Can't believe this has happened to me

Hello Amanda

I have just noticed your post and that it's gone unanswered. I am so sorry I can't answer your questions as I have a different cancer, however by me replying it will be "bumped" back to the top of the forum and I hope seen by other Community members and you receive some replies.

I  am so sorry to read about your issues at your local hospital - I think I would be chasing up the team there to see if they can progress your case. I confess to living in Oldham and had my radiotherapy at Christies and the treatment and staff there was all "Top Drawer".

I wish you well on your ongoing journey.

Best wishes - Brian.

HI Amanda, 

                 my daughter has ACC which has spread to her lungs and liver. She was refered to Rob, he is extremely knowlegable and an expert in this field. She was initally started on Lenvatanib by Rob Metcalfe, unfortunately that had little impact. However, she has since had 6 rounds of Cistplatin and Vinorelbine , which had a significant effect on the number and size of her mets. ACCRF website is very helpful and informative. I hope this helps in some way 

Hello Amanda

lm having the same journey only 4 months ahead, it’s a long journey with both painful and relaxing days, unfortunately it doesn’t get any easier for a long time for us.

Be brave

Gary

Hi Amanda

just seen your post and wanted to reply as I’m in pretty much the same position, Im 44, I hope you are doing well?

I had primary salivary tumour removed in jul 22, had proton radiotherapy, at the time I had one lung nodule that they said was nothing, only to be told in sept 23 I have multiple nodules across all lobes of both lungs, so now metastic. I’m also under Rob and agreed to watch and wait. However I didn’t feel comfortable with this, ano struggled a lot with doing nothing, and I looked into options and have had surgery and ablation done privately to remove all nodules, they removed 15 from one lung, though all small and grouped. Have you considered ablation? It is available in certain locations on the NHS, but isn’t routinely recommended. This wasn’t a popular decision with the oncologists as who knows what will happen and if/ when I’ll get more. It’s been major surgery but I believe worth it, but it is still a wait and see. I’ve also seen an integrated oncology consultant and am doing a lot to improve my immune system with diet. Supplements and other complementary therapies to try to prevent future tumour growth.

I would take part in clinical trials, I believe there is a promising one coming up this year that Rob can advise on.

happy to keep in touch, there’s not many of us out there!

lorna