My dad Vince and his seconday brain metastases

Good morning, my father has been diagnosed with brain mets, 1 large one and they believe about 18 little ones, they have said he can’t have the stereotactic radiotherapy but want to start full head radiotherapy. He is only 67 he had kidney cancer in 2018, he had his kidney removed and they played it down told us it was very straight forward never ever have we been told that it can do this less than 2 yrs later.... how did you cope with getting cancer again?? We feel like it’s a time bomb waiting to go off. Thanks 

Hi

welcome to this group, tho I'm sure you'd rather not be here. Have u also joined the Family and friends group?

Like your dad, I had a brain met, years after my nephrectomy. But unlike him, I was lucky enough to have it treated by stereotactic surgery( aka cyberknife in my case)

 I am going to tag in as she  had whole brain radiotherapy  fairly recently and may be able to give you more info than I can, on the practical side of things.

As to the psychological side, I remember being told I'd got a secondary brain tumour - bearing in mind my job was very much using my brain, as I was an online cataloguer . I felt like I'd walked smack into a brick wall. Now I have both MRI and CT scans routinely every 3 months to monitor how I'm doing. I had a 3.5 year treatment break and only recently went back on my meds (Pazopanib) in Oct 2019. My Jan scans showed everything had shrunk!

So I don't feel like I've a time bomb about to go off but then I was fortunate to have cyberknife - in 2013. But I do get scanxiety every 3 months and have the sword of Damocles feeling then too, till I get my scan results.

Best of luck to your dad and the rest of the family. Hope he doesn't change to wait too long for the whole brain radiotherapy 

Do let us know when he has a date for his treatment.

Thank you.... yes I would much rather not be on here but I am taking comfort from reading other people’s stories and seeing that all the feelings and anger we have is perfectly normal... no I haven’t joint through friends and family group where do I find that. Congratulations on the shrinkage 

Hi,

I found the news I had brain mets absolutely devastating. Especially as I earn my living from lecturing and writing. I just thought it was the end. Fear would grip me in the early hours and living alone I used to wonder who would be the unlucky person to find me wandering completely demented in the morning.

Well so far, no one. I had gamma knife treatment in November and started to show positive results almost immediately. Some mornings my head would be quite fuzzy but I learned that that would gradually clear during the day.

I know this is not the same treatment but I'm sure the identification of fear is.  But I can only think they would offer this treatment if it showed the same sort of results as mine.

There's nothing rational or right or wrong about any of the things you or he are feeling. They are all responses to the terrible feeling of lack of control that comes with the news that you've got a complex and chronic disease which happens to come with a bit of a catch all name called cancer. 

The Family and friends group is listed under "cancer experiences". Sorry, I don't know yet how to send u a link.

Try this 

https://community.macmillan.org.uk/cancer_experiences/being_a_relative_/

Sue

Hi BG20

Sorry for the delayed reply, sorry to hear of your Dad's brain tumours.

I had two large brain tumour mets discovered April 2019 pressing on my speech and language area of the brain. Just over a year of being diagnosed with primary lung cancer.

I had two craniotomies to remove them both (I was caught just in time for surgery). I had a scan just over 6 weeks of surgery to see how I was doing. After going through all that I was already recurring (my cancer is extremely aggressive, on the bright side of this, it means it tends respond better to chemotherapy and radiotherapy.  

When I was recurring in the original two sites they also said it was now also in the scar tissue and within the lining of the brain. This meant I could not have SABR so only thing they would offer was full brain radiotherapy that was July 2019.

I have to say it was hard, within hours of the first treatment I started throwing up everywhere and had to call an ambulance the next morning and was admitted to acute oncology. I got through the further four days of treatment and sent back home.

It took it's tole on me mentally and physically (likely having three major surgeries and full brain radiotherapies within 5 months of each other). However as you can see I am doing much better.

I then started chemotherapy in September 2019 which again was hard work... I had to finish after 5 rather than  6treatments as it played havoc with my bloods and well being. But! It was worth it as my December scan showed I was in complete remission! 

January 2020 I am now on immunotherapy so hoping that will keep me there.

So whilst I don't like to give false hope here, but there is always reason for hope.

Take care, keep an eye on Dad and make sure you look after you too.

Thank you and sorry to hear you have been through such a rough time. My dad has completed his 5 day course of radiotherapy and we now have to wait 2 weeks to see the oncologist about his ongoing treatment. He had another seizure tonight, it is his second one, they last literally minutes less than 2 start to finish and it affects his left eye and left side of the mouth no where else. Following the first one we called an ambulance and he was admitted for the night but today we didn’t, we haven’t really been given advice about to call them or not? Do you have any advice?? 
thanks and hope ur keeping safe 

Hi Bg

I am sorry to hear of the seizures. I had my first one in October, so three months after completing the full brain radiotherapy. I have had a second one just before Xmas but seem to have them (touch wood) under control with anti seizure drugs.

As your Dad has just finished his radiotherapy, it may well be swelling that the radiotherapy can cause which hopefully will decrease with time.

I think you need to contact his team to let them know and see what they suggest or anything they can do to help.

Because of the seizures and living alone, I looked into them a bit and what to do. I started trimming my nails closer (I scratched my face in the first seizure) and moved a piece of furniture I hit my cheek on further away. I now recognise that I do indeed get auras. Signs that one is coming, for me I feel tingling in my arm and I cannot see properly, as in, I see black spots on my vision. When this happens, I go and lie on my bed, so when I seize I am in a cushioned environment.

The advice I read is; you should call an ambulance if the person falls and hurts themselves for any seizure. If you are safe from injury, they say that unless the seizure lasts for 5 minutes or more, then you may not need to call an ambulance. Once you have had a seizure, you are more prone for another coming within the next 48 hours. If they have a short seizure, but then have another one not long after then call an ambulance.

I got an emergency call bell fitted in case, as I say I live alone.

I was prescribed Keppra (it does have a posh name Levetiracetam) one twice per day. This increased to 2 twice per day after the second one and seems to be keeping them at bay.

I was also nauseas, more so after the radiotherapy. So I was put on an anti sickness drug called Cyclizine, which apparently works best on brain mets nausea. Just incase he is suffering with that too.

I hope this is helpful for you but please contact his team or GP as I am in no way medical, just saying what I have been told/read and my own experience.

Best wishes to you both.

Good evening. Thank you for ur reply I spoke to his oncologist today and they have increased his keppra to 500mg twice daily and then his dex to 8mg @8am and 12noon. They recommended he rested as much as possible so today he has just been resting on the bed, we have ordered him a electric riser chair as he’s struggling getting up so that will be here Monday or Tuesday as well. So hopefully things will settle down over the weekend. They agreed he doesn’t need to go to hospital for the small focal seizures.

Take care and stay safe