Showing posts with label antiepileptic_drugs. Show all posts
Showing posts with label antiepileptic_drugs. Show all posts

Thursday, 7 February 2019

Request for choosing a suitable cocktail



Hi everybody and many thanks to Stephen for adding me to
this wonderful blog.
I have some questions regarding my father situation and it’s
a bit embarrassing cause we don’t have detailed information about the tumor as
many of you have, so I wonder if someone could kindly help me to choose the
best probable cocktail for him while I know that it is just a shot in the dark.

He is 69 years old and last year (March 2018) during working
with probably toxic glue he suddenly fainted out and later he had problem in
his stomach. We went through lots of colonoscopy and other procedures during a
year and he lost more than 10 kg. Finally (at September 2018) we had a MRI that
said low grade glioma (in the LT temporal)
is the first possibility. (I guess since his HDL and LDL cholesterol were 41
and 77 mg/dl in July 2018 the tumor was not aggressive at that time). We’d been
told that because of tumor location it is better to do nothing and just wait.
(I am suspicious about
Finasteride pill that he took for 3 years for his prostate and we recently switched
to Terazosin)
Then in December we had
the second MRI which shows a “51*47*24 mm heterogeneous mass with surrounding edema
and extension to hippocampus region and mass effect on the LT with mild mid
line shift”.
Then we went through a
painful process to decide whether we should take the risk of surgery and
finally we decided not to (which I am still doubtful about it). After a stereotactic
biopsy which only says this:
  •  Microscopy:




Sections reveal fragments
of tissue including an astrocytic neoplasm. The cellularity is high. The cytologic
atypia include unclear hyperchromatism and some pleomorphism with scattered
cells having larger more hyperchromatic nuclie, occasional multinucleated. There
is rather extensive necrosis with prominent vascular and endothelial
proliferation.
  • Diagnosis:







Astrocytoma, anaplastic
with necrosis (glioblastoma multiforme), left temporal and basal ganglia involvement.
 



We started the temodal (120)+ radiotherapy (30 sessions) recently and now he
is in his second week.
He is taking 1 sodium
valproate 500, had around 25 dexamethasone (finished now), 3 phenytoin 100, 2 ranitidine!,
and 1 Terazosin a day.

I am trying to persuade
his Drs: to change ranitidine to cimetidine and maybe adding metformin (since he
had lost many weight I don’t know if they accept this and as someone mentioned
here metformin and cimetidine does not go well together. Am I right? But cutting
his carbohydrate too much is quiet hard so I still like metformin)

Also maybe chloroquine if
they accept.

-        
So the first silly question is that, if he goes well with the first cycle
can we say his tumor is methylated?
-        
Do you think Turmeric curcumin NovaSol could work as a replacement for
Longvida? Because of his weak stomach I thought soft gels might work better.  (https://www.amazon.com/Turmeric-Curcumin-NovaSOL-Bioperine
Softgels/dp/B018GQJQHM/ref=sr_1_2_s_it?s=hpc&ie=UTF8&qid=1533759320&sr=1-2&keywords=NovaSol%C2%AE&dpID=61EqNrydTdL&preST=_SX300_QL70_&dpSrc=srch
)

-        
What would you suggest for such a vague situation for a cocktail or other
therapy? (
  Ttf and vaccine are not available here)


I know most of information I said are useless but I thought it might help for some better guess. 

Many thanks in advance,

Sahel


Thursday, 19 July 2018

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?

Saturday, 7 July 2018

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

Wednesday, 10 August 2016

Anti seizure medications

Hi all,

Thanks to everyone for contributing to this amazing blog as always. Sorry I have been quiet for a while.

A quick update on Mum. She has been doing a cocktail with mainly natural supplements, Cbd oil and some repurposed drugs including Celebrex, Metformin and Mebendazole (Cimetadine on hold whilst she comes off Phenytoin). She has also been having treatment at the IOZK in Cologne. She completed 4 cycles of Temodar out of the standard regime in the UK of 6. She could not get onto her 5th round as her neutrophils have remained too low. She had her first Dendritic cell vaccine a few weeks ago after completing 6 cycles of Newcastle Disease virus and localised hyperthermia (which are given once a month and are planned out to time with the patients chemo rounds). They were not concerned that she was unable to complete chemo -it did not affect their treatment. The dendritic cell vaccine used Mums tumour tissue from her last operation in December and was cultured over 7 days immediately prior to the vaccine. They were able to produce 3.5million dendritic cells which they were happy with as a good vaccine contains 1 million apparently (not sure who counted them! :) .. )

Her scans have shown a tiny 6mm fleck that appeared in April but has remained unchanged since.

Her speech, reading and writing has been affected and her vision/balance slightly but she is doing really well right now in general.

Last week she had a series of partial seizures. Most of them occurred during the night and they did not last for too long but Dad took her to A & E for the first 3 of them. They got milder during the week and her last one was a week ago on Friday morning. Mum has been coming off Phenytoin which she was put on about 3 months ago when she had her last seizure. Not sure why they gave her that as it interacts with Cimetadine and has much worse side effects but for some reason it takes ages to come off safely. She is nearly completely off it and they have increased her Keppra to 1250mg twice a day. This seems a lot to me especially as her seizures have been fairly mild.

My question to the group is which anti seizure medication are you or your loved ones taking and what dosage?

I believe Keppra is the best in terms of less side effects but at that high a dosage perhaps it will cause some problems for Mum. I would like her to increase the dosage of Cbd oil too as this has anti seizure properties and she has been on a fairly consistent average dose for a while now.

Are there any other anti seizure medications that people are taking other than Keppra and has anyone been on a high dosage of this for a long period of time? If so, how have you/they found it?

Thanks all and warm wishes to everyone.

Alison

Saturday, 6 February 2016

Rick Simpson/Cannabis Oil or just CBD?

I've been wrestling with this for some time now so I thought I'd ask everyone's opinion on the matter.

I've been gradually increasing my wife's dosage of CO to 300mg a day, hoping to reach the magic 1gm a day that's been anecdotally espoused on various places online.

However, going through all the old CancerCompass posts, I'm wondering if it might be better to just do pure CBD oil. What is everyone's thoughts as to cannabis oil versus just pure CBD. And if we were to do pure CBD, how much should we be taking to combat a GBM?

Both are difficult to get where I am so I'm wondering which of the two I should be focusing on acquiring.