Hi, my girlfriend has epilepsy and was put on this drug about 7 years ago. She is 32 and since being on it she has undergone over a dozen surgeries, a hysterectomy and partial vulvectomy. Her consultant has advised it may be worth changing medication as they don’t understand why her cancer Has been so aggressive.
She has recently undergone radiotherapy treatment (5 week course) and in general has been a big success, but her recent check up has found new cells forming which they are concerned about.
Has anyone else had any issues relating to this involving this drug?
Many thanks
Written by
Pat-Nash
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Hi there,I was Phenytoin when I was first diagnosed with benign brain tumour then it grew back to size of golf ball & was stage 3/4 cancerous. I’ve been on phenytoin for about 10 years just switched over to Lamotrigine which seems too be well.
Thank you for your post. I’m sorry to hear your girlfriend’s cancer is an aggressive type. This must be so difficult for you both.
It sounds like it might be helpful for your girlfriend to ask her consultant to explain more about this, and the reasons for suggesting they change her epilepsy medicine. As far as we can see, cancer is not a recognised side-effect of Phenytoin: bnf.nice.org.uk/drug/phenyt...
But there could be a number of other reasons they have suggested she tries a different medicine.
It will also be important for your girlfiend to speak to her epilepsy specialist about this, as they will be best placed to advise around other treatment options. If they agree that switching epilepsy medicines is appropriat, we have more information about changing epilepsy medicines, which you may find helpful: epilepsy.org.uk/info/treatm...
If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Tuesday 8.30am until 7.00pm, Wednesday to Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.
We received a letter from one of her consultants regarding the return of high grade VIN and they are meeting to discuss further steps. The shocking thing is they have only just realised she has been on this medication!
They have conflicting evidence that anti epileptic medication can lead to immunosuppression but they think it may be linked to her resistance to treatment, they are meeting to discuss this as it’s either change her medication which could ( and in the past) has severely affected her seizures or keep her on phenytoin.
Is phenytoin supposed to be given to someone so young? And she has been left on it for about 10 years, I heard it’s usually given to older people because of its potential long term side effects. She has not been reviewed by anyone regarding checking up on her medication levels or anything?
Hi Phenytoin can be prescribe to younger people with epilepsy. There are newer epilepsy medicines available and these tend to be the first line of treatment an epilepsy specialist would consider
When the specialist is deciding which epilepsy medicine will best suit a patient they will take various things in to consideration. It may be best to ask the neurologist what was the reasoning for your girlfriend to be taking Phenytoin. For example had she tried other epilepsy medicine but they didn’t control her seizures.
The National Institute for Health and Care Excellence (NICE) says people should have a review of their epilepsy treatment at least once a year. For adults, this is usually with their GP, but sometimes it may be with an epilepsy specialist if there is a need. For example if someone continue to have seizures or someone is having side-effects.
Hi there, I can only communicate with you about my own experiences. I've had Epilepsy for over 40 years. For the last 20 I've been on Phenytoin. Apart from my first seizure, mine have been whilst asleep.
10, or so, years ago I was diagnosed with Cancer. This has become incurable and everything is being done to control it.
What I'm trying to say is the Cancer and Phenytoin appear to be unrelated. However, what I do need to be careful of is any interactions with the medications.
Any medication has its side effects, however, I have never heard of Phenytoin being related to Cancer. Be careful what you read and where from. Express your concerns to the Dr's, if they appear dismissive, push them...
I've been on Phenytoin for 35 years now. 2 x100 twice a day. I've been fine, no sezures. Some tiredness but otherwise fine. I'm 75 years old now and getting over colon cancer. I have to say that I don't think there is any connection due to taking Phenytoin and cancer.
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