I'm so desperate to help him defeat this nasty disease. I know that I'm too hesitant and that we don't have time for that. My husband was shocked about his diagnose so he don't want to read about the possible treatments and drugs so everything is on my shoulders. I totally understand his attitude although it would be such a great help if he would be proactive because he is the smartest person I've ever met. His NO is a very good professional but absolutely not on board, just SOC. We don't even have the courage to ask for his opinion.
Unfortunately we started the majority of these drugs only after radiochemotherapy (except of Metformin and alfacalcidol). We added Aciclovir and CQ on the last week of the radiation therapy. Fluoxetin and DCA right after the last day of RT. Celebrex only 2 weeks ago.
He weighs 70 kg (ca. 154 pounds) if it matters.
Official:
Medrol 16 mg (chorticosteroid - in Hungary we don't have Decadron) This is one tablet only and I'd like to reduce it by half because we have Celebrex but my husband is hesitant because we only have appointment to the NO on 21/8. He has no symptoms other than extreme fatigue and metallic taste in his mouth.
Prescription drugs:
- Metformin - we recently increased it from 850 mg to 1275 mg (This is 1.5 tablet)
- Chloroquine 250 mg
- Fluoxetin 20 mg (Should we increase it to 40 mg? He is quite depressed even after more than a month on it so it just would be a bonus if his mood would be better.)
- Celebrex 200 mg x 2
- DCA 500 mg x 2 on a 2 week on 1 week off basis. We'd like to increase it to 500 mg x 3 as soon as he finishes his first TMZ cycle. Up until now he has not experienced neuropathy although he takes 1 pill of Milgamma Neuro every other day which contains 40 mg of benfothiamin, 90 mg B6 and 0,25 mg B12. We use the product of DCA Lab.
- alfacalcidol 2,5 mcg
Around chemo days:
- Aciclovir 400 mg x 2 (I'm just guessing what would be the right dosage and maybe he should take it daily, not only around TMZ days.)
- Omeprazole 40 mg x 2
His Canadian friend will bring him cimetidine within a few weeks. I'd like him to take 1000 mg a day.
I've just read about clomipramine here but I suppose that you can't use clomipramine and fluoxetin together. Which one has more benefit in your opinion? Mouse evidence on one hand and lots of anecdotal success stories on the other hand.
My husband never had a seizure so I'm hesitant to give him Keppra although its chemosensitizing properties are very tempting.
I have propranolol and I'm thinking to start my husband on it after the first MRI but I'm afraid to mess with his blood pressure. Based on the etodolac + propranolol trial I hope it can be effective with the standard 5/23 protocol, too. I'm assuming that Celebrex can be an appropriate alternative to etodolac.
Although we have a good relationship with our GP who is helpful enough to prescribe for us the above mentioned drugs, I think that she would be reluctant to prescribe tamoxifen, disulfiram, minocycline or maybe even mebendazole on the long term. What do you think of such providers like Alldaychemist? Is it risky to buy from them? Any personal experience?They even have Valcyte which I haven't been able to convince anybody to prescribe since my husband is seronegative for CMV. He had it once but now he has no active CMV infection.
Non-prescription:
- Genistein (Soy Isoflavones) 28 mg x 2 (We are not so convinced about it and my husband hates it so I think I'm not going to buy it again.)
- Silibinin 86,5 mg x 6
- melatonin 20 mg
- ca. 1 dl / 3 oz (?) frozen breast milk except of TMZ days (I know, I know...but it was easy to get it through a reliable relative.)
- propolis (30 drops)
- 1 liter green tea on TMZ days with Omega 3 and 200 mg ascorbic acid
- 1 teaspoon of home-made ethanolic rosehip tincture daily (except of TMZ days) because of this study http://www.scirp.org/
I know Stephen what you think about in vitro results but it's so easy to make and it can't do harm.
During RT he ate tons of lycopene-rich tomato juices and home made rosehip puree and steamed broccoli and broccoli sprouts because of sulforaphane. The latter now he hates so he'll start soon on broccoli sprout capsules. I also give him fresh pomegranate juice almost every day.
As you can see we are not so eager about supplements, they seem a bit unproven for us but I recently ordered Longvida curcumin (although its poor bioavailability), liquid Maitake D fraction, Selenium and CQ10.
Is CQ10 and Selenium applicable in between TMZ cycles despite their strong antioxidant properties?
Also, we tried a popular Hungarian medicinal mushroom complex (8 pills contain 150 mg rezveratrol, 336 mg shiitake, 336 mg ganoderma, 336 mg maitake, 336 mg almond mushroom) but he had severe diarrhea even on 2 pills a day so I'm not so confident to order him the Mushroom Science PSK product that everyone uses. I didn't see anybody encountering this problem on any cancer forum. It would be a pity to miss it.
I bought some edible oregano essential oil because of these articles but we don't know how to administer it. First, he tried to dissolve 5 drops under his tongue but it has awful taste. Later he tried to drink 5 drops with water. It's also a very strong antioxidant so maybe it's not so smart decision to use it when he is on DCA. or in between chemo cycles.
https://www.linkedin.com/pulse/oregano-compound-activates-oocytes-kills-glioblastoma-finley
https://www.ncbi.nlm.nih.gov/pubmed/25965832
We'd like to obtain 1:1 THC-CBD oil, too. Could you please provide me with some reliable resources? A lot of people seem to take it but I don't know where to buy it.
Big thank you to Stephen and this helpful community.
