Metastatic lung cancer mets in spine gone from stable to progressive

Hi TinaB24 sorry you haven't had a reply to your message yet. My cancer journey is different to yours, so I am sorry I can't answer your question, but I have heard of people who have had radiotherapy for spine mets, so this may be an option for you. It is really encouraging though that trial is working with such a great result! I hope you get this lesion sorted quickly so you can continue on your treatment and continue with such good results! x

Thank you. I just wish my recent scan results were delivered by the usual team for some reason I was phoned by someone i did not know and it became obvious the doctor did not know my case well enough or had any further information about what if any intervention could be offered. I would rather have not known the results until my regular appointment in two weeks time. I will mention this to the trial team when i see them on my next appointment as I feel unnecessary anxiety has been the result. 

Hi Tina 

I too was diagnosed with stage four metastatic lung cancer in September 21. Mine was stable for a bit but now is on the move again and we are looking at targeted drugs atm.  I have a met on my c3 vertebrae which was treated with radiation and I now have 3 mets in my brain which are being treated with Cyber Knife radiation.  Would it be possible for you to tell me which targeted drug you are on please? I have been told that the drug I need cannot be prescribed by the NHS and there’s a possibility I may have to sell my home in order to pay for it. (met = metastasis) I know all cancers are different and what works for one won’t necessarily work for another but it’s good to have knowledge!

I wish you all the luck with your fight x 

I am on the Mariposa trial at Christies in Manchester and I am aware the trial is not taking on any new patients. Iam on a tablet only trial. As far as I am aware you need to have EGFR markers of a certain type to qualify. Also you do not qualify if you have brain mets as this tablet can filter through the brain barrier and give you protection while it is working. Thank you for sharing your experience. I was diagnosed in December 21 and it was a total shock to learn i was stage 4 lung cancer as I had absolutely no symptoms and only found out because i injured my shoulder and had to have an xray. xx

Hi

Thank you for this I have a HER 2 mutation and I need a drug which targets this - unfortunately the drug only funded by NHS for breast cancer so I am currently lobbying every drug company/manufacturer I can find to try and get it! It is absolutely exhausting and totally frustrating knowing there’s a drug that can help available but not being able to get it. 

Wishing you the best of luck with your trial.  I didn’t have any symptoms either until the day I was diagnosed. Total shock. 

Hi

I have spinal mets, as well as many others. A couple of mine looked like they were breaking through the cortex, which meant that I was likely to lose my mobilty and continence. I've just finished 5 days of radiotherapy, so lets hope it's successful in shrinking the tumours. I'll be having another PET scan early July.

I wish you well and pray your therapy has been successful. Having spoken to the oncologist today I probably will be offered radiotherapy if lesion looks to be progressing after the next scan at end of May .

Hi Tina. My husband has metastatic spine cancer and a tumor in his lung.  Until biopsy we are not sure if lung is primary or whether both areas are from his throat cancer he had in 2020.  But what I can tell you is that they are planning 2 weeks of radiotherapy for his spine starting next week.  Unsure of other treatments that will be offered but thought this may help.  They have said this will reduce his pain significantly as currently he is in extreme pain.  So sorry you are going through this. Alli

Thanks Tina. Good luck with the radiotherapy.

Hi Tina

an update to the radiotherapy on my spine. The tumours did shrink but have caused fractures on both the vertebrae in the lumbar and thoracic areas. I’ve had a huge amount of pain but this has now been largely controlled and while I couldn’t walk a few days ago, i can now do so with the help of a frame. I hope I can do without this in another few days.

it seems every treatment has it’s side effects. I don’t know what to do next. My oncologist has given me some info on Docetaxel. Has anybody had experience of this drug? I’m a little reluctant to start if it makes me feel sicker without much reward. Maybe it’s time to let nature take its course.

Vivien