Hi there, I just want to let everyone know we had a great experience with Optune as a company and receiving financial support in addition to in-home support. They even filed an insurance appeal on our behalf. They really support us to have the best care with least amount of effort.
My mom was on 5 cycles of TMZ and started getting too sick on it so we decided to stop and start Optune instead. She was on Optune as her sole tumor treatment for 2 months (along with keppra 1,000mg and Dex 6mg per day). Her December MRI showed a big tumor progression and she started having lots of seizures, dizziness and headaches (never had seizure activity before). Neuro Onc at UCSF said it was too early to dismiss Optune, and that it needs time to show results.
I have a hard time believing this based on the mechanisms by which it is supposed to work, but that is another conversation.
We started the cocktail approach just before christmas in addition to Optune. I started noticing a correlation between headaches and Optune. This week, after 15 hour break I put on the electrodes and within a half-hour she got a bad headache. I turned off the device. It went away but her headaches are usually brief. I wanted to try again and see if turning it on would have an effect. After an hour or so I turned it back on. Within an hour she had a seizure lasting 13 minutes (I turned off the machine at the beginning of seizing).
The next day I asked her if she felt the machine was doing more harm than good, she said yes. When I asked the Optune rep who visited yesterday if seizures were known side effects, she said that because seizures are symptoms of the disease, it is hard for them to determine what is related to the device.
We have stopped therapy. As this is a new treatment, I wanted to share our story for others.
I think it is a great alternative to drugs but please take care and watch for any side effects.
With love,
Kusuma
My mom was on 5 cycles of TMZ and started getting too sick on it so we decided to stop and start Optune instead. She was on Optune as her sole tumor treatment for 2 months (along with keppra 1,000mg and Dex 6mg per day). Her December MRI showed a big tumor progression and she started having lots of seizures, dizziness and headaches (never had seizure activity before). Neuro Onc at UCSF said it was too early to dismiss Optune, and that it needs time to show results.
I have a hard time believing this based on the mechanisms by which it is supposed to work, but that is another conversation.
We started the cocktail approach just before christmas in addition to Optune. I started noticing a correlation between headaches and Optune. This week, after 15 hour break I put on the electrodes and within a half-hour she got a bad headache. I turned off the device. It went away but her headaches are usually brief. I wanted to try again and see if turning it on would have an effect. After an hour or so I turned it back on. Within an hour she had a seizure lasting 13 minutes (I turned off the machine at the beginning of seizing).
The next day I asked her if she felt the machine was doing more harm than good, she said yes. When I asked the Optune rep who visited yesterday if seizures were known side effects, she said that because seizures are symptoms of the disease, it is hard for them to determine what is related to the device.
We have stopped therapy. As this is a new treatment, I wanted to share our story for others.
I think it is a great alternative to drugs but please take care and watch for any side effects.
With love,
Kusuma
Thank you for sharing.
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