Thursday, 28 November 2019

HAART Antivirals? Atorvastatin dosage?

My dad is on valtrex (valaciclovir/valacyclovir) daily and I noticed it is a guanosine analogue. I was wondering if anyone is taking HIV HAART treatment, such as tenofovir as well? It is a adenosine analogue and therefore I would imagine would work well to bind to Cytosine and Valtrex to Thymine in the cancer DNA? I would imagine antiviral drugs are limited if only 1 of 4 potential DNA base analogues is used? I know the CUSP9 protocol is using ritonavir but it is just used by itself - perhaps a cocktail of antivirals need to be used to combine with the cancer DNA?

Also we were wondering about Atorvastatin dosage as he is on 20mg a day but Care Oncology seem to recommend people are on 80mg a day? Do people get side effects on this dosage? Should we increase the dosage?

Background on my dad:
My father was diagnosed with Grade 4 GBM after a grand mal seizure 24th Feb 2019. Located in the left temporal lobe. 
He had a successful craniotomy on the 7th of March 2019

He completed the 30 sessions and then 3 months of 5/23 TMZ chemo. In September 2019, there was alot of swelling/looked like the tumor was very active by MRI and due to MGMT unmethylation the hospital stopped the TMZ and have now been giving him Avastin on Mondays every 2 weeks.  Bloods are all normal and within range.

He was having trouble with speach and twitching in September time but this is now gone and he is back to 100% after adding Phenytoin, Clobazam and Dexamethasone

Seizure drugs: 1.5g x 2 Keppra ; Phenytoin; clobazam daily. 
He carries around Midazolam injections in case he was ever to have a seizure but has only had 2 occassions this year.
2 x 2 mg Dexamethasone daily

Experimental Drug Cocktail (Ben Williams):
1g x 2 Valtrex (valaciclovir/valacyclovir); Chloroquine (155mg active ingredient); Celebrex 200mg; metformin 500mg x 2; 20mg Atorvastatin; ramipril; ranitidine 75 mg;  melatonin 20mg; 100mg mebendazole (1 month on/1 month off); 100 mg x 2 minocycline (1 month on/1 month off);

Daily supplements of multivitamin; 16 strain Probiotics; PSK; Maitake D; ; Mushroom supplement mix for brain (lions mane 300mg; bacopa 250 mg; reishi 150 mg; gotu kola 130 mg; ginko 120 mg); curcumin (longvida); vitamin D; ECG; Milk Thistle; Berberine; Boswellia; Resveratrol; Omega 3-6-9; Soy Falvonoids (geinistein); Astragalus; Artemisinin

Wednesday, 27 November 2019

Avastin or Lomustine to prioritize? 

Hi, those of you who are on combined Avastin + Lomustine for recurrence and struggling with blood counts, what is your experience, which treatment your oncologist prioritizes in need?

My husband who is a 32 months survivor with multifocal GBM progressed during his 2nd radiotherapy and his doctor gave up on him stating that he had less than 1 month of life expectancy. But luckily he reacted well to Avastin and his serious symptoms disappeared within days after the 1st infusion.

Together with the 2nd infusion we added lomustine (90 mg / m2) and it messed up with his blood counts on week 4 and 6 so his oncologist postponed both treatments. Plus, a few days after the combination treatment he started having severe diarrhea that is still ongoing and it didn't improve on those 2 weeks when we paused Avastin. He became weaker and weaker gradually.

Shortly after finally receiving the 4th Avastin with delay, he ended up in the ER due to confusion and seizures that we didn't experience in the past 3 months at all. Seizures were the first signs of tumor progression back in April so now we're frightened. Methylprednisolone was doubled to 64 mg (equivalent of 13 mg dex), Keppra was increased to 3000 mg. Symptoms disappeared within 2 days. Emergency CT showed only a very slight swelling which is actually an improvement compared to the last MRI in late August.

Today we were on pins and needles to finally start the 2nd cycle of Lomustine (we're already in more than 2 weeks delay) after his blood work results came back as perfect (BP 220,000, WBC 6.8) but the oncologist advised "Don't risk Avastin."

