Good news from MRI scan. GBM Tumor shrinkage from 4.5cm to 2cm

Happy New Year everyone. I wanted to give a positive news update as it is great motivation when there only seems to be negative news regarding glioblastoma. My dad had his 3 month MRI scan follow up (since the last scan in September) today and it shows tumor shrinkage from 4.5cm (in addition to swelling) down to 2cm and no swelling. 

What was added since the previous MRI scan (September) was starting these drugs in October:

• 16 mg dexamethasone and then slowly reducing to 2mg now; 
• Biweekly IV Bevacizumab - avastin ; 9 rounds completed; 
• 2g daily Valaciclovir - valtrex (1g in the morning, 1g in the night);
• 100mg daily Artemisinin;
• 500mg daily Astragalus. 

I think the Bevacizumab - avastin and Valaciclovir - valtrex really helped.

I want to share his treatment as I know there is no one cocktail list and it can be difficult to know what to take and also where to get the drugs or supplements. We began by taking the list of "A" drugs from the table which Stephen shared with us after I emailed him directly. Stephen also provided a link to the Ben William's and Richard Gerber's cocktail list. Since my dad is unmethylated we tried to follow Richard Gerber's cocktail list as closely as possible. We printed out the BT Cocktail list Stephen shared with us, modified it to the "A" drugs and printed this as my dads list to show his oncologists and GP with the dosage he was taking. We were lucky some friends were able to get chloroquine phosphate, Celebrex and melatonin over the counter in Spain. This meant we could start slowly adding drugs one by one before getting the GP to prescribe these drugs to my dad. His oncologist was happy for my dad to try whatever he wanted once he did the treatment they suggest - he was free to add any supplements or drugs once we provided the oncologist and GP with the cocktail list, dosage, purpose (this info from the cocktail list Stephen shared) and the date we added the drug and only one by one with two weeks apart. For the likes of Valaciclovir - valtrex we named the researchers who carried out the study and the publication and then our GP was happy to prescribe these drugs from our local pharmacy.

We check his drug interactions using drugs.com website. It allows you to enter the list of drugs and says potential side effects or which drug combinations throughout the day to avoid. We also get the pharmacist to make up weekly blister packs and they put his drugs into morning, lunch, evening and night - this service really helps us keep organise. We keep a day example of how the pharmacist previously made up the blister pack and hand that in to the pharmacist the following month so they remember - as even for the pharmacist its alot in the cocktail to remember.

We are attending 2 hospitals because one is a general hospital to deal with his seizures and it is 10 mins drive away and his oncologist/neurologist hospital are 15 mins away from our house - we are very lucky with the excellent healthcare in Ireland and that it is all provided for (consultation, MRI scans, surgery, radiation, chemotherapy, Bevacizumab - Avastin, prescribed cocktail medication, social worker, counselling, hospital stays, blood tests, tumor analysis).

We were taking N-acetylcysteine early on (it is a Glutamate transporter 1 (GLT1)) but we stopped as we read it might enhance the tumor growth - we do not know if it is good or bad to take??? I think the seizure drugs blog glutamate transport?

We also obtained Disulfiram but never added this to our cocktail as we do not know if it interacts with the seizure drugs??

We also were taking Ranitidine (75mg daily) but stopped this after reading about side effects combined with Bevacizumab - avastin. Although my dad never had any issues. 

We are also interested in adding more to the cocktail perhaps similar to the CUSP9rv3 clinical trial cocktail such as ritonavir. We are also continuing to do research on HAART/HIV antriviral treatment as apparently HIV patients in Brazil/Mexico did not get GBM's over a 20 year period. 

My dad needed to take Duclox for constipation during chemo but is fine now.

My dad does not follow a ketogenic diet but we do encourage him to have a vegan diet as much as possible low in sugar. However if he wants to eat biscuits, bread, chocolate etc he does - he loves Latte's and dark mint chocolate. He does not have any alcohol due to the seizure medication.

