Lung mets inoperable- any experience?

Hi @pstack,

Sorry to hear you’ve had lung progression and sorry that I’m probably not going to be much help to you as I’m not really au fait with Kras chemo regimes.
I wonder (If you haven’t already that is) if it’s worth a discussion with your team re: Folfox (capox), folfoxfiri, just 5fu, lonsurf, and in addition, radiotherapy?

I have also attached a link for you to read if you haven’t already read it.
www.bowelcanceruk.org.uk/...s/treating-advanced-bowel-cancer/

Hoping some knowledgeable KRAS peeps will be along soon to advise you better than I can.

Good luck for next week and if ok please keep us posted

Marie

Thank you for your response, I expect to be going on a new chemo regime at some point but my Onco wants to delay as long as possible, I guess so I'm not using all my options too quickly. I see from your bio you've had lots of different lung treatments and I'll explore with my onco what might be possible. Trying to stay positive and keep options open. Patricia

Hi there @pstack @mem has gievn you some great advice. I haven't had lung mets but I am in Ireland and I know that you can get a second opinion from another centre or, as my GP encouraged, outside of Ireland. I have been referred for a second opinion at the Marsden in London and my oncologist and GP both said that if they recommended an approach or surgery that wasn't possible in Ireland, then the cross border initiative means that your treatment outside the state can be reimbursed by the Irish HSE. I dont know exactly how it all works but worth checking. I've seen people on the forum say that they were turned down for lung surgery as too many tumours, but others have had ablation and other things done even when a number of tumours present. good luck

Simon Jordan at Royal Brompton and this guy
www.rbht.nhs.uk/specialists/dr-paras-dalal
are the ones I have heard about who take on more daring surgeries or ablations. Ive no experience myself but worth asking other forum members!

@louise28 thank you for that advice, wasn't sure where to get a second opinion as Ireland is pretty small! I'm with David Fennelly in St Vincent's and I find him very good in fairness.

Hi @pstack it's a tricky one. My GP said the same. Ireland is so small, better to try a foreign hospital! She suggested the Christie or Marsden and oncologist agreed. I am v happy with my team and treatment plans but I had to know that I was on the best path forward. Different surgeons etc have different views. In your case if the lung Mets are the only visible ones, intervention from a surgeon specialising in lungs could be good.

Hi @pstack my husband was inoperable in 2020 with multiple lung nodules after folfiri but then received stereotactic radiation therapy in st Luke’s hospital Dublin

Hi @pstack sorry about my typing I rarely do but to continue after treatment he was Ned for six months unfortunately two nodules on right lung and one on left showed up on pet but thankfully was then operated
on right lung 9 weeks ago and is having surgery on left Wednesday hope this is helpful to u he is doing well so far tthank god

Thank you Therese, I will be starting chemo again in April/May to tackle the lung mets. They are v small and only barely grew since last year. Really hoping after next chemo Folfiri I think) I might get to a point I can have radio. Best wishes to your husband.

Hi @pstack My husband was diagnosed in January 21 with a 13mm lung nodule in his left lung, suspicious cells in his right and 2 lymph nodes resting on his voice box. Due to the position of the lymph nodes told inoperable and the only option was chemo, he also has the KRAS mutation. He is on fortnightly folfiri and we had the brilliant news shrinkage shown on 2, 3 monthly CT scans. But after a chemo break and Covid 8 weeks in total off chemo the left lung nodule had grown to 17mm so had a course of radiation and now back on chemo. We are awaiting the results 🤞🤞. Wishing you all the best.

@summerflowers wishing your husband the best. I'm now waiting for my next scan in April to see how my lung mets are behaving. In the meantime I've started the Care Oncology Clinic protocol (only on my first week) to see if that can help slow down the lung met growth. I'll try anything now to keep the cancer at bay.

I am the same as you. Liver mets disappeared in 2018 and I have small ones in my lungs and have fortnightly chemo. 5 years today since my diagnosis. I had 12, 15 and 19 week breaks during covid and yes tumours grew but not by much.they have always shrunk again once back on treatment. Good luck.

Thanks @Deano65 that's great news for you. Are you on continuous chemo for the last few years with breaks as you mentioned? Which chemo, just FU? I'm still not back on chemo, due to start Folfiri in September, my onco is letting me enjoy the summer. I have 20+ small mets so not confident I'll get rid of them all. Thanks for sharing. Patricia

I've had 75 chemo sessions. Panitumab and FU. I had irranotecin for first year. I have always had 6 chemo and then 6 week break due to NICE restrictions on Panitumimab. I have 3 tumours in my lungs but had lots of small ones when diagnosed. I've not had radiotherapy as he said the tiny ones which appear to have disappeared will still be there and will grow back. I'm still on first line treatment at 5 years. Wishing you well.

My liver mets have never returned and my lung multiple leg mets disappeared after 12 months in 2018 but 3 came back after 3 months. Bowel tumours have never returned either. My last scan showed a slight increase in size 2mm. Just restarted chemo this week as he wants to know if its due to 6 week break or if my first line treatment has run its course. Had another scan this week at the very beginning and will have one at the end of 6 sessions. Will see what happens. I'm sure that in 5 years so much will have been introduced on treatment paths so still hopeful. I'll worry about that in august if I need to. Enjoy your summer. Have lots of adventures. Manor insurance are good