Lung mets treatment options

Hi Michelle,

I am also curious about how you managed to get accepted for RFA on the NHS with Dr. Para Dalal.

I went and had an initial consultation with him back in November (privately paid) and have been chasing for the past 10 weeks for answers to my questions without success, my emails are being read but no replies forthcoming either from Dr. Dalal or his secretary, unsure what I should be doing just to get a reply!

I would appreciate any feedback from you as to your experience so far. 

Kind regards,

Sara Xx

I would contact his secretary by phone and say you have not any replies from your emails and that you are anxious.

he should have sent you a letter following your appointment with him.

he will base his answer on your general health age and number and size of the mets.

did you take your CT scan with you ?

he can access your CT scan from your hospital if you let him know the date and hospital where it was taken.

I am still taking the lenvatinib and have felt ok but my BP has been too high so the cardiologist is increasing my BP medication 

love Ruth

Hi Ruth, hope you are still feeling ok. How long have you been taking the lenvatinib? I’m going to the Christie on Friday and have an appointment with the oncologist on Thursday,so stressful week!

Georgina 

Hi sara, 

So sorry you're having trouble getting hold of them. It's so frustrating isn't it..

So I had asked my consultant to refer me to Paras Dalal, after he was recommended to me by another ACC patient online. My scan images were sent across and reviewed by him and I had my appointment in July, where he told me he was happy to do procedure. I'm guessing his decision is based on size, location and how many mets I have...I signed the consent form while I was there and was told that the aim was for me to have the RFA in early November. I too am still waiting to hear back. I spoke to the clinical nurse just before Christmas who said she would return my call within the week but to no avail. 

I rang the clinical nurse who's details were on my letter. I did get to speak to her...I'd try calling them.  

Hope this helps, and hope you get answers soon.

Best wishes Michelle

Hi Georgina, sorry for the late response, I've only just realised you had replied. Paras Dalal is based at Londons Harefield and Royal Brompton.

I'm not sure what I'll do. I doubt I'll be a match for the trial...just got a feeling. We'll see what happens. Dr Metcalf did say the trial should open to recruit for a lot longer than they originally thought...maybe for 2 years. So I don't think you would miss the boat if it turned out you have NOTCH. 

I feel ok at the minute. I don't think I'm really getting many symptoms from the mets. I do have pains in my back, I get very nauseous and tired. However, I have really bad anxiety too so its hard to say if its the stress that's causing the symptoms if I'm honest. My mets are still prettysmall (around 1 cm) and I've been told I shouldn't really be symptomatic at present. 

Hope this helps send hope you've heard from Manchester. 

Kind regards Michelle. X 

Hi Michelle,

Thank you for the reply. I’m off to the Christie on Friday for some more blood tests and to sign the paperwork, not sure how long it will be before I know the results. It’s quite a long way for us to travel but it’s worth a try. I don’t feel as if I have any other options really.

I also have an oncologist appointment tomorrow so it’s a stressful week for me, I also feel   Very anxious and have been experiencing all sorts of aches and pains since I found out it was back again. I just find everything very stressful at the moment and I agree it’s hard to tell if its the stress or the mets.  My largest met was 1.8 cm and the nurse said this shouldn’t cause any problems. I think it depends where they are?

im going to mention RFA tomorrow and see what the oncologist says, will let you know how I get on.

Hope you get a date for the RFA soon.

regards

Georgina

HiGeorgine,

don’t be surprised if your oncologist tries to talk you out of RFA mine did .

i had to insist on a second opinion from Alice Gilliam’s which they cannot refuse and he referred   me .

i ended up having RFA 10 times from when they were 1 cm. that was 8 years ago.

i still feel well with the mets that I have now.

i also signed up a lot paperwork with Rob Metcalf and unfortunately wasn’t eligible for a trial because I didn’t have the mutations.

i now am taking lenvatinib and feel well.

i did have to stop for a day recently because my BP was high but I am nw taking spironolactone which has helped 

Hi Georgina, 

I agree with Ruth. My oncologist completely dismissed RFA as an option, he said it worked no no difference to the outcome. My ENT consultant referred me in the end after I'd insisted. There's definitely conflicting thoughts in the medical world about it. 

Just hearing Ruth's success with RFA is enough evidence for me to want to move forward with it. 

I have hypnotherapy at the hospice near me. It's to help with negative thoughts and mindfulness. Its really helped. My Macmillan nurse referred me. Just a thought if your struggling with all the stress. 

Lots of luck for your next two appointments. 

Michelle. Xx 

Hi Ruth and Michelle 

Well ladies you were right! My oncologist dismissed RFA outright as I have too many mets of varying sizes. She said it won’t make any difference to the outcome which I take it to mean that even if they blast 5 then even more will come back?

She could offer no treatment and said my best hope is with Dr Metcalf. They won’t consider chemo or other treatments as they have not been proved to work. Very depressing visit.

best wishes 

Georgina

Hi Ruth

I’ve, replied jointly to both yourself and Michelle

Hi Ruth and Michelle 

Well ladies you were right! My oncologist dismissed RFA outright as I have too many mets of varying sizes. She said it won’t make any difference to the outcome which I take it to mean that even if they blast 5 then even more will come back?

She could offer no treatment and said my best hope is with Dr Metcalf. They won’t consider chemo or other treatments as they have not been proved to work. Very depressing visit.

best wishes 

Georgina