Dear Stephen and blog visitors,
I've posted multiple times about my husband's case but this is his disease history in a nutshell:
He is IDH negative wild type, MGMT methylated.
2017/03/27 Diagnosed with multifocal GBM IV (walnut sized thalamic tumor + possibly lower grade frontal lobe mass in an area measuring 51 mm x 38 mm x 11 mm)
2017/04/05 surgery only on the thalamic site where 80% of the tumor was removed. He had a diffuse early progression with edema 3 weeks after the surgery throughout the surgical cavity and beyond. He received the traditional chemoradiation protocol for 6 weeks only in the thalamic area. 3 months after that, the first MRI showed slight progression on both tumor sites (despite the fact that the other mass wasn't even radiated so I guess there's some signaling between the two area)
After starting the maintenance Temodal courses, both tumor sites gradually reduced in size for almost a year.
2018/June The frontal lobe area stopped shrinking.
2018/ October scan: Thalamic area also stopped shrinking.
2019/ January scan: Both sites were stable.
2019/ April 30 Thalamic site is still stable, the oncologist is very satisfied with this area but the frontal lobe area started to invading towards the temple (temporal lobe?) so he decided to send him to radiation therapy. He said surgery is not an option at this stage because thanks to the chemo this is not a mass anymore. So not a solid tumor with clear margins, "just" infiltrating signaling (the report said: we can't state for sure that it became malignant). Sorry, my vocabulary is not enough to define it correctly. I'm worried that this frontal lobe thing is currently going through some transition to be an actual GBM. In the past 1 week he also started having complex partial seizures. During the 2 years of journey his only seizure case was a long and scary grand mal a year after diagnosis while the scans were great. Nothing else prior or after that, up until now. Is it a bad sign, right?
Stephen, do you think RT is the right path? Don't you think that treating the frontal area aggressively will make the thalamic tumor "irritated"? My husband just finished his 24th and last TMZ cycle last week and we'll have an appointment on Thrusday to schedule the date of the first treatment so we don't have much time to weigh our options and actually we don't have too many of them.
Also, I asked the NO about lomustine but he said that this should be our 3rd "plan B". First thing we need to do is RT. Then Avastin if RT won't work and last chance is lomustine because it's very hard to obtain in our country. Last time it took him 3 months to get it for another patient. I said that I can put it on his desk within 2 weeks on my expense in its generic form but he said "We need to spare it for later."
My radiation cocktail plan is the following:
* ketogenic diet
* Metformin (reducing the dose to 2x 500 mg because of the ketogenic diet)
* Minocycline 200 mg
* Valproic Acid (25 mg/kg)
* chloroquine (250 mg)
* continuing with DCA (10-12 mg/kg x 2)
* Sulforaphane (Jarrow Formulas, 2 capsules)
* EGCG (600 mg)
* melatonin 20 mg
* steroid-sparing plans to avoid swelling (Boswellia, 3 capsules of the Wokvel brand + Celebrex 400 mg - is it enough?)
* memantine 20 mg
* D,L methadone 1,75 ml x 2
* Perillyl Alcohol
Would you change anything?
# I have a concern with Minocycline. Considering that they're in the same class of drugs, would this apply to Minocycline, too? The publication concludes that radiosensitization doesn't neccesarily enlengthens the life span and causes skin damage.
# IV C therapy. Maybe we could do this here in Hungary with a naturopathic doctor based on the protocol in the clinical trials. But the only thing that the NO was clearly advised against in the beginning was anything that involves his veins because as he said "we need to spare them for Avastin." Also, there's a line in the current IV C trial for GBM among the exclusions that: "Patients who are on the following drugs and cannot have a drug substitution: warfarin, flecainide, methadone..." And he is still taking D,L methadone, although that is low dose compared to what addicts take.
Does IV C have an importance as a maintenance therapy, without chemo and radiation? Because that seems to me the most complicated option and I'd rather spare it for later if there's rationale behind using it in itself because I feel that with all this cocktail meds, the 3 infusions weekly and the POH inhalations every 6 hours we would overdo it a bit...
# Finally I found a source to get both Sativex and cannabis oil, although they're very expensive. Do you recommend to change methadon to cannabis? I know the evidence is quite anecdotal for both of them but considering that he progressed while taking it, I don't think that methadone is effective for him anymore.
# My keto concerns: almost all of his meds contain artificial sweeteners, the low quality types like sorbit and sacharins. Is it likely that this will take him out of ketosis?
Just for other patient's information, we also tried the CLOVA cocktail without olanzapine from this January until now but I don't think it worked for him. We increased the dose a little bit because we have different packaging here: lithium 500 mg, cimetidine 900 mg, Valproic acid 900 mg.
We made some changes in the cocktail (dropped Celebrex because it increases lithium's concentration and also fluoxetine because we were afraid to use two antidepressants at the same time) but I don't think this is the reason behind the progression.
I thought he could do some break with all the antidepressants during RT. Or do you know something that can be useful especially during this period? We talked to doctor Pilkington just before we got the bad news and we decided to start clomipramine. But now, with this new seizure activity I don't have the courage to give him clomipramine as it reduces the seizure threshold, just like chloroquine and memantin.
Sorry for my long text of wall.
