Hi all,
Having been treated and having got rid of locally advanced 9head and neck cancer in 2023, I've just found out that it has metastasised to both of my lungs. Quite a few spots. So far, only a chest CT has been done. No biopsy, but they seem confident that it is the same squamous cell carcinoma as the original.
It is treatable but not curable. I've not seen the systemic medicine consultant, as yet. Nor do I know if the genetics make it suitable for immunotherapy.
I am symptomatic: productive cough, ocasional small amounts of blood, wheeze, breathlessness. Discomfort on breathing, sometimes a dull ache but no real pain. My peak flow is reduced: 350, should be 590.
One dose of radiotherapy has been mentioned, to reduce symptoms. Chemo has also been mentioned. I am still struggling with side effects from Cisplatin. So, this doesn't fill me with joy (!).
I've done lots of research and (so far) my preference would be to first try Pembro/Keytruda on its own (if my PD-L1 results are OK). Looks as though NHS don't allow Pembro in conjunction with chemo? But maybe chemo after, if it doesn't work? Anyone know how this works? Had experience with Pembro only?
Have lots of you had symptoms that have been relieved by treatment? It scares me that this may be the best I ever feel. I can still go for walks, but my breathlessness has got worse. Blue inhaler helps a bit.
I understand what treatable but no curable means and I am trying to spin it as a chronic disease, rather than terminal. However, prognosis is not good for secondary lung cancer and I am hoping that the current new treatments keep me going long enough for a trial or something better on the horizon.
Thanks!
Steve
Hi Steve
I hope that you do not mind me replying as my cancer was different to yours.
Hopefully by doing so, someone who has had experience of secondary lung cancer and the treatments will see your post and offer support.
I am really sorry to hear that after already going through treatment for head and neck cancer, it has now spread to your lungs. it must have been hard to hear. I think that your way of trying to think of it as a chronic illness is a good plan.
I understand how you feel about chemo. I had it in 2022 and it wasn't great. I also had radiotherapy. I met a lot of people during my 5 weeks of treatment and quite a few who were having either a one off or a few sessions for symptom control and it did seem to help. If it could help get rid of some of the symptoms then to me it would be worth finding out more about.
It sounds as if have done a lot of research and are well informed about the treatments. I am not sure about the pembro and the NHS guidelines but it may be worth giving the Support Line a call and asking on there. They would have the up to date info.
I hope that you soon get some clarification about your treatment and I hope that it goes well for you.
Hopefully someone on a similar path will now see your post and be able to help more.
Jane