BACKGROUND:

• My father was diagnosed with Grade 4 GBM after a grand mal seizure 24th Feb 2019. Located in the left temporal lobe, around 3cm.
• He had a successful craniotomy on the 7th of March 2019. About 95% removed, at least all visible tumor was removed.
• He completed the 30 sessions of radiation/310mg TMZ. 17th April 2019 to 30th May 2019
• He then did 3 months of 5/23 400mg TMZ chemo. July-September 
• TMZ was stopped and been doing Avastin every 2nd Monday since 23rd September 2019 - today 13th January 2020 still doing.
• Some notes to point out: he was swimming the evening before he had his 1st seizure. He couldn't finish a pint of guinness that night and had some pins and needles in his right arm before sleep - he had no other symptoms to indicate this tumor before 24th February 2019. He had the seizure in the middle of the night. 7th March Surgery went really well and was chatting away normally 1 hour afterwards. To this day he has never had any pain or headaches. He had no side effects during radiation and chemotherapy apart from the seizure 5 weeks after it finished. 

Side Effects:

• 30th June 2019: About 5 weeks after 30 sessions radiation/chemo and after having daily tingling, we spent the day walking around the countryside for many hours. We had a 2 hour car journey and he was 2 hours late taking his Keppra (at the time he was only on 1g total in the day, 500mg morning and 500mg evening). That night he had 4 multiple seizures. He came through after the 1st seizure but he seemed to have panicked when he saw the paramedics that he went into the 3 other multiple seizures. The hospital induced him into a coma for 24 hours which we were not expecting. His Keppra dosage was increased to 2.5g a day and they added phenytoin 300mg in the morning. They also restarted him in dexamethasone 2 weeks 4mg and then 2 weeks 2mg.
• 4th September 2019: He had been having foot twitching since 30th June every night when sleeping. From the end of August he was starting to mix up people's names and words due to aphasia resulting from the edema. Hospital increased the Keppra to 3g per day, added Clobazam 10mg x 2 and 16mg Dexamethasone daily - which we have been reducing since September until now (18th Jan) where he is on 2mg Dexamethasone. His speech has now returned to 100% and no seizures  after adding Phenytoin, Clobazam. 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 Bevacizumab - Avastin on Mondays every 2 weeks, 9 rounds so far.  Bloods are all normal and within range.
• October 2019: My dad took Zovirax tablets and then switched to Valtrex as it apparently has better bioavailability. For 2 weeks when he started taking this we noticed he broke out in large cystic type spots around his face and neck - it almost looked like his body was trying to get rid of toxins??? These spots went away after about 2 weeks after starting the Acyclovir treatment.

Daily Routine: He carries around Midazolam injections in case he was ever to have a seizure

MORNING:

1. 8.30am: Ensomeprazole 40mg (One tablet a day). Stomach protector for steroid

After Porridge (with seeds):
9am: Following medication all prescribed by GP 

1. Dexamethasone 2mg (One tablet a day). Steroid to reduce swelling
2. Ramipril 5 mg (One tablet per day). ACE inhibitor, Lower Blood Pressure, Prevents accumulation of Tumor associated Macrophages) 
3. Phenytoin - Epanutin 300 mg - (3 x 100 mg tablets all taken at this time. Anti-seizure
4. Clobasam - Frisium 10 mg (twice a day, 10 mg in morning, 10 mg at night) Anti-seizure
5. Levetiracetam - Keppra 500mg x 3 (twice a day, 1.5g in morning, 1.5g at night) Anti-seizure
6. Metformin Hydrochloride 500 mg (twice a day, 500mg in morning, 500mg at night). Diabetes and Immune booster
7. Valaciclovir - Valtrex 500mg x 2 (twice a day, 1g in morning, 1g at night) Anti-viral, HSV, VZV, EBV, CMV. Guanosine binds to cancer cell DNA and converted by viral thymidine kinase and host cell kinases to aciclovir triphosphate (ACV-TP)
8. Chloroquine phosphate - Avloclor 250 mg. (One tablet per day, 155mg active chloroquine base). Malaria. Inhibition of late-stage autophagy
9. Minocyline 100 mg (twice a day, 100mg morning, 100mg evening - one month on and switch one month off to use Mebendazole instead). Targets macrophage/microglia. Anti-seizure
10. Mebendazole Vermox 100 mg (twice a day, 100mg morning, 100mg evening - one month on and switch one month off to use Minocycline instead). 

After omelette (with garlic):

10.00am: Supplements. Mainly obtained from iherb apart from Turkey tail which is difficult to get in Ireland and we get via evitamins.

