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
Hi Alison,
ReplyDeleteThanks for posting your update. I am afraid that
I am unable to help with the keppra question as my husband was diagnosed in May and is currently on 500mg twice a day.
I wanted to ask about how you got your mum the treatment in Cologne? Apologies for hijacking your message board, but I am desperate to try and throw everything at my husbands gbm to buy as much time as possible for my two little boys and their daddy.
Thanks in advance, Hannah
Absolutely Hannah, will post info below as others may be interested but are there any specific questions I can answer?
DeleteApologies for the delay too I am at work and want to write a detailed response but will have to do so when I am home.
Also happy to be contacted via email too. alisonvfarmer@gmail.com
Dad's keppra was increased to stop the constant 'twitch' he had on his right side, which was small seizures. The keppra went from 500gm 2x day to 1000mg 2x day and alleviated the twitching right away. That dose was good for us for several months until he ultimately passed away.
ReplyDeleteThank you for still contributing to this blog Annie. This is really useful to know. All my love and peace to you and your family. XX
DeleteAlso Dad was on depakote too. I believe also an antiseizure.
ReplyDeleteMy husband was on 1500 mgx2 for over a year. He also took vimpat, initially 100mgx2 then when partials seizures returned, up to 200mgx2.
ReplyDeleteThank you Jo. It sounds like it is fairly tolerable at high dosage then. I will definitely look into Vimpat, I had not heard of this. Much appreciated
DeleteI would ask for 400mg of Vimpat, which is the max for your mum, most likely, as well as minocycline, which is an antibiotic but (a) has anti-seizure properties but (b) also anti-gbm properties on their own as well (see the CUSP9 docs).
ReplyDeleteSounds like she's doing quite well!
Thanks Logan. Will definitely ask about Vimpat. Good to know about the dosage too. I am keen for Mum to try adding Minocycline, however we haven't had much luck getting a hold of it and Mum is so reluctant to take anymore tablets at the moment... I did not know it had anti seizure properties, that is super useful. Thank you!!
DeleteBest wishes to you and Alison. I'm always checking for your latest blog updates.
Allison,
ReplyDeleteI would also be interested in the vaccine treatment in Cologne. Thanks, Audrey
Dear Allison, Post shunt, Greg's neuro-onc had Greg on 2000mg of extended release keppra at night. It made him very tired, we're slowly weaning him to 1000mg of keppra with the hope to get him to 750mg. He's also taking cbd-thc oil for anti-inflammation but also anti-seizure properties and Lamictal for anti-seizure. I hope this helps. Peace to you and your family.
ReplyDeleteThank you AGM, this is really helpful. I haven't heard of Lamictal so will check that out. We will see how she goes on 1250mgx2 Keppra a day. They gave Mum two different brands of Keppra for some reason too...I wonder if that makes a difference. Best wishes to you both!
DeleteHannah and Audrey - please let me know if you have any specific questions?
ReplyDeleteWe only really started looking into Immunotherapy after Mum had finished radiation and chemo. Post radiation/chemo her smaller tumour that was not operated on initially had grown significantly and so she needed to have a second operation. We had a bit of time before her op and with the help of Stephens amazing website and this blog we decided to go for it and try to figure out which place to try.
We ended up deciding on the IOZK for a number of reasons but partly because Stefaan Van Gool had joined their team and I had already been reading some papers that he was involved in or had written.
Deciding upon this course of action ahead of the surgery meant that we had the opportunity to get Mum's tumour tissue stored correctly and sent on to the IOZK. They sent us instructions that we could pass on to the neurosurgeon and their team for this. That part went smoothly and the tumour tissue arrived at the IOZK as planned.
For the treatment we needed to get Mum over to Cologne (from the UK) for about 3 days of every month (for 6 months) and it was always the week after she had been taking Temodar. During this time they would do blood tests and inject Mum with Newcastle Disease Virus and use localised hyperthermia at the same time. I live in San Francisco so have not been able to go with Mum to Cologne as of yet but both Mum and Dad were really impressed with the place. She had no side effects from the treatment.
After 6 months of NDV injections they build the dendritic cell vaccine and used Mums own tumour tissue to cultivate tumour specific antigens. She was there for 8 days for this part of the treatment and the vaccine was administered on the last (8th) day with more NDV and LH prior to this.
The IOZK also knew that Mum was on a cocktail of supplements and drugs and were supportive of this. They also helped with it and were able to prescribe Celebrex and Cimetadine for Mum. They always informed us when things were off on her blood test and, for example, advised us to get Magnesium/potassium supplement for Mum as these levels were too low.
So -the question is , is it or will it work? Mum will be going back again at the end of the month and I believe they can tell if it is working by measuring the height of her lymphocytes! I am not sure what will happen if they determine it is not effective, they may still administer the second vaccine...I am not quite sure. They have also mentioned they have other treatments saved for plan B, including Perilyll alcohol which they have just started offering to patients.
Apologies if this is a bit wishy washy, I just finished a long days work. But I really hope this is helpful and I am very happy to be in touch via email or on this blog if you have more questions.
Best wishes to all,
Alison
thank you for your detailed description of the IOZK process. I wish you and your family the best. Dave
DeleteThank you Dave. Best wishes to you and your family too.
DeleteThanks for sharing your mom's experience with IOZK. I look forward to hearing how her test results are. Keep us posted? - Audrey
DeleteAbsolutely, will do AB McMurray
DeleteTo take control on partial seizures, levetiracetam (keppra) with vimpat (lacosamide) is a very good choice.
ReplyDeleteThank you, this is really interesting to hear that lots of people are using Vimpat. Much appreciated.
DeleteKeppra, iirc, is associated with improved survival in GBM. Vimpat, as far as I know, isn't. But my wife's on Vimpat, because she couldn't tolerate keppra--tremors. The Vimpat has been very well tolerated--seems to help her sleep without much daytime drowsiness, possibly improved mood. We're in no rush to get off the Vimpat.
DeleteHi Alison, I'm just catching up with this and wanted to tell you that UCSF told us the maximum effective dosage of Keppra was 3000 mg per day. When Chance's seizures continued, we went to the Epilepsy Clinic at UCSF to find what to do beyond Keppra. They added Vimpat. I think it was 100 mg twice a day. He had four seizures on April 30th. After Vimpat, he never had another seizure. Since preventing seizures was Chance's biggest desire, Vimpat was a blessing. Best to you and the family!
DeleteThank you Steve and Jude, this is super helpful. I am going to see if we can get Vimpat for Mum and combine that with the 1000mg Keppra twice a day.
ReplyDeleteThanks so much for your help.
Alison