WBRT

Hi fred64

How did the consultation go? I'm hoping the consultant was able to answer all your questions but it's still nice to hear from others who have actually had the treatment.

I've had a look for others in the group who have had WBRT and I'm tagging as her husband has recently had this. Hopefully she'll be able to come along and tell you about his experiences.

x

Thanks for getting in touch , I do feel very alone , the consultant call went well , he said my husband isn’t the norm as he has no symptoms. We are opting to have WBRT which may make him worse possibly in long term or on the flip side give him a little more time , Immunatherepy was also mentioned as a possible treatment as well .

 Waiting now for everything to be agreed which seems to take forever , I do wish cancer patients could have some sort of coordinator you could contact , just waiting for the phone to ring

I'm glad to hear that the call went well fred64and you know what the plan for your husband is.

You said that you wish that cancer patients could have some sort of coordinator but we all do. There should have been a cancer nurse specialist (CNS) or key worker assigned to your husband to act as his point of contact at the hospital. 

If your husband doesn't have their details then he could ring his consultant's secretary and ask her to provide them to him. I ring my CNS if I'm worried about anything or if I need to ask a question.

x

Hi Fred64, my partner has brain metastasis, two tumours. Has had 2 WBRT treatments (in last two weeks), was supposed to be 5 but is allergic to steroids and therefore nothing to help with the brain swelling so the side effects were quite bad. However, almost two weeks in we are seeing significant improvement in speech and generally feeling better. Side effects were the usual sickness and lethargy but really impacted ability to walk and totally lost all speech but these are the areas were the tumours are situated. We both think it was worth it. 
do you have access to McMillan nurses? We were completely lost until we had one assigned to us - they mobilised the Palative care team, hospice support, district nurses - all of which has made the world of difference to us and as the only carer, has stopped me being so scared and feeling alone. 
Wishing you both much love xxxxx

Hi BMC2,

thanks for your reply ,in do hope your partner continues to make progress .

Garry starts his radiotherapy next week , he had been to the hospital to have his mask fitted. 

we haven’t been offered a McMillan nurse or palliative care team even though the consultant said it is palliative care and isn’t curable , I guess it was the same for the lung cancer which is dormant at the minute

He currently doesn’t have any symptoms from the tumour however the oncologist said it would only be a matter of weeks before it starts impacting his life .

I am really worried about the radiotherapy, he has had it before for the lung which was very debilitating, if it works and gives us a little more time it will be well worth it

stay safe and well

Fran

x 

Dearest Fran all I hope for is that the benefit will be worth the discomfort. We had a call from our oncologist today who was shocked that I had to tell him that Jo was hanging out the washing so he had to wait - he really didn’t expect her to be able to do that and is now considering other treatment options. Please push to have a Pallatitive care nurse - they made such a difference to us and we now have a Palative care consultant who is my go to when I get really concerned regarding reactions to meds or symptoms. Love to you both xxxx

Hi , hope you are both doing well,

Garry has had his WBRT , 10 sessions other than hair loss no real side effects , we are told they could still come 

Garry had the first of 12 immunotherapy doses on Thursday which knocked him for six with extreme fatigue. This could be from the WBRT or the immunotherapy. 
we are planning for the future and booked a week away in Devon next week and a uk cruise in August, to be honest I was shocked we could get insurance .

stay safe and well 

Fran