1. Boswellia NOW 500mg tablet. (1 of 3 tablets per day) Reduces edema
2. ECG (green tea extract) . Now 400 mg. Sensitizer to TMZ by GRP78 inhibition
3. Maitake D Mushroom Wisdom (600 mg tablets – 1 tablet per day). Immune
4. Curcumin. Doctor's Best (1000mg tablets – 1 tablet once per day but give other brands of Curcumin later in the day as this is not Longvida and difficult to swallow) Immune; STAT3 inhibitor
5. Multivitamins. Optimum Nutrition, Opti-Men. (1 tablet once per day)
6. Vitamin D3.  NOW (10,000 IU tablets – 1 tablet once per day). Cell differentiation; Immune
7. Mushroom supplement mix from Fungi Perfecti Host Defense Stamets 7 (Royal Sun Blazei; Cordyceps; lions mane; Maitake; reishi; Chaga; Mesima); Immune
8. Artemisinin. Doctor's Best (100mg tablets – 1 tablet once per day) Malaria and Direct Cytotoxicity, apoptosis

LUNCH:

After snack:

1pm: Medication prescribed by GP 

1. Celecoxib - Celebrex (200mg tablet) Arthritis and COX-2 inhibitor, Immune (PGE2 inhibition),  reduces edema

1pm Supplements:

1. Astragalus NOW (500mg tablet) Immune

TEA: (meal followed by a glass of Kombucha or Kefir)
After snack:

5pm:

1. Omega 3-6-9  Now Foods, 1200 mg - 1 tablet per day) From Borage, Flax Seed & Fish Oils Increased oxidative stress in tumor cells
2. Milk Thistle, Silymarin Now Foods, (300 mg tablet) Immune and liver support
3. Berberine Natural Factors, WellBetX (500 mg tablet).Glucose metabolism and Induces senescence of  cells by down regulating the EGFR-MEK-ERK signalling pathway
4. Boswellia NOW 500mg tablet. (2 of 3 tablets per day) Reduces edema
5. Curcumin. Protocol for Life Balance, Curcumin SLCP Longvida 400 mg and  Advanced Orthomolecular Research (AOR) Curcuviva 400 mg (80 mg curcuminoids and Nordic Naturals Curcumin Gummies Mango 200mg Longvida. Prefers the Nordic Naturals gummies. Immune; STAT3 inhibitor

EVENING:

9pm: Medication prescribed by GP 

1. Clobasam - Frisium 10 mg (twice a day, 10 mg in morning, 10 mg at night) Anti-seizure
2. Levetiracetam - Keppra 500mg x 3 (twice a day, 1.5g in morning, 1.5g at night) Anti-seizure
3. Metformin Hydrochloride 500 mg (twice a day, 500mg in morning, 500mg at night). Diabetes and Immune booster
4. Valaciclovir - Valtrex 500mg x 2 (twice a day, 1g in morning, 1g at night) Anti-viral, HSV, VZV, EBV, CMV. Guanosine binds to cancer cell DNA and converted by viral thymidine kinase and host cell kinases to aciclovir triphosphate (ACV-TP)
5. Atorvastatin 20 mg (1 tablet a day) Manage Cholesterol
6. Minocyline 100 mg (twice a day, 100mg morning, 100mg evening - one month on and switch one month off to use Mebendazole instead). Targets macrophage/microglia. Anti-seizure
7. Mebendazole Vermox 100 mg (twice a day, 100mg morning, 100mg evening - one month on and switch one month off to use Minocycline instead). 

9pm Supplements:

1. Resveratrol Now Foods, 200 mg,
2. Soy Isoflavones with Vitamin B6. Holland and Barrett Contains active daidzin, genistin and other isoflavones, phyto-oestrogens
3. PSK or PSP (Turkey Tail Mushroom/Corilus versicolor/Trametes versicolor) NFH Hot-Water extract Immune 500mg (obtained from Walmart) have backup from evitamins from Mushroom Wisdom. 
4. Probiotics; Garden of Life, Dr. Formulated Probiotics, Mood+ ( 1 tablet once per day); 16 strains  50 Billion CFU¹ (203 mg)
5. Boswellia NOW 500mg tablet. (3 of 3 tablets per day) Reduces edema
6. Spirulina powder mixed in with green juice

NIGHT:

