Saturday, 2 January 2016

Gbm from egypt Update

Dear all..
I am Sarah wife of Ahmad
I am not a very good follower of this blog as I used to be with the old one as I dnt get email notifications as I did..I know I's a simple issue so pls I give me a tip for that..

I posted Ahmad's cocktail earlier
He is on ccnu we are going to take our fourth round in 10 days..

With the ccnu he is taking:
Verapamil on chemo days

A cocktail so much like what Ben did..
Together with all the common supplements
Every one here is probably taking..
Our state:
We do struggle with our seizures..Ahmad is taking now 3000mg keppra divided twice daily and 1800 mg trileptal also divided..
I can not say that his seizures are fully controlled..a week ago he missed a dose and got 7 seizures in one night..
Right now he can get a really minor seizure just before the time of his medicine sometimes..I hope it gets better..and I have no idea why his seizures are that persistant..

His last MRI showed that the "spot" I sent u about earlier is not growing which is good news but still close monitoring is needed ..

There is also some short term memory problems and sometime problems in the ability of expression But not noticed..

Approaching our 4th round now and he began to feel very weak..he is nauseated all the time and always wants to sleep..this didn't happen before especially that we are away from ccnu last this normal??
If anyone have similar experience pls share..he can not take his cocktail when he is that weak..and nauseated and almost doesn't eat..

Ahmad is also on ketogenic diet..he was doing fine but now with the weakness and nausea I am thinking maybe he stops this diet and follow a less restricted one..and probably add 1500 mg metformin..what do you think?? Can he begin taking metformin while he is still on ketogenic diet??

Thank you all and I really hope you are all okay


  1. Hi Sarah, good news that the "spot" is stable. During the second round of PCV, my wife got a terrible myelosupression, she had 2 unit of blood transfusion, do you have the last blood count results available? Regarding the Metmorfin, if he is already in a Keto diet, low carb/low glucose, from my perspective you need to be careful, because maybe you can increase the weakness and generate some letargia too.

  2. Hi Francisco!are you spanish? I dont speak english very well I need any information for my drugs coktail.would you have any problems in sending your email to me?.
    I am very grateful

    1. Hi Manuel, yes Im from Argentina. Send me an email to

  3. Thank you Francisco..I feel u r right about metformin. I will do another blood test tomorrow

    1. If Im not wrong, the low peak on blood counts is around the 4th week on the PCV schedule, so then you have 2 week rest for recover the narrow bone, and get "normal" blood count levels. As you mention if you are aproaching to the 4th round, maybe you are in this stage of the schedule, makes sense for me.

  4. hello Sarah,
    i think also that the stable spot is great news, but the seizures and the weakness is concerning.
    Take care, and wish you much health.

  5. Thank you Melinda I hope it remains good news for all of us..:)

  6. Hi Sarah,
    Have the seizures increased since adding drugs/supplements? My husband has had seizures with Low dose naltrexone and Valcyte.

  7. I am not sure Linda..I dnt think so..seizures were not controlled in general..we kept increasing the dose of keppra..I did not relate it to any of the medicines though..