Avastin is a palliative treatment while chemo can really help if someone has a good reaction to it (TMZ helped him for 2 years) so I don't understand why the oncologist put Lomustine on hold in favor of Avastin considering that it is very likely that the tumors are progressing again? What's the point in using Avastin if he still needs tremendous amounts of steroids, plus he lays in bed most of the day despite the treatment? Next MRI will be in early December.

By the way, we sourced Lomustine from India because the oncologist wasn't able to prescribe it due to local protocols. He is only allowed to prescribe it after the failure of Avastin so we're actually not depending on his decision, it's just not a wise thing to disagree with your doctor.

My main concern is that there's some evidence that no chemo is able to help after the failure of Avastin so I can't see the reason why to wait for further progression in order to continue Lomustine, providing that his blood counts are perfect at the moment.

Thank you for any advice that you can provide.

Saturday, 23 November 2019

Low dose perampanel added to levetiracetam (Keppra)

Experience of Low Dose Perampanel to Add-on in Glioma Patients with Levetiracetam-uncontrollable Epilepsy


After introduction of levetiracetam (LEV), treatment of seizures in patients with malignant brain tumors has prominently improved. On the other hand, we still experience some cases with LEV-uncontrollable epilepsy. Perampanel (PER) is a noncompetitive α-amino-3-hydroxy-5-methyl-4-isoaxazolepropionate acid receptor antagonist that has recently been approved for treating focal epilepsy as a secondary drug of choice. Available literature reporting PER medication in patients with gliomas is still sparse. Here, we report our initial experience with glioma patients and report efficacy of adding low dose 2-4 mg PER to LEV in patients whose seizure were uncontrollable with LEV monotherapy. Clinical outcome data of 18 consecutive patients were reviewed. This included nine males and nine females aged 24-76 years (median, 48.5 years), treated for glioma between June 2009 to December 2018. We added PER to patients with LEV-uncontrollable epilepsy. Adverse effects, irritability occurred in two patients, but continuous administration was possible in all cases. Though epileptic seizures occurred in four cases receiving 2 mg PER, 17 cases achieved seizure freedom by dose increments; final dose, 2-4 mg PER added to LEV 500-3000 mg. Our study revealed anti-epileptic efficacy of low dose PER 2-4 mg as first add-on therapy to LEV in glioma patients who have failed or intolerable to LEV monotherapy. Low dose PER added on to LEV may have favorable efficacy with tolerable adverse effects in glioma patients with LEV-uncontrollable epilepsy.

Friday, 22 November 2019

Good day to all!

Maybe Stephen or some of the blog readers will be able to comment. I will be very grateful.
Two months ago my sister had a second operation (I wrote about this on this blog a while ago, and in early November we did an MRI. The doctor said that the tumor did not grow, but there was perifocal edema, which is a consequence of radiation. Literally - "this is not the edema to be feared." He said that he could last up to a year and leave himself. According to the doctor, everything is normal. But she feels much worse than some time ago. She constantly sleeps, the left side of her body works worse (before the operation, neither her arm nor leg worked at all, and afterwards she got better), there is a squint. The symptoms are very similar just to the growth of edema, about the same as before the operation. We reduced dexamethasone after surgery and had already reached 24 mg to 3 mg, but yesterday the doctors decided to increase it to 4 mg.
Doctors also said that she had vestibulopathy (dizzy), salt in the ear. Low potassium. We started drinking Boswellia about a week ago to make it easier to leave dexamethasone, but somehow it did not help. But they took only 1 capsule (according to the instructions on the bank, 3 per day is needed), because we were told that it should also be added gradually. Maybe it was necessary to take 3 cupsules? Until recently, we did not want to raise dexamethasone again, and we are now very worried about the deterioration.
Tell me, please, is it really possible to leave dex in our situation and how to do it right? Raise the dose (which has already been done), stabilize the condition, and then again slowly reduce it (before, 0.5 mg per week was removed approximately)? How to remove / control edema?

Thank you in advance for responding!

Monday, 18 November 2019

Hi all,

a promising japanese study:

Does someone know if there is a possibility to get access to this treatment without taking part in the study?

All the best!