11pm: Medication prescribed by GP

1. Melatonin 20mg; 

Useful links we used:

Ben William's cocktail: https://btcocktails.blogspot.com/2015/08/ben-williams-cocktail-profile.html

Richard Gerber's MGMT unmethylated cocktail: https://btcocktails.blogspot.com/2015/10/rich-cocktail.html

CUSP9rv3 Cocktail list (Neurology consultant DR. Marc-Eric Halatsch) https://clinicaltrials.gov/ct2/show/NCT02770378

Positive correlation between HIV antiviral treatment and low occurrence of glioblastoma https://www.researchgate.net/publication/266011045_Gliomas_and_brain_lymphomas_in_HIV-1AIDS_patients_reflections_from_a_20-year_follow_up_in_Mexico_and_Brazil

https://virtualtrials.com/survive.cfm

https://virtualtrials.com/noteworth.cfm

http://www.anticanceralliance.com/cusp-nd/

https://www.survivingterminalcancer.com/

https://clinicaltrials.gov/ct2/show/NCT02770378

https://www.frontiersin.org/articles/10.3389/fphar.2018.00218/full

https://www.canceractive.com/article/repurposing-old-off-patent-drugs-as-new-and-effective-cancer-treatments

Low dose perampanel added to levetiracetam (Keppra)

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

Abstract

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.

https://www.ncbi.nlm.nih.gov/pubmed/31748440

Avastin alone?

Further to a recent previous post.

3 months of TMZ 5/23 showed that chemo is not working for unmethylated GBM. The tumor is very active according to MRI comparison between July and September 2019. There was alot of swelling which is currently being reduced with 16 mg steroids per day in the past week. Speech has improved alot with this. Was told it is too close to previous radiation or surgery to have either done again.

2 weeks ago clonazepam was prescribed 10mg x 2 and Keppra increased to 1500mg x 2 and Phenytoin 300mg in the morning -  all of this is keeping seizures, twitches and focal seizures away.

Oncologist is going to start IV Avastin today and stop all treatment - asked if it was pallatiative but answer no it is not pallatiative treatment yet. Thought it was unusual to go ahead with Avastin by itself and not combine it with another chemo treatment such as lomustine?

Have been following cocktail since during radiation treatment back in April 2019 which I posted about in previous post. This includes daily chloroquine (155mg active ingredient); celebrex 200mg; metformin 500mg x 2; Atorvastatin; ramipril; ranitidine 75 mg; mebendazole; melatonin 20mg.

Also the usual daily supplements of mulitvitamin; 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)

Wondering if anyone has any experience of just Avastin being prescribed? I am wondering what is even the point in doing avastin alone? Appears to have more side effects and very little extra benefits, or OS? I was optimistic that Richard Geiber had Avastin and low dose TMZ but that doesnt seem to be on offer to us? Or any chemo alternative?

Very disappointing TMZ stupps protocol + cocktail did not seem to work. 

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

Glutamate, ROS and Endocannabinoids

At 7:40 in this video: https://www.youtube.com/watch?v=Cd5AYWX_bT4&t=1s he talks about how endocannabinoids block neurotransmitters such as glutamate. You can't see the slides which might make it more helpful but can anyone relate this is the usefulness of cannabis, especially as it relates to IDH1 mutated tumors?

I'm also trying to make sense of how ROS is thought to be related to glutamate? I thought I read that glutamate in IDH mutated tumors stops the cells from being overwhelmed by an influx of ROS and so that is why they are so glutamate hungry.

So my next thought is could a combination of cannabis and high dose vitamin c infusions, which is thought to also overwhelm the cells with ROS, be beneficial.

I have no idea if any of this makes sense. It's just overlap I'm seeing and so I thought I'd put it out there.

Maria

Cronaxal

Has anyone tried Cronaxal or might have any info regarding whether it is worth trying? Thanks
http://www.cronaxal.com

Glutamate?

Hello,

there hasn't been much written about the role of glutamate in gliomas, so I was wondering if anyone had looked into it before? It caught my attention some time ago when someone posted a link to "medical food" Cronaxal, which "is a combination of oxaloacetate and ascorbic acid (vitamin C). Oxaloacetate reduces Glutamate levels in the brain in multiple laboratory animal tests.  Glutamate overproduction is directly tied to the growth of malignant gliomas, their invasiveness, and their ability to destroy neighboring brain tissue.  Patients with Glial Tumors have an impaired capacity to metabolize glutamate due to the high amount of glutamate produced by the tumor itself.  Oxaloacetate helps to metabolize glutamate to alpha-ketoglutarate."

