Lung mets treatment options

Hi Georgina,

let us know how you get on with the trial.

i am now going to restart lenvatinib this month 

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

Hi Ruth, they need to check for Notch before I can go on the trial. I have to sign up for everything first though. So I still may not get on it. Did the lenvatinib work for you?

I was very sorry to read that your mets have spread, how are you feeling?

Hi

i hope you can get on the trial.i did not have notch.

i only took the lenvatinib for 11 days. I do not know if it will work but it is worth a try. I am feeling ok just waiting to restart the drug

Hi Georgina,

yes I did signed up for the trial but so far I can’t get in to one yet because I don’t have NOTCH 

I’m currently looking to do RFA but I haven’t decided weather to do it or not.

how many lung mets do you have ?

Sara

Hi Sara

Thank you for your reply.

My tumour still needs testing for the NOTCH so there’s no guarantee that I’ll get on it either.

Will you get RFA on the NHS.? How many mets do you have.?

I am not sure how many mets, I had a meeting with the surgeon as the plan was to cut the “lump” out ( CT in June showed only one small area of concern,hence the plan for surgery) however after the PET this was not an option. He just said mulitiple mets. I really need to wait for the appointment with my oncologist to come through to find out more. I am finding the waiting hard I just want action! It’s all been a bit of a surprise and not a good one. I was geared up for surgery and cutting the cancer out and now I’m not sure what’s going to happen.

kind regards 

Georgina

Hi Ruth

Fingers crossed that the drug works.

Glad you still feel ok, all the waiting is very hard isn’t it?

Although I knew the ACC would progress I don’t feel prepared for what it means and everything seems even more uncertain and I just want action!

let me know how you get on

kind regards

Georgina

Hi

trynot to worry too much. Acc is slow growing I have had it for 10 years and still have a good quality of life.

ihave got used to the waiting for hospital appointments and have good support  from family and my oncologist 

love Ruth

Hi Georgina, 

I spoke with Rob Metcalfe last week and he said they haven't found Notch 1,2 or 3. They are going to screen for Notch 4. Apparently you only need 1 of these present to qualify for the trial. He's also organising a lung biopsy to determine 100% if I have Notch. He said it's more accurate to test a met that's present rather than the primary one. 

I'm still yet to have treatment. However, I have been accepted for RFA on the NHS with Paras Dalhal. Just waiting to hear back

I still have 6 mets slowly growing at about 1mm a month. 

...are there options abroad for us? ... haven't looked into it really, and probably being a bit nieve to think there might be, but I'm starting to feel really anxious again waiting. 

 Kind regards

Michelle. Xx 

Hi Michelle thank you for the reply. Good luck with getting on the trial and the biopsy. I’m still waiting for the nurse to contact me and they still need to test for notch so I’m not sure if I will get on the trial.

Did you ask to be referred to Paras Dalhal? And where are they based? Will you go ahead with the RFA if you get accepted onto the trial?

Do you feel ok with the mets? I’ve read about symptoms but I think it depends on where they are located and how big the are. I’m not sure about treatment abroad.

 I agree all the waiting is really hard and just adds to the anxiety, it’s always at the back of my mind and likes to reappear when I’m trying to sleep,! 

Kind regards

Georgina