Lung mets treatment options

Hi Michelle,

i have had lung mets since 2012 and have had RFA 10 times.

RFA is suitable for mets over 5 mm to 3 cms.  It destroys the mets and I am sure gives you more time.

it has not been a cure for me and more mets have come .

i am thinking of having more re RFA in the future and have applied for exceptional funding and I am waiting to hear. My oncologist thinks Imwill not get it.

i have funded the RFA myself the last 6 times and it is expensive. I believe you can get it on the NHS aid you have a small number of mets 3 or less.

as yours are small there is no rush for you and there is a lot of research going on for targeted treatments .

best wishes 

Ruth 

Thanks for your reply Ruth. I was  really hoping it  might be an option on the nhs, I didn't realise it was dependant on how many mets you have. Like you say though, there's no immediate rush for me. 

Michelle. Xx 

Hi Ruth,

I hope you are well, we briefly met at the London meet in 2018.

Can I please ask you where and with who you had your RFA done with please ?

My various lung mets are all growing in size with one of them now at 25mm, and I want to try and get in to see someone before it gets to 30mm just to see if it is an option for me as currently all I am being told is to observe.

I did have one good bit of news from my last scan in September that one of the mets has "significantly resolved itself" which I will take as good news, but unfortunately all others are still growing.

I would appreciate a reply back if possible and thank you in advance for taking the time to read this.

Kind regards,

Sara 

Hi Sara,

good to hear from you.

yes I have had RFA 10: times for multiple lung mets. It was  sucessful though  new ones have appeared over the years.

i had all mine treated by Alice Gilliams. The first 3 times under the NHS at UCLH then after Alice left the NHS I have paid privately and had the RFA at Harley St Clinic.

Alice Gillams  is contactable on line you can google her name. She is away on holiday for November.

RFA is very expensive privately and cost £14,000. They did give me £2000 back as i was only in  overnight. Alice Gillams does it under a general anaesthetic.

there are people who have had RFA under Paras Dalal at The Harefield hospital. He also works for the NHS as well as privately at Harley St.

i think the NHS will only fund RFA if you have 3 or less mets.

you are right they do need to be small 3 cm or less.

good luck with your treatment.

let me know what you decide.

love Ruth 

Hi Ruth,

Thank you so much for coming back so quickly, really appreciated!!

I will have a search for Alice & Paras and see where we go from there, unfortunately, I can see the money side being a bit of an issue - even though it should not come down to that. That is a bit poor of the NHS not to cover it seems as how they do not support you much once they find out it is ACC, I have 6+ of varying sizes so pretty much rules me out, just hope they still slowly grow or "resolve" as the other one did.

Look after yourself Ruth and hopefully, we will meet again at next meeting perhaps.

Once again may thanks for your support & information,

Sara Xx

Hi Sara,

It may be worth spending £200:and have a private consultation with Paras Dalal and he is good at finding a way to get you under the NHS.

6 mets is not a lot of mets 

I have a lot more than that and am now taking lenvatinib which is targeted therapy 

another option is to go to the Christie and see Rob Metcalf and see wgat he suggests for you.

he can analyse your original tumour for you.

love Ruth 

Hi Ruth,

yes that is what we want to try, just a consultation to start with.

Rob Metcalf at the Christie is fantastic, I cannot praise him enough, have been under his care for nearly two years now, long drive up there but worth it!

Just waiting for the pre-screening of the Notch Inhibator trials due to start shortly.

Good news as such that you are on Lenvatinib, as I understand quite hard to get on, individual basis only, I hope you get positive results from it!

Thank you for the support Ruth, it has been much needed as I’m stressing out a bit at the moment which I know I shouldn’t be doing.

I will let you know how I get on.

Love Sara xx

Love Ruth Hi,

i’m Glad you are seeing Rob Metcalf. I had all the tests for NOTCH  etc but unfortunately did not have any that could be targeted.

I hope the lenvatinib helps. Yes I got it from the company direct through my oncologist on compassionate basis.

i am glad I helped a bit sometimes just talking to someone in a similar situation helps.

love Ruth x

Hi Sara, just wondered if you have signed up to the trial yet? I’m waiting to sign up as I now have multiple lung mets.

Hi Michelle, I’m in a similar situation and wondered how you are getting on? Did you get any treatment for the mets?