Anyway, search on pubmed does return some hits on glutamate and glioma, for example Glutamate and the biology of gliomas (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3107875/) where it states: "Glioblastoma tumors release Glu to enhance their highly malignant behavior, and that Glu release via system x_c^- and the excess extracellular Glu this system imparts a survival advantage by promoting resistance to apoptosis and by promoting glioma proliferation and invasion. In fact, the invasive nature of gliomas enhanced by Glu release is one of the most important limitations to effective disease control; experience demonstrates that more than 80% of glioblastoma recurrences occur within 2-3 cm of the original resection cavity. Successful treatment of malignant gliomas requires recognition of Glu and its receptors as potential targets and novel approaches modulating their influence are needed to improve upon existing ineffective therapies."

At the end of the article there are some suggestions for targeting glutamate with repurposed drugs, but I also found some supplements that could do that in some degree (like theanine, N-acetylcysteine and glycine). Anyone tried this approach to complement the cocktail?

 

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

Seizure and Brain Bleed

My 61-year-old, otherwise healthy, husband had a major seizure at 4:am Tuesday, think Grand Mal. This was the first time anything like this has happened, very frightening. Greg was rushed to our local hospital and released withing 4 hours. He had a CAT scan and it looks like he has a small brain bleed. Greg's neuro-onc didn't seem overly concerned. She has him back on Keppra 750mg twice a day. His short-term memory is even shorter if that's possible. His walk is even more hesitant.  We're waiting for the results of the second CAT scan, taken yesterday morning. We're back at UCLA next Wednesday for his routine MRI, blood and visit with neuro-onc. Has anyone had a similar experience? What does it mean to have a brain bleed, even a minor one? Do you recover from that or is the "new normal" reset?
Newest response from Greg's neuro-onc: "I don't think so.  These symptoms are quite typical of a bleed but as long as there is no worsening of the bleed, which sounds like there's not, he'll get better in about 3-6 months.  But he may feel better if we give a short burst of steroids for 4-5 days, 4 mg twice a day, before going back down to 4 mg."
Additional question: About a month ago, we stopped (cold turkey) almost all complementary meds, including chemo to give Greg a break. We also stopped cbd-thc sub-lingual spray. He continued to take curcumin+, metformin and just a couple of other meds but not the 25+ vitamins/supplements that have been part of his cocktail since September. Could that have something to do with the seizure/brain bleed? 

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:
Tamoxifen
clorocquine
Ppis
Accutane
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 dose..is 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
Sarah

Update on Minjung's status

Hi everyone,
Hope all of you and your beloved ones are doing well.

Here's an update of my fiance's situation.
Minjung's been very ill for the last few weeks. She had finished radiation about a month ago, but she started to have minor but constant seizures and some problems with body coordination. She's been and still is being treated with steroids but things are just getting worse... and now she is unable to open her eyes (she still can see if we force open her eyelids).
3 days ago, she had another surgery because the doctor thought her shunt wasn't working properly. When she woke up, she could open her eyes and we all thought things were going in the right direction.. until the next day when she went back to how she was before the surgery.
Also, the current anti-seizure med (Keppra) is clearly not working at all.
So we asked the staff to tell the doctor to prescribe valproic acid as her anti-seizure med today. We'll see how the doctor responds to our request...

We want her to start Temodal and cocktail therapy as soon as possible, but every time we bring that up, the doctor keeps saying she's not ready at all for chemotherapy. We're even considering switching to other hospital. My worst fear is that Minjung may not even have a fair chance of battling this disease, which to me was the cocktail approach.



Best,
Hyunsun

melatonin and seizures

dear all,

has anyone experienced side effects of melatonin related to seizures increase??

We started taking melatonin yesterday as a component of our radiation cocktail..and i read few posts warning people on anti-seizure medications from using melatonin..in fact i also found posts contradicting this fact..so it is very controversial..

This post summarizes the issue:

http://epilepsytalk.com/2012/11/19/epilepsy-and-melatonin-yes-no-or-maybe-so/