. After those were submit, they never replied with anything regarding his symptoms. I'm curious if this has anything to do with what the doctors think of my brother's future or if there are communication problems (maybe a bit of both).

I would really appreciate some insight into what you all have experienced with this chemo. I've read through a few posts and am trying to discern if his symptoms are side effects or if something worse is going on.

Thank you!

Gliosarcoma early recurrence?

I am mostly reader of this blog,  and I found many useful information and hope. Simultaneously, I tried to be as anonymous, as it is possible. Sometimes I afraid to even name the beast we face.

But now our situation looks dramatic and I seek help and additional information.

The short story: a young adult, diagnosed almost one year ago with a front lobe tumor (gliosarcoma). There were no prior symptoms, only sleepiness prior to a major seizure.

After double surgery at the end of July 2017, we spent a month recovering from complications. Next, our doctor administered irinotecan+carboplatinum. After 2 cycles of the chemo, we passed through 6-weeks radioteraphy with maximal possible doeses and TMZ administered daily. Next, from December: once cycle of TMZ and 3 cycles of TMZ+CCNU. MRI's at the early January and at the middle of April indicated stabilization.

Unfortunately, MRI at the end of June reveals contrast enhancement and a new diffused area outside the primary site.  Our doctors say its most likely non-resectable recurrence and or progression, and they changed the chemo to a new combo (topotecan and dacarbozine). I have asked, whether it could be a pseudo-progression, due to radiotherapy, but they exclude that.

Since December, when I discovered this blog and the Ben's book, we introduced some supplementation, including PSK/grifolan, bee-honey products, curcumin, berberine, fish oil, boswellia, 5-10 mg of melatonin, syllimarin. I was very afraid of including any of ``the regular drugs'' in coctails mentioned here.

The current neurological status of the patient is essentially stable and reasonably good, and we did not notice any particular symptomps indicating the progression.

I seek for any information, whether the new drugs could be supported by the coctail approach, and perhaps there are persons who have undergone a similar treatment. I am thinking on a few most frequent drugs (CQ, metformin, celebrex, melatonin in high doses), as well as POH.  Unfortunately, we have no information on the genetic status of the disease.

I would be also very grateful for your advice and/or information on clinical trails in Europe, we live in Poland and US/Canada are likely non-available for us.

Repurposing drugs for GBM

I think it's a very recent review paper, which you may find interesting
https://www.sciencedirect.com/science/article/pii/S0304383518303124?via%3Dihub

Abstract: Glioblastoma multiforme is the most common, aggressive and lethal type of brain tumor. It is a stage IV cancer disease with a poor prognosis, as the current therapeutic options (surgery, radiotherapy and chemotherapy) are not able to eradicate tumor cells. The approach to treat glioblastoma has not suffered major changes over the last decade and temozolomide (TMZ) remains the mainstay for chemotherapy. However, resistance mechanisms to TMZ and other chemotherapeutic agents are becoming more frequent. The lack of effective options is a reality that may be counterbalanced by repositioning known and commonly used drugs for other diseases. This approach takes into conside ration the available pharmacokinetic, pharmacodynamic, toxicity and safety data, and allows a much faster and less expensive drug and product development process. In this review, an extensive literature search is conducted aiming to list drugs with repurposing usage, based on their preferential damage in glioblastoma cells through various mechanisms. Some of these drugs have already entered clinical trials, exhibiting favorable outcomes, which sparks their potential application in glioblastoma treatment.

 

Unfortunately, this article is not open access.

 

Optune - sensitivity to conductive hydrogels - what to do?

Hello,

My Father suffering from redness and itching that make from the op-tune conductive hydrogels

We Cant find any solution for this, and this is very frustration problem?.. anyone has any idea or tip how to win this battle against  the crazy itching and red wounds?

Thanks!

Perampanel for uncontrollable seizures and tumor volume reduction

New study:  Seizures and Tumor Progression in Glioma Patients with Uncontrollable Epilepsy Treated with Perampanel.

https://www.ncbi.nlm.nih.gov/pubmed/29970574  (abstract only)

http://sci-hub.tw/10.21873/anticanres.12737  (PDF download from sci-hub)


"Obvious seizure control was observed in 10 analyzed patients (100%) and 6 patients (60%) became seizure-free"

"Tumor volume and peritumoral edema within 6 months were volumetrically analyzed by MRI-FLAIR images, and the volume changes were evaluated. The tumor volume decreased in eight of 9 patients during 6 months by FLAIR image (Figure 2) and increased in one (Case 9) of 9 patients"


See also

Seizure response to perampanel in drug-resistant epilepsy with gliomas: early observations

https://www.ncbi.nlm.nih.gov/pubmed/28492978